Here some suggested organisations that offer expert advice on SN.

support/information sharing thread for parents of children with Cerebral Palsy

(1000 Posts)
inhibernation Thu 03-Nov-11 12:59:17

Hi, was wondering whether you might find this useful? I've got a 2 year old dd with CP and have received many messages of support on my own thread (previously ladylush) but would find it useful if there was a general thread that anyone could pop in and out of - so wondered if you might too. Sometimes I have to wade through pages of the SN board to find anything that relates to CP so it would make access easier.

Let me know your thoughts.

TIA smile

survivingsummer Thu 03-Nov-11 13:12:01

Yes please smile would be very useful!
I also do the same - not that I don't find other threads interesting but just don't have much to offer blush

My dd hasn't a 'technical' dx of CP (yet) but was brain injured at birth and has some mildish physical difficulties. She is 4 and has just started MS primary school.

inhibernation Thu 03-Nov-11 13:19:56

Me too smile Actually tbh I don't have a lot of knowledge about CP either but that's one of the reasons I come on here smile

inhibernation Thu 03-Nov-11 13:21:25

How is your dd finding school?

survivingsummer Thu 03-Nov-11 13:29:18

She's doing great thanks! She somehow stays upright in the playground most of the time shock and has even learned to write her name! We're looking at re-referring for OT as she's likely to be a computer user long term due to fine motor difficulties.

Hope your dd doing ok?

inhibernation Thu 03-Nov-11 13:41:29

Great to hear that she's doing well smile My dd is only 2 and we are fairly new to this as she was only diagnosed in April. She has spastic diplegia and it seems to be mainly her legs that are affected, and worse on one side. She doesn't have any cognitive problems and her speech is very good. We have had mixed professional views on her prognosis (mostly positive though) but the main concerns are her risk of contractures and hip dysplasia (which she already has early signs of). She isn't walking but uses a kaye walker or walks holding our hand. She walks on her toes but has splints to correct that. She goes to a main stream nursery for 10 hours a week and really enjoys it.

skewiff Thu 03-Nov-11 20:35:44

Yes I would like a special thread for CP please. I also wade through all the special needs stuff looking for things that are relevant and helpful for my son (who has CP). And there are not a lot of people who come on here about this.

Please could we have a special CP thread mumsnet?

survivingsummer Thu 03-Nov-11 20:36:05

Sounds like she's doing really well - I can remember months of my dd practising walking holding our hands! My dd has fluctuating tone and a weak trunk so more on the 'athetoid' side and we also had a mixed picture about her prognosis from the various professionals involved. However, even the teacher is shocked by her determination - if anyone tries to help her with anything then woe betide smile

inhibernation Thu 03-Nov-11 20:43:23

skewiff - we can use this one until mumsnet give us our own. I'm sure parents of children with other diagnoses would like their own thread as well. Maybe the SN board could be refined a little............?

We need a few experts to come along..........madwomanintheattic, hairymaclary, the lady who practically diagnosed my dd (whose name I can't quite remember - but should!).

inhibernation Thu 03-Nov-11 20:45:14

survivingsummer - yes I am sure you're right. That determination surely must help. dd is similar. Has a tantrum if I suggest she goes in the buggy or I carry her grin

anonandlikeit Thu 03-Nov-11 20:49:22

Hello all, yes a CP thread would be good mos tof the threads on here do seem to be asd related... not complaining as ds2 has ASD too so find both very helpful.
DS2 is 9 has mild CP (Spastic diplegia),autism and a couple of othe bits going on.
Be good to share knowledge & stories smile

inhibernation Thu 03-Nov-11 20:52:42

Good - that's four of us now................roll up roll up grin

2old2beamum Thu 03-Nov-11 20:54:06

yes please find this site very useful but not an awful lot on CP DS 12yrs CP. deafblind (for us so sad) and epilepsy. Would be grateful for any support.
xx

chatee Thu 03-Nov-11 21:02:29

rolling up too..as i found this site so helpful when dd was being investigated and first diagnosed
dd 11 originally diagnosed spastic diplegia at 2 yrs 4 months but at 6 years changed to spastic quadriplegia
look forward to getting to know you all and us all helping each other out

inhibernation Thu 03-Nov-11 21:08:12

2old2beamum - sorry to hear about your ds. That's one of the many frustrations about CP - it's manifestation varies so much from one child to another. I've read of many developments in the treatment of deafness and blindness - is there anything that may be able to help your son in this respect? And how often does he fit? Is it a type that he may grow out of do you know? Does he like school? What support do you get? Sorry for all the questions blush Tell me to bugger orf if it seems a bit intrusive - I won't mind smile

inhibernation Thu 03-Nov-11 21:10:04

Hi Chatee - have seen some of your older posts when searching the archives. How is your ds doing?

inhibernation Thu 03-Nov-11 21:10:29

Oh sorry - I mean dd blush

itseasyifunohow Thu 03-Nov-11 21:23:40

2old2beamum have you contacted Sense the charity that supports children who are Deafblind and also children who have single sensory loss with additional needs? It sounds from your post as if you need a bit of support and as Sense is a national charity there may be someone who could give you help, especially as you DS is coming towards the transition stage of his schooling

www.sense.org.uk will give you all the information you need. Good luck!

Sevenfold Thu 03-Nov-11 21:26:50

wow had to post.
I don't post on the sn topic anymore, but what a good idea. my dd is 16 and has cp, and so think a thread just for CP is such a good idea,
hope it goes well.....think I will be lurking a lot

inhibernation Thu 03-Nov-11 21:33:25

I'm so glad people think it will be helpful. When I first had an inkling about dd, I found it so hard to gather information. I've learned a lot from madwoman and sneezecake (yes, I remembered!) and hairymclary et al.........but I didn't want to have to start a thread everytime I want to talk to them. It's not just about me..........I thought we could all benefit from it. And it's not just the seasoned mums/grans I've drawn support from - it's the people who are just starting out on this crazy journey (like hildathebuilder).
I just think it would be great for us all to have a forum where we can meet - regardless of how old our children are.

chatee Thu 03-Nov-11 21:40:44

hiya inhibernation'
my dd is doing quite well at the moment, has just transferred to a high achieving mainstream secondary school(her only barrier to education is her physical disabilities-cognitively on a par with her peers (in fact got level 5 maths at ks2 and level 4's for everything else!) and seems to be settling in and enjoying it...she was 'wrapped up in cotton wool' a little too much when she first started and it really wound her up (she has never and will never be wrapped up or treated any differently to her sibling - it's a big bad world out there and she needs to know that!) but after a quick meeting with senco they soon realised that she wants to be treated like all the other year 7's and if she falls over then she falls over and faces the consequences...but at least allow her the independence to do things- admitedly she is tired now(not really a major issue at primary)and can be a pita when she comes home and is waiting for food so now I encourageher to go straight upstairs(to avoid any arguments)and deliver a glass of milk and cereal bar and this seems to be working(fingers crossed)and have also encouraged her to use her wheelchair at school for transferring longer distances between lessons-which i know she has done once or twice this week...so I'll stop waffling on now and ask a little more about your little one as I recall she has spastic diplegia? dd was originally diagnosed with this but I knew at around 3.5 years that her arms were affected(she knew exactly where she wanted the piece of jigsaw puzzle to go but could not co-ordinate her hands to do as she wanted- imagine major strops and flying jigsaw puzzles)so I was not overly worried when her diagnosis was changed as just saw this as a means to ensuring she had the best support I could get for her- it didn't change dd she was still her determined self.dd used a k walker(2 yrs-9 yrs) and still wears splints- please persevere with any child resisting wearing splints as I have seen quite a few cp kids with awful gait or undergoing surgery(earlier than they would have needed) as the child'refused' to wear the splints...remember they are the child you are the adult, even if it takes bribery to start with until they are old enough to explain and reason with...my dd would be in a wheelchair now if I hadn't persevered(that is not aimed at you personally by the way-but for anyone who reads this)but instead she is walking unaided(well aided by splints)and is so grateful that she can.
again physio is your friend whilst they are little and at home as you can incorporate it into a play routine or whilst watching a fave tv programme just 5-10 mins each time(a few times a day)will make the difference,
swimming from as early as possible-my dd loves and says she feels free-has this year actually swum at the GB National Disability Championships at Sheffield and through her sport has developed so much confidence and learned that you have to practise to get better and tfy hard all the time(and this has equally shown in her attitude to her school work and life in general)Horse riding with RDA when my dd started she could not sit unaided, now she can walk on and trot by herself....I will shut up now but feel free to shout if you have any questions..

chatee Thu 03-Nov-11 21:42:33

hiya Sevenfold,
hope you lurk and post as it would be nice to 'chat' with a parent of older child with cp

inhibernation Thu 03-Nov-11 21:50:09

Chatee - dd wears her splints most of the day. She doesn't seem to mind them thankfully. I wish I could say Physios were our friend sad Physio itself might be but dd is at the age where she dictates what she will and won't do and as you know, a distressed CP child is a stiff child! But we try to incorporate it into play and we aim for an hour in the standing frame each day. So glad to hear that your dd likes swimming smile We just enrolled dd into a class which is held in a hydrotherapy pool - not SN but chose it cos the water is warm. Am really hoping she can learn to swim as the independent movement would be so great for her. She is on waiting list for RDA - excited about that. Think she will love it smile

2old2beamum Thu 03-Nov-11 22:04:44

Thankyou for your interest inhibernation and itseasyifunohow. No I don't think it is intrusive please don't bugger off. I feel very isolated at times, his problems are many. He has fits 5-6 a week (but how many are missed)
SENSE have been brilliant especially over education (he has a 1-1) BUT has no SW. Our biggest problem at present is neurogenic pain he is so distressed it makes staff at school cry, his ma and pa too!
We do get respite so we are grateful. Thankyou for letting me ramble on. xx

anonandlikeit Thu 03-Nov-11 22:04:54

inhibernation - We carried out the majority of ds2's physio in the bath. I found he tolerated stretches much better in water. Then once loosened a bit we would continue it when drying him off. Lots of tiggles & rough & tumble play & most of the time he didnt even notice.

It also meant he was very clean as we bathed him night & morning smile

2old2beamum Thu 03-Nov-11 22:12:23

Sevenfold haven't you got him a job yet!! (previous AIBU post) pleased to see you!

HairyMaclary Thu 03-Nov-11 22:12:56

hello! - mostly marking place as have to see our MP tomorrow regarding DS, will catch up after it;s all over!

slowburner Thu 03-Nov-11 22:15:55

Can we join please?
My DD is 15 months and suffered oxygen deprivation at birth, due to an error by doctors. We were warned she would most probably not have any quality of life and we were told at a day old she was almost certainly blind. She was cooled and made a staggeringly impressive recovery however she has microcephaly, svere febrile seizures (3 trips this year to hospital, one a week long and needing hdu) and a continued shoulder stiffness.

Because DD is doing well we were told no chance of CP, but last week physio who we never see anyway saw us to discharge DD and said she was now classed as having hemi. hmm I fell apart. DH fell apart. We're now determined to access some better therapy and see if we can overturn that dx, portage have been the only support we have had so far, they've even agreed to give us extra sessions until we can get some decent therapy structure in place for DD.

I'm interested in finding more HIE mums to talk to and also talking to those who have used constraint therapy.

Sevenfold Thu 03-Nov-11 22:15:56

2old2beamum please don't confuse me lol it doesn't take much.
dd has cp, ds has teenagerdom(or should that be doom)

chatee Thu 03-Nov-11 22:16:03

inhibernation- I can remember dd at that age as we would take her to the hospital for physio and she would start crying near the entrance and by the time we had used the lift and got to the childrens physio she would be as stiff as a board(and on the last occasion covered in vomit!) and we couldn't lift her out of her buggy-we had about four wasted appointments and our lovely physio then decided to do home visits...during one of the home visits she told me it was good that dd had such a stong character and was determined as she would need these characteristics to go far in later life
dd never got the chance to go in a hydro pool(other than after she had been in a hip spica cast for 8 months and got 3 visits in her first week out of cast whilst an in patient and having physio shown to us)and we continued going every other day to our local pool for nearly 9 months(as I could walk there with dd in her pram) but we then moved house and it was a car journey so it dropped to twice a week and now as she swims as her main hobby we are there three times a week....can i say try not to put arm bands on your dd and use a ring/baby seat/ life vest or shark fin so that she doesn't have restricted arm movements....good luck with it i hope you both enjoy it
oh the joys of the standing frame- you are bringing back so many memories- we used to bring out the musical instruments- a drum (she loved banging it), shakers,tambourine, piano(and these generally only came out when the standing frame did so she was quite happy to go in, and we used to put "fun song factory" videos on the tv and we would both sing away.
we also used to paint as we got an easel so it was easier for her to do it standing up and we used to bake fairy cakes and then decorate them
anything really just to encourage her to go in and play games that involved passing and posting things into holes(putting stuff into her left hand(as that was weaker) it really is so much easier when they are young!!
oh i also got dd a specialist trike (look into that now as it can take a while to source funding and actually get it delivered)-they start at 3-5 years old, then 4-8 years, we were lucky the rep who came out said to get the 4-8 as dd was quite long in her legs and it actually lasted til she was nearly 10 so it was good value
try encouraging a stroppy 10 year old to do physio...any suggestions from experienced parents gratefully received

Sevenfold Thu 03-Nov-11 22:16:44

what is constraint therapy.?

slowburner Thu 03-Nov-11 22:22:27

Constraint therapy is where you restrain the 'good' arm or hand and then do intensive play therapy on the weaker hand. Some people think it is cruel, I think t hat if done for short periods of time it can enable a great increase in functionality, I don't know much more about it except that our physio flatly refuses to do it until DD is older as they use a hard cast, we use a tubigrip maybe twice a day for 15min at a time, it's already paying off but I am slightly at a loss to the games to play while she is doing it!

Hth

glittery Thu 03-Nov-11 22:48:59

seven year old ds with Dystonic CP here, dont post as much as i used to as like Anon, i found it to be more ASD related threads on here recently so havent felt like i could offer much...oh yeah and im never off Facebook! lol

inhibernation Thu 03-Nov-11 23:34:29

chatee - we are paying for the swim lessons in the hydrotherapy pool. Our PCT is rubbish. We only get physio about once a month and it's quite basic. The onus is on us but I work 3 days a week in a demanding job and I sometimes resent the responsibility of physio when I am off. I know that sounds bad....sad I just worry that I'm not doing enough or not doing it properly and I wish I had more time with dd doing normal things like scrunching her up next to me on the sofa and reading a book. But the PTs have made me feel so neurotic that I now feel guilty whenever we do these things and think erm GAITERS..........need to put the bloody gaiters on! We pay for private physio once every two weeks. It was weekly but we couldn't sustain that and the travel was tiring for dd.

inhibernation Thu 03-Nov-11 23:43:39

2old - good to hear that you get respite. It must be very hard for you and his teachers to see him distressed. Don't feel that you are rambling on........that's what this is for <hugs>

inhibernation Thu 03-Nov-11 23:46:39

anon - good tip about the bath but dd can't long sit unless she props herself up with her right hand. How did you prop your lo when doing the stretches?

inhibernation Thu 03-Nov-11 23:52:56

slowburner - I think I can understand a little how you might be feeling. dd was very prem (30+5) but she did very well in scbu, all tests clear. No one ever mentioned the possibility of CP - we felt very lucky and relieved that dd had apparently emerged unscathed apart from slow weight gain, undiagnosed tongue tie and pretty awful gastric reflux. She was discharged from paediatric care only 10 weeks after she was born (and that was just a one off review).

I've gotta go.............she's woken up and is yelling for me. A new habit she seems to have acquired over the past two nights. Joy hmm

madwomanintheattic Fri 04-Nov-11 03:44:20

hello! <waves> i do try and keep an eye out for the cp posts but they are sometimes few and far between grin so this would be a great idea.

i think i know most people (glad you 'fessed up to your namechance inhibernation - i'm really bad at spotting namechangers grin) but not sure about slowburner <waves>

dd2 is 8 now, originally dx spastic quad cp (she was also hie baby, slowburner - med neg case still ongoing. born term at 9lbs but spent 5 weeks in scbu with no suck/gag/ swallow reflex. tube fed.) but was re-dx athetoid cp at 4 as we requested a re-dx due to total change in presentation. we were told it would be unlikely that she would walk or talk over the course of the first couple of years. she's had full slt, physio, ot from birth etc.

at 8 she walks, runs (sorta), skips (sorta), does a mainstream ballet class (when we started at her first ballet class, she couldn't stand independently. this week she won the dancer of the month award. grin effort over ability grin), skis, skateboards (ok, we adapted it with a handle grin) talks, shouts, sings (badly - she was in the choir of the last school and how they ever let her stay is a masterpiece of dda over common sense grin) goes to brownies, swimming lessons, and this summer went white water rafting. next year she wants to try rock climbing. grin

it's long been expected that she'll end up a ft keyboard user, and she's just started using her netbook ft in school. she also runs her own story writing club at lunchtimes and intends to be an author. and <whispers> was assessed at working between 5 and 7 years ahead of her peers cognitively at 5. she taught herself to read at 3, but we didn't know. grin blush so she usually has two ieps (ipps here) running at a time - one to deal with her physical limitations, and one to try and work out how the heck you continue to challenge a bright kid with physical limitations. she's been through the run of 1-1s, scribes etc.

we now live in the beautiful canadian rockies but have been through the uk school system and done the sa+ and then statementing thang. i was also a school governor with responsibility for sn. dh is ex-military and so we've moved a lot, which has meant lots of setting up new health and ed teams for dd2. oh, and emigrating with a child with a disability was a real eye opener. shock

we used to use 'gloop' with dd2's standing frame grin it was useful because she also had a lot of sensory issues (oh, yeah, we've also been round that loop - i tend to forget different stuff along the way!) so was more concerned about avoiding the gloop than fussing because she was in her frame.
we used a breastfeeding pillow to prop dd2 with her gaitors initially, but did lots of stretching with her lying on her back to prevent the sitting/ propping issue.

a favourite way of arm stretching was to buy those spangly glittery majorette batons from the pound shop and use those - have dd/ ds lying on their back in front of you, hold the baton out in front of you with both hands and get dd/ds to hold it at arms length (hold their hands onto the baton hand over hand with yours). and then sing nursery rhymes and move the baton - the grand old duke of york works a treat - all that up and down, you can eventually get right to the floor above the head! grin the spangly glittery batons can hold attention too. we used to get enough for siblings too, and all of the kids used to lie on the floor and 'march' together. grin

am loling at the squawking too. dd2 cried solidly for the first two years, and then we had a six month reprieve, followed immediately by six months of night terrors with the whole 'is it spasms?' 'is she in pain?' (baclofen?) routine. or is it just plain old night terrors. grin <sigh>

right, i'm boring myself now.

will try and keep this in my 'threads i'm on' - great to see a bit of a cp community developing. grin

madwomanintheattic Fri 04-Nov-11 03:59:02

re constraint therapy - yy, we used to do it all the time with dd2 - not particularly in a 'session' but as part of the normal daily routine. so we would just restrain the good arm at different times during whatever stuff we happened to be doing. you don't need casts or tubigrips or anything technical - just hold the good arm still out of the way. grin we used to work on it during physio as well, but tbh i think it was the 'informal' stuff that paid off. the formal aspect really involved just constraint and reaching exercises with something really exciting... those flashy light thingys from the pound store and hawkins bazaar are great motivators.

the other thing with arms/ hands/ fine motor is it can make a huge difference how supported the trunk/ pelvis is during the exercises... but then you get into making a decision whether you are working on fine motor or trunk. tricky! dd2's fine motor is freed up when she has very good trunk/ pelvic support, so it was really important for nursery/ early years to have fantastic seating support, and also for feeding/ self help. these days we actively give her less support so that she has to work on her core as well...

i know i'm preaching to the converted/ teaching grandma to suck eggs in most cases grin blush sorry! might be helpful pondering for anyone new to the dx though. blush
<excuses ramblings>

intothewest Fri 04-Nov-11 09:17:03

Another one here !

DS is now 8-He also has asd and SLD,but is making progress.He walks/runs(in his own way)He falls down a lot..but gets back up. When he was tiny I didn't think he would stand unaided;but again I think his strength of character shines through.

He has gone to a SN gym class since he was little;goes swimming,trampolining and riding when possible. I think the RDA was brilliant,but the school don't go often.

He will always have a 'funny' gait,but I'm glad he come so far smile

Haka Fri 04-Nov-11 10:11:15

Message withdrawn at poster's request.

Vathana Fri 04-Nov-11 14:02:36

Hi all,
I am a physiotherapist in the south london area and I am a specialist therapist who is trained in Bobath therapy - a treatment and handling. I have recently set up a private practice and one of my special interest is working with childen with CP. From the thread a treatment that might be quite useful to try is hydrotherapy. It is a great way to get stretches done and allow some independent movement. If anyone would like any specialist support please see my web page www.physiotherapy4kids.co.uk

Haka Fri 04-Nov-11 14:45:53

Message withdrawn at poster's request.

hildathebuilder Fri 04-Nov-11 14:55:29

Hi, I'll join too especially afetr my namecheck. I read through the ASD threads then tell myself not to as they worry me silly. Also sometime the hypermobility ones as we have that too, but all fo that less relevant than the CP.

DS is now 17 months corrected and has been cruising for the last 2 months, slowly progressing to walking forward with his walker although he is more interested in picking up the coloured bricks and throwing them out and at me (which hurts but he thinks is hilarious) He is also "bear" walking, and beginning to speek. On which point can I ask those with older children whether speech was slightly delayed. I think DS can say yes, no, more, again, hello, bye, mam, dad and chelle (his key worker) but the words are fairly indistinct a lot fo the time. Is that normal. his physio thinks his mouth is fine, he eats well (now using a spoon and fork) but he seems a little behind in language and I can't help but wonder.

We also now have splints, which DS tolerates although has got in the way of his crawling (which is back to bunny hop and commando a lot of the time from almost conventional crawling) and are supposed to get lycra shorts for this winter but they didn't fit so have been sent back. Again those who have splints with older children any tips, any views, any idea how long we might need to expect to have them for.

We got DLA last week (only 5 months after we first applied - 5 weeks after we asked for the reconsideration) and have had yet another unsatisfactory paed appointment about his breathing (if you cut down the inhalers and anti -reflux stuff the odds of hopsital this winter will be slightly higher than 50% if you don't they are 50% - it's up to you). This was after DH told the Paed I was refusing to go as I was soo fed up with the hospital.

Buried my mil last month, dealing with her estate, and my work are trying to move my job 60 miles, away from the local very good hospital, so still not calm here, but I am surprisingly fine with all that. I sometimes think about dda by association but no worries there. Just got to get on with it i guess.

2old2beamum Fri 04-Nov-11 15:11:08

Haka am interested in your DD's screaming, I think we are having the same problems spasms muscular brain reflux despite being jejunal fed all ruled out. Latest diagnosis neurogenic pain being treated with propranolol with varying success next will be ammitryptiline. Wondered if you have any experience. thanks.

Tonicwater Fri 04-Nov-11 16:00:59

Hello. My DD is 18 and has CP and other complex additional needs. She has an accuired brain injury as a result of an illness when she was 2.8.

madwomanintheattic Fri 04-Nov-11 16:48:46

hilda, dd2's speech was very delayed (and unexpected, given that we were told she wouldn't be verbal grin) so she didn't really start to speak until 3ish. she needed 1-1 mostly for communication when she started school and her speech is still dysarthric. she has lots of coping strategies though - swallowing to get rid of excess saliva, and lots of reminders of 'use your lips'. grin

we didn't realise until she was 4 or 5 that she doesn't have any lateral movement of her tongue, which probably explains why she's always been so very hopeless at all of those licking slt exercises... slt now say that her speech is as good as it will be (because it is a neuro issue rather than anything else) and so it is now up to school to put strategies in place if they need to (ie for reading aloud to the class). she was a drooler too (still is somethimes) and started school wearing a bandana in a matching red to her uniform sweatshirt. grin this later progressed to wrist sweatbands so she could dab drool away, and these days she manages without.

a site i like for oro issues (particularly for those tube fed or having other swallowing or pre-communication issues) is this one (with apologies to those who've seen it before grin) lots of ideas for oral stimulation and pre-communication work. i like the 'feed your mind' links. it was put together by a specialist slt.

the only time we can't understand her now is if she gets upset or wildly overexcited, as her tone changes and she can't get her mouth to work properly. grin

we found the nuffield verbal dyspraxia programme the best tool for bringing on clarity of speech - as well as the usual blowing, licking oral games the slt recommends. we could tell if she hadn't done the nuffield work for a few days as you could her voice slurring more, but the oral games didn't seem to have the same effect on speech. v interesting.

