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

[inhibernation]

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

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

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. 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.

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

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

what is constraint therapy.?

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

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

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.... 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.

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

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?

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

hello! i do try and keep an eye out for the cp posts but they are sometimes few and far between 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 ) but not sure about slowburner

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. effort over ability ), skis, skateboards (ok, we adapted it with a handle ) 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 ) goes to brownies, swimming lessons, and this summer went white water rafting. next year she wants to try rock climbing.

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 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. 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.

we used to use 'gloop' with dd2's standing frame 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! 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.

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.

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.

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. 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 sorry! might be helpful pondering for anyone new to the dx though.

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

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

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.

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.

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.

hilda, dd2's speech was very delayed (and unexpected, given that we were told she wouldn't be verbal ) 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'.

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. 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 ) 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.

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.

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 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

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

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.

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.

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.