Here some suggested organisations that offer expert advice on SN.

Support/information sharing thread for parents of children with Cerebral Palsy - Part 2

(950 Posts)
Galena Tue 29-Jan-13 08:58:56

Can I start the new thread by saying, welcome to any parents of children with CP - any age, type, etc.

Looking back at the last thread, we have discussed treatment options, chatted about other peoples' perceptions, celebrated milestones, given support, and generally been lovely!

Come along in!

DD is 3.9 with Spastic Diplegia. Independent walker and attitude the size of a planet! We are considering SDR for her in the next year.

thereonthestair Tue 29-Jan-13 09:26:22

Glad you started a new thread. I meant to last night but by DH came home!

DS is 2.10 (actual age- like many of us he was a prem) spastic diplegia uses a kaye walker proficiently and taken 2 steps independently ever many months ago. We are battling the NHS about rubbish physio, and paying for private. Beginning to think about SDR and great fans of botox. However he is bright, a complete flirt and I am told is manipulative and wilful even for a 2 year old.

amymouse Tue 29-Jan-13 13:32:16

Brilliant, I just joined and then it ran out! Galena, I remember some of your posts from the Bliss boards, when I was searching for information around diagnosis time some of the past threads popped up. And hello, thereonthestair. Can I be nosey and ask why conductive education didn't suit you-it's sometimes we are considering but I'm rather on the fence about how it will help us?
DD is 2.5, also a prem and can cruise holding hands and create exorbitant amounts of mess and giggles! We are having physio, hydrotherapy and awaiting SALT as she also has delayed language (though signs, thank you Mr Tumble). We were just told this morning by Early Years in our area she is as bright as button and they have no concerns about mainstream pre-school/school when they come up next year and will just coordinate to ensure her physical needs are met. Yippeee!

thereonthestair Tue 29-Jan-13 13:49:53

We didn't think conducive education was for us because (and in no particualr order). Ds does not seem to have any additional learning needs, his nursery are fantastic and incorporate what DS needs into what they do anyway, we did not want to let DS be too "different" just because he cannot walk, I am particularly antisocial and don't generally value the benefit of groups and group settings over the individual and I think even if there is a group setting the sooner DS can manage in ordinary society the better, the academic studies don't indicate that it improves outcomes - and logically I can see no reason why it would, at the moment I am hoping DS is not bad enough to need anything else, and even if he is he is still little. I didn't see how it would help but did see that it would take time I don't have (I work basically full time although technically 4 days per week, ditto DH works full time) and there are only so many things I can think about. Because I work so much I have a habit of trying to outsource what I can to other professionals and stay as DS mother and conducive education wasn't available where I live.

Personally I am always looking for the evidence not the anecdotes. (It's my training I'm a lawyer) and I didn't think it was there. I am hoping that I don't conclude the same about SDR because I am still looking for the magic wand (and failing that a reliable way of improving an outcome for an emotional and risk I am willing to take)

Verybusymummyof2 Tue 29-Jan-13 19:56:37

Hello everyone, I joined towards the end of the last thread and found everyone so so helpful and supportive at thisreally difficult time. thank you!!!
Your little ones all sound fantastic!!

I am just starting out on this road, My little girl has just turned 1. She is 9 months actual, born 3 months early. She has no diagnosis yet - but I most definitely suspect CP. she is not rolling, or sitting and has high to normal tone in all 4 limbs. But She is getting stronger and can now grab and suck her feet!!
We are strongly considering Anat Baniel especially as we have a therapist just 20 mins away. Has anyone any experience of this??

chatee Wed 06-Feb-13 11:52:59

Hi ALL,( sorry the links are for UK info - but might help you to find more local info)

Just want to raise awareness of the following groups who can help children with cerebral palsy to participate in sport. Please feel free to add organisations that you know about, generally most offer opportunities to children 6 years and over but get in touch for more up to date information.

www.cpsport.org/

www.efds.co.uk/

www.efds.co.uk/news/405_boccia_champions_compete_in_sheffield

www.wheelpower.org.uk/WPower/

www.swimming.org/britishswimming/disability-swimming/contact-disability-swimming/

Try to make contact with them as they will help you to find out what is available locally to you (or if there isn't will help direct you to how a sports club can become inclusive and accessiblewww.efds.co.uk/news/1181_new_sports_club_online_toolkit_will_benefit_many_more_disabled_people

HairyMaclary Wed 06-Feb-13 12:32:53

That's for all the links Chatee, I am struggling to rind things local to us, which is a surprise as we are just outside London and I thought there would be lots.

chatee Wed 06-Feb-13 12:35:55

If you want to pm further info and interests I will 'search' my contacts info for you Hairy

ps How is your ds getting on?

HairyMaclary Wed 06-Feb-13 12:46:01

Thanks Chatee, will pm, but part of the problem is that he doesn't know what he wants to do apart from run, which he can't really!

DS is fine, we're back in hospital this week for more physio, hence me being ver bored and stalking all the MN boards and firing off enquiry emails to all and sundry!

chatee Wed 06-Feb-13 12:48:34

we were there last month for a week and december for 3

chatee Wed 06-Feb-13 12:55:00

ps i have one currently wide sitting at the moment too - its now the lunchtime routine

amymouse Wed 06-Feb-13 22:41:16

Hello again, in terms of equipment did you all have things offered or have to suggest then push for things? We currently use gaiters and Piedro boots but have been wondering if a walking frame would help in terms of increasing DD's indepedance. She isn't currently at nursery, but I do feel for her as when we go out and about she can't really go anywhere unless I can hold her hands walking or there is a wall she can cling into for dear life! At home she is really confident and full of beans but around other children she seems incredibly placid (which in some ways is good) and can get pushed around a lot. Physio haven't brought up using one yet, which I wonder is because I am at home with her so obvs she always has me there for her. But she is 2.5 and not walking yet and I'm not sure realistically how soon she will...what has anyone else found best?

HairyMaclary Thu 07-Feb-13 08:42:32

We had a walking frame, I slightly pushed for it as I was pregnant at the time and wanted DS to have some independence once DC2 was born. One physio,a very experienced one at the conductive ed place we went to, looked askance at it when we arrived and muttered something abut how he might be better off without it. I diddn't ask why as I wanted it, DS loved it and a physio gave it to us, so what could possibly be wrong!

In hindsight, DS is 8 next month, I think she may have been right. In it DS was independent BUT he learnt a really bad gait pattern, to walk really fast and on his toes - all to keep up with his friends. This gait pattern is very, very hard to break now we are post SDR and he has the capacity and ability to walk in a perfect gait pattern but re retraining the movement pattern is proving hard and frustrating.

If DS had been the type if boy to go slowly of his own accord then it may have worked better but my suspicion is that without it, Ds would have learnt to walk eventually, but more slowly and in a proper, or more normal, gait pattern which would have been better long term. This has to be balanced though against what he got from being independent .... Unfortunately there are no perfect answers and everything to do with CP plays one thing off against another!

sneezecakesmum Thu 07-Feb-13 22:09:51

Verybusymummy. We have tried ABM with DGS who is now 4. He had free smile lessons from a practitioner who had just started specialising in children and had already done 3 (?) years and was already a physio - so well qualified! DGS had a good few lessons and it was amazing to watch how brilliant the practitioner was with him, and how DGS would go into the 'zone' that is mentioned in anat baniels book 'child without limits'. I also have the DVD set ordered from the US. DGS seemed to do more in the way of movements following the lessons, and had better fluidity of movement. If we'd had lots of money we would have continued them but I think they are better if started on younger children (1 ish) or younger. Definitely have a set of lessons if you can. We still use the principles and think, along with other things, it is very useful.

amymouse. We bought an old walker of ebay when DGS was 2ish as physio were being a bit sluggish and he loved and and took off waking straight away. Funnily he walked better in the ancient one than in the new shiny one from physio. In that he just pisses mucks about swinging his legs together and trying to see if he can disappear down the chest harness grin When he does walk though it is with a proper gait pattern, but then he is not SD which can give children a poor walking pattern sad

everydayaschoolday Tue 12-Feb-13 01:08:52

please can I de-lurk and join in? DD2 is 20 months and was diagnosed in Nov with CP. I think it's Spastic Hemiplegia (high tone in right arm). We've sussed sitting now, Jan we got pointing with a finger and this month we've got 50/50 getting food to mouth with her right hand smile We're getting a little further forward each week.

I wanted to de-lurk to thank HairyMcClary (love the name, we love the books) for the walking frame advice. DD2 can commando crawl, roll over, slow side step holding sofa, but not 4 point crawling or walking. I was considering a walking frame but think we might wait a bit now. Physio has not mentioned it yet and OT has just got us a standing (not moveable) frame for her.

I'm going to continue to lurk for a bit as I feel totally out of my depth with all the abbreviations and the education stuff. But thanks for being there and letting me sit at the back while I google all your terms catch up. Please, what is SDR? In my RL it is Strategic Defence Review blush

thereonthestair Tue 12-Feb-13 07:54:54

Welcome everyday. As regards walkers ds has a kaye walker and a rollator (forward facing). He got the Kaye walker this time last year, and at the time was 22 months actual. He could sit, crawl and cruise. Anyway we battled and battled to persuade him there was a point to using it. Also however he mainly had it in nursery and we didn't have one at home to, and didn't transport it backwards and forwards as we travel by bike.

Anyway 10 months later ds walks well with the walker now, but his gait pattern does come and go. He walks straighter with the rollator but it is harder work. We also have a kaye walker at home.

Do I think it is an advantage to have it? Yes, because it does make ds independent and saves my back. One of ds physios thinks that ds will be reliant on the kaye walker for a while, the other one is in the school that he would probably have chosen to walk eventually. So will I think the same in a few years, who knows? I think ds gait may be a bit more wonky than it might be. But he loves being like the other children and it does make him fit in more. It also got him from crawling all the time which had been a big issue and in the end stopping crawling was a big issue for us. In the end it was the crawling that became the biggest problem and the walker was the biggest solution.

HairyMaclary Tue 12-Feb-13 10:41:51

Everyday - in our area it is standing frame or walker, not both, that is provided. This is because weight bearing through the feet is so important for the hip development, I think DS needed them both, but that's hindsight talking!

Personally in your case, I'd stick with the standing frame only for a bit longer until there is an obvious need, like thereonthestair says, they can be invaluable in certain situations.

HairyMaclary Tue 12-Feb-13 10:50:37

Ps SDR stands for Selective Dorsal Rhizotomy, a major operation that is very popular with parents and children who have spastic diplegia CP. It cuts some nerves that leads to the legs and drastically reduces the spasticity easing movement considerably.

DS had his done in April last year at an NHS hospital in Oswestry in Shropshire and we are very pleased with the outcome. It's very, very hard work though with post op rehabilitation. Lots of families choose a slightly different style of SDR performed by a doctor in America at the St. Louis Children's hospital. This styleof SDR is now available in the uk at Bristol and Leeds (possibly elsewhere now too). However it is very hard to get funding from the NHS for it and most families fundraise for the op and the aftercare. We fundraised too for post op physio as not enough is provided by our local team.

If you look at the last thread there is lots of info on there, at least one other regular contributor to the thread had it last year in St Louis and a few more are getting close in the UK. Lots and lots if info on the web too!

everydayaschoolday Tue 12-Feb-13 22:10:07

thank you for the welcome, and the replies. I'll check out the previous thread as advised and google the kaye walker and rollator thanks. We have our next physio on thurs so I'll discuss standing frame/walking frame with her then. But think we will stick with the standing frame for a bit. Glad your DS is doing well post op HairyMaclary smile

sneezecakesmum Thu 14-Feb-13 21:18:15

Welcome everyday.. So pleased your DD is doing well. I dont think SDR is done for hemi (though it may change in the future as I cant see why not?? (discuss!)). The good thing with hemi children is they almost always walk smile Their gait has to be watched carefully though and you may get some AFOs for the affected leg. I would definitely contact HemiHelp. They are for hemi children and I've got a useful DVD as DGS (grandson) is weaker on his right arm so lots of good exercises.