Haka Fri 04-Nov-11 18:35:56

Message withdrawn at poster's request.

sneezecakesmum Fri 04-Nov-11 21:29:50

I have heard of dystonic storms - one dystonic movement that goes into hyperdrive and ends up involving the whole body? Neurologists should know this if I just read it up somewhere on the net!!

Was a bit shock when I saw restraint therapy, but ok now I realise it is just restraining the good hand lightly to let the weak one work. DGSs right hand is his forgotten friend and we are working on this as well as all his other issues. I found the Hemihelp DVD very useful as it has a big concentration on encouraging the weaker side, even though DGS is a quad boy, it has loads of good suggestions.

DGS (3) is a lot like madwomans DD in his spastic quad dx but we think he is more athetoid, but without much in the way of dystonic movements, a few little bollywood dancer moves with his hands now and again, but mostly fluctuating tone, weak trunk and atrocious balance. (we are doing sultana picking up - pincer grip - practice, which seems to be getting there btw)!!

It is a good thought to have a sections for CP. SKIUK is pretty good, but buggered if I can access it properly, despite paypal verification as advised, must be quite thick...) Scope is also pretty good, but very slow going, so MN CP is a GOOD idea smile

For poor hand skills a touchscreen is a good idea, and it also encourages good sitting, cross legged, kneeling, side sitting resting on weak hand, and high kneeling when the screen is on a little bench. DGS is such a telly addict and cbeebies have a switch and touchscreen section for SN.

DGS is rubbish in his AFOS but we persevere for an hour a day (on a good day blush

Thank you hybernatingladylush for starting this, will keep up as always after good ideas. Found out lots of info recently for seating problem so an advice sharing, supportive thread is brilliant.

anonandlikeit Fri 04-Nov-11 21:45:05

INHIBERNATION - when ds2 was a baby i just got in the bath with him, then we had a spongy bath/support chair from the physio. It meant i could ahve two hands free to do his stretches in the bath.
Also dont give yourself a hard time about not doing enough, remember you are a mum first & foremost & doing all the normal things is the best therapy.
DS2's physio recons that being shoved over & rough play with his older brother did far more to help develop his reflexes than any therapy.
I remember when ds2 was about 18 months, (still with poor head control limited arm movement) I walked in to the dining room to find his 4 yr old brother hanging him off of the sofa by his feet. Aparantly it was to ehlp his kneck.. he'd been watching us doing exercises & thought he'd help.

DS2's autism is much more disabling to him than his mild CP.

2old2beamum Fri 04-Nov-11 21:54:16

thankyou everyone for your support especially about dystonic storms this could be the answer, but what worries me with midazolam is what we use if he has a prolonged seizure what could we use? we are 30+miles from nearest
hospital.
Thanks OP for starting this thread.

inhibernation Fri 04-Nov-11 22:40:59

Great to "see" you all here smile
Anon - thanks for the supportive words. I suffer with a lot of guilt anyway so it doesn't take much. I can't bath with dd cos I get very cold in the bath unless it's really hot. I suppose I could get in for 5 mins but I'd then be shivering and have to get out..............and dd would be trying to yank my "buttons" (nipples - which stand to attention when I'm cold!) Sorry if tmi grin
Hilda - hope you are ok - sounds like you have a lot on your plate. dd has splints. We sort of expect she will always need them.
Madwoman and Sneezecake - thanks for joining us. We need some experts on board.

I never realised how many of us were here lurking grin

slowburner Fri 04-Nov-11 22:54:01

We use midazolam for DD as she has seizures which are tied to temperature but which do not stop and she goes into status, ends up paralysed too afterwards. The one time since having it we have used it at home it worked so fast it was a case of blink and you'd miss it, we had to wait till she had been seizing for 5 very long minutes before we could give it, by which point the paramedics had arrived as she couldn't swallow and I was concerned about her breathing. I believe you can give two doses of midazolam IF it has been agreed by your neuro?

Do other midazolam users have a care plan in place? Ours arrived today, 5 months after we were prescribed the drug shock

Sevenfold Fri 04-Nov-11 22:59:23

ok I know I said I don't post in sn now, but I really deel on threads like this where a lot of you have such young children, sometimes it is nice to hear about an older child(or sometimes very scare)so....
my dd is 16 she has athetoid cp and is severely disabled, oh and epilepsy(I foget that as it is controlled)
she goes to a brilliant sn school and has been there since nursery, she has a good peer group and the sn school allows her full inclusion and allows her to explore being independent(things like driving her powered chair)
the worst time was the first 3 years, little support, doing conductive education which she and I hated, just horrid, but once she got in the system, it got better,
she has blossomed at school, yes she is behind her nt peers, but in her sn world she has done well, with the help of certain medicines her epilepsy is controlled, her extra movements have been controlled (she can now sit on the sofa without sliding off)
a couple of years ago she had her first op, to sort her dribbling out, it worked, she also became dry at about 11,
I could go on, but the reason I have posted this is just to say that the future will look really scarey(we have 19 plus to worry about now) but even though there is no instant cure for CP, there is nothing hopefully to stop a lot of children from having very happy lives.
(disclaimer my dd has no health issues)

inhibernation Fri 04-Nov-11 23:10:32

sevenfold - thank you for your kind words of reassurance. It is good to hear from parents of older children with CP. I would love it if dd can go to her brothers school (mainstream) but if she does have to go to a SN school it will be because it's the right place.........access is an issue we really need to consider. It's great to hear that your dd has done well smile

Sevenfold Fri 04-Nov-11 23:14:26

she always wanted to go to her brothers school, but it would have meant exclusion for her.

madwomanintheattic Sat 05-Nov-11 00:53:35

i used to use skinuk a lot, but drifted off when i discovered mn. i'd pop back periodically, but they implemented that join and pay thing and i just can't work out how to use it now, so you're not alone! grin

i think one of the last things i posted was that we were moving to canada. grin i used to go to a few meet ups when we were in the uk, they are a lovely bunch. they always used to have a really good core of cp parents, but it looks like we have lots here now, too! grin

Haka Sat 05-Nov-11 10:41:08

Message withdrawn at poster's request.

sneezecakesmum Sat 05-Nov-11 12:19:15

Me...expert...[laughing head off emoticon!!!] thanks anyway smile

madwomanintheattic Sat 05-Nov-11 19:19:47

how's the head switch going, haka? great that you eventually got it sorted, sometimes it just takes so long to work out which comm method works.

inhibernation Sun 06-Nov-11 08:53:28

Haka - it must have been so frustrating for you to be ignored by healthcare professionals all that time......only for your questions to be answered by a SN forum. It's really sad that this is the reality that a lot of us are experiencing. dd's CP wasn't picked up despite me taking her to HVs to be weighed every week and asking to see Paed twice. Unfortunately I now have a pretty low opinion of both groups of HCP. I do realise that CP often doesn't become apparent until later but in dd there were pretty clear markers - and at the very least I feel they should have referred her for physio when we first raised concern. And how they didn't notice her high tone.................hmm What extra support does your dd get at school? Does she like school?

Haka Tue 08-Nov-11 08:39:23

Message withdrawn at poster's request.

survivingsummer Tue 08-Nov-11 11:07:32

inhibernation - they seem reluctant to dx CP in some, especially milder cases and I'm not really sure why? It is shock that you weren't referred for physio.

How long did others have physio for? Ours seems to be going on indefinitely (4 years now) although nothing has changed for my dd - we go every few months and do more of the same exercises hmm Do they keep seeing children until they hit puberty in case of any issues there? I will of course ask at my next session but just wondered especially as some of you have older kids here!

madwomanintheattic Tue 08-Nov-11 14:57:20

dd2 only really gets physio once in a blue moon now - but we stay on the books so that we can be seen if we need to without waiting on a new referral. for the last couple of years she's had one six week block (so 6 sessions) a year - tbh it's fine, and we were doing it in the summer so we didn't have to drive to the hospital in the snow lol. no idea what they'll offer here, we've just completed the referral forms for all of the new team, so it's a wait and see. school have been advised that they do need to change her coding back to severe by the outreach team though (it got randomly changed in transition when we moved) so now that's been sorted, things should start happening again. grin

enjoy your conference, haka.

Haka Tue 08-Nov-11 15:08:46

Message withdrawn at poster's request.

madwomanintheattic Tue 08-Nov-11 18:56:20

that's fab - i love it when you get to meet a really great role model like that! i do some voluntary work for a pan-disability organisation and it is great when we get adults with disabilities themselves volunteering or being paid to instruct/ help out with the youth.

dd2 wants to be a ski instructor now, because a 17yo friend of hers (with cp) that can't walk unaided has just been selected for the provincial ski team and intends to train to be an instructor. grin

yy re severity and access to physio - for 'mobile' kids a lot of the stretching is done themselves as they walk/ move around, so it does cut down on time and effort. i know a couple of folks (adults) who routinely go in for tendon release as they don't find their own physio routines that beneficial and have opted for the regular surgical route though <sigh>.

how's she doing with her head switch?

madwomanintheattic Tue 08-Nov-11 19:00:08

i've spent the last two weeks helping out writing grant applications for sit-skis grin the one i'm helping out with now is for hand cycles and a trail rider, and some fittings for kayaks (booms) to stop them rolling grin and some adaptations for wheelchairs to kit them for rough terrain. i'm really excited that the disability community might have some shiny new equipment to play with in this neck of the woods soon!

sneezecakesmum Tue 08-Nov-11 19:13:30

It is always very reassuring to read of young (and older) people with CP who have not let their CP define who they are but live full lives despite their disabilities. My DD (DGSs mum) has met one or two such inspiring people through her job too, and although DGS is not severely affected it is always reassuring to hear that anyone can succeed. She also worried about bullying in school but a counsellor who's child has issues with mobility said they're more likely to be protected and looked after by the children than bullied. smile

Today DGS managed to say bye bye with the help of a raspberry blowing session. It was in the right place as I was off home and makes a nice change from all the 'd' sounding words! DD thought he said shit the other day but I'm doubtful as its mostly d sounding words!

Inhibernation. DGS was taken round a fab SN school (unbelievable amount of equipment/technology) but the head teacher thought he would be better in MS, and your DD sounds way too mild to me. She would have loved him to go there though as he had a 'lot of potential' confused Most MS schools can accommodate a child with disabilities so dont worry on that score.

slowburner Tue 08-Nov-11 19:15:15

Re the physio for mobile children we notice it is getting hard to get DD's shoulders to maintain movement now that she is not crawling everywhere, we desperately hope think that her shoulders will improve once she manages to relax and not hold herself stiff. Our physic is fecking useless.

madwomanintheattic Tue 08-Nov-11 20:02:40

how is her core tone, slowburner? we find that with dd2 her upper limbs are freed up when her trunk is well supported (low tone in the trunk is fairly common but it sometimes takes a while to find the link between trunk tone and limbs/ fine motor) - her fine motor sounds quite good though, so i wonder if the spasticity in her shoulders is linked to her trunk tone or not... what seating are you using for her self-feeding etc? is she quite well supported around her pelvis or trunk?

if she's concentrating on walking you may well get some intention tightening as well. dd2's tone was fairly typical, in that it was reasonably low, but on effort it would increase exponentially and become high tone - even in areas that weren't supposed to be under effort.

we always tell dd2 to 'relax' her ankles (particularly when i'm trying to cut her toenails lol). it's totally counter-productive as it is high tone, not holding herself tense, but it's human nature to say 'relax!' i think. grin and when she became verbal at around three, she would 'talk' with her shoulders (it's really common for kids like dd2 to raise their shoulders with the effort of speech) - she still does it a little now, but it's nowhere near as noticeable as it was.

(i'm just wittering in case you spot any similarities really - ignore if nothing rings any bells!)

what is the physio doing with her? are you doing any gym ball work? or wedge stuff? balance tasks?

survivingsummer Tue 08-Nov-11 20:04:40

Thanks for that info about the physio - dd is very mobile so I guess it makes me worry about what they might be looking out for in her development confused However, it is good that if there are problems it will be picked up.

sneezecakesmum - re the bullying in school. I've been really worried about this since dd started reception but agree that other children can be very protective about those with physical difficulties. My dd hates being mothered by the older girls but it is lovely that they want to look after her! She has an older brother to fight any battles for her but is hard as nails herself in any case - no shrinking violet grin

JackTheNipper Tue 08-Nov-11 20:16:54

Just lurking, I'm not much of a poster, but DS has a Dx of spastic quad, but we really think he's athetoid, hes 3 and just (fingers crossed) starting to get a few more sounds and words

madwomanintheattic Tue 08-Nov-11 20:31:37

hi jack! ds is like my dd2 then. we got her re-dx at 4. grin she became verbal unexpectedly around 3, as well. grin

slowburner Tue 08-Nov-11 20:39:34

madwomanintheattic our physio is next to fecking useless. Gave us the dx and then walked out the door telling to to just pass to DD's weak side but there was little that could be done. DD has good core tone, she moves well when seated I her car seat or buggy, less so in her highchair, when she is warm, happy and concentrating on something she relaxes all over, we honestly. Thought she was 100 % clear of CP until she started walking and that damn right shoulder started to rise with the effort of balancing.

Liking the ball idea, have a birth ball somewhere which I'll find up. Ty

survivingsummer Tue 08-Nov-11 20:51:37

slowburner - we do loads of ball stuff although dd has low core tone (bain of our lives sad). Can def recommend as is fun therapy! We got a small one 45cm which is the perfect size for dd..

madwomanintheattic Tue 08-Nov-11 20:54:07

yy, the tightening up when walking could be indicative of low core/ trunk tone, so any trunk exercises on that gym ball would be good... the car seat would support her core well, so it would make sense that she relaxes and moves well there etc... with dd2 if she is having to stabilise herself it makes her extremities tighter. (with slightly more involved kids it can lead to 'propping' with the arm on the weaker side - esp at school type desks and chairs with little support) does her highchair have any pelvic support etc? she sounds as though she's doing great with her cutlery and everything though!

physio sounds a joy. <sigh> we've had one completely useless physio (that actually worked in a special school) but the rest have been fabulous. there's always one...

Haka Tue 08-Nov-11 20:59:59

Message withdrawn at poster's request.

JackTheNipper Tue 08-Nov-11 21:10:51

DS does (less now than he used to) fixing, ie when he was in a sitting position he would fix his arms backwards (imagine flippers) to balance himself, since his core strength has started getting better (lots of gym balling) he has stopped doing it so much.
With walking in his pacer, he has to think about which leg is going to move then he tightens up but then relaxes to move is leg, it looks quite strange but I suppose it's just the way he works and I'm hoping that when he gets more used to walking it will come more smoothly?

inhibernation Tue 08-Nov-11 22:09:51

Blimey - a flurry of activity!

Haka - so glad to hear that dd goes to a good school and that they are fully inclusive smilesmile

Sneezecake - the issue with ds school is access. I've been in talks with the school, who are keen to help but there is no money for a ramp to serve the play areas. Not giving up yet though. It would be awesome if dd could go there because she already thinks it's her school and all of ds mates would look out for her.

Madwoman - like your dd, my dd's tone becomes high when she moves. Dynamic tone.

Slowburner - dd has a very positive private PT and I am so grateful in a way that we were forced to look to private PT before getting into the system - because when her new NHS PT delivered her rather negative prognosis, I was grateful that there was another opinion we could seek. New PT told us that dd is probably never going to be able to walk to the shop to buy a loaf of bread but might move around the classroom one day - and that the "good news" is that because dd has good upper body strength, that she'll be a good wheelchair user. I was shock - I think I'd have preferred a punch in the face.
It was so much harder too that we heard this from someone who had only seen dd for 5 minutes.

Soooo, guess what dd did last night..............she got out of her chair, walked about 5-6 steps independently, changed direction, then walked a further 5-6 steps. We had to drag our chins off the floor! So amazing to see smilesmile Still buzzing actually.

inhibernation Tue 08-Nov-11 22:13:25

By the way, we are using a power plate for dd. There is some evidence base apparently. Who knows.............could well be making the difference.

Tonicwater Wed 09-Nov-11 07:34:09

I see some of the talk has been about schools and physio. My DD is 18 and was very lucky. My DD went to ms schools that had support units for the physically disabled attached. Her physio was timetabled into her school week. At secondary school they had a hydro pool and as well as physio, hydro lessons were weekly timetabled.

Now she is at a residential college for the disabled and has physio and hydro there. She also has driving lessons in her powered chair.

Tonicwater Wed 09-Nov-11 07:42:06

When I said driving lessons I mean she is learning to drive her powered chair. smile

intothewest Wed 09-Nov-11 07:54:53

Have been skim reading- DS's physio was pants for ages,but he's just had a good period in school.Now she's going on maternity leave....which is lovely as long as they get cover this time walks off muttering 'if you want something doing' I do a lot of therapy at home.I do it straight after bath time.

DS has started to do an odd thing.When he is walking his leg wil suddenly shoot out in front of him and he falls down, Any ideas ?

hildathebuilder Wed 09-Nov-11 09:29:02

Oh I feel so lucky, My ds physio is NHS and amazing. Always positive, if realistic, although I know Ds is still tiny, she has never given up hope on anything, and is currently scheduling in weekly physio where she and a clleague who later wants to specialise in CP spend up to an hour going through things with DS. We also have a private physio from time to time but that is more for us.

She tells me that the physio is mainly because Ds is learning to walk and she wants him to do it in the best way so she's throwing the book at him now.

In respect of inspiring people with CP I know of/have heard of/have met many. My current role model is a student at a very prestigious unversity who decided that come what may CP (spastic diplegia) would not get in the way

Haka Wed 09-Nov-11 09:31:55

Message withdrawn at poster's request.

survivingsummer Wed 09-Nov-11 10:00:05

inhibernation smile smile - fantastic news!!

intothewest - hi! Does your ds do that a lot? Just cos dd sometimes just loses her co-ordination when walking when she's tired - like her foot has just gone iykwim..

Haka sad

intothewest Wed 09-Nov-11 16:37:06

SURVIVING- Yes he does it a fair bit. When he's tired he falls down ,but the leg 'thing' is fairly new.It's as though it shoots out by itself !

HAKA- no guidelines,but you sound as though you're doing a good job smile

sneezecakesmum Wed 09-Nov-11 19:55:53

Inhibernation. Well done little DD that is fabulous news. Don't ever listen to the experts, especially doctors, I think they take lessons in doom and gloom! These children amaze us every day, and every week we see something different, something encouraging, just the hint or a normal movement or stage in their development. Its really slow compared to NT toddlers but it is SO worth it!!

Mild SPD children lead pretty normal lives, they may need botox or even tendon release surgery in the future, but these interventions enable them to continue to live full lives, maybe not run marathons but attend school, work get married and have children. smile

DGSs physio is pretty amazing too.

Tonicwater Thu 10-Nov-11 17:56:49

Haka The social side was I think the hardest part at school. Like you say my DD seemed to have lots of friends, but in all her school years she only had two party invites. I would send in letters when she asked for a friend to come round. Because the school was a way from where we live I knew that it would be more than a fifty mile round trip for a parent to drop off, go home then come back and pick up. So I used to write that we would pick up and drop them home or they could drop off and we would take them home, any way they would like. Even this offer meant out of all the people I asked for her only two ever came.She does still keep in contact with these two now.She did stay and do after school activities once a week.

I took her to local groups so she met some local children but that was hard because they had friends from the schools they went to. For her even though school was fully inclusive the social side was really very hard.
I know my DD knew she wasn't being asked to parties or round friends houses. She would ask 'why' I used to say I didn't know.sad

Since she has been at college her social life has changed, She isn't allowed off college grounds without a member of staff. But she goes to the cinema, shopping. She has been to the pub for Sunday lunch and I am sure a quick drink. They have a social club that have discos and other activities.

twlight Thu 10-Nov-11 21:55:02

hiya, im gonna join in as well - DS of 13 with CP etc - we use trihexyphenadryl for Dystonia which sounds like the dystonic storms mentioned and its been a god send - he seems to get use to it quickly but has helped the spasms and crying immensely.

2old2beamum Fri 11-Nov-11 12:53:12

I wonder if anyone can help son has been diagnosed with neuropathic pain, is this similar to dystonia. He has cried and moaned for the last 6 months all usual things ruled out, now taking Propranolol with some success but is easily able "to off on one" He is cp deafblind etc.TIA

sneezecakesmum Sat 12-Nov-11 20:01:43

Whats a power plate hmm ?

inhibernation Mon 14-Nov-11 00:35:30

Feel very sad reading reports of children who have been ostracised by their peers sad. Kids (and their parents) can be so cruel. Have noticed a people staring at dd when she is using her walker. The kids ask their parents why she's walking with that thing ......and the parents pretend they haven't heard. I'd rather they say "the little girl needs it to walk" or "I don't know - maybe we can find out" - rather than feeling embarrassed. Some children have approached me and asked what's wrong with dd or why she uses a walker - and I am fine with that. I hope it helps them understand the issue so that when someone with CP is in their class/work place etc, they will be more tolerant.

Sneezecake - a powerplate is also known as a vibration plate and it was once favoured by celebs such as Madonna because it offers a faster work out. However, it has since been used by injured athletes and more recently still, by people with CP - both with good results. Incidentally, after we bought one (would not have been a waste anyway, since dh uses it) the PT says one of her clients with CP uses it - and has had dramatic results. There is a related evidence base but I'm afraid I can't link because dh did the research. Gotta let him take charge of somethings eh wink By the way, dd's Paed thinks her CP is more moderate than mild but it's always nice to hear her referred to as "mild". dd has taken more steps since last week smile Unfortunately she also had a very nasty fall at nursery (went back in her walker and hit her head on the concrete surface) sad

sneezecakesmum Mon 14-Nov-11 18:53:10

Ow I can feel that bump! I bought one of those helmet things (thudguard) for NT kids but DGS has not done anything exciting enough to wear it! His walker has chest support so cant fall backwards, but managed to lose all bodily tone when the dog went mad and nearly fell through the hole in the middle, sort of crumpled! Twas funny but an example of loss of tone. Luckily not done it since. We are reluctant to let him sit unaided because the topple-itis may put him off for life - he is a bit of a wimp tbh.

I am very interested in the power plate thing, anything that can build up some muscle strength would be brilliant. As he is overall very weak in the muscle department it may be useful, as he cant walk far in his walker her never builds up the strength which in turns hampers more walking hmm. btw I read that most children with CP, despite have muscles that look very tight and hard at times, actually have very weak muscles.

It is a bit upsetting that people dont seem to know how to act around disabled children, getting embarrassed etc. If only they would see they are just children, just like their children but with physical difficulties, and sometimes it is just that one tiny fateful moment that makes these children different sad

kellbell82 Mon 14-Nov-11 22:22:50

hi everyone my ds 22months was dx with cp 2weeks ago ( in a letter ) so just trying to get my head around it all not really sure how i feel think as i don't stop don't think i have much time for it all to sink in , ds is such a happy little boy and his speech is coming on really well over the last few wks, its just his gross moter skills that are far behind he can't sit without falling back he does move around on his front by dragging himself with his arms, i think its his legs that are most effected , he also has a condition where bony lumps are growing he has them on his wrist back and ribs that cause him pain and will need ops in the furture , it would be really nice to talk with people who know what we are going through and at what age ur lo's started doing things as don't know where ds sits with being mild to moderate cp x

inhibernation Mon 14-Nov-11 22:58:37

Welcome Kellbell. My dd was only diagnosed this year and like your situation it wasn't handled well by the medics. I'm sorry to hear about the dx but hope you will find this thread supportive and informative as there are a fair few mumsnetters who are very informed and have helped me a lot.
Someone once said to me that the achievements a SN child makes are that much more special. Totally true. I feel so choked everytime she does something new. In terms of milestones - every child is different. dd is 2 and she still doesn't sit well but has just started taking some independent steps. We don't know where that will lead....no crystal ball. That's the hardest thing. Have the drs said what type of CP your ds has?

Sneezecake - yes I was told that by dd's PT. The spastic muscles mask the weakness. That's why SDR is so dependent on intensive PT for favourable outcome. Dh says to look up "child learns to walk with powerplate" - it's on YouTube.

JackTheNipper Tue 15-Nov-11 10:11:25

have just google searched that power plate, and it huge!!

kellbell82 Tue 15-Nov-11 17:11:40

hi inhibernation thanx for the welcome that is brill that ur dd has taken steps i bet you could not stop smiling : ) , the man that fitted ds for his splints said he had diplegic cp the pead is useless that we see and don't know when we gonna see him next as would be nice to get more info , we get lots of help with early intervention ds goes to a sn group 2 days a wk and they are going to offer me one day daycare for him he will go for few hours , i think i,m going to have to look up the power plate sounds good and prob good for me lol x

hildathebuilder Tue 15-Nov-11 17:31:30

Welcome kellbell. My DS has diplegia and is slightly younger than your DS. We got the diagnosis in February, and at the time I wasn't sure I believed the Paed, but slowly I got used to the idea. And it is honestly fine. i soemtimes struggle with other children of his age about the place, but none of them are as lovely as my DS and some of them are just plain boring. So what if DS can't walk yet. One day he will, not sure when but he will. He is also DS just like he was before he was diagnosed and IMO the loveliest smiliest child I have ever met. He can't really talk yet either.

You also have had splints so that presumably gets your DS into the system, and again i presume means that you have a physio. IME the physios are the key difference between good treatment and rubbish treatment, and so much more use than the Paeds, who even in my large teaching hospital rely on the physios for diagnostics etc for little children. So if you can short circuit the rubbish paeds and go to community healthcare for physio (I assume seeig as they are suggesting SN groups and a nursery that you can push that through those avenues if the paeds persist in ebing useless)

My Ds also mainly drags himselfs by his arms (much more so since he got the splints) but can crawl normally, its just a bit too much effort for him most of the time as he is very quick and the drag method.

On the questions of what age DS did things, I would actually probably have to check the previous posts I had on sitting (which DS also doesn't like, he much prefers to kneel) but he started the commando crawl dragging just as he was last discharged from hospital (13 months corrected age) and cruise at 15 ish months corrected. He is just trying to stand independently (and fall over) at 18 ish months now. But its hard work. He gets set back every time he is ill which is a lot as he's in nursery and also has chronic lung disease (from being prem). But personally i think he does that when he's trying to tell me he's had enough now. As for where DS sits on mild or moderate, in our case they won't tell me anything until he hits 2 corrected age next May. I have an idea but I have to hope for the best and expect the worst if that makes sense.

Have you applied for DLA yet? If not I would recommend you do as it took us 5 and a half months before the DWP agreed, and although I felt that it was a bit of a shame if DS is entitled to it he's going to have it.

anyway there are peopel far more knowledgeable than me on this thread, but DS and I are similar(ish) newbies and finding our way through the system.

madwomanintheattic Tue 15-Nov-11 20:51:41

inhibernation - what walker has dd got? dd2 used to take hers over regularly - she would go backwards a lot. in the end we changed the walker to an R82 croc which was pure brilliance. i don't think she managed to get it over at all. grin

just for interest, dd2 used a walker for three years, and then the physio took it away for a year, to see if she could be encouraged towards independent mobility given a bit of impetus... so we slogged it out for a year and it was awful - it really brought it home how 'disabled' she was, when you would have thought that the equipment would have done that.... no equipment was worse!! we ended up using the mac major all the time and it was reducing her independence considerably. so anyway, we got the walker back and then changed it to a croc, which she kept all through yr r. the walker enabled her to play with her peers (and they all wanted a go as well wink) and was far more effective for socialisation than any social skills group!

<i'm always a fan of people asking 'why does dd2 do x, have y' and actually i probably do overshare on occasion if people are skirting round the issue - just to emphasise that i'm really not squeamish about explaining, and not likely to take offence... if that makes sense?>

and on that sort of note - it always catches me off guard when dd2 falls over and overly dramatic adults rush to her aid. i guess both she and i are totally used to it, but the sight of a little blonde 8yo (with fairly obvious disability) crashing to the ground brings them out in their droves. grin which is ok if she actually hurts herself (pretty rare nowadays) but for the other 8 or 9 times a day she just drags herself up again. i mean, it's not glamorous, and it takes her a minute to organise all her legs and arms to get back up again, but i'm sure other parents think i'm utterly negligent and uncaring... she caused a bit of a pile-up at brownies last night, as she was skipping at the front of a line (always interesting) and toppled over, with all the rest of the brownies ending up in a big pile like a comedy sketch. grin we all just said 'oopsy!' and disentangled everyone very matter of factly and carried on. grin but the look of horror on the two parent helper's faces as she hit the ground was priceless - i think they are at the 'still an unknown quantity' worrying stage.

that said, i do have to make sure i'm not overdoing the blase stuff. school have sorted her out a netbook, but were at great pains to explain to her that she would have to make sure she plugged it in every night before she went home. i did have to suggest that maybe she might need a hand with that - the abysmal fine motor skills being the reason for the netbook in the first place. grin the teacher did have the grace to blush, but she saw the funny side. she now has a computer buddy to help. grin

<waves to everyone (especially newbies) and apologises for overly long stream of consciousness nonsense>

sneezecakesmum Wed 16-Nov-11 11:21:01

DGS has major extension backwards issues at the moment which we hope will ease with time to a croc looks good for the future. We are too soft to let him fall anywhere as he is such a wimp timid boy it would def put him off trying again. Brainwave agreed on this so we are being extra cautious till he toughens up a bit and learns defence falling. CP children need to be bruisers tbh!

ferryman Wed 16-Nov-11 12:33:02

hope ye dont mind an interloper from the west of ireland joining in. our dd is 5 and half with cp, hydrocephalus and epilepsy. she has been through a lot in the last 5 yrs but continues to amaze us all the time. she recently started crawling which we were told she would never do. she uses a kaye walker for short distances and also has a wheelchair which she "drives" when it suits her. i am just wondering if anyone knows if sdr (selective dorsal rhizotomy) is available in britain. i have been reading a bit on it in the st louis hospital in the us and would love to know if dd was a suitable candidate. it would be so much easier to go to britain. is there anyone on this thread whose child has had this surgery? its great to have a thread like this. thanks

zebrafinch Wed 16-Nov-11 13:40:53

Hi, stopped lurking and come off my perch.
Haka , my ds (15 spastic quadriplegia) has just had a baclofen pump inserted. He coped very well with the op, home now and so far AND IT IS VERY EARLY DAYS but I have been very impressed with it . Instead of the extreme arching and going into full body extension he is lying much straighter, I can dress and change him easier , his legs feel lighter with reduced spasticity and he seems so much calmer. If this keeps up this would be a big success for him so much so that I am feeling guilty about how long it took to arrange it all. Children may be different in how they respond (hence a test dose is always done before a decision is made to proceed) but in ds case his situation with spasticity was so very extreme we had to give him a chance to see if this worked. I am crossing my fingers that he continues to get benefit.

Mmmmcheese Wed 16-Nov-11 13:41:40

Hello everyone, im really pleased to have found this thread as have never met anyone else with a child with cp. DS is nearly 2 and has spastic diaplegic CP diagnosed at 12 months old. He is doing really well, cruising a lot and hopefully starting to think about takingnhis first proper steps soon. But it has been a very hard and emotional journey and im now 34 weeks pregnant with DD so all a bit nervous!

Just wantednto say hello and have two questions. Might we be entitlednto DLA? I have ben tokd that as ds cp is mild and he is only 2 theres no point applying - is thisbtrue?

Second question more light-hearted and random! DS has a fantastic physio and portage worker andnjust wondering if people give them christmasnpresents and if so, any ideas?

hildathebuilder Wed 16-Nov-11 14:30:17

Mmmmmcheese, I applied for DLA when DS was just over 1 corrected age. I had been told it was very difficult to get DLA but after a age we got it, initially lower rate, I moaned a lot and then we got middle rate. My Ds also probably has mild CP, or mild end of moderate but a friend told me that there were still ots of things we did for him that we wouldn't have to do if it wasn't for the cp, so worth a shot if you can face it. I don't spend much of it yet, occasional private physio, hosptial parking, more washing because of the ridiculous policty that he can only have one pair of lycra short but that's it

zebrafinch Wed 16-Nov-11 14:42:38

Ferryman, I think selective dorsal rhizotomy has started at Frenchay Hospital Bristol. Google it. I vaguely remember reading a few months back a local newspaper report of a child having it done in UK instead of USA and think it was a neurosurgery team there. Sorry not to be more specific.

madwomanintheattic Wed 16-Nov-11 14:52:05

we got dla at 6 mos, and were told to apply by the consultant. the sn hv helped me with the forms (i signed them - she wrote them. i still don't know what they said. blush)

essentially it is definitely worth applying - think in terms of how much 'extra' you are doing with ds than you would with an nt child - how many minutes/ hours of physio? how many appointments? is he uncomfortable or does he suffer from any spasms or need to be re-positioned in the night? what equipment or supports does he need? if he uses splints, for example, does he use them willingly, or do you have to soend time reassuring/ coercing. does he comply with his physio or take twice as long because it upsets him? does he need help to do the same things his peer group can do without help?

diplegia can be more straightforward if there is no fine motor or speech difficulty present, but a lot of kids with diplegia do have issues with these too - so look at finger feeding etc - is he coping as well as his peers? are you having to prepare food a certain way? do you have to help him put finger food into his mouth?

does he need additional supervision whilst playing (ie does he fall frequently even if crawling?) do you need to help him access the toys he wants, rather than him digging them out of the toy box himself?

does he get any extra supervision at nursery?

dla is very interesting. when we received our award, i went straight to the sn hv and told her i thought there had been some mistake. she sat me down very patiently and said that although dd2 was doing v well, it was only because of the additional input she was getting. without it, she wouldn't be.

we've left the uk and our dla has stopped now. i might miss the money, but i sure as heck don't miss the form filling. grin

hildathebuilder Wed 16-Nov-11 15:03:50

yes I put all of that kind of stuff, that because DS was more likely to fall he had to have an adult with him all the time and even though all children need supervision most children can sit without falling over while you get up and reach your cup of coffee, that I had to make sure he didn't fall into the water in the bath as he could not sit, that I or nursery had to do his exercises several times a day, (and sent the exercise sheets to the DLA people), that it took longer to change DS because his legs went spastic, (and subesequently because he had to have the shorts and splints on and off all the time). That he had to be positioned to learn how to crawl, sit cruise etc, and carried from one activity to another as he couldn't crawl. The nursery backed me up on that, and we told the DWP that they had 10 hours one to one funding to him (not that I think he gets 10 hours one to one not least because I know the other mothers get jealous if he does!)

we then had all the time it took to give inhalers, anti reflex meds, anitbiotics etc but that is a different story

madwomanintheattic Wed 16-Nov-11 15:31:07

not really different - (well not the reflux stuff anyway grin - unusual muscle tone has a lot to answer for! grin)

madwomanintheattic Wed 16-Nov-11 15:31:45

and frequent anti-b's for chest infections due to aspiration <sigh>

intothewest Wed 16-Nov-11 15:51:49

Hi again-

RE children asking questions- I much prefer it.One woman was madly 'sshhhhing' her child when she was asking why DS was in a disabled trolley. I told her not to worry and just told the child his legs didn't work in the same way as her legs did

DS used to have a great walker that was really helpful- Then the physio changed it to one with 4 wheels.Every time he came to a downhill slope,he would lift up his feet and perch on the back !! grin

He has an odd gait now and does need to hold a hand or two outside (and he does fall over a lot)

madwomanintheattic Wed 16-Nov-11 16:13:18

into - dd2 used to do that. she couldn't sit on the back of the croc though. wink i was a bit concerned at first, the whole 'walk sensibly' thing, but you know, in the end i thought about it properly and realised she was only doing what every other kid gets to do without thinking - running around and feeling the wind in her hair, having fun and playing. if you can't run, but you can get up a bit of speed if you lift your legs when you go down hill, then fantastic. grin it was especially great in the playground - it meant at least she could try and keep up with the other kids.

it didn't stop me having a panic, or contemplating putting walking reins onto the walker blush, but it made me realise she wasn't doing anything wrong, just being a normal kid. grin (and got me really fit running around behind her trying to stop her falling off kerbs and picking up too much speed...)

intothewest Wed 16-Nov-11 18:08:10

grin - I agree.He had loads of fun......didn't help his walking though !!

madwomanintheattic Wed 16-Nov-11 18:09:12

grin i know. but not everything in life has to be therapy. grin you can just enjoy it as well!

HairyMaclary Wed 16-Nov-11 18:09:47

Ferryman I've just been catching up with this - am not on Mn much at the moment as I am fighting to get funding for DS to have SDR over here in Oswestry. He has been accepted for SDR both here and in the USA but we have decided to go for here, however I have now had to meet with the MP who is going to start fighting on our behalf to get our NHS trust to fund it. I seem to be in the minority of CP parents who think that Oswestry is very good and while the actual op is slightly different the rehab (physio etc) afterwards seems far more thorough as we would be an inpatient for 6 - 8 weeks.

The Frenchay hosital does offer it, they offer the USA version of it bu tI'm not sure about the post op rehab or how intensive that is.

I would look into it, am happy to Pm if you want more details. We have been told that it is unlikely DS will walk as an adult without it so if we cannot get funding for here we will fundraise to go to America.

It's nice to see so many others here - sorry to not be contributing - it's a bit busy atm!

intothewest Wed 16-Nov-11 18:22:25

Oh yes....My boy knows how to have fun grin - He's just spent hours speeding round the house on the 'spinny chair' (narrowly missing my toes and the cat !)

madwomanintheattic Wed 16-Nov-11 18:26:59

grin

ferryman Wed 16-Nov-11 18:32:08

zebrafinch and hairymaclary thank you both for replies. sdr has been in the media over here recently with at least 2 children going to the states for surgery. it has never been mentioned to us as a treatment for dd but i want to gather as much info as possible to arm myself for a discussion with dd's ortho consultant as to whether she may be a suitable candidate. from my reading it seems having sdr leads to less problems in later yrs. hairymaclary i would love more details whenever you have time. i hope all goes well with your battle. i know if dd is a suitable candidate we have have the same problems. best of luck

chatee Wed 16-Nov-11 18:33:26

Hairy,
I share your opinion about O hospital - I travel to go to this place as it is so good- and for AFO's too, have you been involved with their recent trial? very interesting and I so wish they could get the funding and change the way that AFO's are made for ever....even dd wishes this as she could feel the difference in the standard of the AFO...
uhhm wondering if we have been there at the same time??

chatee Wed 16-Nov-11 18:37:33

please be aware that the treatment in america 'seems' to have such an excellent success rate
and whilst I agree with ops for children with disabilities to help them(and am currently facing major surgery prospects for dd within the next 12 months possibly)
the reason for this 'excellent success rate' is because they seriously pick the patients that they will operate on- in order to keep up this high success rate..

wentshopping Wed 16-Nov-11 19:05:02

Hello, I'd like to join! DD3 is 10, quad spastic/athetoid cp. Born in UK, we now live in US. She had a g-tube fitted this summer (stuck around 35lbs in weight for the last 3 years), and the biggest change has been her grades at school - she must have been too hungry to concentrate before. She uses a power chair - just grown out of it, so starting the long process of applying for a new one, eye-gaze communication device, gait trainer, loves playing on the ipad... We do get party invites, and this past weekend I left her on her own at a party for the first time - it was the cinema, so I knew she would be sitting in one place until I returned at cake time to feed her. Seems like nothing to an nt child but a huge step for me/us. Sometimes I feel I have to step out of my comfort zone to help her "make friends" such as becoming a girl scout leader so that she would be in the group from the start, and going to every party - being the only mum in the swiming pool is the worst one for me, but that's my issue not hers!

inhibernation Wed 16-Nov-11 20:47:40

Can I just say how lovely it is to see you all here smile I hadn't a clue that there was so many of us!

M-cheese (forgive the lack of 'm's - am very lazy blush) Yes to DLA. Defo worth it. We were initially awarded low rate care for dd (too young for mobility component). We asked them to look at it again and dd got middle rate. We spend it all - on private physio. Seriously.........dd would not have done as well as she has without DLA cos private PT is £70 for an hour and we don't have that kind of money. Plus the petrol and parking costs. It makes me wonder why I didn't train as a PT!! Basically if your child needs more than one hour extra care a day than a NT child you can qualify for middle rate. If less than 1 hour extra then it's low rate. If night care is needed you qualify for high rate. dd defo needs more than one hour extra care a day, but as yet doesn't have night time needs. A disability worker helped us to do the DLA forms. Is there anyone at your local council who could help you? Your early support worker should be able to advise.

Ferryman - welcome smile Have family in the West of Ireland (Galway) Beautiful part of Ireland smile Right....SDR. You can contact Kristian Aquilina @ Frenchay Hospital, Bristol. If you google him you will get his email address. PM me if you can't find it and I'll give it to you. He is very approachable. The hospital do the same form of SDR as St Louis and I think they've done about 20 ops so far. Some PCTs fund, some don't. We are looking into it for dd. First step is to see if she meets their selection criteria. We've asked GP to refer dd there. Hairy is right about most people preferring the newer type of SDR as opposed to the one offered in Oswestry but the choice of what type of surgery to go for should be based on your child's clinical profile. It is very difficult to get informed opinion on SDR since most of the professionals involved in our childrens care have either never heard of it, are partial to urban myths about the op causing paralysis or not being suitable for children with CP unless it's very severe...............or just not interested. Tbh I've been shocked at how ignorant the HCPS are about it. NICE guidelines for SDR were issued a year ago. dds's Paed has only just received them. It's a disgrace. Hairy is right to mention the PT aftercare. If dd was accepted for SDR in the UK we would probably have to look at funding the PT ourselves to ensure she got the quantity and quality of PT she needs.
I'd also recommend Henry Ford's dad's website. Google Henry Ford SDR. It's a great website in my opinion. Also SDR for UK. Some good pre and post SDR videos.
Hairy - is the same type of SDR performed at Oswestry done in the US as well?

Madwoman - thanks for that suggestion. I'll look up that type of walker. dd just has the traditional type of kaye walker with 4 wheels. dd runs with it and swings on it.........I can understand why she does it but my hair is a lot greyer grin I have to stop her lately cos the ground is wet and slippery with a lot of leaves everywhere.

Those of you who are getting fab PT for your dc..............where do you live? Perhaps we need to move wink grin

inhibernation Thu 17-Nov-11 11:20:44

Bumping to keep on front pg in case anyone else comes along

madwomanintheattic Thu 17-Nov-11 16:14:13

hi wentshopping grin dd2 has the same dx but is mild/mod, she's 8, and we moved to canada grin. and weirdly, i'm running the brownies... <parallel lives emoticon>

how amazing that the g-tube has had such an impact on her grades! wow! sometimes you get benefits you hadn't seen coming, and then in hindsight think, well, that actually makes perfect sense, why didn't i think of that of that before?! and yay for parties and cake x

wentshopping Fri 18-Nov-11 14:57:09

hi madwoman grin at parallel lives!
Agree absolutely about hindsight! Another advantage of g-tube is sneaking in medicine when she is sick - usually end up with half of it running down her chin or gagged back up - not any more!
It's Thankgiving lunch at school today, so first roast turkey of the season! (Which is why I think she spent ages on the computer last night trying to find a website where Santa would write back to her)
Our new gait trainer is a Kidwalk, and one of the most important things about it is that it fits over the wii balance board for playing wii fit!!

madwomanintheattic Fri 18-Nov-11 15:48:05

awesome! grin you have to have your priorities right! we had thanksgiving last month of course, but i'm v jealous and starting to fantasise about christmas though... mmmmmmm i might have to start searching out some mine pies. it's -22 here at the mo. dd2's glasses frosted and froze at the bus stop this morning, so much to her disgust (they are purple and uber cool)we're now back into keeping them in her bag until she's at school grin

madwomanintheattic Fri 18-Nov-11 15:51:36

mince pies. obv.

wentshopping Fri 18-Nov-11 16:31:15

madwoman -22 eek!! (I bet you live in a really beautiful part of Canada, though?) It's cold (for here) today - had to put a fleece on dd to get on the bus - but only 13oC, so like a UK summer's day! I always need an extra few minutes to get her dressed in winter as I bend her arms into a jacket, usually while the bus is outside. When she was tiny I would just throw a poncho on her, but that's not "cool" enough for her now.
Love purple glasses! DD has purple wheelchair! (This parallel thing is going a bit far now!)

inhibernation Fri 18-Nov-11 16:46:04

How funny about the parallel lives wentshopping and madwoman grin

I was wondering/fearing just how stroppy dd will get when we have snow here and she won't be able to use her walker. God am dreading it!

madwomanintheattic Fri 18-Nov-11 16:51:28

dd2 has a purple wheelchair too. <goes for a lie down as it's all too much>

we live in the rockies. it is sooooooo beautiful, and they the most fantastic adaptive sports and recreation programmes. have a look at this. if you are ever in this neck of the woods, let me know. i bet dd would love to hike grin - do you think there's any way she would manage a sit-ski?

slowburner Fri 18-Nov-11 19:08:52

Evening everyone, we've just got back from a week at centre parcs, it was amazing fun but highlighted just HOW different my DD looks amongst her contemporaries. Just the way she moves is different, even as a toddler she seems much less co-ordinated. There were many bumps and newborns and it was hard at times, but DD had a whale of a time. Genuinely I swear she didn't stop shrieking, pointing, bouncing, smiling and even ate more than we've ever seen before.

We had a phone call just after we got home offering an assessment at Brainwave, we spoke at length about physio and OT, about the need for input now. I'll start another thread but was wondering how many others had used Brainwave and what questions I should ask, or wether people found them useful? We have hit a wall with the constraint therapy idea, but still intend to investigate that avenue.

skewiff Fri 18-Nov-11 20:40:52

Slowburner:

My DS also has hemiplegia. It affects his left side. He will be 5 in March. We found out when he was 6 months old as he was not using his left hand at all.

We have done loads of therapies with him and he is doing so so well now. He has just learned to ride a bike without stablisers!

DS still has very reduced use of his left hand. It can just do a very basic grasp and release and his hand is still very stiff. However he has surpassed all our expectations.

I have not tried Brainwave with DS. At the moment we are doing reflex therapy with Hemispheres (this is for children older than your DD, I think).

We have done loads of hyperbaric oxygen therapy and Scotson technique. And I take DS quite religiously to a cranial osteopath.

I'd love to try constraint therapy too. But it just does not seem to be available in this country.

slowburner Fri 18-Nov-11 20:58:31

skewiff - thanks for your comment smile

Do you have reasonable NHS provision for therapy support in your area? Part of our issue is that we are being sidelined for most things, and have barely seen physio even though it was very liley DD would suffer CP or CP type motor issues due to birth injury.

JackTheNipper Fri 18-Nov-11 21:47:22

We ahve done the brainwave programme, and found it fantastic, we got a bit lost with the physio that we should be working on. DS has many issues.
So they set out a programme and DVD for us to follow, although it is slow going we have seen many inprovements in DS and so have they when we went back for the update.

skewiff Sat 19-Nov-11 21:32:42

Hello Slowburner,

Well our NHS provision is OK really. When DS was first diagnosed they congratulated us on finding it out so early, as they said it was best to get started with treatment. But then in the same breath said that their waiting list was 8 months long. I was so angry that I wrote to our MP, the primary care trust and eventually to a higher up complaints body. DS was seen immediately after this and ever since the service has been very very good.