DGS is one of the more unusual CP presentations and not much has been offered medically so far but the neurologist recommended a trial of benzhexol (artane) which we are so hoping will help with the unwanted movements.

inhibernation Thu 14-Feb-13 21:55:00

Just briefly......I believe Dr Park in St Louis has operated on some hemi children. Have a look at the SDR St Louis FB pages.

Galena - yes I believe we are in the same fb group <nudge nudge wink wink> smile

amymouse Thu 14-Feb-13 23:34:30

Probably stupid question-google images isn't amazing-but what is the difference between rollator, kaye walkers etc? We have no experience so to me they all look quite similar!

thereonthestair Fri 15-Feb-13 07:12:21

Kaye walker goes behind ds, so it is sort of pulled. Rollator is forward facing, like a baby's toddle truck or old persons Zimmer frame and you push it. The kaye is the conventional walker for diplegic children as they have arm strength and in theory are easier to use, but ds can sort of hang off it which is why his gait is dodgy with that in a way it's not with the rollator.

Hi, just popping in say hello really. dd is nearly 7 and has double hemiplegia (both sides affected but right a lot more so than left). She used a kaye walker from 2 and then walked independently from aged 3. The kaye walker has benefits socially as it is behind the child and so they can approach other children, walk up to a table to play etc without there being a physically barrier in front of them. Using the kaye walker did not affect dd's gait in my opinion but even it it had I would find it hard to have regrets as it gave her so much independence and gave the chance to be alongside her peers. She still uses it now on 'wobbly' days and there will always be a place in our heart for her 'Mr Walky'.

We came through the Conductive Ed route - I know that not all centres work in the same way but I can wholeheartedly recommend the Rainbow centre in Fareham. The staff are inspiring and we credit dd's progress largely to the Rainbow Centre. We travel up from Bournemouth and if anyone is within driving distance it would be well worth a visit.

The other big thing we've found to help is The Bowen technique. dd has this treatment from 18 months old and it is the main reason that she now has excellent use of her right hand which was previously tucked up and pretty useless.

I wanted to ask parents of school age children here how do you cope with the fatigue? I find dd gets more and more tired just from daily life. It builds up and she becomes more wobbly, more emotional and eventually I have to keep her off school as she cannot cope with anything and just looks like a little wilted plant. This probably at least one day off for fatigue every 2-3 weeks, and then if she picks up a normal cold it really knocks her out and leaves her tired for ages. When she is this tired she can't really learn anything either as her brain gets too tired to cope with reading books etc. She's at home today, flaked out on the settee with some colouring. Thank goodness it's half term, although if we dare go out at all she will end up exhausted again. Boy, this is hard work sometimes! We're cool with the CP itself and have varying therapies in place etc but the fatigue and the far reaching effects of it are really something else.

isw Fri 15-Feb-13 22:27:16

Just checking in.
Dd is 5 at the month spastic diplegia with some arm involvement, mainly her right. She had SDR in St Louis at the end of Sept last year - she was also accepted in Bristol but we choose to go with the quickest route as she is still in nursery. She uses a Kaye walker, we have always had a standing frame and a walker. She had a more supportive gait trainer from about 20 months and have moved to a Kaye as she got older and stronger. Her "walking" in the gait trainer was awful she uses to kind of jump and push rather than walk. But it was great for socialisation, independence and that all important upright time. A standing frame is good for hamstring stretching, wieght baring which helped the bones develop and when used in prone back extension and strength work.
We walk, soft play, cycle, swim, generally try to do Physio in real life situations but also have Bobath input to help with her retained reflexes. Her startle is still very pronounced.
Fatigue is a real problem we try and manage her activities and include stretching time and when she gets really tired she kind of curls up which in turn makes everything more tiring sad Now I kind of wiegh up what she wants to do and what she needs to do based on the Spoon theory which was written about people who live with pain andother conditions but i think works loosely for CP too
www.butyoudontlooksick.com/press/articles/written-by-christine/the-spoon-theory/

isw Fri 15-Feb-13 22:27:42

*5 at the end of the month!

everydayaschoolday Sun 17-Feb-13 21:01:31

Hanging thanks for tip on Bowen Technique. I've looked it up and it sounds really positive, and no harm done if it doesn't work for us (looks like a very specific form of gentle massage). We have a local practitioner about 8 miles away and on her website it mentions she's treated a 2yo boy with hemi successfully. At £30 per hour session, I think we'll definitely give it a try. thanks so much - I'd never have known about this thanks

Physio is very pleased with DD2 standing/side-stepping progress and was disappointed the standing frame took so long to arrive (2-3 months). Good news is that they think she's almost ready for the walking frame and are happy for us to have both. So they're sourcing a walking frame for her now because it took so long for the standing frame to be dispatched.

Amymouse apart from the walking frame, the physio & OT here have done all the offering of our equipment; we feel very lucky and supported. And as you can see, physio was very amenable to walking frame suggestion.

Thanks everyone.

inhibernation Mon 25-Feb-13 06:39:40

Bumping to mark place

Hi, I have a 12 year old daughter with left sided hemiplegia (and issues wih her right leg too)

She had botox injections two weeks ago, the latest in a long line of them.

inhibernation Sat 02-Mar-13 23:22:52

Welcome Pheasantplucker smile

Hi all <waves>

dd has taught herself to jump. She was so proud of herself at the library rhyme time session when she could join in. It was a proud/sad moment for me though as it takes her so long to prepare for the jump compared with her peers - hers is one to their 5 or 6! Still.....dd seemed oblivious and was really chuffed so that's what matters.

Still on waiting list for SDR @ Bristol. Not much else to report. Hope everyone is ok smile

Galena Wed 06-Mar-13 15:33:03

Hello all! Welcome to the new people!

We are still waiting to hear about SDR. DD had her physio assessment in Bristol on Jan 11th to see if she is suitable, and we are STILL waiting to receive the report. <sigh>

We're going to have Botox again in April anyway, to try to maintain her mobility before SDR as, if she is suitable, the op won't be for about another 8-9 months.

amymouse Wed 06-Mar-13 19:35:33

Curious as to what parents of prems with CP have been told.. We have just had 2.5 year review with our paed as well as recieving MRI results. MRI was surprisingly clear; our paed told us he has assumed he would find PVL to explain her lower limbs being affected and was a bit surprised by the outcome. DD is doing (in my non-expert opinion) brilliantly. She isn't yet walking on her own, only has a handful of words which are very recent and still relies on tube for feeds, but her understanding is excellent, she is very confident and seems to get on ok socially. He put her down as being at the stage of an 18mo on average, less so on gross motor skills which although doesn't seem wholly unreasonable. What he did say though, is he puts all of her delay including physical down to her prematurity not CP. I wasn't under any illusions that her CP was more severe, but as no one had really talked about it since dx, I did assume that it was the CP delaying her ability to learn to walk and to an extent her swallow/speech. Her tone is quite dynamic, when she tried to do something physical her legs become very tight and she still struggles to bring her feet flat. Her left leg (worst affected) is notably shorter looking because she can (even when relaxed) rarely straighten either leg and constantly looks hunched over. He thinks that the connections we can't see in the brain, are either damaged/immature due to her prematurity and that is what is affecting everything. So now I just feel very confused/thrown and also a little apprehensive about how this will pan out with the underlying mild CP. She was born 27+6 and aside from a very traumatic birth (born at home too quickly before medics could arrive) did pretty well in NICU; no major infections, no heart problems, no brain bleeds etc. I know its a case of being patient and just celebrating whatever comes whenever and cross any bridges when they come!

alwayslateforwork Wed 06-Mar-13 23:41:30

Just whizzing by... (It's madwoman btw)

Life absolutely crazy-making, but just busy, no drama!

Will have a catch up later x

thereonthestair Thu 07-Mar-13 07:28:21

Hello everyone. Galena hope you hear on sdr soon. We've currently decided to wait a bit for an sdr assessment, for a variety of reasons. Not least that ds is still not walking independently although he does love his kaye walker now. Changes to the team in Bristol and not really being sure where we would want to go to as a result, being another part of the reason. Anyway we'll see soon enough and probably do more Botox in the meantime.

Amy, ds was assessed at about 18 months when he was 2. He's caught up a bit since. We were told that it was all down to cp, rather than prematurity. A lot of it was because he did the assessment standing up, but can't stand! We haven't had an MRI though. Neither us nor the paed could see any point as mri's often don't show anything apparently, although the paed also told me that for dystonic cp the absence of damage in an MRI may well mean it's not cp. the physios also say that low tone due to prematurity is interacting with the cp, and also with his hyper mobility but that is also slowing ds down at this stage. I have to say that I am not sure I care much ds can do what he can do and why doesn't really affect that.

As a separate point anyone got experience of trikes or scooters for children with cp. I have a recommendation for a kitten, but also for a balance bike and an ordinary scooter. Any thoughts?

Also any thoughts about where to get second hand equipment from apart from eBay?

Dev9aug Thu 07-Mar-13 07:44:07

Hello everyone, hope everyone is doing well. With regards to prematurity thing, I don't actually know. Ds2 has had an MRI and genetic tests and they all came back clear. So they have no idea what caused it. He was born at 26+6 with an EMCS. To be honest, like thereonthestairI don't actually care, what caused it, I just want to make sure ds2 gets the best support he can to make sure he achieves his potential.

We had our paed review last week, he is 15 months old and she put his skill level down to 9months old. He is doing most things now, sitting, crawling, standing up himself against doors or sofa, cruising and walking with those brick trolleys. Our physio last week had him climbing stairs, well try to anyway.

We just moved yesterday and I am going to miss her as she was brilliant. She did also suggest to me to look into SDR. NHS physio and OT last week were rubbish in comparison, we are still waiting for Piedro's and a Kaye walker for him and its been over 7 weeks.

Did anyone else dc were small at this age and did they catch up? Ds2 is still off the charts, it's something like negative 4th percentile if they did plot it and we haven't got the foggiest what to do about it?

Dev9aug Thu 07-Mar-13 07:46:46

Oh and thereonthestair I am sorry we couldn't meet, we got very busy in the last couple of months that we haven't had a chance to breathe even. I was really looking forward to it as well..sad

Galena Thu 07-Mar-13 13:43:04

thereonthestair we have a kitten which DD LOVES! It gives her the freedom of getting from A to B without too much effort, but able to keep up with us. She has lateral supports and foot straps and is ok like that as long as she wears her DAFOs. We got the trike second hand, and it didn't have the built-in DAFO things which are available. We also have a balance bike but DD hasn't had a chance to try it yet because it is still too big for her. (One day she'll grow!). For Christmas she wanted a scooter so we got her a 'My first scooter' which is nice because it starts off with 4 wheels so they don't need to concentrate on the balance as well as the scooting. She likes it but is a) slow and b) has to be on a completely level surface. It is good physio though because she gets used to standing on one leg. So, sorry, that didn't help much, but it depends what you want it for - trike is good exercise and best for actually travelling, scooter is good for balance but slow and needs balance, balance bike we've not got to yet.

Dev DD was 'sitting, crawling, standing up himself [herself] against doors or sofa, cruising and walking with those brick trolleys' at 15 months actual (born at 27+4). She then plateaued for MONTHS which is when the concerns were raised about her CP. Then at 2 years she began to stand unaided for seconds at a time. Then at 2y2m she a) took her first unaided steps and b) was diagnosed with CP! She was also tiny. She only got onto the centiles for height at 3y5m and for weight at 2y3m. She's now creeping up gradually...

alwayslateforwork Thu 07-Mar-13 14:32:07

There, we had a kitten until dd2 was about 7. She now has a trailmate low rider. Same you don't live in Canada as we donated our kitten to the local physio to give to a child who would benefit - as far as I know, it's gathering dust in the store.