They see us very regularly and the therapists are great too.

In contrast DS never ever sees an OT - there is only 1 for our whole borough and so the borough does not actually offer therapy - just splint fittings!!

So I realise how lucky we are with physio.

I would suggest complaining and making yourself heard. I have been told by the people who work in the NHS themselves that if you are a parent who complains they will see you, but that there are too many patients and people needing therapy for every one to be given a good service.

I know people who've done Brainwave and thought it was brilliant. We have mainly gone down different routes, privately, because DS used to be used as a guinea pig for training at the Bobath centre and this gave me a huge amounts of physio to be working with - on top of what the NHS offered.

Good luck and let me know if there's anything else you want to ask.

slowburner Sat 19-Nov-11 21:53:40

skewiff thanks for your reply, i am going to raise the roof when we see the paed on tuesday as I have lalready seen evidence that it is those that shout loudest that get seen. I have also been investigating Brainwave and the possibility that dd's nursery just isn't doing the 1-2-1 stuff with her to encourage the weaker hand because a) the nursery nurse assigned to her isn't really interested and b) the nursery is full to the brim during term time and she just doesn't have time to see to DD who to all intents and purposes can manage most things. Just not terribly gracefully!

I get the impression round here that OT directs physio, and also that physio concentrates on gross motor and OT deals with fine motor, it's fine motor that DD struggles more with although she has developed some amazing coping mechanisms!

MABS Sun 20-Nov-11 12:58:21

hi all - just seen this thread, can i join please. DS has left hemi CP and a neuropathic bladder, he just 11. was a 27 weeker and was diagnosed at 48 hours old by a brain scan sad

sneezecakesmum Mon 21-Nov-11 12:31:00

Hi all and welcome Mabs smile

Brainwave was a fantastic experience. We were shock when we went as it was one to one for two whole days for the assessment and program. Never more than 2 families apparently. There was an experienced physio, OT and play therapist all concentrating on little DGS solidly and that intense scrutiny enable them and us to see the whole picture, rather than a bit here and a bit there as you do with the NHS.

DGS is a complicated picture and by observing him carefully gave us loads of important tips and insights as to why he does certain things and how to combat them. As he has so many areas to work on we were getting lost on what was most important, but they set us on the right path.

Definitely recommend it to anyone. We go back 6 monthly for updates and new programmes. The centre itself is so modern and bright, with fab equipment and so many positive ideas we loved it.

hildathebuilder Mon 21-Nov-11 13:40:03

Hello everyone, can i just quickly ask how everyone gets on with the division of labour/responsibility etc.

As I have said my ds is very little, and both DH and I work full time, and juggle hospital appointments. Last Friday I was giving a seminar so Dh took DS to the physio, and he came back more depressed than I have ever known him. He seems to go up and down like a yo-yo, and seems to think that the physio was pissed off, thought DS wasn't improving, generally that he should be doing more for DS and that all of life was rubbish. I can't work out if that's because he usually leaves DS and the physio to me, and it was a bit of a shock to him, if the physio thought DS wasn't making progress (I think he is and am clinging on to that) and he has spent the weekend worried sick that DS is going to be much worse, and have a much worse outcome to the outcome we had expected.

I don't know whether this is just because I usually do physio and he doesn't know the physio like I do, or if there is more going on. Ds was tired and it was friday afternoon (at the end of a week where he had had asthma issues and not slept well) and I suspect he was having a bit of an off day, but it is so hard to know. Shall I just leave it and see what I think when I see the physion on Friday this week, shall I just put it to one fo those things. All of a sudden I seem to feel it is my responsibility to make DH feel better too now.

MABS Mon 21-Nov-11 14:18:04

Oh Hilda - can so relate to what you wrote. DS is now 11 and dh is still in denial to some extent. I pretty much do all medical stuff, ds prefers it that way .

skewiff Mon 21-Nov-11 14:18:25

Yes - I used to be like this too. I'd be really happy and positive, because DS was doing so well and then I'd go to an appointment and they would completely depress me - because they focus on the negative mostly and also they never saw the full picture and often used to point out negative stuff that wasn't actually there, I think ...

I'm sure your DH is not used to the physio and so doesn't know what to filter out and what to listen to.

skewiff Mon 21-Nov-11 14:22:07

I would like to ask a quick question:

I've started a new thread with the question, but would appreciate your ideas as its about my son with CP.

He's 5 in March and I have to tell him now about his CP, he is asking questions.

How have you all told your children that they have CP? I don't necessarily want to go straight into using the term CP or hemiplegia, or even the word brain ... I think its going to be to complicated for him to grasp.

I just don't know where to start.

Thank you.

HairyMaclary Mon 21-Nov-11 15:11:19

Skewiff - will reply on other thread - DS is now 6 and we have recently gone through this.

survivingsummer Mon 21-Nov-11 19:28:16

skewiff - my dd is 4.5 and also asking questions. I have been telling her for quite a while that she was very poorly when she was born and had problems with her brain. I tell her that this is why she can't hop and run like the others in her class at school. It seems to be enough at the moment but am also interested in how others have explained things to their dc.

Also I was quite pissed off that she came home from school recently talking about 'Terrible Palsy' and 'what is that Mummy?'. I'm not sure where that came from and whether to broach it with school? WWYD?

Just on the subject of DH's and dealing with things. We used to go the paed appts together to start with and I would come back seriously depressed and DH very positive - we just heard things very differently! I then sent DH on his own for the next 6 months which worked much better. I think he has always erred on the positive side so has been a little bit of a shock to him that DD isn't 100% ok hmm

badkitty Mon 21-Nov-11 20:13:03

Hi all, haven't been on here much for a while (busy with DS2, now 4 months, and avoiding special needs a bit as feeling pretty down about it all) but it is nice to see a proper CP thread with such a lot of people on so though I should join it! DS1 will be 3 in a couple of weeks and has quad CP, a bit atypical but with v low tone in trunk and increased tone in limbs. I feel quite depressed at the thought of the upcoming birthday as he doesn't seem much different to how he was on his second birthday. I suppose to be fair to him the quality eg of his crawling and his balance has improved quite a bit but he hasn't really learnt any new skills or made any breakthroughs and with the slow progress I just feel like he will stay like this forever. What I would like to ask though for those with older children is how you dealt with the combination of CP and toddler tantrums! DS doesn't have any speech, and when he goes into meltdown (fairly frequently at the moment...) he basically loses control of his movement and starts thrashing around often smacking his head on things. I can understand why he gets angry - his life must be one frustration after another as his body is not doing what he tells it to - quite often what triggers off one of these tantrums is that eg he has gone to pick up a book or something and has fumbled it and dropped it. Has anyone else had this type of thing and how did you deal/did it get any better? I feel so bad that he can't do the simple things he wants to but at the same time I can't always be there anticipating what he wants and also I want to see him enjoying a bit more independence - and he is desperately trying to be more independent as well but it is so difficult as his body fails him every time sad

JackTheNipper Mon 21-Nov-11 20:17:24

survivingsummer Thats what I do with DH, Send him off to see the paed, (luckily his work is understanding) and I do all the other appointments, for some reason I just cant take to the paed, she seens to tell us what is wrong with DS and doesn't listen when we say no you have that wrong!
I do the rest of the appointments, physio, OT, dietitian, portage, hydrotherapy, SALT etc.

We talk to a mum who's DS has SDP and is 5 I was really suprised when in the middle of a conversation he comes out with I have CP and thats why I cant walk! so they must have gone into it when he was younger, but I don't know how they broached the subject

skewiff Mon 21-Nov-11 21:36:33

I would be really cross if DS came home talking about 'Terrible Palsy'. Did your dd mishear something? Maybe another parent had told their child that your dd had cerebral palsy?? And their child misheard ...

I am very nervous, actually, about other parents saying something to their children and then their children informing DS before he's heard from me.

Yes I would say something to the school/ask where they thing your dd might have got this from.

survivingsummer Tue 22-Nov-11 20:19:40

Thanks skewiff - yes I do suspect it was from another child so nothing that can really be done/said about that sad

badkitty - my dd made very little progress with motor skills from around 9 months to 15 months old. It is tough when you are feeling like the huge efforts you are all putting in doesn't seem to be paying off as much as hoped. But hope he makes a breakthrough soon.. tantrums aren't something we've had a lot of but I do have a little madam in my dd and she is extremely strong willed at times!

JacktheNipper - we did refuse to go back to see one paed - she even made DH depressed by her negative assessment of dd so she must have been bad!

ellaboos Tue 22-Nov-11 21:07:12

I'm mum to a little girl who was diagnosed with cp at around a year old, she is now 8yrs. I have never used a forum before, so I might be doing this all wrong!!
I suffered a traumatic birth and consequently my little girl suffered brain damage. At first I had no idea that the hospital had anything to do with it. Ella began to show signs that things were not as they should be and I started to notice that she wasn't meeting her milestones. To cut a long story short I ended up sueing the NHS and successful won the case. I wanted to post this just in case I can be useful to anyone who is in a similar position.onductive Education since she was 9 months old, which I would be happy to talk about.
You may also be worried that your baby isn't meeting milestones and your wondering if the birth had anything to do with it. Best wishes to all.

madwomanintheattic Wed 23-Nov-11 18:12:42

hi ellaboos - dd2 is 8 with cp after birth injury too. grin (our case is still ongoing, though. nowhere near completion. i'd be really interested to hear if you had concrete evidence of medical negligence, or if it came down to a balance of probabilities in the end? maybe if you don't mind you could pm me if you don't want to talk on open forum? there's a 'message poster' on the blue bar next to posts...)

re telling, dd2 has always known she hs cp (and she can spell it now, too lol) but we started with the 'you were v poorly when you were born and it hurt your brain' line. she has seen the pictures from hospital, and knows she was tube fed (we have pics of her with the ng tube in etc) and she has always had a whole variety of therapists, and she knows she sees them because her brain got damaged and so her muscles work differently to everyone elses.

i know i shouldn't, but i did laugh a little bit at the 'terrible palsy' - i am absolutely certain that it was just not very precise pronounciation and was misheard - little children often sound v similar with soft 'c' and 't'. it reminded me a bit of dd2 coming home from nursery very upset because one of the boys had called her '(first name) dribble' (to be fair, she did drool a lot at this point.) i left it for a couple more sessions wondering what to do about it, and she was still coming home upset, so i went in and asked if it was possible for someone to nip this in the bud. after a day, it became clear that he wasn't, in fact, calling her '(first name) dribble' at all, he had got her confused with a different (first name) he knew outside of school, and whose surname sounded a lot like 'dribble'. a bit like when dd2 kept saying 'cousin x broke my car', when it wasn't cousin x at all, it was the little boy x next door, but because they were both 'x', they were both 'cousin'... i spent 3 weeks saying 'but cousin x hasn't been anyway near your car, darling'. grin until the penny dropped. but i may, if you don't mind, occasionally use the 'terrible palsy' line myself. blush do ask them to look into it, but i bet it was very innocent.

slowburner Wed 23-Nov-11 19:30:54

I wonder about how to tell when she is older too, makes me quite sad sometimes but I think being honest and up front is the way we will go, we see so many doctors and so I suspect she will realise she is different. But I'll answer any questions she has honestly and give her as much as she can handle.

My 4 am mind f*ck is about how her poor start will affect her relationship with her future siblings who will (god willing) be home with me from birth, grow normally and do all the normal things, normal baby photos and relaxing over milestones. will I have a stronger bond with my miracle baby or with my normal babies. Honest, I lie awake worrying a lot.

We are investigating legal paths due to discovering that the birth injury was avoidable, happy to discuss with anyone ingested by private pm.

We saw our paed this week and discussed the CP dx we had been given by the physio with no increase in the current non existent nhs therapy provision, the paed was seriously outraged, he had assumed that we were having regular visits. On a very positive note the paed felt that there is now all over normal tone in all four limbs, and that the problems DD has are not because she can't use the limb but because she couldn't before (she did have high tone) and she learnt not to use that arm. So paed is on the warpath.wink

inhibernation Wed 23-Nov-11 22:31:07

I have to confess to finding the "terrible palsy" a bit funny too blush I thought perhaps it was just my sense of humour (!) Being a HCP I guess I'm quite direct about these things. Though I did find it sad too. I think dd already realises something is different. I guess I need to start thinking of what to say to her.....

If any of you are in London or the South and would like to meet up some time I'm up for it.

survivingsummer Thu 24-Nov-11 17:58:16

I would have really LOL at the 'terrible palsy' if I hadn't been so shock that she came out with it! I might use it when we get around to having the 'conversation' as she gets older and more aware smile

We are SW and would def be up for a meetup if not too far!

inhibernation Thu 24-Nov-11 21:19:11

surviving - I am glad you were not offended by my comment. I was a bit worried about that after I sent it. I thought about you today when we went to pick up ds from school. A child asked ds why his sister is using "that thing" (kaye walker". Ds said very matter of factly "she's got Cerebral Palsy and her brain doesn't work properly so she can't walk without it" and he carried on walking. I was a bit shock I'm glad he understands about her condition but I will need to have a chat with him so that he understands he needs to be sensitive about how the info is passed on. This is the boy who told the postman that my waters had broken while I was on my lunchbreak grin

supermum98 Thu 24-Nov-11 22:18:08

ds aged 13 with CP, would love to chat to other parents with kids with cp.

MABS Fri 25-Nov-11 12:19:03

i am in sussex

2old2beamum Fri 25-Nov-11 17:10:46

supermum98 I too have a ds age 13 with CP also deafblind due to pneumococcal meingitis.Would love to mull things over with someone.

rosielum Fri 25-Nov-11 18:45:47

I have a DD who's 2, she has Athetoid CP as a result of a birth injury. She is pretty severely effected physically but is a very thoughtful, vibrant little girl. I've got a DD of 4 months too and it is bitter sweet at the moment to see her master rolling over in 24hrs while i've been working on it with her sister for the last 2yrs!

survivingsummer Wed 30-Nov-11 20:53:09

Bumping

<Waves to newbies!>

slowburner Wed 30-Nov-11 21:25:29

A few weeks ago DD and I went along to a local scope charity, I got on really well with the volunteer we met and after seeing the facilities that they offered I decided to sign up to a six week course of their early years group which would give us some up front therapy ideas for increasing Dd's right hand use. We have heard NOTHING from our physio since the dx of CP in October so want to find help to enable cross patterning as well as making DD use both hands together and relaxing her shoulders, lots of messy sensory play when seated etc while we wait for Brainwave in March.

Anyway.

I was contacted at the end of last week by the early years team leader to go down and meet them (again), so Went down there yesterday. Firstly there were two women ether not one and I felt like we were being interviewed, secondly they paid barely any attention to DD and thirdly they seemed really disorganised. They were saying that they had thought Dd would go into one group but she was doing too well and so they think she should go into another group, fair enough, but there was either some politics or difference of opinion and they were politely arguing. Which was weird. Then the older lady gave DD a shopping trolley of play food which she chewed and all the wrappers came off in her mouth! 

Talking to them I was quite honest and said that the paediatrician thinks it is too early to make a concrete dx and he feels Dd has 'learned non use' of the right side as opposed to being unable to control that side. So we need to encourage her bilateral arms movement. The two women were almost inferring that there is nothing wrong with a CP dx and that I should be grateful she has so much movement, which I am, but their attitude bugged me. Then lastly they said that they couldn't endorse any therapy programmes but they did follow conductive education ideas, and they thought quite a lot of brain gym, which has been widely rubbished.

And this is the ONLY therapy centre near us, and as I said at the beginning of this essay (sorry, hubby has fallen asleep listening to me rant) our physio seems to have dumped a CP label on us from a great height and then vanished. So a smudge disheartened, I hope so much that the NHS OT assessment next Tuesday is positive but not really holding my breath.

sneezecakesmum Thu 01-Dec-11 12:14:03

Your DD sounds fab and I am 100% sure she will progress brilliantly. Its always emotional with CP or any problem with these children, and the slightest down comment can leave you deflated.

slowburner Fri 02-Dec-11 23:07:54

Ty, it's trying to get the therapy which I am worried about we got the paed letter today from last appointment and he makes no mention of CP but does say that there is a preference which is greater than that exhibited by simply choosing one side to use. Paed promised to chase physio and find out why we were not given any therapy but his letter just says that he would like DD to be seen regularly and is using this letter to ask the physio to comply. I was hoping for a roasted physio but I guess that wasn't to be. I am considering asking for a different one thou as DD hates her.

inhibernation Sat 03-Dec-11 13:12:47

Welcome to newbies <waves>

Slowburner - sounds as though they are playing the wait & see game. This came up in a recent SN support group I attended and the common view was that either it's because they genuinely don't know or because diagnosis has cost implications. Very frustrating for you. Agree with sneezecake though - your dd seems to be doing very well smile

beca74 Sun 04-Dec-11 22:50:35

i think my daughter may have cp she has hypotonia , hyper extension and she needs splints on her hands and feet she has a bigger weakness on her right hand side of her body and she had a really bad birth in special care when she was born on cpat machine

JackTheGrinch Mon 05-Dec-11 19:44:44

Hi Beca74, your DD sounds very simelar to my DS he's 3 now has quad CP (hypotonia /athetoid) hyper extention issues he is supposed to have splints on his feet but I really do believe that it makes the hyper extention worse so have slacked lately blush
DS also had a bad birth was on a ventilator for 12 hours (before he pulled his breathing tube out) then when he was sedated he needed a bit of CPAP to keep him breathing.
How old is your DD?

beca74 Mon 05-Dec-11 20:00:47

she's 14 months on friday.she was full term when she was born but my waters broke on the tuesday and they left til the saturday until they induced me by this time i had infection that passed thro to my dd

JackTheGrinch Mon 05-Dec-11 21:30:35

Thats quite poor care you got there, are you looking into a claim against the hospital?
DS was also term(ish) 37+4 but my placenta ruptured while I was at home, (no labour) and starved him of oxygen he was near death when they pulled him out but managed to get him breathing, thankfully his heart didn't stop but the beating that it was doing was not effective as there was no oxygen to pump around.
We were told he would be critical for 48 hours and probably severly brain damaged. He had an MRI when he was a week old which showed minor damage to 1 part of his brain, but unfortunatly thats the bit of the brain which controls the motor.
Compared to what the doctors said he would be he is not overly bad, yes he will have issues for the rest of his life but he is determined (but also lazy at times) to do what he wants to do!

beca74 Mon 05-Dec-11 21:38:25

no not taking action against hospital.we're going to wheelchair assesment on friday and shes having splints fitted on the 15th hands and feet,but she keeps smiling bless her

sneezecakesmum Mon 05-Dec-11 21:53:44

Little sneezecake is getting pointing! We've waited 3 years to see that cute little finger point to things grin

Ah, the little things in life that make you smile

slowburner Mon 05-Dec-11 22:12:31

Well done little sneezecake!!! DD was late pointing and she has certainly made up for it since! DD has French doors to the garden in her playroom, one day I was drinking tea and idly surfing with my back to the window when DD jumped up and started pointing outside. We were at the point at trees stage and it was a windy day, unable to summon the enthusiasm needed to show excitement at the apple tree moving I muttered something, DD got terribly excited and continued to point. I turned round and there was the biggest black cat I've ever seen staring at DD. Quite freaky but it was nice to see that pointy finger!!!

madwomanintheattic Mon 05-Dec-11 22:31:56

grin
dd2 was term and 9lbs. she looked ridiculous in scbu next to the preemies. like a complete fraud. she was born with a hr of 28bpm, so good job they fished her out when they did, really. made no effort to breath. <sigh>

but roll on 8 years and there's no stopping her, really.

rosielum Tue 06-Dec-11 08:40:16

My DD was born on her due date, i had a placental abruption and she was born with apgars of 0,0,0 and went for the newborn cooling treatment. Has anyone elses DC had this treatment? I know what you mean about a term baby looking ridiculous, there were all these micro premmies and then this giant big baby stuffed into her incubator!

beca74 Tue 06-Dec-11 10:50:50

my dd was 7lb 8ozs and was the biggest baby in special care,

slowburner Tue 06-Dec-11 16:40:02

Rosie um my daughter was a cooled baby, message me if you want to know more about a parent support group for HIE babies :-)

sneezecakesmum Tue 06-Dec-11 17:59:25

Can't wait for DGS to point at everything. He just missed the cooling bit sad and often wish it had been done, but spilt milk etc. Sadly he looked as though he belonged in SCBU (think skinned rabbit!)

MABS Tue 06-Dec-11 18:23:08

My god daughter was cooled at full term ,incredible treatment. My ds wasn't at 27 weeks tho

supposedtobethinking Tue 06-Dec-11 19:29:39

Hey well done little sneezecake!!

No cooling for us despite my abruption but they thought dd was ok initially sad

Have namechanged btw - was survivingsummer but thought as I have survived the summer I should move on smile

sneezecakesmum Tue 06-Dec-11 20:32:19

Slowburner..DGS wont use his right arm much despite the fact it actually works! but with lots of perseverance he rolled to his tummy today and brought both arms up and rested on his elbows. Previously one arm would always go back! As advised by others on here we do lots of bringing his arms together for him such as catching a ball. Today he was making a good attempt at throwing it back, even though it went in every direction but forwards grin

You just keep going and then these lovely little breakthrough moments.

inhibernation Wed 07-Dec-11 22:08:45

ha ha supposed - survivingwinter?! I was to be inhibernation just for the winter but think I might keep it. Hibernation has appeal all year round!

slowburner Thu 08-Dec-11 20:42:37

Well we have today paid for Brainwave in March. Happy Christmas DD.

The OT assessment went ok, she agrees completely that DD is an unusual case in that as assessment of her shoulder movement (done with dd happily engaging with the OT) shows there is no catch or stiffness to her right arm/shoulder. Therefore it should be possible with good therapy to encourage better use of her right side. The OT says it will be the end of January before she can give us any exercises or play therapy, which she will print out and pop in the post, and they will see DD again at Easter (!!!) for a review. She did say that dd's reluctance ti use her right side is hampered by her stiff shoulders, so is that Spastic diplegia?

The constraint therapy which our local NHS runs for blocks of 8 weeks according to the OT runs in summer. But physio said spring. We had to argue with the physio to get DD on it as she is apparently too young at 18 months in the spring. They use a glove for two hours a day for eight weeks and exercises are done too, I asked to have the exercises and we'd make our own glove. No can do.

The physio has yet to get in touch. I don't know wether the OT has taken over from the physio or wether we should still be having some contact with physio? All I have at the moment is the play plan which portage gave us a few weeks ago, we hand to her right, we give her loads of ball play and push along toys, messy and sensory play and I stretch her arms above her head when getting ready for bed.

And thats why we paid for Brainwave.

sneezecakesmum Thu 08-Dec-11 21:20:26

We also got a DVD from hemihelp. Its for one sided CP (R or L side - leg and arm) but we just use the tips to get the right arm moving. We are also off to brainwave in early March again! And today had the first ABM treatment. Was v impressed with ABM.

know nothing about constraint therapy. confused

Poor DGS so many other issues poor old r pandy has to get in line!

Second time we went to brainwave some kind person sponsered littlun so only cost £50! Don't know about next time though.

slowburner Thu 08-Dec-11 21:30:27

I have had some contact with hemihelp so I will get in touch re the DVD options tomorrow. thank you for suggestion smile

Is ABM anat baniel? What's it like?

I am hopeful Brainwave will help, DH doesn't seem that bothered by lack of support from OT or physio. I'm also quite worried about DD's arching again when dropping off to sleep, she seems to be constantly tired and grumpy at the moment, but she is teething. Don't know if it's a development leap on the horizon, she has taken t waking for several hours in the night. So so tired!

sneezecake Fri 09-Dec-11 19:47:53

Anat beniel was good, DS took to the chap reasonably quickly.
He got DS to lay on his physio table type thing, and play with me and DH while he pushed bits of his body and messed with his feet, Mum will be able to explain better as she saw what he was doing while we were distracting but she is at work at the mo.
So far I think DS's appetite has got better <clutching at some straws> but nothing else as yet.
He's coming back next week so we'll see how it progresses.

supposedtobethinking Fri 09-Dec-11 20:46:55

Why didn't I think of that one inhibernation? grin

sneezecake - you're back?! yay smile

Just been to school disco - bit sad as poor dd can't dance at all and she got all stressed and started fisting hands again with loud music sad probably not a good idea in hindsight but try to do all the 'normal' things we can with her...

MABS Sat 10-Dec-11 10:51:44

new book coming out soon which i am told is very good, think it The Hemiplegia guide or something similar, I ordered it on Hemihelp website.

sneezecakesmum Sat 10-Dec-11 11:28:12

Anat Baniel method. Very few practitioners in this country but according to nice chap that came and did little DGS there are lots in training, hopefully some specialising in children. The man seems to gently manipulate certain (?) pressure/nerve points to try to let the brain know that certain pathways exist for the muscle/joints etc and that these more normal pathways work better and to use them instead of the abnormal pathways the jumbled up part of the brain goes down.

For instance DGS arm comes out and up at the shoulder, like a crane, to reach objects when a more effective movement is to keep the arm closer to the body and just move the elbow. We can physically hold it down but it would be better if he 'learnt' himself (brain) to do this...complicated!!!

Anyway afterwards he seemed more relaxed and flat footed, although it didnt last, but it is still very early days, and when the therapy was going on DGS
was very wriggly so it was like trying to hit a moving target! He did eat a chilli and garlic bread afterwards confused so hope he continues to make progress!

Sneezecake has been hiding as Jackthe.... so posts occasionally still...namechanging obviously fun.

budgieshell Sat 10-Dec-11 23:28:56

Better late than never, I'm holding my hand up, I'd like to watch this thread. Not read everyone's comments yet but will read with interest. My DD is 10 years old with diplegia. Have had support from physio and OT over the years but I am finding it harder and harder to get visits and have just failed to get a statement (again).
I am getting ready for the next battle, getting the right support ready for high school. Can't do this until we find out which highschool she will get.
Wish I had the same determination and positive attitude that my DD has.

madwomanintheattic Sun 11-Dec-11 06:09:30

we've got a new referral.

they have 'physiatrists' here working out of the neuro clinic, which are apparently a cross between orthopaedic and physio specialists... who knew?

so they'll do full joints and spine check and get a look at those feet and ankles we've been ignoring for two years. and maybe gait clinic. so a full physical overhaul. yay! she's grown so much since any orthopod has been near her that it's definitely time. physio thinks her leg length difference might be more marked now, but wants it all done properly at the children's hosp. so she might end up with a lift in one shoe again to see if helps straighten her up. (she still leans to one side most of the time)

but 'physiatrist'. we've never had one of those before!

sneezecakesmum Sun 11-Dec-11 10:32:11

Does dd actually have one leg shorter or is it because she tilts her pelvis when she walks?madwoman. Gait analysis sounds good, think they do it before ops like Sdr.
Mabs . cooling is not recommended for prems only full term babes starved of oxygen.
what do i get DGS for xmas. Not bought a single card or pressie. Feel old familiar christmas panic creeeping up. He has everything already.cant move for toys and equipment. Think ill buy a physiatrist ...sounds very useful

budgieshell Sun 11-Dec-11 15:08:34

My DD has a lift on one shoe because of the difference in her leg length her orthapaedic surgeon has said if it gets much worse they would inject her leg at certain points to stop it growing to give the other leg chance to catch up. He said it is all about timing and they like to do it mid teens. This is making her turn one leg in quite a lot, to the point where she can trip over her own foot. Physio says all we need to do is remind her to keep her feet straight (oh my God how much help is that).

madwomanintheattic Sun 11-Dec-11 17:45:22

grin no idea. i'm assuming that's why they need to get the ortho dudes to measure it all properly and have a good look, because the rest of us are just guessing... grin

lol at keep your feet straight. if only. grin

i think the physio is leaning towards afos <sigh>. no-one else has bothered, because dd2 is so functional it would actually reduce her function rather than improve it. but i think we are at the point where she's going to grow so much that we might be causing more damage etc if we just let her get on with what she's doing. <sigh> so i suppose we do need to look at safeguarding her joints for the future.

dd1's friend has a desperately cool leopard print afo that she just wears for physical activities, so at least dd2 has seen someone who is used to it and manages really well....

they did try a lift in one shoe years ago... but i can't remember that much about it blush i'm slightly alarmed about the injection thing, that sounds bizarre! (and i'm really short lol, the last thing we need to do is stunt her growth in any way!!!)

beca74 Sun 11-Dec-11 21:04:30

sorry very new to this can u tell me what afo is

survivingwinter Sun 11-Dec-11 21:12:30

Hi beca74 - afo's are orthotics - splints

There are different types - if you google afo you can see pics

survivingwinter Sun 11-Dec-11 21:14:35
beca74 Sun 11-Dec-11 21:26:04

oh thank you dd going for hand splints and to be measured for feet

chatee Sun 11-Dec-11 22:25:38

hi budgie,
i am sure we have chatted before,

will post later in the week regarding leg length discrepancy(am sure my dd is just slightly older than yours as she is now in year 7)and possibly facing surgery next year.
sorry it's so quick but have had a loonnnng day!

hildathebuilder Mon 12-Dec-11 13:38:51

AAAGhhh

I am having a one step forward two steps back kind of a day, and need to let it out somewhere. And the bloomin computer just lost my post.

Reasons to be cheerful

Private physio says DS will not need splints forever, and will get away with having built up shoes. Also was very impressed with his progress and improvements in his core stability.

NHS physio is now talking about when DS will walk (earliest will be March latest sometime in summer apparently) DS will be 2 at end of May so late but not too late.

Physio says DS porbelms are "just" physical

CDC are talking about school and adjusting PE lessons

BUT>>>>>

In amongst it all to get us to there DS is now going to get an OT referral (having been told 2 weeks ago it wasn't necessary, but apparently its for the nursery to make adaptions etc to stairs and steps, and changing area not for him if that makes sense- but yet another professional to fit it)

And he needs a kaye walker as he is getting nowhere with walking toys, and I have to find a way to get it from home to nursery - a trip we do by bike - so that will be interesting. (and It may be I have to change my hours as I will have to now pick DS up on a Friday if it takes both of us to get him home)

the other parents at nursery are making comments about how much extra attention DS gets. The nursery are pissed off about that (although despite the temptation I didn't tell them which parents - dusts off halo against betetr judgement). Although they also say it must be because you cannot tell which I guess is good but its still crap.

But it all seems to highlight the differences.

Now I know from this thread and others that this is the hard stage when everything hits you as all the NT children are making progress but DS will be late, but please can someone remind me of this. And that the AFOs and the shorts and the walker will all be temporary, And that when the physiops say they are being agressive now that means just that and it isn't a predictor for the future as its too soon to tell.

And that this will all work out "ok" in the end as I am struggling.

survivingwinter Mon 12-Dec-11 14:14:55

Yay to the positive things Hilda smile his walking timescale sounds really positive and great that he is making such good progress..

Can't believe any parent would be commenting on him having extra time and attention at nursery - what is wrong with some people!

OT referral sounds good - they are also great for low core tone exercises IME also if your ds needs any extra support/facilities set up in school e.g laptop, accessibility the OT link can be really helpful. Does your DS have an IEP?

Agree that this stage is the hardest re progress - I remember when all my DD's friends were walking (some a year younger than her sad) but he will get there sad

survivingwinter Mon 12-Dec-11 14:15:58

That was meant to be a smile at the end darn smileys!!

madwomanintheattic Mon 12-Dec-11 15:24:02

oh hilda i loved dd2's walker. she started off with a kaye, and had it for a few years (we had to do the to/ from nursery bit, although they funded a standing frame for nursery). then they decided she should try without it to see if it would encourage her to walk independently. <sigh>

the year we didn't have one (just before school) was awful - it was heartbreaking to see her much less able because they had taken away her walker, and she really wasn't ready to walk - she could fling herself across a room (think just early toddling when they can't stop) and then have to grab at someone/ something to stay upright.

so after a year we went back to a walker (she had an r82 croc for school - it was awesome, much better than a kaye) and that gave her the transition she needed. just another year and she was fine. she's been happily independent since.

i loved the independence she had with a walker. and so did she. i remember her being soooo excited to walk the full length of the promenade when we went on holiday to the isle of wight. she literally grinned from ear to ear the whole way, with all of the other holiday makers grinning and waving back because they could see she was just having the time of her life.

i should warn you that a walker is every nursery child's favourite toy though, so there will be queue of kids wanting a go... <sigh>

when she got competent, she would speed up and then lift herself up on her arms and sit on the back of it, to whizz along with no legs grin. and the reason we had to get the croc because she wanted to reverse and turn on a sixpence, and the kaye really wasn't up to the job.

dd2 'just' has physical difficulties. grin

ot was good for dd2 (still is). she does have fine motor difficulties and is mostly using a net book now, but they were great for sorting out adaptations. she needed a bar around the toilets so that she could balance etc. and they assessed the school for yr r and made sure there were dd2 height handrails on all the stairs. (she had 1-1 and the policy was that she would use any stairs last so that she didn't get bumped and jostled. this policy didn't extend to her new school in yr 1, despite me telling them, and she went over backwards on the stairs and took out the TA as well....) they were great at getting loads of different cutlery together etc and seeing which ones she was most able to get a grip of.

have you got a bike trailer? the kaye's do fold, so it would probably be fine in there (i think i used two webbing straps and fastened the back to the horizontal bit of the trailer?)

sneezecakesmum Mon 12-Dec-11 20:26:58

Been a bit of a crap day for DD and little DGS. First he's got a willie infection shock ...cries when he wees, horrible to see, but went to docs and got antibiotics. Maybe something to do with drinking only a third of whats normal. Also MDT meeting and he's only put on half a pound. sad He was doing OKish with lots of feeding, cream, dense cals, supplements and weight was going up, but since nursery (only 1 morning a week) in sept. its cold after cold after puking bug, and he now looks undernourished and is much more tired than before and struggles to find the energy for his exercises.

Paed again said PEG and DD and SIL I think are looking at this now as the only option and even though it seems like defeat, to see him so pale and thin is heartbreaking. Think it was the vom bug that did the worse, but snottiness makes him puke loads too. Sad as he was picking up really well with feeding and more interested in different foods.

But, it will hopefully take the stress out of feeding, help with his immunity, help with sleeping, get more fluids in, and break the vicious cycle of illness and losing weight. Its a shame as he can eat pretty well, no swallowing issues and loves chewing his t shirts but sadly not real food! Happily feeds the dog oranges tho so not phobic. Got a good report from germ factory nursery though smile

madwomanintheattic Mon 12-Dec-11 20:39:22

have i ever given you this link before?

new-vis has loads of stuff on tube feeding and promoting oral stuff - i really like it. (dd2 was ng-fed initially as she had no suck or swallow) it's put together by a slt, so you do get a sensible discussion about pros and cons, and it's very pro-oral, as well as practical about tubes. have a look around the site anyway. (i think i linked to an article, but the 'feed your mind' button is a good place to start). it doesn't have to be forever, and a bit of extra weight might help him fight off the germs better. smile

ds1 had a willy infection at about the same age and he drank gallons, so try and think of it as just one of those things. poor wee man. at least it will be out of the way before the holiday!

budgieshell Mon 12-Dec-11 20:41:41

Special thanks to Chatee for the info will check it out later. (everything is later with me at the moment).
A lot of us are talking about the physical problems,has any one any issues with short term memory problems? My DD has problems with maths, her ed pysic has said some children with CP can have short term memory problems. This is a problem in maths because you hold a number in your memory while you think about the next part of the sum. Now the teacher knows this is the problem she is allowed to make notes (not quite mental maths,but hey).
This problem does not seem to effect any other area of learning, doing very well in all other subjects.
Has anyone else had this?

survivingwinter Mon 12-Dec-11 20:47:08

My DS (7) has problems with his short term memory - he's the supposedly NT one! The school have done lots of work with him to improve auditory memory and it is slowly improving although he is still very behind with his maths. Ironically his reading and speech are excellent - it just affects maths and problem solving skills.

sneezecakesmum Mon 12-Dec-11 21:12:34

Thanks for that madwoman. The bit about failure is right but we need to take a positive angle, especially with DGSs health and energy level issues. There is a waiting list so we'll keep pushing those calories for now. We'll look at the PEG thing as a way of just increasing the calories and maintaining oral feeding but without having to push the 'one last spoon' and 'one for daddy' stuff!

chatee Mon 12-Dec-11 22:08:19

omg
survivingwinter ...are you my twin

My DS (7) has problems with his short term memory - he's the supposedly NT one! The school have done lots of work with him to improve auditory memory and it is slowly improving although he is still very behind with his maths. Ironically his reading and speech are excellent - it just affects maths and problem solving skills.

my dd will say things like
" when i was in year 3 i knew my 2,5,10,3,6,9,4 n 8 times tables and she did but (and we shouldn't do it) we say it must be nice to live on 'chatee's ds' planet' as he really is away with the space men sometimes and does struggle with maths

i don't want to 'push him' but deep down am getting a little worried as he also struggles with learning to swim (and he will be doing that with school after xmas) and took ages to learn to ride his bike and scooter(oh the comedy value that was !)
but on a positive side he has lovely hand writing and dd looks like a spider has strteched across the page sometimes(especially when tired)but is about to progress to using a netbook for most lessons.

hildathebuilder Tue 13-Dec-11 09:39:58

Thank you madwoman and surviving winter. Just what I needed a little bit of perspective, and mainly I do know we are doing well but it doesn't always make it easy DS has now got a stinking cold, not sleeping etc so I am on the look out for bronch or other respitory issues which in the scheme of things remain more worrying. Onwards and upwards

EndOfTheRoad2011 Wed 14-Dec-11 12:28:32

Hi all, hope you don't mind me posting here my DD doesn't have CP but SMA and is a full time wheelchair user in MS school - manual at the moment but her muscles are deteriorating so will be in an electric wheelchair from Jan. She has a full time one to one carer at school to assist her but have just found out the main TA is going to be removed from the classroom - I am concerned that the level of support she is receiving is going to go downhill - is there anything I can say or do?

madwomanintheattic Wed 14-Dec-11 14:38:21

is she statemented for ft 1-1? what year group is she?

i might be tempted to pop into school in a friendly manner and ask if they can reassure you that it won't have an impact? you can couch it in terms of popping in to chat about her new chair and logistics maybe? (just so that they know you are on the ball...)

they do try to phase out TA support as classess move through the school - i think mine had them in yr r and 1, but only a pt TA in yr 2. dd2's TA was ft 2:1 - she had her hands full with dd2 and a little girl with VI - a motley pair!

i would keep it to a friendly chat at the mo and they will probably reassure you. but keep an eye in the new year...

wentshopping Wed 14-Dec-11 14:58:15

sneezecake I have mentioned my dd's g-tube earlier in this thread - we held off on it for so long, and every visit to the dr she hadn't gained weight. We went ahead over the summer, and it was a great decision - I know my dd is quite a bit older than your dgs, but we have found the following advantages - if she's sick (always sick the second week back at school, after time away from other people's germs) the medicine goes straight in the tube, so no spitting it back, or worrying about not enough getting swallowed;she sleeps most nights (from waking 5 nights per week); her school grades have vastly improved as she goes to school with a full tummy, oh and she has put on a little weight - it's mainly energy levels where it is most obvious. We still give her all her meals, an extra snack and bedtime milk orally; the tube is used for morning and evening supplemental feeding, with the morning one done before she wakes up. We are not even considering overnight pump or anything like that. One of her drs suggested if we were really unsure about g-tube to try ng tube for a couple of months for supplemental feeding, but as she is 10 yrs I decided it would be too obvious, and awkward for school, physio etc going around with a tube taped to her face - but could you consider this for your little dgs?

sneezecakesmum Wed 14-Dec-11 20:56:52

Hi wentshopping (me too-xmas pressies all bought!)
DGSs mum and dad and me have all come round to the idea. We've heard loads of stories like yours of holding off as long as possible, but being the best thing once its done. tbh the though of an op is terrifying sad if we could wave a wand and have it done it would be in tomorrow!

ng tube not an option as he'd have it out in a flash! (pulled his breathing tube out day one - setting a precedent!) Overnight feeds also out as he is a restless sleeper, but again the plan would be a big milky feed before bed in the hope he will sleep more soundly. ditto wonderful ideal of giving him nourishment when he's poorly, more energy for the physio. At the moment he still needs an afternoon nap. Previously as soon as he had a growth spurt all the extra eating he did would go vertically, so still looks like a child in a famine zone. Yesterday babysat while mum worked and it took me 40 minutes for breakfast, which he puked and 40 minutes for lunch. plus the hi cal supplements and the petit filous, I was tearing my hair out and just seemed to be constantly feeding him. DD is much better as he doesnt mess her around grin.

With a PEG we can top him up hourly on mcdonalds milkshake (cal loaded apparently) and no aggro! Its 4 months on the waiting list so we will really try to get his weight up again and if he gets on the chart we may hold off, but also need to get him healthy for the op.

He's getting better on his tummy and rolls himself around a lot, does the peg opening interfere with this? Did it take long to heal - he loves his weekly hydro? Can you get something to go round his middle so a) cant mess with it b) protects it from knocks? Is it uncomfortable for your DD?

wentshopping Wed 14-Dec-11 23:04:44

Hi sneezecake (and I'm always shopping, not just for xmas!)
My dd has very strong tongue thrust, so while you can get a meal in her mouth, most of it comes back out to decorate her clothes, and she's not great at liquids so getting a good feed in her tube, and it all staying in there is just brilliant. I know what you mean about the 40 minute meals.
I think I mentioned before that we live in the US, so some of the actual procedure may be different, but basically she had the op on a Friday, then first tube feed Sunday, home on Monday. They put a tube placement in first - small incision into her stomach, then from the inside made a hole that the tube would go in, sewing the stomach lining to the outer wall of the abdomen so that the ""tunnel" that is made won't leak anywhere, then left a tube in place which stuck out about 5 or 6 inches, but was flexible so you could tuck it into her waistband. It was held in place with a small plastic disc with dissolving stitches which meant you couldn't pull the tube out . This stayed in for 4 weeks, with no swimming, although at one point I thought it was looking a bit red so I took her back and another doctor said "of course you can swim, its 110 degrees outside", on the proviso that it was a heavily chlorinated pool - ie our own, where we could monitor the water - so we didn't go in any public pools on holiday, but I imagine your hydro place is super careful about chlorination given the people who use it? In this 4 week period we were travelling, so I devised "button trousers" which was a large square adhesive bandage with a slit for the tube to protude - it looked like a pair of trousers - this covered up the site in case of over-zealous pat-downs at the airport! Then she went back and they pulled out the tube and inserted the g-button - it looks exactly like the valve on a beach ball, and the same size. I was a bit paranoid about her chest harness of her wheelchair catching it, but am calm about that now. When she goes in her gait trainer she wears an aerobic "slimming belt" bought from a sports shop over her clothes - covers up everything so you know even if she moves quite vigorously she can't get the button caught on anything. As for healing, it still has a little red crust which dries and re-crusts all the time - apparently this is normal as the body is trying to heal the hole shut. In terms of getting back to normal - she was a bit sorry for herself on the first day, but happy to lie in hospital, play ipad and receive visitors after that. smile I feed her pediasure - again cal loaded - and someone really helpful on mumsnet gave me a UK website for while we were in the UK this summer - otherwise you can get it on prescription - you don't need to refrigerate it so you can have a bottle in your bag for whenever. I am a bit surprised that she never touches it, although looks in the mirror at it. She loves the fact that she doesnt have to taste medicine, and I really appreciated it when we were travelling as a full tummy took 5 minutes instead of an hour and a change of clothes. Hope that helps - sorry I do go on a bit....

sneezecakesmum Thu 15-Dec-11 20:12:09

Hi wentshopping, dont mind you going on, even though it all seems a bit daunting, we need to know what to expect. I am sure we can get pediasure on prescription. The hydro pool is very clean as it belongs to the hospital physio department, so hope he's not out for very long. We have heard of g buttons and know a little boy with something along those lines, but have actually never asked! Sounds horrible tbh but got to look at the plus side, we will be shoving calorific fluids down it like crazy! DGS only sticks his tongue out when excited as part of his extension pattern, not when eating, but seems so not interested in food, you'd think it was sawdust, and we think some of the gagging is now behavioural. It did stop a few months ago, but with all the bugs from the germ factory causing snotty vomits and buggy vomiting, he now associates food with puking. Again the peg may reduce that behavioural thing. smile

madwomanintheattic Sat 17-Dec-11 18:36:32

right ladies, i'm off to rl for a couple of weeks (my annual mn-fast grin) so have yourselves and your loved ones a relaxing and safe christmas x

see you in the new year for our next round of challenges wink x

sneezecake Mon 19-Dec-11 14:52:25

Merry xmas madwoman.

inhibernation Sun 25-Dec-11 20:07:08

Merry Xmas all. Will pop back in the new year and catch up properly.

inhibernation Fri 06-Jan-12 21:34:43

Happy New Year all.

Lots to report but will be back soon. Marking my placesmile Hope you all had a good Christmas

survivingwinter Sat 07-Jan-12 20:09:37

Oooh are we back!! Happy new year smile

outofbodyexperience Sun 08-Jan-12 22:24:55

happy new year! (tis madwoman. i find myself inadvertently locked out of my username blush)

dd2's downhill ski programme started yesterday and she had a ball. grin

she has also decided that she needs to change her dance class, as tap is too hard. smile it's an admission of defeat as she really really wanted to learn, but i think it's the right decision and i'm soooo proud of her for making it.

<waves to everyone>

inhibernation Mon 09-Jan-12 00:22:18

madwoman - I think tap dancing would defeat most of us to be fair smile but I can imagine how hard it was for your dd to have to make that decision. It makes me realise that I need to start thinking about these situations and how to tackle them with dd when the time comes. Glad dd enjoyed the skiing.

surviving - how is dd doing?

sneezecake - belated props to your dgs for mastering the art of pointing smile Did he enjoy Christmas?

dd had a blast at Christmas time. Totally got into the present thing, the tree, lights etc. Not much physio over Xmas due to us being away, visiting friends etc but we borrowed some tripods. She hasn't mastered them yet but we're taking it slowly. Independent walking is improving. On friday she took about 10 steps. Walking is more controlled as well. Obviously she is still very stiff and she toes in (one side more than the other) but it is awesome to see her walk any steps unaided smile It makes me feel very emotional. We are still waiting for dd to be referred to Bristol. Slow progress there. Hope to hear something soon though. She is also still waiting to see the Orthopaedic team at the Evelina. We are in referral land at the moment <sigh>

outofbodyexperience Mon 09-Jan-12 00:40:39

tripods grin dd2 was more dangerous with them than without! kudos for giving them a go! have you got a trike btw? i can't remember who's got what... dd2 loved her trike... she's got a mega cool low rider thingy now (still a trike, but low like a go-cart) that she can get on and off by herself. we just bought rack for the damn thing as it won't fit on a standard bike rack, and we have to put it on top of the car in a great big basket thing and ratchet it in. i stand no chance of doing it alone. <sigh> fortunately spring is a long time off, yet.

we are about to enter referral land again for the neuromotor clinic. it's been ages since we were on a waiting list!!! very odd. sometimes you have to let real life take over for a while and let the physio take a back seat. glad you all had a great time x

can we make another list of who/ which kids are on teh thread btw? i'm a bit decrepit and can never remember how old everyone is:

mad/ outofbody - dd2 athetoid cp 8yo

please add so that i can jump start my new year brain!!!

thereonthestair Mon 09-Jan-12 10:02:12

Hello everyone, Happy New Year.

Tis Hilda, but I outed myself inadvertantly last week and so have namechanged.

Anyway I have DS, now 19 + months corrected age with spastic diplegia. He seems to be doing very well, but who knows. Now walking with his toddle truck thing, both at home and nursery and crawling/climbing up and down stairs. Also getting better at standing independently, and getting to a point where he will not be helped with some tasks and wants to cruse over gaps etc between the furniture. His crawling is now ordinary almost all the time, even with his afos on.