Remember to ask your physio about any local charities that help purchase this stuff. We've only ever used e-bay for second hand though.

Galena Thu 07-Mar-13 15:43:10

Not sure where you are, there but there's one at a really good price on ebay: www.ebay.co.uk/itm/111023160526

amymouse Thu 07-Mar-13 19:01:54

I'd been curious about scooters/trikes too. We've got a basic wooden ride-on for home and DD loves it to get around without help. We've started looking at walkers now. Physio did say because of her small size she might initially struggle with a walker and similar equipment which confused me a little; she isn't ridiculously little (about 83cm, in 12-18m clothes) and I'd thought it would be depend on strength etc unless equipment is giant!? I saw the first scooters where you can attach the seat until they can move independantly although was a bit worried about her launching herself off as her balance/core strength isn't always reliable! Guess trial and error will sort that!

thereonthestair Thu 07-Mar-13 19:08:49

Thanks for that, not my area but doable, so will check it out.

sneezecakesmum Fri 08-Mar-13 20:04:14

Facebook has a special needs equipment site which I think is better than ebay.

thereonthestair Fri 08-Mar-13 20:17:41

Bugger another reason to consider Facebook.... I do not yet have an account, and can't quite get my head round the idea it is not evil.

sneezecakesmum Sat 09-Mar-13 13:29:29

Its not evil grin Just make sure all your security setting are friends only and no one will find you if you dont want them to!

The site is excellent, no waiting around for auctions to end, lots of activity, nice honest people (so far) smile

Galena Sat 09-Mar-13 13:43:04

That's true, and where I found the link to the one above...

sneezecakesmum Sun 10-Mar-13 14:05:54

Has anyones kiddie used a KidWalk? Gait trainer that is. www.southwestmedical.com/products/KidWalk-Gait-Mobility-System-23365.html
its quite weird looking but the dynamic movement helps with balance and weight shifting and makes the child work more for balance which in turn makes for a more natural gait.

physio has loaned us one to trial with an aim to get a new one as the rifton gait trainer is outgrown.

sneezecakesmum Sun 10-Mar-13 14:11:47

www.youtube.com/watch?v=6YtHEHjfLc0 This explains the movement principle. Its huge compared to the trainer but the physical side of it looks brilliant.

Galena Sun 10-Mar-13 15:26:01

Looks really interesting... DD never used one, but it does look fantastic!

thereonthestair Wed 13-Mar-13 18:09:32

Hello everyone, me again. Quick qu at our last paed appointment the paed referred us to something called early support. No idea what it is apart from something for schools. Now they say we don't qualify. Any idea what it actually is?

amymouse Wed 13-Mar-13 19:47:58

If its the same as in our area, its a service designed to help them develop with attending nursery/pre-school in mind. We were referred as DD is marked as developmentally delayed in most areas to some extent and paed thought she would need a lot of help. We don't have portage but it sounds very similar to that with maybe more an education-based goal in mind. When Early Support came to do a home assessment they felt we wouldn't really qualify for the service because she seemed quite bright; that even though her speech is affected the SALT covered that and physio covers her physical difficulties, and her play skills seems roughly age-appropriate which was what they intended to work on. I think maybe our paed felt she was more behind than they did, if that makes sense! We were told to keep their number and wait until I send her to nursery at which point they will co-ordinate her care as appropriate and work with the other services like SALT, PT to make sure she has the support she needs. Maybe if your nursery is already very good at ensuring your sons needs as met they felt they didn't need anything more? If it is something different in your area, apologies for ramble!

thereonthestair Wed 13-Mar-13 21:17:27

Many thanks. The nursery are great, and he does ok it really does just seem to be the physical, but we are looking about what happens when we have to get him to school. Did anyone (other than galena whose dd was I think much more physically able than ds is at his stage) get a statement at this age. Galena I may take you up on your offer to share info in due course if I may.

Galena Wed 13-Mar-13 22:23:25

Yes, of course. We had suggestions to go to the Early Start people (I think) because they could give the preschool a grant to pay for 1:1 before/without statement. As it was we didn't need it although we have applied for an inclusion grant for an out of school club.

chatee Thu 14-Mar-13 13:10:37

My dd had a statement when she was in pre school (well the last 7 months) as she only had one full year at pre school(due to being an August birthday), it was me who started the process of statementing before she even began as I knew there was no way she would benefit from being there without help.
Early Years Funding is now in place to support pre school age children who (most likely eventually will have a statement)to ensure that they can attend and access.
I would advise to apply for a statement when the child is 2 years old or before (as then the LEA have to assess the child) and it is better for the parent to do this, use the IPSEA website and the template letters available on there,

and remember 9/10 application letters will be refused immediately(in the hope that parents accept that decision) and then if only 5/10 of those parents appeal that decision then the LEA has saved time and resources and money (rather a short sighted attitude - but the LEA cares about its budget, not the individual needs of your child!)

Galena Thu 14-Mar-13 13:14:58

(We were very lucky and haven't had to appeal or go to tribunal through any of the process - we got full-time support at preschool and at school next year straightaway. The delights of VERY supportive professionals!)

redwellybluewelly Thu 14-Mar-13 14:32:13

Can I check in please? DD (2.7) HIE II and RH hemi. Extremely mild but with seizure disorder and microcephaly we still have a few battles to fight for her. Attends mainstream nursery which has been an absolute godsend (my DH and I work FT) and her current issues are continued high tone in her right shoulder and down to her elbow and speech delay. However her right hand which this time last year wasn't used at all is now used for most activities and even has the ability to start isolating her thumb and fingers.

We pay privately for all therapy, did Brainwave twice, currently having a set of 6 SaLT sessions to evaluate the severity of the speech delay and determine the cause (whether it is oral motor or not). DD has poor temperature regulation which makes hydro hard but hoping to start hyppotherapy when she turns 3 if we can find a helmet big enough!

NHS OT discharged us a few months ago having seen her twice since birth with an advisory note that her concentration was poor and we needed to refer her again if that was still an issue at 3.

Verybusymummyof2 Thu 14-Mar-13 19:49:27

I've been reading all the additional therapies you are using for you dc and am confused. Which do we choose??? How long do you give it before you change??

We have had 8 lessons of ABM. Before the end of the first lesson, my daughter was babbling Bababa, gagagaga which she had never done we were shocked. We have seen improvement, She has started to roll (constantly when her head is slightly raised on a cushion) just a few times when entirely flat. But my concern is she most often screams through the entire lesson, stopping the moment I pick her up? Should we continue or is this doing more harm with her being so upset?? What does anyone think?? I just want to do everything I can to help her reach her potential

sneezecakesmum Fri 15-Mar-13 21:35:37

verybusy. We had quite a few ABM lessons and DGSs amazingly, didnt cry at all, ever, and he screams the place down at everyone else. The lessons were free as the practitioner was training and is now qualified. We didnt notice enough changes to warrent the expense of continuing though I would have loved to continue. I think starting younger may have been more beneficial. The practitioner came to the house, which I think helped. We also put the TV on and DGS looked at that for a while before doing the ABM 'zoning out' thing you have probably seen? It just distracted him long enough for the movement therapy to start registering. Maybe the therapist isnt right for your DD? Or is it the environment?. Maybe an ipad with cbeebies playing very softly to distract her long enough for the 'listening' to start? tbh children having ABM are supposed to be listening to the what their bodies are doing and distress may be overriding this to some extent. Odd that the therapist just keeps on, our lovely man was brilliant with DGS.

redwellybluewelly Fri 15-Mar-13 22:13:01

We didn't do ABM, however when we started doing PT via the Brainwave therapy (which to be fair the NHS could have given us had they bothered seeing DD regularly) DD did get upset because we were encouraging her to use her muscles and move in ways which were unfamiliar to her.

I found treating her sore muscles the same way we would feel after a run or strenuous exercise helped. We also found DD's muscle spasms worsened a great deal when she did movements which were unfamiliar. Gradually they have reduced and not required medication but there are times they trigger, growth spurts, illness, teething, development leaps etc make her stiffer. We did find distraction helps re PT/OT exercises and also being at home.

sneezecakesmum Sat 16-Mar-13 11:10:27

redwelly. With ABM the movements are passive, and the practitioners specifically do not stretch or move into painful areas. If they do they stop because pain signals block the motor learning pathways. So its probably some sensory or environmental issue causing the problem. Think verybusy will need to chat with the practitioner.

We also do brainwave, though its getting more difficult to fit the progam in as DGS is at nursery 5 mornings. And yes, he gets tired and foot stompy but he is dyskinetic not spastic so his leg muscles just get tired and he doesnt have spasms. I agree, maybe home treatment, and distraction.

thereonthestair Mon 18-Mar-13 16:47:00

Hello everyone. Just popping by, partly because I need a rant about DS NHS physio who seems to now be suggesting that DS crawls up and down stairs rather than walks with support - apparently it will give him independence. So the fact you spent 4 months telling us not to let DS crawl at all was wrong was it? But mainly to ask if anyone knows anything about building up resistance to botox. DS had it in October, and it was really sucessful, and his private physio says we should try again in May if we can, but I know there is something about building up a tolerance. Anyone considered this, had botox more than every 12 months, got good or bad experiences or links to papers?

sneezecakesmum Mon 18-Mar-13 19:57:39

I've only heard that botox doesnt work if the right muscles are not targeted and sometimes it takes a few goes to get the right ones. Not heard of tolerance building up though, but we dont have it so no personal experience. we know children who do though.

Thought crawling was really good for all sorts of reasons. Confused.com confused

redwellybluewelly Mon 18-Mar-13 21:39:33

I thought crawling was to be encouraged for cross body patterning and helping to improve the connections between the brain hemispheres. Isnt that why adults who can't crawl and are shown how to improve in coordination? Could be very very wrong though.

Our DD started to walk too early as it caused more issues, main one being increased shoulder and arm tone because her core was so poor. Physio missed it.

thereonthestair Tue 19-Mar-13 07:25:16

Crawling was good, but ds is 3 now, and crawling was supposed to be encouraging the muscles to shorten further whereas he is supposed to walk to build up his stability when upright. The nursery have also said they think the physio was wrong about what she was trying to do and ds was never going to manage. Not sure where to go from here....

sneezecakesmum Tue 19-Mar-13 19:36:31

Heavens, no wonder you are confused. Trouble with CP and all the attendant crap is you are constantly saying 'if we had only done this/that', 'if only we had known that!' Its a bugger all right! sad

2old2beamum Tue 19-Mar-13 20:50:18

Sorry slightly off previous topic but wondered if anyone could help?
We (DS and I) are off to Nottingham on Thursday for a SDR assessment or Baclofen Pump. Our orthopaedic consultant feels SDR more appropriate as his upper body is less stiff and he can use his upper limbs for on body signing. He is deafblind with no useful sight and profoundly deaf.
Any advice welcome as I must make the most of this 8 hour round trip.
The 1st appt is a physio appt.
Thankyou

Dev9aug Tue 19-Mar-13 21:43:17

Thanks Galena. Hopefully ds1 will soon start growing. We finally managed to get a Kaye walker for him today. Its a half size and it is still too big for him.grin

Verybusymummyof2 Wed 20-Mar-13 02:36:54

I have read that Crawling is definitely something to be encouraged, it is really important for brain development!
Sneezecake - thanks so much for your input re abm. Took your advice and I do think it is an environmental thing. She had a lesson today, we took her play mat, some toys and had ipad on playing music and pictures. She 'zoned' out for the first 3/4s of the lesson. Which is MASSIVE improvement. Hope it continues. Thanks again.

thereonthestair Wed 20-Mar-13 08:02:44

Crawling was something we encouraged, and ds can crawl with a reciprocal pattern, but given he can crawl well we are trying to get him to walking and getting around crawling is counterproductive to that goal...

sneezecakesmum Wed 20-Mar-13 11:34:14

Verybusymummy. So pleased things have improved. The more she enjoys her lessons the less unsettled it will make her hopefully for the next ones. The zoning out thing is when they are really learning. Bet your eardrums are happy too grin We have the book child without limits and the DVD set and try to use the principles in everyday life smile

If the child is a competent crawler then its reasonable to progress onto walking as that is 'normal' progression. We do walking upstairs fully supported because it teaches that pattern. DGS seemed to have too many long arms and legs to crawl anyway. grin

Hi 2Old. Hope someone gives you an answer re SDR smile

Muffinpig Tue 26-Mar-13 10:42:14

Hi everyone, I have a similar question to 2Old. I am seeing the orthopaedic surgeon tomorrow. Last time I went he was very dismissive of SDR and I had planned on doing some research before I went again but I have totally lost track of time and just realised the appointment is tomorrow, argh! Can anyone direct me to some good research/information on SDR? Last time he said that his opinion was that it was the PT after the surgery that had the most effect, and not the surgery itself.