Christmas was crap as he got bronchiolitis again, and I spent the night up with him every 30-45 minutes on boxing day - 27th. No-one else would do for him. Then had to entertain my parents and sister after dh had compeltely lost his rag with them the day before. Anyway as soon as they left DS was fine again.

He's in full on terrible 2 tantrum phase though and getting so frustrated when he can't do things. Then finding it hilarious when I tell him not to do things (liek turn the tv off, or spill milk on the floor).

outofbodyexperience Mon 09-Jan-12 14:01:09

ugh at christmas, but wow, he sounds like a bundle of fun at the moment, he's doing so well! grin

survivingwinter Mon 09-Jan-12 14:41:04

outofbody/madwoman - the penny has just dropped - have been asking you lots of q's over on the other thread!!

inhibernation - so glad your dd continues to progress with her walking - how exciting smile Who/where are you being referred to in Bristol?

Oh and a refresher is a good idea too outofbody:

Survivingsummer - DD is 4 with hypoxic brain injury and as yet undiagnosed mild CP (athetoid/fluctuating tone)

outofbodyexperience Mon 09-Jan-12 17:02:25

lol, that's funny. i'm trying to be really obvious - i think i did say over there who i 'really' was... i just can't get back to 'me' at the mo! grin

outof/mad - dd2 8yo athetoid cp
hilda/there - ds 19mo spastic diplegia
surviving - dd 4yo athetoid tbc

that does remind me of one our old physios - before we had the re-dx mri (she was spastic quad before) the physio referred to dd2 as having lots of 'athetoidy' movements. so she was 'athetoidy' for ages, rather than athetoid. grin so dd can take the 'athetoidy' mantle for a while, surviving. grin

Jakeandsophiesmum Mon 09-Jan-12 19:58:50

Hi, I would like to join this thread! My Ds was diagnosed with left hemiplegia in September 2011. This has all come as a shock to us as we never considered cp to be the diagnosis. He has had a MRI scan in December which the consultant has written to us with the results saying it was normal and doesn't change his diagnosis. We assumed that the cp would show up on MRI and now feel confused. He is just starting to stand and try to take steps - but only with his piedro boots on. He doesn't speak but is such a happy little boy. It would be nice to chat to other mums and dads with children who have cp as it all feels a little lonely. We only see the physio once a month and the consultant every 3 months. We haven't even heard from our health visitor since his diagnosis. sad

outofbodyexperience Mon 09-Jan-12 20:24:24

have you applied for dla, jake?

brains and mri. mmm. sometimes you can get quite severe brain damage but few outward signs, and sometimes a pretty clear mri with very severe disability. it's a minefield, for sure.

fab that he's starting to walk - piedros are grand. dd2 had them for about 5 years grin. how old is he? we were told dd2 wouldn't be verbal, but she started speaking about 3 and won't stop now... have you found the hemihelp website etc? not sure if they have a forum as well...

hello, anyway!

Jakeandsophiesmum Mon 09-Jan-12 20:38:20

Thank-you so much for your speedy reply. Jake is 16 months, haven't applied for DLA as its seems so hard to get. Had a look at the website and the basic criteria is the child must need more assistance than a "normal" child of the same age. With jake being 16 months I figure all babies require about the same amount of care, although we can't take our eyes off him for a minute as he falls a lot and he has a nasty habit of banging his head on the floor for no reason. It's so hard to know what to do without guidance!!

skewiff Mon 09-Jan-12 21:01:26

Hello:

I have a DS who also has hemiplegia (left sided). He is nearly 5. We found out when he was 6months old. We never had an MRI scan done (did try, but it was a nightmare and we didn't want to put DS through it again) - but I do know that some people can have clear results but still have CP and some people have brain damage, but no symptoms of CP or anything else. This is the reason we didn't want to go through it again.

Our little boy is doing so so well now!! Admittedly we have done loads and loads of different therapies which I'll be happy to share with you if you want to know. However, I think the thing that has helped most is just that we have helped him and encouraged him in every aspect of his life - encouraging him to do all the things he can't do - putting in a lot of extra effort with every step of his development - and its all paid off.

DS is riding a bike now without stablisers. He can nearly swim. He can't use his left hand much and has a little bit of a limp - running and climbing is a bit harder for him ... sometimes not possible, all of it that his friends are doing. But DS is not bothered and I really mean that!

I was so upset at the thought of DS not being able to do everything his friends can do, but now I see that everyone is good at different things and it doesn't matter if we can't all do exactly the same as everyone else.

Have you been on hemihelp website?? Go on that forum, its really really helpful. Its a charity for people with hemiplegia and their families.

Any other questions, please ask x

inhibernation Mon 09-Jan-12 22:23:05

outof/mad - dd2 8yo athetoid cp
hilda/there - ds 19mo spastic diplegia
surviving - dd 4yo athetoid tbc
inhibernation - dd 2 yo spastic diplegia

hilda/there - sorry to hear ds was ill over xmas but glad to hear he is progressing so well with gross motor skills and doing all the normal things that almost two year olds do such as being naughty grin

mum to jake - to qualify for DLA you need to show that ds needs more care than a child who doesn't have additional needs. The fact that ds needs constant supervision due to balance issues/falls etc. is a good enough reason to apply. However, I would advise that you get a report from his paediatrician or physio therapist to give best chance of being awarded the right rate. dd was initially awarded low rate care but we asked them to look at it again and physio did a report. Dd then got middle rate.

SydneyScarborough Tue 10-Jan-12 02:33:51

Message withdrawn at poster's request.

thereonthestair Tue 10-Jan-12 10:32:06

I typed a great long reply but then the computer lost it. Typical.

Jake we applied for DLA for DS when he was the equivalent of 13 months. Like inhibernation we got lower rate to start with then middle rate when we asked for a reconsideration. I spent ages trying to decide whether to apply, and then about 60 mins doing the actual form (I found that bit quite straightforward, although depressing, and in my case did not get anyone else to help or look over it, but I know lots of people recommend getting help) I found it depressing but it was clear DS was entitled to it (and we spend it on private physio sessions) Once it hought about it I realised that because of the CP I did do more, for example at the time I filled the form in I explaiend that I can't leave ds in the bath without him toppling as he can't balance very well, (not that I would anyway but depending on his mood bathing ds is a 2 man job) It takes longer to dress him because of the AFOS (like piedros) which have to be fitted each time I change his nappy, I still have to carry him from activity to activity which a normal child would not need as they could crawl, I have to carry him up stairs etc. I also explained he still needed to be fitted in a chair bag rather than sit on a chair when eating a snack. And whatever you think about what his comparators do if you watch their paretns they are not doing as much when the children sit, read, swim etc as you will undoubtedly be doing as second nature. Then there was all the info about the physio etc and the exercises he did. I did send report from the neonatologists from the time he was born, along with reports from his physio and the nursery and I know that the DWP also asked for a follow up report even if the reports I had already sent ran to about 30 pages. I had some other issues to include such as breathing issues and inhalers as DS also has asthma and hypermobility but I truly believe he was entitled to the money in any event.

Sydney welcome. I have a relative who has a similar story after their son caught meningitis in the middle of the outback which even with an air ambulance delayed help being received. He is still behind where he would ahve been but after 5 years can now walk again, and his speech and fine motor are coming on. It has taken a lot of therapy to get there, but I know he is getting there. A lot of the learning is very similar to the learning I have for DS so I am sure that others with older children and more knowledge will help and answer whatever questions you have.

outofbodyexperience Tue 10-Jan-12 15:22:31

hi syd, yy, of course you belong. smile the not for profit i volunteer for (well, one of them) does lots of work with brain injury survivors. there are lots of similarities and i think acquired brain injury must be doubly hard for both the survivor and the relatives. sad

jake - just the fact that you have a cp dx will go a long way to determining receipt of dla. fill out the forms and include all professional reports, and paed's details. we were advised to apply at 6mos. 16mos is old enough to know that he isn't going to make a miraculous recovery overnight, even if his progress is steady. it is re-evaluated periodically and so care needs would be adjusted in any case. do apply. i felt much the same, much a wise sn hv said, look, she's oonly doing so well, because of all the extra support she gets... she won't without it.

it will be useful in a year for adapted trikes etc, trust me, these things cost money... <sigh>

2old2beamum Tue 10-Jan-12 15:28:41

Welcome sydney, my son (adopted) was reaching all milestones 8-9 months. His birth mother was off this planet with heroin (sorry don't like being unkind) and unaware he had pneumococcal meningitis and arrived at hospital virtually dead. He was left Deafblind and CP however despite his disabilities although unable to walk he can communicate albeit limited by using "on body sign language" and by using objects of reference. We are so proud of him! He is13 and like your DD cannot feed. Although in a different situation to you I still grieve for the boy he should have been I wish you all the best and please try to look forward and I am only an adoptive mum so goodness knows how you feel

Jakeandsophiesmum Tue 10-Jan-12 16:22:08

Thank- you all so much for your supportive messages. I have printed off the forms and will sit down tonight to start a draft copy. Sometimes you just need to hear the words from someone else to realise what you need to do!! smile

outofbodyexperience Tue 10-Jan-12 17:23:59

Good luck - it can be hard work, and a bit grueling, but the first time is the worst. Think in terms of the 'worst day' to make sure you include everything - so if there are days when physio is extra hard because he doesn't co-operate, make sure it goes in. We all tend to try and ignore those moments in our heads, or we'd go crazy, but they do need capturing for the forms.

And, for all you hemi parents, dd2 started cross country skiing last night in an adaptive group. Dd1's friend x has left hemi and it's her second year doing it. This girl flies grin. She wears an afo and used only one pole, and she was amazing. She's 10 now, I think. Unless you realized she was only using one pole, and wondered why, you honestly wouldn't have known to watch her cover the ground. In summer in shorts and watching her walk it's v noticeable, but on skis she's brill. She's also learning to snowboard this year. grin

HairyMaclary Tue 10-Jan-12 21:14:17

Hello everyone, old and new, nice to see new faces (iyswim) hope you all had a good Christmas and New Year and are settling back to normality. We are looking forward to this year as just before Christmas we got a letter confirming that DS will be getting funding for SDR on the NHS! It only took nearly a year and letters from the MP but never mind we've got there. This year will therefore be chaos while we deal with the op and the long recovery / rehab period but I'm really looking forward to the end result, while trying not to set my expectations too high! No date set yet but it should be sometime within the next 6 months.

Mad - for the list - DS age 6 nearly 7 with spastic diplegia.

Will catch up with what you've all said now!

outofbodyexperience Tue 10-Jan-12 21:23:54

Wow, hairy, that's amazing news. I only know of people who have fund-raised and gone to the us. I don't know anyone who has managed to get this far on the nhs - you go, girl! It will be soooo interesting to see what happens. You must be veering wildly between excited and terrified!

On silly iPad, so will add to list later...

SydneyScarborough Wed 11-Jan-12 00:48:41

Message withdrawn at poster's request.

verycherry Wed 11-Jan-12 13:56:08

Hi all, have chatted to some of you in the past.

My DS is now nearly 4 and a half and has spastic diplegia, he walked independently at 3.2 yrs and is now at full time, ms, school. He had Botox last June and is due again end of this month - the difference since Botox is just absolutely staggering, his physio says he has had the best result she has ever seen in 11 years.

Think this thread is a fab idea, will be lurking and contributing (if I have anything interesting to say!!!)

outofbody did you find the trike really useful? Have been looking around at them, we tried a bike with stabilisers in physio but there is no way DS can manage it. We bought him a scooter for Christmas which he can just about manage with help, but definitely be difficult for him outside.

Have been trying to cut and copy to add to list but on iPad and not having much success! So for anyone else who can:

Verycherry - DS, 4, spastic diplegia

Right, off to clean bathroom before DS4 gets up......

survivingwinter Wed 11-Jan-12 14:29:15

Welcome sydney and JakeandSophiesmum!

Think this is the list so far:
outof/mad - dd2 8yo athetoid cp
hilda/there - ds 19mo spastic diplegia
surviving - dd 4yo athetoid tbc
inhibernation - dd 2 yo spastic diplegia
hairy - DS age 6 nearly 7 with spastic diplegia.
Verycherry - DS, 4, spastic diplegia

Verycherry - would your DS be too big for one of these? http://www.elc.co.uk/Blue-Didicar/124699,default,pd.html

My DD can't yet manage on her scooter really - I end up pulling her along on it!! On the plus side she managed to stand on one leg for 4 seconds yesterday - this is still really hard for her with her dodgy balance so we are definitely moving in the right direction. Can't wait to tell her physio...

outofbodyexperience Wed 11-Jan-12 14:50:41

We had a kitten trike to start with and used the parent handle at the front at first, then moved it to the back, and eventually she got the hang of the whole pedal thing. It was pretty good, as she started with a full pelvis and chest support, and ankle/ pedal straps etc, but we could take different bits off as her development moved on. Tomcat trikes are also pretty good, but they were having some problems with their supply when we were in a position to order.

If you can, it's worth trying to get to a kids north/ south / middle and trying some out... A lot of physics will run days when the rep for a particular comes out too, so if you let your physio know you are looking. (well, in the uk and Canada anyway lol, I assume it's the same in the us!)

We also ordered an sn trike through the nursery - it had a triangular base so was a lot more stable... They don't make them very big though, so by the time she was able to get the hang of it she was too tall/ old really. That said, we've just adapted a skateboard by putting a handle on it, and now radio flyer have started making them and shipping ( they were only available in the us before)

Where is dd skiing, sydneyscarborough? (nosy)

wentshopping Wed 11-Jan-12 15:17:56

Happy New Year everyone. DD3 born in UK, cp diagnosis due to birth injury. We now live in US, and dd goes to ms school, uses eye gaze communication device to speak, write, surf internet etc; she had g-tube fitted last summer to supplement feeding:

wentshopping dd3 age 10, spastic/athetoid quadriplegia

wentshopping Wed 11-Jan-12 15:56:55

Sydney - I have just been reading your blog (not all of it yet, though), and I see your dd has a mytobii - my dd has an eco, which is essentially the same thing. It did take her a little while to get used to, but she had been using a switch operated device since the age of 3 (head switches). Her communication has really come on in the past few months, and she now uses the device to skype family back in the UK. They have to be rather patient while she "composes" whatever she is going to say!
DD also has a power wheelchair - she got it when she was in kindergarten - dh was quite resistant at first, but therapists encouraged us to get it because the vestibular movement feedback would be beneficial to her in terms of balance, and getting the feeling of where your body should be in space when you are moving yourself around. After a year of persevering with a joystick - her hand would fly off it in shock every time she moved forward - we tried a head array (all the controls are inside the headrest), and it took her about 20 minutes to master it completely. Now she "runs off" in the grocery store. I don't know if this is something you can consider for your dd?
If you get a chance to travel while you are in the US, do consider San Antonio for Morgans Wonderland. My dd loves it (and only a 4 hour drive away!) www.morganswonderland.com/
Good luck and let me know if you need anything!

SydneyScarborough Wed 11-Jan-12 17:10:52

Message withdrawn at poster's request.

wentshopping Wed 11-Jan-12 17:28:26

sydney Yes, ms school = mainstream. She's in 4th grade, and gets pulled out for extra help in reading and maths. She started special school here aged 3, then transferred to pre-K (infants?) in a mixed regular-ed, and special ed class, and has been in mainstream ever since. The first couple of years were difficult in that too much time was spent on "isn't she cute", and not enough on getting reading/math started, so she is behind on those. But, then again, some regular children are behind on those too. (dd1 and dd2 are in gifted and talented programme, so I always set the bar too high!)
Morgan's Wonderland advertises itself as the first park of its kind in the world, but I bet there are smaller accessible parks near you. My dd loved driving herself up and down the playgrounds without me.

SydneyScarborough Wed 11-Jan-12 17:38:06

Message withdrawn at poster's request.

wentshopping Wed 11-Jan-12 18:45:43

We moved over here when dd3 was a baby, getting 1 visit from physio every 3 weeks... of course she is much older now, but she goes to a private therapy clinic now three times a week after school for pt, ot and speech. I would say she has got to the stage with her communication device that she understands how it works better than some teachers, but needs speech help to formulate full sentences, and widen her vocabulary. In state mainstream school here she has pt, ot and speech help, but the pt and ot is more of a monitoring capacity to check she is positioned correctly. They do not have the time or staff to do intensive pt with her, for example.
On funding - the school district funds her communication device and TA; everything else we use our insurance or pay ourselves. I know benefits etc are shrinking in the UK, but it would be nice to get some help with big purchases (thinking of out-grown power chair... our insurance will only buy one chair, so I am about to start that long process, knowing that we will be paying in full for her manual chair)
Something I am always amazed at is how innovative European designs are for equipment - companies like jenx, alvema, even tobii - the US doesn't seem to favour new designs - school buses... I rest my case. For this reason we have a Swedish power chair, and I want a European manual chair, as I am sick of the poor quality parts on her current one. (Now I am probably contradicting myself, wanting "help" and the most expensive brands. Ho hum)
A lot of the differences can come down to the people involved in your care, don't you think? We have been very lucky with the TAs at school, but you never know how that will go. Likewise, therapy.

verycherry Wed 11-Jan-12 19:08:42

Sydney DS had his first lot of Botox at our local district general under the ortho's - one consultant has a particular interest and is very pro Botox.

I wasn't actually there, his dad took him (I was at ascot blush had paid for everything and bought new outfit etc before date came through, felt dreadful as have been with him for every single appt etc but his daddy is more than capable of looking after him and DS didn't care a jot!), dp said they were very efficient, intranasal midazolam and a two very quick injections then home!

I began to notice a difference immediately, his gait improved, his stability improved and within days everyone was commenting on how improved his walking was. He didn't fall more or have any of the other side effects we were told about. I can tell its wearing off now as he is swinging and internally rotating his left leg again and can only walk short distances - slowly!

His ortho consultant was v impressed with the result, he was videoed pre and post Botox and had 6 wks of physio post Botox. However, I gather from the reaction of the hcp's involved, that he as been 'lucky' to have had such a good result - maybe he has just responded well to it?

His physio did say before he had it that the effects can differ madly from child to child.

How did it differ in the US?

It's really interesting to hear about your experiences in the US, and wentshopping's and outof's in Canada - I do think that the NHS can be very reactive - well actually the whole social/medical care system/model here is reactive. We've been lucky to have a fab physio but our paed is rubbish - lovely, but rubbish! And we have only just had OT involvement and are being told DS won't get a statement...... This is a child who needs constant supervision outside, in a unit that allows the children open access to the outside area. This is a child that will probably use a laptop for all written work, and oh yes he can't even carry his own lunch tray - and probably never will........ Interesting times ahead I feel.

slowburner Wed 11-Jan-12 19:34:56

Happy New Year everyone!

I have a 17mo toddler with moderate (grade II hie) due to a medical error during delivery.

Initially high tone all over her tone became normal all over except for stiff shoulders. She crawled and now walk/runs everywhere, we have had poor access to physio deprived the pediatrician wanting her seen regularly. Last October time physio gave a hemi CP dx but we haven't heard from her since, paed disagrees stating its too early to tell. We start at brainwave next month. OT said when we saw her dd is able to manage and although intensive therapy would help we wouldn't get it.

um. Christmas was good, quiet but nice, dd currently has a raging temperature, awful cough and cold and we're taking it in turns to have her sleep on us as she is really exhausted and is refusing food, only wanting milk.

outofbodyexperience Wed 11-Jan-12 20:18:09

oh, sydney, jack frost looks great. i love reading about other adaptive programs. do let me know how you get on!! we've just been awarded a grant for $10k worth of sit ski equipment for our program and we are soooo excited. we had two old sit skis that were quite limited as to who could use them, but these will be all singing all dancing and we'll have junior pro ones too. grin yay!

cherry, i agree re differences and the nhs (i may be slightly biased as dd2 was my only nhs baby out of three, and the only one that got broken during delivery hmm) but anyway. we're waiting for our first neuromotor clinic appointment at the mo, and i'm a little bit excited to see what they will look at, and what they will suggest. dd2 is v able now but there are all sorts of things that they could decide to look at, so we'll see... i know a lot of kids here have had gait assessment as a matter of course, and we were told it was unlikely she would ever be assessed in the uk, but i do wonder if they will do it here...

(in the uk we were also told that dd2 wouldn't be able to cope with a manual chair as her retained reflexes meant that if she tried to self propel, her head went down and she couldn't see, but that because she could walk using a frame, she wouldn't qualify for a power chair. grin fortunately these days we cope with the odd day out in the manual, and she's independent, but i do wonder about the rationale...

outofbodyexperience Wed 11-Jan-12 20:20:12

oh, i also wanted to say - the solicitor has found the next flavour of independent expert for dd2's case (consultant neonatologist this time) so it rumbles on. next one is the midwife... fortunately no reports for me to read and comment on this time.

verycherry Wed 11-Jan-12 20:53:34

Outof - I had to chuckle at your turn of phrase, my own body managed to break my DS in utero, damned thing. I hope your case goes well, my ex-bil's dd has severe spastic quad cp as a result of medical negligence they are also going down the very long road of a court case. Is it harder putting a case forward from abroad?

The neuromotor appt sounds very interesting, I do feel that DS has been offered all he will be already, although I had talked to his physio about SDR before and she has recently told me that a child in our PCT is being funded for it - but she's very guarded about giving me an opinion on it.

outofbodyexperience Wed 11-Jan-12 21:13:39

we started it in the uk, but the whole thing was a pita. she was born in scotland (we moved to the south of england just before she was two) and so we have to have a scottish solicitor and use scottish legal aid, etc etc. we didn't know that at the time. on one spectacular occasion it took 8 weeks for us to receive a solictor's letter though. everything is done by e-mail now, so it makes it a bit easier. i have no idea whether at some point we will have to go back, it seems as though we are miles away from anyone being interested in dd herself tbh.

i do often wonder whether i should have contacted the midwife and gone for a cup of tea with her. i bet we would have had it sorted out much faster. i often wonder if she even knows the legal side is going on. do the individuals ever find out, do you know? or is it all pct driven until it's all been hashed out?

inhibernation Wed 11-Jan-12 23:18:33

Very quick one from me tonight as I MUST go to bed...........hairy, massive congrats on your amazing achievement smile PCT funding is almost a mythical phenomenon. You must be over the moon. Will ds be having SDR at Oswestry?

wentshopping Thu 12-Jan-12 00:39:46

outof you're my spooky twin in Canada, right? DD born in Scotland? OMG so was mine! (I did have a cup of tea with midwife, and she told me they had done an investigation, I wonder if they keep it on file in case I ever do anything about it)

sydney yes, I am proud of my daughter - and so must you be of yours. What a rollercoaster of emotions for you.

Hope you all get some sleep soon slowburner.

very maybe a good thing you missed the botox. We have done it once and it was not a good outcome. I had to hold dd down during the procedure.

Hoping dd nice and tired tonight as I took her for a bike ride after school.

SydneyScarborough Thu 12-Jan-12 00:49:46

Message withdrawn at poster's request.

outofbodyexperience Thu 12-Jan-12 00:53:50

went, yep, spooky twin. grin it wasn't the RAH in Paisley, was it? my midwife was truly lovely. weirdly the midwife who did all my antenatal care was on duty when i went into labour, and she volunteered to stay on after her shift as i hadn't had the baby. at the time i thought it was a brilliant and fabulous coincidence, and agreed to a student with her. <sigh>

inhibernation Thu 12-Jan-12 10:03:39

Welcome sydneyscarborough smile

surviving - it's Kristian Aquilina @ Frenchay Hospital in Bristol.

dd's walking seems to be improving daily - it's weird cos she had less physio over the xmas period. Can't quite work it out. Maybe the gap allowed her to consolidate some stuff.

Interested in the botox stuff. Considering it for dd but mainly to help protect against contractures whilst we wait to see if dd is suitable for SDR. Has anyone seen sustained improvement after botox or is it always temporary?

wentshopping Thu 12-Jan-12 14:05:27

outof no, we were in the North East. That would have been one too many coincidences, wouldn't it?

sydney - actually, my dd can't do any of those things you mention either - totally dependent on others for feeding, bathing, dressing, getting in and out of chair etc. It's only been with the latest technology - eye gaze communication device, ipod touch and ipad - that she has gained a tiny bit of independence, which is a huge thing for her. Now that she can talk to us - although in fractured sentences, often with all the vowels missing - we can finally get an idea of what she is thinking. And using the communication device as a computer mouse, operated by her eyes, means that she can now play webkinz, or message on skype, or even hijack my facebook to message her sisters in another room. I have to do another school run in a minute, but I'll find details of our chairs etc and post later.

verycherry Thu 12-Jan-12 15:34:57

Re: Botox, my physio has found it varies from child to child. It is temporary, with the average duration of effectiveness being 6 months. However, in her experience it doesn't work for some children, some children have a good effect for 3-12 months and one child she knows is still experiencing a good effect 2.5 yrs later.

DS had a fantastic result but I can see its wearing off 7 months later - although he is still loads better than before.

Hth!

outofbodyexperience Thu 12-Jan-12 15:52:43

inhibernation - development is really interesting. especially when they are young, virtually impossible to tell which gains are therapy dependent and which would have happened anyway even without intervention.

went, have you read 'out of my mind' by sharon draper? it's a kid's book really, but written from the pov of a girl with cp who gets a voice system for the first time. dd1 had it and insisted i read it. it's a bit cheesy, but i think it's great as it 'normalises' kids with disabilities for those who otherwise might not get much contact or think about what it might mean for an individual. i love it as a kid's book, even if the actual story is a bit ott.

wentshopping Thu 12-Jan-12 16:13:08

out of yes, I have read it - dd2 got it and read it last year; dd3's TA wanted to suggest it as a class reading book, but as they are only 4th grade I think it is a little above them. Also, dd3 has been with this year group since Kinder, so they all know her and her communication device, and just accept her - lots of grownups have commented to me how dd3 normalises disability/wheelchairs/devices for their kids - I found it is the adults who don't realise she participates to the extent she does. Maybe it should be required reading for adults.

sydney interesting comment about language used about disability - I wonder if it is a USA thing. I hear "handicapped" all the time, and have to correct myself if I am speaking to an American - eg they look blank if I say disabled parking space, but understand handicapped parking.
Ah handicapped parking - either we cheer on getting "the best spot in the lot" or I have to chase people and get them to move their car out of the space ("but I'm only parking there for a minute while I go inside blah blah"). A couple of weeks ago I had to ask a policeman to move his car off the marked off area so I could open the van door. But that's another thread, sorry to sidetrack...

Hi everyone, I'm just popping in to say Hello. I've not been on MN so much lately after receiving a few flamings on other parts of the board. My dd is 5, 5 at the end of March and the official diagnosis is Diplegia although it is likely to be changed to a double hemiplegia as both arms and legs are affected but her right side markedly more than her left.

She goes to mainstream school and has a great statement with 30 hours a week 1-1 so she even has support at lunch and play. She uses a mixture of independent walking, kaye walker, walking stick and wheelchair depending on the day and the distance.

She was very verbal from a young age and seems bright but she does have some fairly subtle learning difficulties which are holding her back with reading and writing. We recently had tests done for visual processing disorders which was really interesting. She is well aware of her condition and initially asked when she would get better. We've always been honest and never hidden a thing. A few weeks back she said she was worried that she couldn't ever be a mummy as she was scared that she would drop the baby sad. Pretty crap that a 5 year old is even thinking that far ahead. Anyway, we talked it all through and gave her the confidence to think she could cope and now she would like '30 babies all at once'!

DD goes to the Rainbow Centre for Conductive Education. Phenomenal place. I have read odd stories here about CE and I know the centres do vary but this one is very very good. We travel up from Bournemouth to Fareham - 1 hour each way. If you are at all within travelling distance I would recommend a visit.

Dd's biggest challenge for us is probably her continence and behaviour. She cannot seem to stay dry after a year of trying and failing and is now back in pull-ups for the time being. The stress and upset for all of us just wasn't worth it. It's confusing as we have been told that there is no physical reason why she can't stay dry and we have had all of the tests for UTIs etc. Dd is still having regular 'toddler' style tantrums and she can go on for over an hour. She doesn't sleep well and gets very scared and upset easily.

I'm currently mid-way through re-applying for DLA. Even though I should expect it by now, I was still floored by how depressed it made me feel. I have suffered from depression and GAD (generalised anxiety disorder) mainly triggered by the trauma of dd's birth. We are currently part-way into a case of medical negligence. I try not to think about it too much but it niggles away like all of the other fights we all have to go through.

This has turned into a bit of an essay, apologies blush. I am part way through this thread so will carry on reading and will hopefully learn more about all of your DCs. smile

* 6 at the end of march

inhibernation Thu 12-Jan-12 17:00:20

Hangingbelly - so sorry to hear you've been having a rough time, both MN and RL. sad @ your dd worrying she would drop a baby but it sounds like you've done a great job at reassuring her smile I think we all worry about dropping a NB so perhaps she is just a bit ahead there! Please feel free to hang around here - strictly support only, no flaming smile

very - thanks for info on botox. dd's PT did a test and said dd would benefit from it in one specific site (can't remember the name of the site) on the left side but that it is generally good for them to do it symetrically.

inhibernation Fri 13-Jan-12 13:47:26

How does referral for conductive education work? And do you have to pay? There's one in Putney as well. Neither are that near but we could probably get to Fareham within the hour.

outofbodyexperience Fri 13-Jan-12 14:37:36

belly, my two nt children were still having daytime wetting accidents at 5.5 - it was only dd2 with cp that had been reliably dry for year at that point, so i really really wouldn't write it off yet! dd1 is now dry (she finally 'got it' in the summer holidays between yr 1 and yr 2) and ds1 is only now reasonably dry in the daytime in yr 5 (with occasional accidents). that said, i think it is generally more tricky with a diplegia dx? have you got the full range of support stuff so that she feels safe using the toilet etc (and at school?)

where are you at with the case? we're into our third legal aid application for the next expert opinion...

tis pretty safe here. i think even the most hardened aibu-er wouldn't bother traipsing onto a cp thread... glad you made it x

inhibernation Fri 13-Jan-12 15:15:59

Possible stupid question...........but is there a CP friendly alternative to wellies? Only dd's usual boots are getting trashed when we go to watch ds play football.

Have a similar issue with slippers - death trap! Have resorted to using slipper socks instead!

wentshopping Fri 13-Jan-12 15:25:10

sydney looking at your blog pictures, your dd's chair is nicer than the ones I have been offered a look at - dd has a Permobil Koala (power chair - love it!) and a Quickie Zippie. This is probably an outdated model now, and we got it because it folds (for travelling), but gets wonkier with every folding/unfolding session.
www.sunrisemedical.com/products/product_detail.jsp?PRODUCT%3C%3Eprd_id=845524441787891&FOLDER%3C%3Efolder_id=1408474400872700&ASSORTMENT%3C%3East_id=1408474400872674&bmUID=1326467444430
I also have an alvema ito for travelling to the UK now - folds up like a stroller, nice supportive seat and footrest, and good chunky wheels for going dog-walking with my sister. The only disadvantage (this is going to sound mad) is that it doesn't look very wheelchair-y. So I have to draw people's attention to it at airport security and when boarding a plane so it doesn't get treated like "just another stroller". I will try and put a photo of dd on her travels in it on here.
Does anyone else have any good chair information? Ideally for dd's replacement manual chair I would like to try big wheels at the back so she can try and self-propel. However, my wheelchair rep has said that big wheels mean that you lose tilt-in-space. I want to see if I can avoid all the extra metal tubing that Sunrise Medical seem to love to bolt onto the wheelchair frame.

hello to belly

have a good weekend everyone - long weekend here as we have Monday off school smile

wentshopping Fri 13-Jan-12 15:27:46

inhibernation does dd wear orthotics? My dd lives in her trainers which fit (with a little wiggling) over her orthotics. For out of school time she has some crocs - do they make wellies? They are quite flexible and a little stretchy so I can make them cover the orthotics nicely.

outofbodyexperience Fri 13-Jan-12 15:31:06

we always tried to have two lots of oiedros on ther go at a time, the 'regular wear' ones, and the old extremely scruffy ones. tbh, mostly we just trashed every pair of piedros.

sometimes walking boots (but they don't come up very far), and recently we've been using more supportive snow boots.

the only thing dd2 wears wellies for is riding now - and even they are studier wellies with a heel on. walking in wellies for wobbly kids is a night mare. grin

really you just have to try not to think about stuff getting wet/ dirty/ trashed and pretend it doesn't matter... and try to keep your hankering for baby blue suede piedros (or pink ones) to a minimum. (been there, done that. they were gorgeous. for about twenty five seconds.)

dd2 has never owned a pair of slippers for the same reason. grin it was awful when she was about 4/5 as all she wanted was blardy slippers with dora or whatever on them. and well meaning aunts would buy her them for christmas hmm. and then we'd be trying to explain to her that she had whacked her head/ fallen down the stairs because of the damn things, and would have to lose them in the trash.

went/syd, yy, hadnicapped is def still a north american thing. it's interesting how the language used varies so much, even in english speaking countries!

inhibernation Fri 13-Jan-12 15:46:23

Thanks wentshopping and outofbody/madwoman smile
I laughed at your post madwoman grin
Yes dd wears AFOs. I haven't yet managed to find trainers that fit over them but she has some converse type boots from Next which have a side zip as well as laces. Apart from it being a bit expensive to buy more of these just to get trashed (would prefer something in a wipeable fabric), I'd also prefer something that she could tuck her trousers into - like wellies or snow boots but standard ones would be totally unsuitable.
Perhaps I should wait, as she is about to have new AFOs fitted so it looks like we need to buy some new shoes soon anyway. She's also grown out of her normal shoes (for the times when she isn't wearing her splints - though this is less and less often). I have to confess to LOVE getting her new shoes though as they look so pretty for about 2-3 days before getting trashed. I learned very quickly what type of shoe to avoid - suede, light colours, any shoe that doesn't have a bumper on the toe.

inhibernation Fri 13-Jan-12 15:48:56

dd has never worn piedros - not sure why they have not been recommended. Too heavy for a diplegic perhaps? Just a guess really.

crocs are great - we were thinking of fixing some to dd's trike so she can pedal with her splints on. Not so great for winter though.

outofbodyexperience Fri 13-Jan-12 15:56:36

if she wears afos then that's probably why - there's usually no need for both.

have you tried really cheap trainers (asda etc)? usually with afos it's all you need. i know a few people that buy and remove the insole, and wear and dump regularly. because the support comes from the afo, in theory you don't need anything too supportive (it obv has to be snug etc, but the ankle support isn't essential as long as they've got a good heel cup that holds around the afo well?

i do confess to dd2 having been free of all support and orthotics for about two years. unfortunately you can tell this from the state of her ankles/ feet, which is why we're waiting on our referral. the physio has already discussed afos with me, but neither of us are brave enough to mention them to dd2. blush

outofbodyexperience Fri 13-Jan-12 15:57:10

hark at me teaching granny to suck eggs. blush sorry!

wentshopping Fri 13-Jan-12 16:28:10

now I've been looking through the R82/snug seat catalogue... I think I need a new wheelchair rep - tilt in space and big wheels available here. Thanks for the tip sydney

Jakeandsophiesmum Fri 13-Jan-12 16:51:59

Hi all! Have now printed off all DLA for
and and have booked the health visitor in for next Friday to help me fill them in grin. I have been reading your posts about footwear and was wondering if your DD/DS have been able to wear "normal" shoes for short periods as we have some weddings coming up and wanted to put my DS in some nice Clarks shoes for just one day at a time instead of his peidros. He can't walk at the mo so it won't affect his mobility, like falling or anything. But it would be nice to have him in something else other than peidros as he as never worn anything else. Thanks

sneezecake Fri 13-Jan-12 17:14:27

We put DS in some hushpuppies when we went to my nan's funeral, I thought as he wasn't walking just be in his buggy then there was no harm.
And for your list:
Sneezecake/sneezecakesmum DS/DGS 3YO ??Spastic Quad, but more Athetoidy than spastic.

outofbodyexperience Fri 13-Jan-12 17:37:00

oo, is he 3 now, sneezecake?! i must have missed his birthday! (or forgotten... in my head he was still two!)

inhibernation Fri 13-Jan-12 17:56:07

Clearly I need to look around a bit. I'll take dd's new splint with me when we get them and try it out without dd. Less stressful!

My db got married recently and dd was a sort of flower girl(!). We put satin ballerinas on her which were supposed to be just for the ceremony but dd, being quite vain, insisted on wearing them much of the day. Managed to put her splints and boots on later on in the evening, distracting her by putting in some different hair slides grin I don't think it will do much harm just for one day. Hushpuppies are lovely shoes. dd had a white pair. They were lovely for about 2 days before the front became black. And before anyone says why on earth did I buy white.......it was all that was left and I had to find something in a hurry on the day we received her first pair of splints.

sneezecake Fri 13-Jan-12 18:18:19

nearly 3 and half <sobs> my baby all grown up!

sneezecake Fri 13-Jan-12 18:20:45

I love hushpuppies, we have a discount shopping centre with a HP shop, oh how I love to shop!

outofbodyexperience Fri 13-Jan-12 19:37:09

bless him!!!

jake, our orthotist strongly recommended spendind a little time in ordinary shoes, as long as there was not too much danger of falling - it's a fine balance between providing necessary support and letting joints work a bit harder which might help strengthen them... if he isn't mobile and won't be using a walker etc at the weddings, then there isn't really any reason he shou;dn't wear posh shoes for the occasion. grin tis a little easier for boys anyway, girls party shoes are a nightmare!! in the end we gave up and got dd2 black patent pidros and she used to wear them with party dresses and frilly socks. grin

Jakeandsophiesmum Fri 13-Jan-12 19:57:35

Brilliant, hush puppies it is for our little man! Will have to get his feet measured tho as he has never worn proper shoes. Hope his feet aren't different sizes as his calfs and thighs are!

Hi everyone - inhibernation, you don't need a referral for conductive education, you just ring up and make an appointment for an assessment. You do have to pay but they also have funding available. Dd's sessions are currently being sponsered by an unknown benefactor you wanted to sponser a rainbow centre child. Rainbow Centre

Dd has splints and I think has funny feet as well (we all have a high instep in our family) so finding shoes has always been virtually impossible. We have ended up buying in Hatchbacks from T&S orthotics. They are not cheap but they absolutely fit, you don't have to buy 3 sizes too big etc. We also have a pair of party shoes for special occasions because like other here, we figure that a few hours in shoes without support isn't gonna really change too much.

slowburner Sat 14-Jan-12 11:42:30

I received two letters today, one was From portage asking us to fill in a questionnaire on the term of support we had.

The other was the notes from the pre school liaison group. I don't know where to begin, the information that they have discussed about DD is all wrong, the names of her therapists are wrong, the level of function she has is detailed wrong, they've said that we are getting adequate support with portage, physio, OT. We have seen or heard from physio since October, portage finished before Christmas, we have only seen OT once. They say that physio is arranging a joint meeting with us and OT, but the letter I got from the OT yesterday with exercises for DD on say we won't see her again until the summer. The letter also came with a book with loads and loads of services in for pre school children, I couldn't believe it, I have been begging for support for her and for me to be told nothing.

The exercises we got from OT are just laughable, they are completely unsuited to dd's age (17mo)' I took the info into her nursery and they said a 3yo would be hard pushed to do them, let alone do them regularly as targeted therapy.

We have Brainwave in eight weeks. I hope they can help us.

inhibernation Sat 14-Jan-12 14:04:33

slowburner - that is terrible shock Are you going to complain? If so, I'd advise you complain to the directorate or PALS rather than leaving it at a local level. That said, I still haven't got around to complaining about the way in which we were fobbed off for months, despite being concerned about dd's motor development. I will do it - have just had other battles.

sneezecake Sat 14-Jan-12 17:41:58

Slowburner that is really shocking and inadequet therapy, they bangon about early intervention then with hold it, definatly make a complaint.
At a minimum both OT and Physio should be visiting once a month portage weekly unless she has started nursery.

DS loves brainwave (due for reasessment in march) they set a short programme about 20-30 minutes a day which is really managable, even if you do 3 blocks of 10 IYSWIM we have seen great progress in DS core strength (lost of sitting on balls lol) I hope it works out well for you and youe DD

slowburner Sat 14-Jan-12 18:56:45

Thanks for your responses. When we saw the paed back in November he was very cross about the lack of physio involvement, he was also clearly unimpressed at the physio labelling hemi CP (she was intending to discharge DD over the phone, only saw us due to paed asking) he feels it is just too soon to dx, that's not to say it won't be cp and DD does has significant shoulder stiffness but he thought the physio had stepped over the line.

Doesn't get her any closer to therapy. We see him again end of february and I hope this time he can ask for different physio. One thing that they did say in this letter was that DD's nursery can apply for up to 5 hours funding a week, I am going to look into this and perhaps we can ask for that to be used to do her Brainwave programme the days she is at nursery?

Hope everyone's DC's are well smile

thereonthestair Mon 16-Jan-12 09:24:21

Slowburner my ds has 10 hours funded a week in his nursery through the early years foundation stage funding. We applied when he was 7 months old corrected (before the diagnosis of CP but as a result of some general delays due to him being prem and ongoing reflux issues) We weren't sure at the time whether we'd get it but it was a doddle. (much easier than DLA)

The form is short, but you need the nursery and the area senco to support it. In our case they thought it was a no brainer as it just meant they could get extra staff and what they do is put the temporary staff with the other childen and then DS keyworker gets training etc from DS physio and then does his exercises etc. If we did brainwave the nursery would happily do those exercises, but at the moment we don't as we are very happy with the NHS service we get.

In theory up to 20 hours is available for each additional needs child in our area, we only get 10 as DS does quite well and we want him to be normal too.

inhibernation Mon 16-Jan-12 20:49:35

I think each EA differs. In my LEA children with SN are eligible for 10 hours funded setting care from the age of 2. slowburner - you may need to escalate matters to ensure you get the right advice. Might be an idea to put your request for info in writing - amazing how a letter can get things moving!

dd gets very little nhs therapy. Much less than monthly. We pay for fortnightly physio and I think the nhs are using that as a reason to see her as little as they do. Tbh, when they do see her they don't do much anyway. Just interrogate me about what I'm doing with her. OT have seen her twice. They envisage their role being more about setting support as they don't have concerns about her fine motor skills. They did say that they can step up contact if her fm development starts to become a problem.

We're on a waiting list to see someone at the Evelina. The waiting list is approx 4 months.

survivingwinter Tue 17-Jan-12 11:43:39

inhibernation - do you think the private physio helps a lot? We only get nhs physio every 2 months and like you, I don't know how much it is helping any more. We are absolutely skint but I'm getting to the point where I can't see DD making much real progress and I'm scared that she's coming up to 5 and I want to do everything possible to improve the neural pathways while her brain is still 'plastic' sad

We've just been re-referred for OT but they weren't much use when we saw them last tbh.

thereonthestair Tue 17-Jan-12 15:03:50

I know you didn't ask me about the private physio, but we have one as well as the NHS one. I would be tempted to ask how well you get on with the NHS physio as although I know mine is excellent (for which I am forever grateful) she will also tell me when she is recommending physio but has no money for it, and what she would do if money was no object. Sometimes that's weekly sometimes its not.

Overall we tend to do 6 weeks on 6 weeks off with the NHS and put the private physio in in the "off" weeks and I think it makes a difference, but I am not sure whetehr that's just a pyschologial for me.

inhibernation Tue 17-Jan-12 17:33:00

Quick one from me as I'm going out soon.
Surviving - yes I do think it helps. But then, the private PT is more proative than the NHS one.
Thereitis - liked the last nhs one. Not so keen on the current one. As far as performance is concerned I'd say they are on a par.

isw Tue 17-Jan-12 19:05:42

Hi

Hope I can join in have been lurking/meaning to post. I have DD nearly 4 originally diagnosed as spastic quad but now diplegia. She is a chatty little thing who bunny hops around and would love to be able to run and or climb more things.
Have been reading through everyone's posts its fab to have so many different experiences. DD is in a mainstream pre school attached to a primary school she gets 1-2-1 support for the 12.5 hrs she is there. We also do a periodic placement at a Conductive Education place. She is there now with her dad. She goes for a 4 day placement 4 times a year and Saturdays every 6 weeks. While she there she has physio/ independence skills stuff in the mornings and hydro in the afternoons. I can not recommend this enough especially for kids in mainstream as she gets to hang out with other kids like her for 4 days. I am hoping this will be a nice little peer support network for her as she grows up. The physios from there also visit her in pre school and support her 1 - 2- 1.

We also do a program with Brainwave and have NHS physio once a fortnight. We have just applied for direct payments and will hopefully use that money to employ a physio or sports science student to do her program a couple of times with her to take the pressure off me a bit.
Ermmm what else? We have had Botox, the current round as made a huge difference, I am already dreading it wearing off. She wears AFOs when she is on her feet doing walking stuff and bare feet when crawling etc. She actually has hush puppies which she wears over her splints (they also fit just without them) Some of her specialists say AFOs etc should be worth 12hrs a day others, which I agree more with say to also do bare feet work to help with balance feedback etc

PHEW.. hello!!

ISW nearly 4 DD spastic diplegia

badkitty Tue 17-Jan-12 19:43:32

Hi, not been mumsnetting much recently as too busy but thought I should add me/ DS1 to the roll call! He was 3 in December, has quad CP (atypical apparently so neither athetoid nor spastic diagnosis confused). Just started at a SN nursery, we also have private SALT as v little MHS provision, and he does SN swimming lessons which he loves and making real progress with, and is about to start music therapy! Hence me being too busy to post really!

ISW I'm really interested in the conductive ed you are doing - where is that it sounds really good?

Badkitty, DS1, age 3, quad CP

survivingwinter Tue 17-Jan-12 19:57:11

Hi isw and badkitty!

thereonthestair and inhibernation - thank you for sharing your experiences. I do get on well with dd's current physio - she's lovely and always positive about dd. I think it is more the slow progress that is getting to me - I just want a miracle to happen (have been spending too much time with NT children recently I think!!)...

isw Tue 17-Jan-12 20:26:38

Hello again badkitty. We go to the Craighalbert center they are fab

http://www.craighalbert.co.uk/

It is one of their Inreach programs

http://www.craighalbert.co.uk/dir_upload/PDF%202%20Inreach%20content%20parents.pdf

inhibernation Wed 18-Jan-12 00:11:17

surviving - we use all of dd's dla to fund private physio. If you can't afford to use that pot of cash maybe you could think about direct payments so that you have extra provision. 2 monthly physio is a poor offering but I don't think I'd want dd to see her nhs one more often. She's the one who said that dd would never be able to walk to the shop - without even knowing where our local shop is!

sneezecake Wed 18-Jan-12 20:49:04

whats direct payments? I've never heard of them, and how do you apply?