Galena Tue 26-Mar-13 11:24:53

I found the Bristol webpages very interesting reading when we were considering SDR. Although, of course, they are written from the perspective of a centre offering the SDR themselves.

2old2beamum Tue 26-Mar-13 12:15:21

Hi thanks for information on SDR Galena. Having read the web page DS seems much less able than their criteria and I realise it will be done for management as his legs are so rigid his care is so difficult despite intensive physio.
We went to Nottingham last Thursday to discuss SDR/Baclofen pump.
We saw a neurosurgeon and as we thought, DS not a suitable candidate for a pump and have decided to go ahead with SDR. As you rightly say Muffinpig physio is very important post operatively, goodluck
Just hope we have made right decision
Thanks

Muffinpig Tue 26-Mar-13 12:30:48

Galena, thank you so much. It looks as if DS would be a great candidate but he is only 3yo at the moment. I will take the info leaflet with me tomorrow and see what the dr says.
I seem to remember that you were fundraising to have your daughter's operation in the US? Is that right? Can I ask, if you don't mind, is that because the NHS refused to do it for her? Have you had the surgery yet? I hope all is going well.

Galena Tue 26-Mar-13 12:59:24

DD is only 3 smile

We were fundraising, yes, but not for the US. Our local PCT wouldn't fund it on the NHS, so we have to self-fund. We're still waiting for the report from her physio assessment to see if she is a suitable candidate. If she is, the op should be by the end of the year. It has taken us since May last year to get this far - so it is important to get the ball rolling asap. I think they estimate in Bristol it will be about 18 months from referral to op. Leeds, Nottingham and Liverpool may be quicker. Also there is talk of them beginning to set it up at GOSH, but I'm not sure about timescales. Minimum age now for SDR in the UK is 3 (in the US it is 2)

Physio is hugely important after the op. 5-6 hours a week with a physio for the first 6 months after the op, I believe is what they suggest... then 2-3 hours a week for the next 6 months, and 1 hour every 1-2 weeks for the next year...

thereonthestair Tue 26-Mar-13 13:09:40

Last I knew about GOSH (from various sources including a friend who works in paediatrics at GOSH) is that they were still thinking but in practice no further forward. The job the consultant went for was not to do anything SDR and as a result he is no longer looking at that. My Local director of childrens service has even tried to get him to our area to talk about SDR from his bristol experience but at the moment he wont as it is not in his remit. As such and given there is no team or fudning at GOSH I wont hold my breath. I actually suspect it will be elsewhere in London first.

Muffinpig Tue 26-Mar-13 13:22:39

Thanks Galena. So how would I go about getting a referral to Bristol or any of the others? Would it be through my local consultant (orthopaedic surgeon). Given that he was very reluctant to even discuss it last time I don't hold out much hope.

alwayslateforwork Tue 26-Mar-13 13:30:03

We hugely promoted crawling for dd2. I've often mentioned my Attila the Hun techniques to teach crawling using the stairs etc... I have never met a physio (and we have had about ten or so, to date, that we have been very involved with) who has suggested anything negative at all about crawling. Of course, it's only part of the picture, and there should be a good schwack of appropriate weight bearing (using a standing frame as necessary) and physio stretches to make sure there is as little decrease in muscle/ tendon length as possible, but tbh contractures are part and parcel of spastic cp - hence the management strategies. Banning crawling sounds completely counter- productive in a ll sorts of ways.

Sorry, I know that was a while ago, but it's made me quite cross. How awful to be removing some independence from a child, and preventing development in that way!

There - we had a similar glitch around 3 - the physio took away dd2's walking frame, with the expectation that if we removed the support, she would begin to walk independently. It was the worst year, honestly. She was far less independent than before, we ended up using the major far more, and she was very obviously 'more' disabled, and required more support. After a year, they gave her a new improved walker (croc, my fave walker ever) and she was back to being miss independent again. After a further year she walked independently (and, as you know, she now skis/ whatever).

Sometimes it is just too soon to expect that level of development, but it doesn't mean that it won't be possible in the longer term - and I know it was just too early for dd2. She didn't have proper standing balance until nearly 5, although she could weight bear and hurl herself across the room, a la 12mo! So, don't give up, he does sound as though he is nearly there - just that he isn't quite ready yet.

I don't often get mardy with professionals (generally the whole thing thing is a 'suck it and see' experiment, and if it doesn't work, you move on to the next thing) but I'm ticked about the crawling.

On a brighter note, dd2 had ft 1-1 in nursery from 2yo - they gave her a free place from her first birthday due to her needs. She wasn't statemented until yr r. We did it in the final yr of nursery, so it was ready for school. Physio, OT and slt all went into nursery and liaised with the keyworkers and she had portage from early too. Tbh, I find there is a larger degree of acceptance for support with cp - in terms of provision, it's a much safer bet to have a cp dx than a social communication disorder - people have mostly fallen over themselves to help dd2, whereas ds1 was roundly ignored until he was 10...

Galena Tue 26-Mar-13 13:53:11

there that's interesting, I know of a few people on a certain FB group who have been to GOSH to see the ex-Bristol neurosurgeon...

But yes, MuffinPig ask paed for a referral. They are not allowed to turn down a request for referral to a specialist, so if he tries to put you off, be prepared to stand your ground. I simply told my DD's paed that I wanted to go and have a discussion with the surgeon about SDR to find out more about it...

Muffinpig Tue 26-Mar-13 15:44:48

Ok thanks, thats really helpful. I will do my best to stand my ground! Might need to get a babysitter for my 1yo DD then so I can actually have a proper conversation.

Sorry to keep asking questions but how do I go about getting a statement? Do I just apply somewhere independently like for the DLA?

alwayslateforwork Tue 26-Mar-13 18:25:43

Have a look on the IPSEA website. Tells you everything you need to know.

It is much easier if you have nursery or an educational establishment onside, though - if they apply it tends to be much easier.

isw Tue 26-Mar-13 19:13:04

Hi everyone,
Well I can't believe it but dd is 6 months post SDR and I honestly can not believe the changes in her life. She has gone from being able to use her Kaye walker when she was wearing AFOs and ankle prompts to stop her scissoring to being told yesterday she doesn't need splints anymore! Without the op she would have been in a wheelchair pretty much full time by now as her legs were getting tighter and tighter. She wears insoles and has night splints for stretching when needed.
She never really crawled, only bunny hopped and we are really noticing the lack of co ordination now. Her walking in her Kaye walker is deteriorating as she is too good but after a few steps with tripods she gets in a awful tangle as she is not used to moving all 4 limbs separately.
Although she can now crawl she hates it as she can move so much faster by hopping. We make her crawl up the stairs at home and in soft play. We have also started taking her climbing to encourage that cross body motion.
We went to St. Louis but were accepted at Bristol am happy to answer any questions

sneezecakesmum Tue 26-Mar-13 20:40:26

isw. All sounds fabulous. So pleased SDR is being done in the UK.

2old2beamum Tue 26-Mar-13 20:57:17

Hi* isw* Briefly DS 14 is a post pneumococcal meningitis at 8 months. Left with devastating problems severe CP affecting all limbs worse lower limbs, deafblind epilepsy and jej fed. We adopted him at 5 so nothing had been redressed
On the plus side he is a beautiful boy who uses on body sign language so need upper limbs He has a cochlear implant at 9yrs which gives him enviromental sounds,
He as he gets bigger is becoming difficult to do "cares" and we have been offered SDR do you think as a mum it will benefit him?
Sorry for long post

isw Tue 26-Mar-13 22:33:01

2old2beamum it's a difficult one having not met your DS.
In my experience it is so much easier to care for DD, she no longer scissors so personal care is much easier. Her legs were very floppy post op, so you were having to deal with heavy spaghetti legs floppy everywhere rather than twisted out in front. She was unable to do any standing transfers barefoot, she can now. Her sitting has improved dramatically as she is not constantly counter act her spastic legs. Bathing is easier as she is not being pushed back by her legs. I am able to carry her because she can put her legs around rather than trying to lift her out in front of me. Dressing her is way easier. I realised today she was wearing a top i had discarded as too small (ie too difficult to get on) She does have some arm involvement, mainly her right, obviously she still has the increased tone in her arms but her fine motor skills have improved. She is much chattier. Whether that is from the improved sitting or because the 'distraction' of her legs has been reduced I don't know. She is much more comfortable in general and sleeps better.
I am hesitate to give advice about someone i haven't met but If I was in your position I would definitely consider it. It sounds like surgery is in your DS's future SDR could mean just one rather than a series. From my experience it sounds like moving, handling and positioning could be made easier. He could be made more comfortable and through that help to make the on body sign language more easily understood. It is a serious procedure however and your DS is older than my 5 year old DD. But I am struggling to think of any negatives after the initial first couple of weeks.
Wow, that is a long post but I hope it helps and please feel free to ask more

millienmaxmummy Tue 26-Mar-13 23:53:31

just popping in to say hi all its my first time here, my 8 month old has just been diagnosed with spastic hemiplegia cerebral palsy. He is doing good rolling over and sitting up and even has a vocab of 5 words.am so proud of him, from the first prognosis of him when he was born he wasn't expected to do anything well he's sure showing them! My lil soldier keeps on fighting

inhibernation Wed 27-Mar-13 13:29:30

Hi all <waves>

Early support in my area is the allocation of a coordinator/key worker who supports parents and coordinates MDT meetings bringing together various professionals involved in the child's care. It was a great help to us at the beginning of our journey, soon after discovering dd has CP.

Re bikes - dd has an ordinary bike with stabilisers. She has lycra splint socks during the day so can wear ordinary trainers. The bike has toe caps on to help keep dd's feet in. They do come out now and then. But it's been too bloomin cold to go out on it for ages sad

Has anyone heard of halliwick swimming. I really would like to get swimming lessons for dd but am wondering whether this type of tuition would be better for her. Can't find any tutors in my area unfortunately.

inhibernation Wed 27-Mar-13 16:30:25

Welcome millienmaxmummy

I just realised I missed loads of posts on here because my pc formats them differently.

Re SDR....please do not be discouraged from considering this just because your child's Paed/GP/Orth dismissed it. I'm not saying you should ignore what they say but medical advice like any other is not always correct and often further research is necessary. Think some people might have initially thought SDR was too drastic for dd but most have come round to the idea now that they understand more about the procedure and indeed the course of the condition itself.

isw - glad dd is doing well smile

hairy - hope ds is still doing well smile

sneeze - how is dgs getting on with the lycra suit?

sneezecakesmum Thu 28-Mar-13 11:11:05

Hi. DGS has a 2 day old baby brother so we have been busy here! Mummy with c section but all OK after last time's trauma smile

Re the lycra vest. It's a SPIO vest from USA so not supportive as in a corset type garment. We used it on DGS when he didn't go to nursery as his physio said she wasn't keen because he needed to build up his weak trunk muscles rather than rely on lycra and she sees him in nursery. Anyway we noticed a definite improvement in his unwanted movements and much more stable in sitting upright. Anyway we did fess up to the physio and she was fine with it
It's for proprioception not support so that was ok!

Been all skewiff for the past few weeks as DGS now has a 2 day old baby brother and DGS goes to nursery 5 mornings so it was too much for DD with the bump to get it on, tube feed, struggle with a heavy 4 year old into the vest, but we hope to get things back on track. He is also going to start a medication to help with his dyskinetic CP so fingers x that he can start wearing the vest again and benzhexol helping. He has no significant spasticity so ops are not in the equation.

Would definitely recommend the SPIO vest for weak trunks. It helps with arm movements too. Only drawback is its slightly warmer (though nowhere near as bad as we thought) than a normal vest, as DGS gets very hot because he uses so much more energy than is the norm.

amymouse Thu 28-Mar-13 19:27:47

So excited; today we got a kaye walker! I was really apprehensive, but DD had it sussed by the time the physio left. Since then, all she wanted was her "wheeees" (wheels)! So proud of how well she has taken to it. On the slight downside, we really have to up her physio regime as her hamstrings are really tights, an impacting on her pelvis and sitting, since the last string of growth spurts. But we have been accepted for another 8 weeks of rebound & hydrotherapy which is brilliant. We're about to move and once we're resettled I'm interested in doing some proper research and enquiries into some alternative things. Does anyone know of anything north east/north based? I know there is conductive education in Durham but I'm not convinced that is for us. Hope everyone else is gearing up for some serious easter egg consumption!

sneezecakesmum Fri 29-Mar-13 10:52:46

Fantastic news with the Kaye walker amy smile. The tightness is awful with growth spurts. Does she have Botox? DGS has dyskinetic CP so he is all balance and coordination and fluctuating tone, very frustrating. He took to his Kidwalk walker brilliantly after struggling and hating his rifton gait trainer. His feet go flat to the floor more now and scissor less when we support him in walking. Only trialing it was a few weeks so quite amazed. The right walker really gives cp kids a new outlook on life.

thereonthestair Thu 04-Apr-13 11:10:14

Ds also has a Lycra vest, be hates it but it does help stop him scissoring when he tries to walk. Apparently the research shows that it doesn't make the children warmer. Given the truly crap weather I am not sure I believe it though.

Amy great news with the kaye walker. I hope she continues to love her wheels. I am currently trying to persuade ds to use his to walk to nursery. It's about 300 -400 metres i would guess so not far, but so far even with out and out bribery he is managing about half the distance. I then end up carrying him, the walker and whatever other crap he's taken or found (yesterday was stones !)

We are trying to get ds onto a trike we got an imp, but it's going nowhere fast, and dh has decided, in a very dh way it's because the trike isn't right somehow. Of course he won't say how apart from perhaps it is too big. He is now going on a out a tomcat tiger, because of course that will make all the difference, I know we aren't poor but throwing money at things doesn't miraculously come up with a solution.

alwayslateforwork Thu 04-Apr-13 16:07:06

Oooo, I've missed loads!

Squeeeee at dgs having a brother! How lovely, and am sooooo pleased it all went well (and with the CS etc. sanity rules) how is he finding a baby?! Congrats sneeze! (And grandma!)

And yaaaaaaaay! For the Kaye! Dd2 loved hers. Proper loved. Gave her a whole new sense of the world. Massive confidence boost!

Such exciting times!

sneezecakesmum Thu 04-Apr-13 21:40:52

Thank youalwayslate grin giddypants aka sneeze is well but tired! we have both put up pics smile

thereonthestair. Our OT organised a day for all the reps to try out different trikes with other kiddies. They looked at things such as the leg pattern and unfortunately it was more complicated than we imagined to get the right size and pedal pattern for DGS. 2 were perfect so we got the quest 88 Kitten. It is fabulous and DGS can pedal up a storm which amazed us as the kid is totally without coordination!!

He is getting on amazingly well with his KidWalk even with the wrong chest piece and no leg guides (we looped some webbing round his legs and it does blush). Its just to trial so need to get the physio to OK this expensive bit of kit.

Also finally started on his trial on benzhexol and I am sure i am just imagining his hand is steadier. Yes I am, as its only a week and he is on a starter does of 1mg twice a day increasing weekly on increments of another mg up to 15mg a day..... So I am definitely just imagining it!

alwayslateforwork Thu 04-Apr-13 22:33:47

Aw, dd2 had a kitten. grin she loved it. I didn't know she had nc'ed. Will go hunt for pics grin

alwayslateforwork Thu 04-Apr-13 22:35:49

Oh my life. Is there anything cuter than a newborn?! <clucks> he looks a good size!

Congrats all!

sneezecakesmum Fri 05-Apr-13 21:54:22

smile Poor giddy spent 8 hours on the baby ward as newborn was sleepy after upchucking and wouldnt wake to feed. 8 hours later and lots of tests he decided to wake up again and was bright as a button!! I think the minimal crying, lots of sleeping, good feeding is called......normal? Not something we know anything about after DGS grin

alwayslateforwork Fri 05-Apr-13 23:58:47

What a stress! Glad all is ok - tis whole new ball game!

alwayslateforwork Sun 14-Apr-13 16:44:34

Dd2 was asked to be a flower girl! grin

There will be three - and another little girl with cp, too - I am chuffed to ribbons! grin

sneezecakesmum Sun 14-Apr-13 17:07:31

keep looking for a like button! Too much facebooking!

Anyway a definit 'like' for DD2 being a flower girl smile

alwayslateforwork Mon 15-Apr-13 06:26:47

I know, it's just so 'normal' and so absolutely exciting for any little girl! grin

It's the wedding of her adaptive ski instructor, who she has been desperately in love With since she was 4. grin of late she has been v understanding that he is marrying someone else - but will continue to adore him from afar ;-)

Dev9aug Thu 18-Apr-13 10:16:04

Congratulations on the new arrival sneezecakesmum.

Congratulations to your little girl as well alwayslateforwork. And yes to getting really excited about normal things. smile

Galena Thu 18-Apr-13 19:51:23

I must stop losing this thread! blush

Congratulations to both sneezecakesmum (and sneezecake, but I can't remember her NC!) and to alwayslate I hope DD one day gets the chance to be a flower girl. smile

Our big news - we've been accepted for SDR down in Bristol. Should be October/November time. She's just (on Tue) had more Botox, because we were keen to ensure she didn't lose any mobility between now and SDR. We were told the waiting list is 8/9 months from when the decision is made - which was end of Jan. It also has to be at least 6 months from Botox, so the timing has worked out really well. We've also found some horse riding for DD to go to - until she's five-ish they don't do lessons as such, but they do foot-led walks around the grounds, 30 minutes for £8. Can't be bad! It's all core-strengthening.

2old2beamum Thu 18-Apr-13 20:52:34

Well done Galena hope all works out well.
Will update you all with DS's progress hopefully in July

Galena Thu 18-Apr-13 20:53:51

Ooooh, I've just found DD some swimming lessons in a warm pool! And it's with someone who knows about CP! Woohoo!

everydayaschoolday Fri 19-Apr-13 20:59:08

Congrats Sneezecake and sneezecakesmum - gorgeous baby photos thanks. And lovely flowergirl news alwayslateforwork. I bet she'll love her 'fairytale' dress - aww...

I haven't been on for a while but I have updates grin. DD2 (nearly 2yo) has just had her diagnosis and apparently there is new terminology, so here goes: DD2 has asymmetric, bilateral spastic CP. So affects both sides but to different degrees (DD2 worse on the right).

We have a kaye walker on order and should arrive next week. Physio and OT really happy with her progress. Getting lots more use out of her right hand now, and she's doing really well with her doidy cup (although is still getting a bit soaked at times!) and attempts at self feeding.

And I have finally gained the courage (being silly, wish I had done this sooner - she was lovely on the phone) to call Bowen therapist today and we have our first appointment in 2 weeks. Can't thank this thread enough for Bowen recommendation - my physio has not heard of it.

Yey us!

everydayaschoolday Fri 19-Apr-13 21:05:01

Hi Galena. Congrats on SDR acceptance and swimming lesson news. How did you find a CP-informed swimming instructor? I'd love to do this for DD2. Just through google? Foot-led horseriding is an excellent idea - hadn't thought of that.

I really need to read up on Scope, they might be able to give me a steer too for all these good ideas to try.

Galena Fri 19-Apr-13 21:22:54

I contacted the local special school with warm pool and asked for details of any private swimming teachers that use their pool. She had her second ride today and loved it again. smile

sneezecakesmum Fri 19-Apr-13 21:24:53

Thanks for the congratulation, I did nothing grin It was all sneezecake aka giddypants! Congrats to alwaysgirl on being a flower girl. thanks

Well done Galena on the SDR fabulous news, nail biting but fabulous!

Interesting about new terminology. Physio at Brainwave has been saying it for years as DGS fits none of the official categories, apart from dyskinetic which just means abnormal tone....which all children with CP have duh!

Please keep us updated with the Bowen therapy though as it sounds interesting. Hope DD2 benefits from the therapy.

DGS (dyskinetic!) is on a trial of benzhexol and only week 3 of increasing doses (still a tiny dose) but his physio today said she noted a distinct improvement in hand function!!! He's not supposed to show anything till 15 weeks according to the research I've done. I thought it was just wishful thinking on my part. It is very little heard of (she hadnt heard of its use) and as theres precious little out there for dyskinetic kids I feel quite evangelical grin She also said she would order a Kidwalk for him smile He started horse riding at the RDA (baby steps there as shock at the horse he sat on (him that is!) not us as we are hard grin) So all in all good here at Sneeze Hall.

thereonthestair Sat 20-Apr-13 07:23:55

Galena, great news on sdr. Keep us posted.

Giddypants and sneezecakes mum congratulations. I can't imagine having another child and even if I could dh can't. So all credit to you.

Everyday I am aware of another child with bilateral cp locally. They had sdr in St. Louis very successfully.

We also do swimming in the local hydro pool, in a normal class but with birthlight who have lots of experience of teaching children with cp (and other sn). The local disabled children's swimming group also use the pool and I keep meaning to get in touch with them too.

Kaffiene Sat 20-Apr-13 23:29:23

Everyday and Sneeze - My DD has had just about every spastic diagnosis going. Quadriplegia, tetra plegia, diplegia, diplegia with some arm involvement, asymetric bilateral and unilateral bilateral and another one something like reverse asymetric diaplegia.

Basically her legs are more affected than her arms, then to confuse people her left leg is more affected than her right. But her right arm is more affected than her left. She also has a very wobbley middle and tends to slouch more to the right. The "experts" are divided as to whether this is due to more or less tone on different sides if her trunk if that makes sense. Ie does she slouch because pulled down on that side or lack of tone?

At the end of the day the diagnosis doesn't affect the treatment... Physio, Physio, Physio smile

Sneeze - has he had an MRI, I might be wrong but I thought a dsykentic diagnosis was given when the basal ganglia is the area/ main area that shows damaged whereas spastic is usually PVL.

There - its annoying me, i know i know who you are but i cant remember ;)

It's ISW here by the way

Dev9aug Sat 20-Apr-13 23:49:24

keffeine so what happens if your MRI comes back clear. ds2's legs are affected mainly and his MRI came back clear. Nobody has told us yet what kind of CP he has.

alwayslateforwork Sat 20-Apr-13 23:59:49

Nah, dd2 was originally spastic quad, and she's basal ganglia damage. She's athetoid, but I guess would be given a fancy new name. (She has full body involvement, but it's worse on the right. But maybe she'd be called dyskinetic too, eh?!)