SydneyScarborough Wed 18-Jan-12 22:28:49

Message withdrawn at poster's request.

inhibernation Wed 18-Jan-12 23:06:03

sneezecake - it's social services based provision whereby you make an application (probably via a healthcare worker). It could be for therapy or respite or anything in between. Your application is then assessed and a budget set. Usually you would need to make a contribution but I think this is means tested.

sneezecake Thu 19-Jan-12 21:11:27

cheers inhibernation, we probably wouldn't be ab;e to get it if it's means tested.
It's really crap we are not high earners, but just above the thresh hold so we get nothing, except DLA!

inhibernation Thu 19-Jan-12 21:50:34

I know exactly what you mean. In a similar situation but I think it's still worth looking into. Nothing ventured nothing gained.

isw Thu 19-Jan-12 21:58:15

Evening all,

Brainwave: We went to the one nr Bristol. The first time you go its a 2 day assessment with your child and usually 2 or even 3 physios and? or OT depending on the needs of your child. Day 1 is the assessment and day 2 they show you the program in the morning, while making a DVD then you do the program in the afternoon. Each program should take a max of 1hr a day you aim to do it 4-5 times a week. Its basically physio exercises, you have the DVD to look at and instruction sheets in case you forgot what to do. After that you get assessed every 4-6 months. Its just a one day assessment from them on, any progress gets charted and the program get adapted. I find it really useful - no need for private physio, travelling to appointments etc. Just 30 mins in the morning and 30 mins in the pm most days. Personally I get on with Conductive education and brainwave better than bobath.
direct payments : you need to ask your disability social worker to do a section 23. Sounds scarey but it just looks at how much therapy you do with your child, how much time you have, how much stress the family is under etc. We are just finishing the process and looks like we will be awarded 4 hours a week smile They could take your child out, watch them while you do housework or play with a sibling. Help you take them swimming whatever you choose, you write the job advert etc yourself. There are other options but its easier if you talk to a specialist. It is not means tested as far as I know.

Another essay from me then ...

SydneyScarborough Thu 19-Jan-12 23:33:43

Message withdrawn at poster's request.

outofbodyexperience Thu 19-Jan-12 23:56:52

so the paed did the neuromotor clinic referral for dd2, but i've just had an e-mail from the physio telling me all the info they need to accompany it. it will take forever:
'
* Specifically identified problem or issue

* Correct demographics

* Birth records

* Proof that a discussion about the diagnosis of CP or CP-like condition has occurred with family

* Results of any developmental screens

* Results of any allied health profession team members (SLP, PT, OT, Psych, Social Work, dietician)reports or assessments

* Results of any diagnostic imaging or other related tests

* Surgical history

* History of botox injections

* Medications

* Language spoken at home, including whether parents are English-speaking

* Any current or past equipment, splints or bracing

* Health care coverage.'

the child is 8yo and has been having all sorts of therapy, interventions, and equipment her whole life. and two mris!!!! crappety crap. as if i haven't got enough to do, i've got to regurgitate her entire file. ffs. do you think an abridged version would do? <sigh>

xtwinmummyx Fri 20-Jan-12 00:46:34

Found this thread, which is fab as i am looking for support from other Mummies in similar situations...it is very easy to think that you are alone in raising a child with cerebral palsy, which is exactly my thoughts at this moment in time!
My daughter, who is an identical twin (her twin hasnt any disabilities) has Spastic Diplegia Cerebral Palsy and although this is very mild and luckily only affects her legs (I know it could be so much more worse, so i do count my lucky stars), i still cant help but think why?! why her? what went wrong? what caused it? She was diagnosed at 15 months and before this her lack of gross motor skills was put down to 'developmental delay', as she and her twin were born prematurley at 32 weeks. . .her twin however was very advanced for a premature baby and although we shouldnt compare them, i always had a feeling early on that something wasnt quite right.
My daughter and her twin have just turned 2 and at 2 she is still unable to walk, however does now cruise around the furniture and will walk holding hands (although on tiptoes). . .she is the happiest little girl and so determined to do everything her twin is doing, which is why i think she has developed so fast with the help of physiothereapy. . .so for her its great having a twin. . .for me on the other hand, I find it hard looking at her twin and seeing what she would be like if she wasnt affected by CP (am i wrong in thinking like this?) Is there anyone out there in a similar situation? Having multiples, where only one is affected by a disability? Would love to hear from you. . .

BounceChildrensTherapy Fri 20-Jan-12 13:16:02

Message deleted by Mumsnet.

BounceChildrensTherapy Fri 20-Jan-12 15:08:36

Apologies for posting in the wrong area. Wishing you all the best smile

survivingwinter Fri 20-Jan-12 16:03:02

Hi xtwinmummyx - glad you found us! Sounds like your DT is doing very well and will hopefully be walking before too long. The walking holding hands bit seemed to go on forever with my DD but must be so helpful for your little girl to have her twin to copy and spur her on.
I know what you mean about thinking 'what if'. I used to have a picture in my head of my DD without any difficulties and feel really down sad but that picture is slowly fading away as she gets older and she just is the way she is these days!

inhibernation - thanks for the info on direct payments - interesting I didn't know about that. I am expecting we could lose our DLA soon which will be a dire blow for us so we are saving it up madly to live on if worst comes to the worst...

xtwinmummyx Sat 21-Jan-12 00:51:45

Hi survivingwinter nice to hear from you smile How olds your DD? Is she now walking independently then and how old was she when she was? What form of CP does she have? Sorry for all the questions, I know all children are different, but its nice to hear other peoples stories smile
I really do hope this feeling fades soon, i feel awful having these thoughts as I do feel totally blessed to have twins and my little girl is amazing...in a sense, it makes the little things she does on a day to day basis that little bit more special and makes Mummy that little bit more proud!, so for that reason i wouldnt change a thing and certainly wouldnt change her for the world!...I just worry about what the future holds for her and how being an identical twin will affect her... At the moment its a definate plus being a twin and has helped so much with her determination and confindence to try new things and move forward with her physical development, but i am afraid as she gets older she will start to think 'why me?' Its just horrid the not knowing!...not knowing what the future holds. hmm

survivingwinter Sat 21-Jan-12 19:59:58

xtwinmummyx - DD is 4.5 yrs now and doing well given her brain injury and very rough start to life. She walked at 20 months and these days has difficulty with balance and fine motor coordination. We escaped official CP dx at 2 yrs as it was still a 'wait and see' but DD is probably mild athetoid CP as she has some fluctuating muscle tone and a weak trunk which is quite characteristic.

We have some friends with twins (non identical) and one has CP. I know it has been difficult but they are so close and really help each other. There are quite a few parents with twins in a similar situation on the FB group I belong to - Hope for HIE. Might be worth a look!

inhibernation Sat 21-Jan-12 22:25:29

xt - welcome smile. My dd sounds very similar to your dd. Also 2, with diplegia. Has started to take independent steps recently. Developmentally, she sounds similar to your dd. It must be very difficult for you at times because of your twin dc who is unaffected but I'm sure you are right that this is a positive influence on your dd and helps spur her on. Where in the UK are you based?

thereonthestair Sun 22-Jan-12 08:57:35

Hello everyone. I just wanted to pass on a comment I just had from one of Ds's physios who was of the view that while walking independently is the goal, that sometimes it is better for that to be a bit more delayed in the long term, s if for example our children spend a lot of time cruising and going sidewides they are strengthening the muscles tone on the outside of their legs which will compensate for the tightness on the inside (that's my DS pattern which I understand is quite normal for a prem) so that in the longer temr the gait will be better.

Can I just ask has anyone also got a child who has both CP and hypermobility? I am told this may be a good thing for ds but am not sure as the hypermobility is more of a balance issue than the cp i think, but it also means he doesn't toe walk

survivingwinter Sun 22-Jan-12 13:09:51

thereonthestair - yes DD has both and we were told in the early stages of her walking that the hypermobility was 'helping' as she doesn't toe walk due to the lax joints. As you say though, it affects balance which as DD has it in her hips, knees etc means it is an issue. Now DD is older, we are working on the hypermobility more and it is still hard to tell how much the CP is affected by the hypermobility and vice versa confused

That is a very interesting comment from the physio about the delay in walking potentially being a good thing!

slowburner Sun 22-Jan-12 17:14:00

Re the delay in walking we have been told to get DD crawling again as once she started walking the stiffness in her shoulders massively increased again. So in our case I agree with your physio thereonthestair it would have been much better for DD had she walked later.

inhibernation Sun 22-Jan-12 20:57:17

I imagine the advice will differ depending on what type of CP and how severe the involvement is. As the child starts to walk, the physio should simultaneously be focusing on gait as well as function. dd's walking has improved at the same time as her balance - fortunately! Though she does have some tightness in her shoulders. PT thinks this will improve as her core strength improves (which it continues to do).

xtwinmummyx Mon 23-Jan-12 14:44:21

survivingwinter thanx for the reply, sounds like your little ones doing brill smile Does she attend a pre-school or school?...and if so, how does she get on? My little girl goes to nursery one day a week and has just moved up to the next age range room where shes the only crawler...although she enjoys it lots and as far as im aware mixes well with the other children, i do worry as she is the only one crawling how the other children will look at her.
Thankyou for the facebook page suggestion, will take a look smile

inhibernation yes i agree our little ones sound very similar in their development, ive seen a few of your older posts and thought the same smile Hows your little girl getting on with taking her first independent steps?...i bet its very strange for the both of you? Does she use a walker?...my little girl is due to get a walker soon, so hopefully that will help get her more sturdy on her feet and give her that little bit more confidence.
We are based in Devon smile

thereonthestair thankyou for passing on the comments from your little ones physio, it makes me a little more reasured that my girls physio is on the right tracks also... The physiotherapist my little girl has is brill and has always said that it was better to get her crawling the best way she can before getting her up on her feet... From only being able to commando crawl at 11 months old, she then learnt to get up on her hands and knees but would only rock forwards and back (but atleast she was up on her hands and knees!), then would crawl but shuffle both knees forward together, and now she crawls on her hands and knees really well alternating both hands and knees...all due to her physio giving us the same advise! Her physio also suggested early on to get her pulling herself upto kneeling against things so she was strengthening her upper body and back, which she learnt to do at 15 months... She was also very reluctant to have her on her feet too soon...although she was doing this within a month of learning to kneel (but i think this was down to having a twin who was up and about walking at 15 months!) As we couldnt stop her from pulling herself up onto her feet, once she knew she could...her physios emphasis then was to get her standing in the correct manner (for example with her legs apart and feet flat) and for us to help install these correct messages in her brain.
inhibernation i again agree that our children are very similar in the way their development is going and also the way in which their physios work with them...my little girls physio always focuses simultaneously on gait and the way she stands correctly, as well as function and getting her to walk smile

thereonthestair Mon 23-Jan-12 16:29:07

once again i typed a reply but the computer lost it. damn

Xtwin my DS goes to nursery and both the nursery who I rate very highly, but also the physio want him to stay in the group with his peers even though he is the only non-walker amongst them. it was more of an issue a few months ago to be honest. Now I am sure its the right thing to do. the other children all seem to get that DS is a bit different but its not a problem at all, and in fact the children are super inclusive and will always come up to DS and say "share" and also join where he is playing. They just accept him for what he is and given I expect him to stay with this age group as he goes through to school that works for me. I also have some friends with triplets one of whom has CP, one has other issues, and one is completely NT, I know their mum very well and she says that the fact they are triplets with different issues is a definite plus. The triplets are quite abit older now and to date there is no sense of why me.

surviving great to hear that about your dd's physio agrees re the hypermobility. I think it probably is also a plus, but it seems so weird. Mind you DH is apparently extremely hypermobile and although my mum says he's clumsy I never knew until DS consutlant said he was far to bendy. DH has some great party tricks!

xtwinmummyx Mon 23-Jan-12 18:35:34

thereonthestair ive done that twice now...it gets you to sign back in and then your message has gone, so i learnt after my 3rd attempt and copied it before i sent it!
Its great that your little one is doing so great in nursery...my little girl has been attending nursery since i went back to work part time when the twins were 10 months old, so before she was diagnosed with CP...she absolutely loves it and as i work at the nursery of course i would rate it very high and its nice its my friends who look after her. I guess its just a 'mummy' thing to worry anyway, but i do seem to worry more over the twin with CP than the one who isnt affected...even though she oozes confidence herself and certainly doesnt let anything get in her way!... I wouldnt want to hold her back from her peers either, as cognitively shes at the same rate as them and it is just her physical development that sets her aside from them and im sure it wont and doesnt phase her...its us mummys that worry too much about things isnt it!
Thankyou for the info about her friends with triplets, its nice to know there are other people in similar situations...and very nice to know neither of them have the sense of 'why me', as thats one thing i do worry about as she gets older and starts realising shes 'different' in some ways smile

inhibernation Tue 24-Jan-12 22:18:16

I am seriously thinking of changing dd's NHS PT. I don't want dd to start to get negative vibes - especially when she seems to be making such good progress. I just don't get why comes across as so negative when everyone else is so positive.

inhibernation Tue 24-Jan-12 22:19:02

xt - it's great that your dd is so bubbly and positive. That will stand her in such good stead smile

slowburner Tue 24-Jan-12 22:30:33

I will be requesting a different physio when I see paed in Feb, I don't get why DD isn't being given adequate support to maximise her potential for 'typical' movement. I'm in a ranty mood about the reason we ended up in this situation and the true impacts of the NHS cuts......

inhibernation Tue 24-Jan-12 23:08:10

Well I'm not alone in wanting a rant.....that's good grin

Grrrrrr............why do the job if you aren't prepared to work in a positive, constructive way with the family. It's not as if we're that difficult. Yes, I can be assertive.......but frankly I think some parents may have lamped her by now.

outofbodyexperience Tue 24-Jan-12 23:18:59

dd2 is hypermobile as well... but she has some residual stiffness in her ankles. she's a real mixed bag. grin

thereonthestair Wed 25-Jan-12 09:11:07

Although I love Ds physio there is a physio I come accross in a neonatal clinic who is like that. I have made it very clear that I will not see her, do not listen to her, and do not respect her. She never listened to what i had to say, was dismissive and rude. I found out later that I was not alone in this view. So go for it and ask for a different one

survivingwinter Wed 25-Jan-12 13:40:30

DD had a very negative physio for a few years - I used to physically shake with dread from the moment I woke up to our appointment time that day! She was quite wrong in her prognosis of dd as well so I went through all that for nothing really sad

xtwinmummyx - it is great your dd is so positive and confident! DD is just the same and it really helps. There is nothing of the 'victim' about her so I don't think bullying has been an issue at school (and keeping fingers crossed it never is). Ironically, PE is her favourite lesson smile

inhibernation Thu 26-Jan-12 16:15:06

thereonastair - this one talks over me, not only when I've initiated conversation but also when I'm responding to a question she's asked me. So rude and irritating. If it were the only physio dd sees I'd definately have changed by now. Am so grateful dd has another PT (the private one)- though a shame that we have to spend all of the DLA on PT and there's nothing left for equipment etc (which is why we haven't bought any). I'd like to be able to respect her as I'm told she is very knowledgeable but her interpersonal skills are so awful, I find it really hard to get past this.

Not sure if I said this already but dd walked 30ft in one go latter part of last week. Mentioned it to the PT and she didn't even acknowledge it - but her parting comment to me was "well of course there's no denying that she has weak trunk tone" <sigh>

survivingwinter Thu 26-Jan-12 20:06:29

That is brilliant walking inhibernation's dd grin - not so good about the physio's reaction. I cannot understand how someone with crap interpersonal skills could become a physio - from what I understand there is so much competition for jobs they can surely cherry pick the best confused

SydneyScarborough Thu 26-Jan-12 20:13:41

Message withdrawn at poster's request.

inhibernation Fri 27-Jan-12 09:59:42

Thanks surviving and sydney - we are still in the process of drafting a letter of complaint about the manner in which dd's dx was missed for so long followed by crap service (initially - til I made a fuss) once we were reliably informed it was looking like CP. As you all know, it is full on enough trying to fit in appts, physio, caring for other kids, household stuff and work that we are waiting for a bit of a lull (hmm) before we submit the complaint. Plus we had to write a lot of letters re SDR assessment. Still no update there. I don't think we'll bother making an official complaint about dd's PT but we'll ask for another and I'll tell her why we're sacking her! I feel a bit ranty at the moment which I wish I could snap out of............don't want it to undermine the huge pride and joy we feel about dd's progress. I guess that confirms that we need to change sooner rather than later.

Anyway, it's a lovely sunny day here and we're off to Rhyme Time at the library. Hope you all have a lovely weekend smile

xtwinmummyx Sat 28-Jan-12 00:36:53

Hi all, sorry havent been on in a couple days so have just caught up with all of your recent posts now...
My daughter sounds very lucky to have such a brill physio on the NHS, as it sounds like some of you have had a tough time with unpositive and unsupportive physios and it must be very hard! Ours is just fantastic and from day one has always worked with us to see where our little one is at with her development and what would be the next step for her...Her physio has always treated it as a 'playtime' for my little one, which makes her enjoy going and to me is another sign that i know shes good at her job!
I totally agree with what is being said and if anyone is unhappy with the care their child is getting, you are only in your right to want things to change and to go forward and do all you can do get your child the care they deserve!...as they say 'behaviour breeds behaviour' and ive always been a strong believer in that, our children need to be around positive people and people who believe they can develop in order to develop! I really do wish you all the best of luck in getting your children the care they deserve...

On a positive note...survivingwinter thats brill that bullying has never been an issue with your little one, that is something us Mummies worry about i guess...and its just fantastic that her fav lesson is P.E! I am looking at starting my twins at some sort of a gym club soon...1, because my twin who isnt afftected is just full of beans and always on the go and it would give her chance to let off some steam and 2, for my little one with cp it would be a chance to do more physio as such and excersises which will help with her gross motor skills, but in a fun way! Has anyone done anything like this with their little ones? I know she'll obviously need more support than that of her peers, but itll be fun for her never the less.
inhibernation I hope you had a lovely time at Rhyme Time smile

Just an update on my little one also... She has just this week recieved a kaye walker and just loves it! It is so amazing seeing her up and about, walking around with her twin grin She has also been given a spinal wrap to wear for support when walking, as her trunk tends to go a little floppy when taking steps. It has been a very positive week for us this end, with a very reassuring consultant appointment and a physio session who are all pleased with how she is developing and see a bright future ahead for her!...One very happy Mummy indeed smile

inhibernation Sat 28-Jan-12 15:06:09

xt - that is great news smile I remember when dd first got her kaye walker. So lovely to see them upright isn't it. You must be delighted with that feedback too smile

gym club is a good idea. dd does leaps & bounds - same company as tumble tots. They adapt it to meet her needs. She loves it! dd also has swimming lessons. It's good exercise and good for them to do the sports that their siblings do, where possible.

xtwinmummyx Sat 28-Jan-12 23:09:00

inhibernation it is amazing to see her upright!...had a trip to the park today and had a very proud moment of her walking around the park in her frame and her twin holding her hand helping her, was so very special! grin...they both loved walking together, such a simple thing to many!
Thats great that your little one does gym...i am defo going to look into it, as like you say its good excercise and great for them to do the same sports as their siblings!... and we also do swimming once a week which we all enjoy, funnily enough my little one with cp is actually a better swimmer than her twin and moves her legs alot better in the water and gets to where she wants to go when swimming, so amazing to see! smile

inhibernation Mon 30-Jan-12 00:11:14

That's a really sweet image xt smile Your dd sounds fab at swimming already. She'll be surfing soon at this rate grin

Just realised that I didn't answer your earlier post. Sorry blush Need to look at it again then will pop back!

inhibernation Mon 30-Jan-12 00:19:35

xt - dd started using a walker just a few months before she was 2. She started taking independent steps quite recently - past few months. Over xmas there was a massive developmental spurt and she started to walk in a more balanced way (less toeing in) and at a slower pace. Then last weekend she managed to keep going for 30ft smile But she had a cold this weekend and we noticed that she was less able (same goes for the rest of us I suppose!). dd doesn't use the kaye walker much at home now, but takes it to nursery or if we are going to the park etc.

researchgirl Mon 30-Jan-12 22:54:20

Hello!

My name is India, I am a third year student at Kingston University, London. I am researching for a project on Special Needs children, I have some experience caring for SN young people but only for short periods of time and they have mainly been Downs or Non Verbal Autistic. However my interest lies mainly in young people with cerebral palsy.

My research is specifically on interaction and play in the home environment. I will be designing fabric toys for use in sensory play, and need some advice and help from parents and carers. I'm sorry to interrupt this thread, but am looking for help! If anyone is interested in answering some questions and being part of the research it would be greatly appreciated, just message me and I will get right back to you.

Many thanks,
India

inhibernation Mon 30-Jan-12 23:39:27

India - good luck with your research. If your interest, if not experience, is in working with children with CP I'm sure you are aware that the presentation varies considerably from one child to another. Are you focusing on a particular presentation? And is it your aim that these toys are available on the NHS - since ime for CP, precious little is.

researchgirl Tue 31-Jan-12 00:09:41

Hi inhibernation, thanks for replying, I am particularly interested in Ataxic Cerebral Palsy, although the toys/tools will not be specific to to one presentation, as they could be used by other SN children.
My intention is to make floor-based toys that can be manipulated for use by an individual or as a communal play tool. So far i have not looked into the NHS supplying them though this would definately be something to work towards, I do not have any funding as of yet! I am keen to make the object as 'home friendly' as possible-the toys will be functional but also lovely looking objects to have at home-this is why i'm so keen to talk to parents!
Im interested in where, when and how sensory play happens in the home- what are particular favorites? what works and what doesn't? what are the current shortcomings in the toys and tools currently available?

xtwinmummyx Tue 31-Jan-12 16:55:21

inhibernation sounds like your little one is doing fantastic and has come on so much since she recieved her kaye walker...i hope my little girl has the same strength and determination as your little one and is soon taking her first independent steps! grin She has certainly loved using her walker over the last week and although cant quite steer it yet, she walks very well in it! Ive certainly noticed a difference in the way she takes longer steps and her legs arnt so tight together...she is still walking faster than the walker can take her, but i guess as she gets used to it she will start walking in a slower pace, as with your little one.
I hope your little girl starts to feel better and is soon up and about again once she gets rid of her horrid cold! Lots of love to her! smile
My little one took her walker to nursery for the first time today...off to pick her and her twin up now and cant wait to hear how she got on with it and how she found being up and about with her friends! grin grin grin

slowburner Tue 31-Jan-12 19:55:31

Researchgirl pm me and I can discuss at length! Our DD has a working dx of mild hemi CP although I have not told family etc as I prefer to keep it to ourselves for now. A family friend trained as a paed OT/physio several decades ago and we have some unusual if effective toys!

survivingwinter Tue 31-Jan-12 21:23:50

Researchgirl - your project sounds very interesting! When dd was a baby I rigged up all sorts of weird and wonderful things to get her reaching out and grasping for objects. We also needed something where she could sit supported but have to reach for toys above her head to improve her range of movement and nothing seemed to exist! Agree with inhibernation that there does not seem to be a great range of SN toys available through NHS - my dd hated loud noises so the noisy/flashy electronic baby toys were no good for her.

xtwinmummyx - so exciting about your dd on the move with her walker and hope she did well with it at nursery.

inhibernation Tue 31-Jan-12 22:49:28

xt - hope dd had a fab day at nursery with her new kaye walker. Bet her friends were trying to have a go smile It was quite a while before dd knew what to do with her walker - other than go forward! And we went through a worrying phase where she thought it was fun to tip it backward, resulting in some scary falls. Thankfully her safety awareness has improved a lot, as has her balance but I must warn you that she does run with the walker shock We have to keep telling her to not to - much to her disgust! So her gait with the walker is completely different to how she walks without. It's quite interesting really.

Hi. I have just discovered this thread. My son is 13 and has left sided hemiplegia (and lots of extras). I have lurked about special needs for a long time but not had the courage to post but you all look very friendly so decided to bite the bullet and say hello.

survivingwinter Wed 01-Feb-12 13:59:37

Hi and welcome whydoesitalwayshappentome smile Love the username - I am often wondering exactly that!! Hope your ds is doing well - is he at ms school?

We had OT assessment today and I was told officially that dd will more than likely be a laptop user in school as her fingers/hands are low tone and her odd pen grip is likely to hinder her writing and cause her pain sad So we have to start with the typing practice - can anyone recommend a good programme to get her started?

researchgirl Wed 01-Feb-12 14:06:01

thanks so much for the response on this thread so far, I hope your all keeping warm!

surviving winter My ds has just transferred to special school from mainstream as he had a 2nd breakdown (had one when he was 9 as well) and could not manage. I had him at home from beginning of October till 2.5 weeks ago. He seems to be loving his new school though.

I'm afraid I can't help with computer programmes as Christopher couldn't get on with typing so has to struggle on with his poor handwriting.

xtwinmummyx Thu 02-Feb-12 00:40:34

survivi