Dd2 still lists one way. They have to check her for scoliosis etc as it's very marked, but so far her back seems ok. She does have a slight leg length (hip height ;-) ) discrepancy, but this seems to be because of the lean, not as a result of it... (?)!

Galena, how exciting!

Dd2 rides as well - our spring session starts in a couple of weeks. I'm the president of the therapeutic riding association (am not at all horsey - I just organise and let the horsey types do their thang) so busy getting it set up again.

Dev - consultant or neuro can dx based on clinical presentation if they feel they have enough evidence.

alwayslateforwork Sun 21-Apr-13 00:01:12

Sneeze, can you pm some detail or do a linky re the benzhexol? V interesting!

Dev9aug Sun 21-Apr-13 00:04:06

Thanks alwayslateforwork, I guess as keffeiene mentioned the answer to whatever type of CP he has is physio physio, so we will just focus on that. I have spent over a year sorting out therapies/treatments for ds1 who has ASD and now I have finally sorted out the best package for him, its time to focus on ds2.

Apart from this website, is there any place where I can research various therapies etc used for CP?

Kaffiene Sun 21-Apr-13 11:01:04

As far as I know damaged doesn't always show up on an MRI. Some people can have horrific damage and exhibit mild symptoms and vice versa and Always has just disproved my theory!

always you have reminded me to check DDs leg lengths. She did have 0.5cm difference and her calves had different circumferences. Not been checked since SDR.

dev Scope's page is a good starting piont www.scope.org.uk/help-and-information/therapies

Dev9aug Sun 21-Apr-13 11:19:07

Thanks Keffiene.

thereonthestair Sun 21-Apr-13 16:55:17

Hi. Can I ask any of you with older children how potty training went? Ds will sit on a special chair potty ok, but finds it boring. He also says that's because nothing happens when he sits there. My instinct is he is not ready but the nursery are keen to have him join in. I don't care if it is too soon,but worry I may just be being lazy because of everything else we ave going on.

Galena Sun 21-Apr-13 17:47:22

We had a go at training last summer when DD was just over 3. She began to get some idea with wees - if we sat her on the potty every half hour or so. She never asked to go, and would look surprised when she wet herself. She also became very very constipated because she would hold on and hold on until she was having overflow accidents. Horrible.

We pulled right back on potty training and went back into pull ups. We concentrated on sorting out the constipation which we sorted with diet and routine around the New Year.

In Feb (aged 3.10) she was still in pull ups and quite poorly, but suddenly she said 'I need a wee' and went to the potty. The ONLY accident we've had since then is once when she was sitting on the floor playing and didn't have time to get herself up, over to the potty AND knickers down, so she sat on the potty without pulling down. So she weed through her knickers. She wees and poos on the potty without a problem now. And she also uses the toilet for wee, but not for poo yet.

Our paed explained that, because she's got tight muscles, it may well be that her sphincters are also tight, so she has to consciously relax before she can go.

Kaffiene Sun 21-Apr-13 18:26:05

We tried potty training numerous time as she knew what toilets were for and used to ask to go but sit for ages without doing anything. It drove me mental as she used to do it when bored/ during Physio etc. From about 4 she started asking to do No2 on the toilet. Then at 4.5 we got a health field potty chair and it just clicked. Overnight from nappies to being reliably dry. I honestly don't think she could feel it before? Or was too uncomfortable/ scared to relax properly. I think it is quite common in kids with CP to go from nothing to fully trained overnight.

She is still in nappies overnight at 5, sometimes wakes for a pee but most of the time nappy is soaking. Night is different I think, due to a hormone, both DH and I were late in being night trained so not stressing especially as I would have to get up and help her ;)

sneezecakesmum Sun 21-Apr-13 18:46:49

Well done little galena smile A major breakthrough! We are looking at getting a special toilet seat but the issue is going to be to get DGS to the toilet, trousers and trainer pants down while he wobbles, falls, goes rigid, goes floppy shock Not yet with new baby though so when the better weather starts <eye roll> and we have shorts grin

DGS only had damage to his basal ganglia noted (patchy loss of signal) so we never understood or agreed with the SQ dx! He only does athetoid fingers occasionally, no slow uncontrollable writhing dystonic movements, no tremor, no spasticity - so doesnt fit any of the descriptions for CP so maybe he's not got it. grin grin grin He sounds similar to alwayslates DD but different lol!

Alwayslate....Benzhexol (Trihexyphenidyl) is a acetylcholine neurotransmitter blocker. From what I gather the basal ganglia prevents messages to move (damps them down) going to all the other muscles in the body (or some) and leaves the pathway open for the chosen movement to be made eg raising one arm while sitting. DGS would arch back and topple trying to do this. This is the research I read
www.sepeap.org/archivos/pdf/11608.pdf

It seems a very safe drug and maybe???

survivingspring Sun 21-Apr-13 20:21:17

Hi again all and any newbies! Haven't checked this for a while..

WRT potty training my dd followed similar pattern to Galena's and went from nappies to fully trained by day very fast when she was 3 yrs and at night from about 4.5 yrs.

We still, at nearly 6 can't crack doing a poo in the toilet - we still have to use a nappy but she just can't let go into the loo. Incontinence service says not to worry but it does make life difficult!

Interested in new CP terminology as dd has never fitted one particular description either. Mostly low toned especially trunk but athetoid fingers like sneeze's dgs!

sneezecakesmum Mon 22-Apr-13 11:11:08

Hi. In a rush so just to say look into the medication. no age restrictions and even if it just gives a small amount of improvement to fine motor its worth it. minimal side effects so i think its a safe med and there is b all out there for dyskinetic children. We are bowled over by the improvement - not massive at the mo but noticeable smile

alwayslateforwork Mon 22-Apr-13 14:28:51

Mm interesting. Will ask next time we see consultant.

I second scope by the way. As the main cp charity, it was always my go-to site when dd2 was little. They also have great newsletters and info for early years, and run workshops and seminars for parents and early years practitioners about all sorts of cp related stuff. Their forum can be a bit quiet - I haven't been on there for ages, but I like it because as well as having an early years board, you can also have a look around at things that might impact later - people talking about their work experiences with cp, aging, driving, whatever. But do sign up for their early years e-mails.

Dd2 toilet trained practically overnight. She was the earliest by years of my three, which was frankly amazing, given that we were expecting it to be either extraordinarily hard or impossible. We had been warned that it was possible she would be doubly incontinent. You just never know until you give it a go.

We had a toilet seat with a full chest harness as well, but after a year or so of us having to hold her in place, she could manage with just a toilet surround, grab rails (and obv a smaller toilet seat). Speak to your OT about toileting equipment, and make sure you have everything you could possibly need before you start!

She doesn't do classic athetoid writhing, but has athetoid fingers, toes, and occasional facial stuff.

choggers Thu 25-Apr-13 16:45:08

Hello
i was wondering if anyone could offer some support and advise really, is 7 months old was diginoised with CP all four limbs spastric, this was due to meningtis at day 3 of life and caused a bleed in the brain due to delay in being detected. i have looked at a few forums and i feel like everyone knows so much more about treatments avaible harry is currently haven physio i thought SDR would mabey somthing that would help him but from what i have read as he is all four limbs and due to him haven had meningitis they wont except him but again i am at a lose as to why? im just struggleing with know haven the answers to what is best for myson! is this just as i am new to this or is there somthing i am missing, a few things i have read have said dont just stick to what the NHS is giving you........but where else can i go?

mum at a bit of a loss xxx

thereonthestair Fri 26-Apr-13 07:35:19

Hello choggers. Welcome.

7 months is still really little. At that stage physio, physio and physio can make a lot of difference. As for sdr where 4 limbs are affected it may not be appropriate, but again it is probably too soon to say. A lot will depend on how strong your ds core is, does he eventually get up and walk (including with a walker). Even if he does sdr may not be suitable but even if sdr is appropriate it may well not be a magic wand. I don't think it will be for ds, although I am looking at it but ds won't be suitable for another 3 plus years I don't think.

As for more information, there's here. There are lots of us here with lots of different diagnoses and children of different ages, but also do look at scope and their forums. Ask you paed loads of questions.

Finally and this is not for everyone, nor is it necessarily worth pursuing but you may want to take some legal advice from a specialist clinical negligence solicitor. You may not have a claim, and even if you do it is not for everyone to follow it up ( personally I wouldn't ) but having a child with cp is expensive. You should also apply for dla.

Galena Fri 26-Apr-13 18:51:07

Welcome choggers. I hadn't heard about SDR until DD was at least 2 and a half. I heard about it from online sources and weighed it up. I don't know how they decide who is suitable and who isn't. However, I do know that diagnoses often evolve - someone may start with a diagnosis of spastic diplegia (just legs affected) and then be told, well, actually it's hemiplegia (one side affected) or quadriplegia (4 limbs affected) and so on. So, at this stage, physio is very very important, and other things may become appropriate as it becomes obvious how the CP affects him...

infamouspoo Fri 26-Apr-13 19:07:26

wondering whether Id fit in. ds is 10 with severe spastic quad. No movement at all or speech and he is tube fed, still in pads. He uses a head switch with a VOCA to communicate and drives a powerchair using chin switches. In 2 weeks he's having the intrathecal baclofen pump fitted so I'm a nervous wreck. I dont know anyone in rl who has a child like him - so physically impaired but at mainstream school. He also has had pretty severe epilepsy but we currently have that under control <touches wood etc>.
Our main issue is sleep. He wakes hourly either through discomfort (both hips are dislocated) or he stops breathing or he's just a pain in the behind. Any tips?

Galena Fri 26-Apr-13 19:23:29

Hi infamous and welcome. Sorry, I can't help much with direct experience, but hopefully the baclofen will help a bit.

Have you heard of Special Kids in the UK - it's a forum I post on... There are quite a few severely affected children on there - some of whom are at mainstream school. A lovely bunch of people too!

infamouspoo Fri 26-Apr-13 19:32:03

I have. I must rejoin as I lost my password blush but was hoping for support on here too.

thereonthestair Fri 26-Apr-13 20:37:45

Welcome. This thread is for everyone severe, or mild, old or young. I think we all feel out of place sometimes. My ds is probably moderate rather than sever but there are others who will have more direct experience of the issues you face. And even if none of us have the same direct experience we are here to rant moan and support everyone.

sneezecakesmum Sat 27-Apr-13 21:11:54

I tried to get on SKIUK a couple of times, got paypal verified etc, but gave up as it just doesnt seem to like me! Everyone is welcome here smile I know of a boy who has a baclofen pump and it is excellent for him. I agree very scary though. Everyone has experience of something and if all that information is pooled there may be some answers for someone at some time. Its been my experience for sure smile

hanbee Sat 27-Apr-13 21:26:19

Hello all, I wonder if I can join your thread please? I've been on the sn board for a while, mostly on the bumpy path to diagnosis thread.

DS1 got his diagnosis on Friday of periventricular leukomalacia leading to cp. He is 4.5 and it's been a long old fight to get an MRI. He is unusual because he wasn't prem or low birth weight. He has motor planning and control difficulties but no stiffness, significant learning disability and a severe expressive language disorder.

We're still getting used to his diagnosis, relieved he doesn't have something degenerative or genetically inherited but still feeling a bit sad about it all. It would be great to have contact with those more knowledgeable and experienced.

Thanks

sneezecakesmum Sun 28-Apr-13 16:49:23

welcome hanbee smile I do hope your DS has been getting all the services, physio, OT, SALT etc despite the lack of diagnosis? My DGS is the same age, but a different presentation of CP, but thats what you find, children all present with different abilities and disabilities. Its all very confusing. I guess its a relief to know whats going on at last, 4.5 years is a long time to be unsure and to wait! There are a lot of people here who have a very wide knowledge of CP, and you will find that each little snippet adds to a bigger picture of understanding your child smile

2old2beamum Sun 28-Apr-13 17:59:22

choggers my DS now 14 is going for SDR on 14th June. He is a post pneumococcal meningitis (8months old)
However it is not for mobility it is to enable him to sit without spasming and also to help with his "cares"

Just as a point re toilet training DS was nearly toilet trained @ 7 and signing he needed "to go" but as he could only sit on a special toilet chair it was felt we were giving him mixed messages Use toilet at home and school but do it in your pad if we are out confused As he is deafblind as well as CP we sadly abandoned the process.
But it did prove our LOs are capable.

choggers Sun 28-Apr-13 18:48:24

oldbeamum
oh im really pleased that DS can have the SDR i was aware it wasnt always to enable them to walk, i was just hopen it would be somthing that would be a possiblity to help him in some way but was so confussed when i seen it wouldnt be suitable for it because of the meningtis. did your DS have Group strep b? sorry im really interested as never meet anyone who has CP due to group strep b.

Galena
thanks i wasnt aware that they might change his dignosis as i have noticed that my DS right hand a lot better than his left he can use his right quite well for him.

will say i already feel better just by being invovled in this group. thanks guys smile

fadhsamum Sun 28-Apr-13 19:08:09

Hello All.

Finally decided to take a leap in to this forum, having been lingering for a little bit..thanks to Galena who pointed it out to me.

My daughter has very recently been diagnosed with CP, and though it is quite mild, I have struggled to come to terms with it-not only with the diagnosis but the feeling of alienation following it. It has been an uphill struggle just to get a diagnosis, and now that we do, I feel at a loss a what to do next. But this thread has been invaluable. Following Galena's lead, I've managed to arrange swimming lessons in a hydrotherapy pool for her, and have been to Bobath to have her assessed. The NHS have offered us no regular Physio support, though they have taught us a few stretches that they have asked us to do with her.The pt said she is 'too young' for intensive therapy.

I've read so much about SDR, but just wandered if anybody has advice on suitability? My daughter's CP affects her right leg, where she has moderately increased tone resulting in an ungainly gait and much tripping. Her recent MRI (which I had to literally kick and scream for) suggests that there are signalling problems with both legs, thought the left seems fine. When I spoke to her consultant about SDR(she's still seeing her neonatal consultant) he said he'd speak to a colleague about it as he hasn't heard of it but he thought we should 'focus on what she can do rather than what she can't'-whatever that means. Her consultant is lovely, but I know he thinks I'm neurotic mum (I know I am) but I just want to do my best for her. Does anyone know whether her condition is too mild for SDR?

infamouspoo Sun 28-Apr-13 19:22:25

we tried to get SDR even though ds would never walk or even sit because of the horrendous stiffness and hip dislocation and Mr Aquilina was interested in doing it as he thinks it would benefit severe spasticity as well but no-one would fund it unless there was a 'walking' outcome. With a 30K price tag we couldnt do it ourselves which is why we are going for the intrathecal pump. Should SDR ever start to be used for spasticity we will definately look into it again. I just hate the idea of a machine that can go wrong IYKWIM

2old2beamum Sun 28-Apr-13 20:00:21

infamouspoo I am completely baffled as to your PCT's attitude. DS sounds just like your DS except he can only communicate using Caanan Barrie method. Also horrible seizures I HATE THEM
The neurosurgeon said DS would not be a suitable candidate for a Baclofen Pump as he has a jejunal tube and a cochlea implant which could be a source of infection with more foriegn bits in his body. But he definately will not walk Just a thought both my DC's have got Continuing Health Care Plans this may have helped his cause. Good luck

choggers Despite being a midwife and a very old paediatric nurse I am not sure about Strep B and CP, DS 's pneumococcal meningitis is known to be pretty evil (I am not a drama queen BTW) but any meningitis can be quite catastrophic in some cases
Take care all

Galena Sun 28-Apr-13 20:24:06

I have found a lot of health care professionals are wary of SDR because it is still relatively 'new' in the UK (In fact, in its basic form it was used in Victorian times, but with no 'selectivity' in the nerves cut).

However, our (new - old one retired) paediatrician was delighted that we had chosen to go to Bristol rather than the US. She felt that, because in the UK they are still trying to prove its effectiveness, they would only select children for which it would have a good outcome. Unfortunately, it's not funded so we had to raise silly money for it. sad

Galena Sun 28-Apr-13 20:26:07

Oh, and fadhsamum, I'm glad I could give you some support. Sounds like you're doing just great at the moment!

infamouspoo Sun 28-Apr-13 20:40:06

Our PCT will only fund for SDR if there is a walking outcome. Its all about money. So we had a great surgeon willing to do it (he's at GOSH now) who said it would be of benefit. But no, pump it is with its potential for infections and instant death (he has a G-tube alrday) or find 30K plus 20K for afterwards physio. When we saw the surgeon there was a family there whose son used to be able to walk with a frame and he lost his walking due to horrendous pain and spasms and they had to fund SDR themselves even though their son used to be able to walk with his CP (mild/moderate. The lad can talk and use his hands and stuff and sit). It was the fact they also had to fund the aftercare that shocked me. I saw them when we had the pump trial and their lad was walking after the SDR. That PCT should be ashamed and should be funding it. They will now save a fortune in equipment.
Obviously ds would never walk but how much are pumps? refill appointments. Emergency trips to hospital every time he seems 'odd' in case it might have gone wrong. Changing the battery every 3 years etc etc?

infamouspoo Sun 28-Apr-13 20:41:46

ds's paediatrician told me 'off record' he thinks its because ds isnt expected to live very long so is seen as a waste of money. He said you wouldnt believe the discussions they have regarding children.

2old2beamum Sun 28-Apr-13 22:09:07

Every post I read about SDR horrifies me. Do they not value our children. My son died 10 years ago and was on TPN for 5 years and his death was no surprise never was he refused treatment.

infamouspoo Mon 29-Apr-13 10:51:45

whats TPN?

thereonthestair Mon 29-Apr-13 16:21:02

Hello all. My paed is probably a bit wary of SDR. Not saying no, but saying that the optimum time will be when DS is 6-7 rather than 4 ish. She is however sayign that when it is the optimum time the NHS will fund. Not sure if I believe her though but it seems or NHS will fund.

I have to also say I am not yet sure it is right for us either. Partly because it is new, and the long term studies while encouraging are not as encouraging as I would like, but also because I feel that so much can still change for DS that i would like the stability in what we have before going ahead with SDR. I am sure we would get a walking outcome with SDR, but if I can get one without so much the better.

DS also has difficulties with his hamstrings/hips rather than calves so he is not like most other SDR candidates and it seems as if there is little problem with his feet (thanks to hypermobility) but he just can't extend the hips.

As for focus on what you can do rather than what you can't - well how is anyone ever going to learn to do anything with that attitude. We all need to learn how to do things. Our children are no different in that respect. I accept of course that DS will never run the marathon. I do not accept he may never run (although it is highly unlikely). As for too young for intensive therapy be very wary of that. It is harder to do intensive therapy with little ones, but it is not impossible. It also depends on what counts as intensive, but the more you do now the better if the little one will tolerate it, it is also easier to motivate them when they are younger (I found).

On a more negative note this weekend I asked DS what was wrong with him when he got upset to which the answer was "I can't walk" that broke my heart depsite the well not everyone can do everything answer and we are all good at different things answer I gave to him. I knew there would be a time, I suppose i just hoped I would get a bit longer.

infamouspoo Mon 29-Apr-13 16:44:51

ds went through a period at 7/8 when he realised that he was 'different'. Despite being very severe - its like he has locked in syndrome - and partially sighted, he hadnt noticed until then. Suddenly he didnt want to hear the word 'disabled' in books or films. Didnt want to wear splints, do therapies and got very depressed. I think he realised that despite constant hospital he was never going to get 'better'. He's in mainstream school and still gets down patches as he has the worst CP in the school (the other kids can use their hands or talk) but counselling has really helped as well as meeing adults who communicate using VOCAS who are at university and living independant lives with PA's to help.. He still wants to play football so the school rigged up a leafblower to use with his headswitch and he blows a giant inflatable ball in the game.
I guess we'll get another bad patch when he's a teenager and notices girls. He had botox into his salivary glands to stop the drooling and that has helped his confidence as he was reallly self conscious about that and we have put insults on his VOCA so he can tell people to bog off if they are staring grin but it is heart breaking. I'd settle for some speech and the use of one arm to be honest. Oh, and the ability to watch TV. He gets very very bored. At least he likes music although I cant say his brothers introducing him to Michael Jackson has been my idea of fun...

thereonthestair Mon 29-Apr-13 17:11:34

I love the idea of an inflatable ball. It sounds as if the school are trying to be inclusive. I also have never heard of a mainstream school with more than 1 child with CP. I do hate the idea that any of us "settle" mind. Which is what makes me so angry about the whole SDR debate, and the fact that a child is too little for intensive therapy.I know one or two adults fully included in mainstream life as adults with wheelchairs, voiceboxes etc, and try to see it as hope that the world is changing. Sorry not being very good with words here.

2old2beamum Mon 29-Apr-13 17:19:57

infamouspoo what a spirited lad you have I would love it . Like you I would settle for just a little more maybe to hear, see and communicate.At least my DC does not know he is different
We just have to keep going.

BTW you asked what was TPN intravenous feeding (total pareteral nutrician) cost £150/night 7days a week and they deny kids SDR.
Sorry I do go on a bit!!

sneezecakesmum Wed 01-May-13 18:54:26

Infamouspoo. I am so pleased to hear that your DS is managing in mainstream. DGS is due to start in September when he is 5 with a 1-1. He can use his left hand and we think he has potential to improve but his lack of speech has really worried me, but hearing your DS is managing is so encouraging.

Don't get me started on group strep b!!! It's f##### preventable if only the tight arsed NHS would fund it! It's not even expensive and it would save hundreds of babies from this crippling disease. I paid for my DD to have it with both her pregnancies after reading what a horrible disease it causes. She still has a disabled child but for something entirely unpredictable. It's infuriating sad

choggers Thu 02-May-13 17:59:52

sneezecakesmum i wasnt aware that strep b was preventable, mind it frustating that they dont test for it in the mother in this country unless there is reason to! yet they do in some poorer countrys that i have recently found out. we have taken leagl advise on it as i have been told have a child with CP can be very expensive, again somthing that is new to me but so far everything harry has needed with have been given bt the NHS so what sorts of things is it that we will need to pay for? (again one of these things i dont understand)

also not such a nice question to ask but its somthing thats puzzled me now for a little while, i was told by the doctors that CP dont effect life span but everything i read says sever CP does and we have been told that he will proberly be server? sorry to ask such a morbid question but i dont really understand.

one last thing what does DS mean and DD?

sneezecakesmum Sat 04-May-13 10:47:06

Dd is darling daughter and DS darling son. I have a DGS (grandson). [Smile] Just abbreviations really and annonimity I guess.

I just came across group strep b from a newspaper article and because I am neurotic cautious paid for it. Midwives should be able to give info on private tests which cost around £30 if the NHS won't provide it free so you get informed choice.

Don't give up hope that things may improve. There are many parents given poor outcomes for their children who prove everyone wrong and do pretty well! And don forget CP evolves over the first 2 years and children who are stiff as babies can become quite floppy. DGS was diagnosed spastic quad and he is now more athetoid, so no coordination, or balance and fluctuating tone everywhere. Lifespan for severely affected individuals are sometimes less but it's because of other problems like pneumonia, infections, epilepsy rather than the cp as the brain injury is pretty stable.

choggers Sat 04-May-13 15:27:39

Ooow that makes perfect sense lol so I have a ds

I wish I knew this wen I was pregnant I think they should tell u this! Would have made such a different!

I thought this was the case well so far my ds hasn't shown signs of epilispy I know this can come at any time but going to keep praying. Well I'm hoping he does prove everyone wrong!he is that sort of kid that with all this going on he still manages to smile on a daily basis, just scared with no knowing what is coming our way find this a hard pill to swallow just have to take each day as it comes.

How old is your dgs?

X

neverlateforwork Sat 04-May-13 15:48:30

Hi Choggers. Cp in and of itself doesn't reduce life expectancy, but it can make co-morbids harder to deal with/ shake off - lots of kids with cp have respiratory issues, for example, or higher chance of aspiration leading to pneumonia. So, for example, dd2 used to aspirate frequently and we ended up with a standing prescription for anti-biotics to clear chest infections, that we could just access when we realised she was starting to come down down with one (it got so that we would know it was going to happen - choking episode, three days, chest infection lol). So, usually, it's the 'other' stuff that reduces life expectancy. There are some interesting things about cp and age ing on the scope site, and it's also interesting to read their adult forums and hear adults discussing work experiences, and how the cp affects them differently as they get older etc.

Hanbee - dd1 was full term and 9lbs. grin she looked like a complete fraud in scbu, but the first couple of weeks were really touch and go. I didn't get to hold her until she was over two weeks old as movement caused the saliva to pool in her throat and block her airway. Poor wee mouse. She skis black runs now and can throw a major strop. grin

2old2beamum Sat 04-May-13 16:34:38

choggers Agree with what the others say about CP and morbidity I feel chest infections and epilepsy are the biggest threat to them.

BTW sometimes old sneeze and I may put OF which is old fart (husbands) grin

sneezecakesmum Sat 04-May-13 21:16:12

OF is an unofficial abbreviation lol grin

neverlateforwork Sun 05-May-13 15:24:18

Choggers, ds is still really tiny, too. They won't want to be making any predictions about ability for him yet. At 7 mos we had been told dd2 would be unable to walk or talk, and she had a spastic quad dx, too. Her clinical prevention changed so much over the next three/ four years, that they were forced to drop the spastic quad dx. She has low tone now. She still has cp, but either through normal development or one heck of a lot of hard work in terms of physio, OT and speech therapy, (probably both lol) she has exceeded everyone's expectations.

The fact that he is smiling is great news! Dd2 smiled for the first time at six months, and they were the hardest six months of my life! Where is he with any milestones? They won't even be considering SDR at this stage, as they just won't know whether he will need it/ be a candidate for another few years.

The first two years are reaaaaallly hard. Be kind to yourself x

choggers Mon 06-May-13 21:51:24

Thanks ladies i already feel better about so many things especially as cant see pead till july as shes too busy!

i was thinking it must be somthing that can come a long with CP!
thanks sneezcake i like OF might have to borrow that one lol!

neverlateforwork that must have been so hard Dd2 not smiling some days that what keep me going DS it one of the smilest children, what is your Dd able to do now then and how old is she? if you dont mind me asking? DS has physio once every week to two weeks!

DS has never had a problem with breathing to date! hes been a bit wheeze from time to time with a cold but hes ok!

what sorts of things are we expected to pay for just so i have some ideas i am trying to keep putting money way just incase things come up but as i dont really know what he might need and everything the physio and ot says he needs we get it given to us on loan from the NHS?

once again thanks you guys have put so much in prespective! sleeping better already smile

neverlateforwork Tue 07-May-13 03:16:42

Oh goodness, I don't mind. I'm forever blathering on about her grin. I was madwomanintheattic earlier in the thread, not sure if you've read the whole thing. She's 9 1/2 now, mainstream school, goes to girl guides, takes swimming lessons, ballet lessons, skis (wants to be in the Paralympics) and is desperately trying to teach herself to skateboard. She also wants to learn to rock climb. She taught herself to read before she could speak. grin

She's also had years of physio, OT, slt, portage, sn nursery placement, and was statemented for communication and physical issues. At the beginning we had physio twice a week. Once school started, she had therapy in six week blocks, with six months or so in between blocks. She had lots of feeding issues to start with (she was born with no suck or gag reflex) and the first couple of years were pretty grim. She was tube fed to start with, and we had a rocky time teaching her to suck feed, but she got there eventually. She still has the occasional swallowing/ choking incident, but thankfully they are fairly few and far between now.

Have you applied for DLA? Ours has mostly gone on specialist equipment - for example we bought a whole bunch of specialist cutlery, bowls that can be used one handed, several trikes as she got bigger (and still growing lol), and a few alternative therapies along the way (we tried cranial osteopathy and later a chiropractor, briefly a homeopath (for drooling - it didn't work, and we went with joy-rides as she had a sensitivity to hyoscine patches) and a few other random things. It also helped us pay the mortgage for quite a while as I was unable to work ft due to constant appointments. People also use them for Lycra suits, and other things that can be recommended by the pct, but not funded... Like a decent walking frame, standing frame, etc. usually these things are provided, but sometimes there are supply issues. Also sn buggies/ three wheelers (often WCS will provide only a wheelchair OR a buggy, when really we could do with all of the above).

There's no shortage of things to spend money on - take a trip to 'kidz north' or 'kidz south'... And you are guaranteed to find a billion things that just might help with x,y or z... It can be overwhelming.

Dd2 is just so ordinary in my eyes now that I sometimes wonder whether other people realise... She was selling girl guide cookies in a store last week, and was working out the change, and handing it to customers, and in my head she was exactly the same as every other girl guide there. It was only when one of the customers said to her 'I'm going to share these with my work colleagues on Monday, and it's really fitting that you sold them to me, as I work in inclusive education' that I realised it must be bloody obvious to everyone else. grin methinks I've become somewhat blind to her disability!!

Ds sounds like he's doing very well. It's good to know you're not alone x

Jokat Tue 07-May-13 22:34:00

Oh, here you all are! The old thread is still on my watch list and I've found it so odd that noone has had anything else to say since late January! Only just realized it was full grin
My dd1 is now 4.5 years old and doing great. She was 11 weeks prem and diagnosed with spastic diplegia at 15 months actual age. She took her first steps at 22 months. We had a standing frame for a while, but never had need for a walker. She wears ankle splints at pre-school, but as she is faster and more able in terms of range of movement, we keep them off the rest of the time.
Does anyone else have a cp child who walks independently and have taken them skiing?
Our physio suggested to take her to Milton Keanes (the snow dome) to have her assessed there before taking her to a resort next winter. But that's quite a long way to travel (we are just south of London) and I was hoping someone in a simliar situation could tell me about their experience of introducing their child to skis, how much adaptation they needed etc.

neverlateforwork Wed 08-May-13 00:16:17

Yep.

Dd2 is in an adaptive ski program and skis every weekend in the winter. She walks independently (was very late - finally got rid of the walker in between yr r and 1) and skis with no adaptive equipment. We used a toggle on the tips of her skis when she started, to prevent crossing etc. she started about the same as your dd1.

I know loads of kids (and adults) with disabilities who ski - some with outriggers, some with sit skis, and some with no adaptive equipment. I'm also involved with an adaptive sports program. grin

We didn't ever bother with snow dome stuff, tbh. We found an adaptive instructor in our resort of choice and went for it. Obviously we started with some shorter lessons and the rest of the time in daycare (building up stamina takes time). We also avoided poles like the plague until she had mastered her feet...

She is 9, and got her black runner sticker this season. grin She now skis down steeper stuff than I do... In fact she was skiing with the trainer for the Paralympic team on Saturday (just because he happened to be there with our disabled skiing group).

If you fancy heading to the Canadian Rockies, (and have a fortune to spare) I know just the place. grin <hard sell> I'm not on commission, honest. I just know how great it has been for dd2.

Let me know if you have specific questions.

Jokat Wed 08-May-13 22:25:50

Wow never, that's very encouraging to hear!
Did your dd ever use a spreader bar (to prevent hip damage should she slide down backwards) along with the toggle at the front?
The Canadian Rockies sound very enticing grin but we won't venture that far for now, with both dds in tow. We will go to a resort just outside of Kitzbuhel in Austria in Feb next year. I will try and find out if there is an adaptive skiing instructor there, but dh is quite good at teaching people ski (and very patient etc), so he's more than happy to teach her himself this first time. I'm just worried that he won't be able to recognise her limits, as it is so hard to tell what her legs will physically be able to do and what they won't. Maybe I'm overthinking it?!?

pofacedlemonsucker Thu 09-May-13 14:09:00

It'll be great - just stick to short bursts to start with. Fatigue was dd2's biggest problem. No, she didn't use a spreader bar as we wanted her to be able to control the skis herself to a larger extent, just a toggle at the tip.

It's wall to wall adaptive instructors here as we run a 10 week program every winter. grin

It was slooooow to start with, but she loves it. Have fun and let me know if you need anything!

pofacedlemonsucker Thu 09-May-13 14:09:31

(Oops, sorry, nc. Tis madwoman/ always/ never) blush

Jokat Thu 09-May-13 15:36:12

Thank you very much for your advice/support alwaysmadneverpofacedlemonsucker grin What I would give to go skiing every winter weekend! Whistler has been my absolutely most favourite resort so far, but it's just too far to go from London with two little ones... But we'll go with a large family group, incl. the kids' grandparents, so it should be grand and lots of play time off skis as well!
How has your dd coped with lifts at the beginning?

choggers Thu 09-May-13 20:53:18

oh you DD2 sounds amazing! I cant even being to image DS2 being able to do anything like that as much as he would look silly in a tutu! smile

I have had a look at that kidz south thank you for that they have got an show in reading which is right near us! so we are going to attend to give us some idea! did you get your physio from the NHS? as we haven't been offered it twice a week! I think he would benefit from that! I do it at home with him on a daily basis that is what they have shown me to do with him! how did you find out about the other therapy's?

it amazes me what you children can do sking is something I would never think of doing with harry its just nice to hear that there is life after CP as everyone seems to know how to carry on so well! I get scared at the thought of doing a food shop with the DS's lol

pofacedlemonsucker Fri 10-May-13 00:40:30

Choggers, at 7mos we were still under the impression that dd2 was unlikely to walk or talk. He has a long way to go yet, and as he grows and develops I bet he amazes you with what he can do. smile

Yup, NHS physio. We were living in Scotland at the time - she spent 5 weeks in scbu (first two on O2) and we were discharged with a full therapy team. She had slt from birth, which still makes me laugh to this day, but the slt literally kept me sane for the first two years. It wasn't all roses. (And I ended up with a breakdown after 6 years because I hadn't dealt with the whole thing properly at the time - hence my frequent advice to everyone to be nice to yourself and ask for help!!)

Ds1 did ballet - no tutus in sight. It's great training for martial arts, and brilliant as a physio add-on for kids with cp. great for their balance. Dd2 started ballet before she could stand unaided - she had a chair to hold on to for each lesson. grin

Jokat - lifts have been a bit of a fuss, if I'm honest. She's tall enough to cope now, but previously chairlifts have involved her loading with someone taller so they can do the one-armed heft to get her bum on the seat (I'm too short and found the whole thing terrifying, dh is 6'2" with long arms, so could lift her up and on with no bother). If you ask them to slow the lifts down whilst you get organised they will - they are usually very good. And ask them to call ahead to the offload so that they will slow it whilst you get off as well - or you can make the international flapping your arms sign for 'slow down!!!' To the liftie at the top. grin

Dh still goes on t-bars with her in front - we don't think she's quite got the dexterity to organised the offload, so he loads with her in front of him, and essentially pushes her up the hill with her skis in between his.

She can load chairlifts on her own now - it's just a matter of waiting for her bum to be high enough off the ground/ seat!!

Choggers - why are you doing shops if it's stressful? Tesco direct is your friend. Dd2 screamed pretty much solidly for the first year or two - including in stores, and eventually when she became verbal around three or four, she told us the strip lights hurt her eyes. A quick pair of sunnies fixed that. <sigh> sometimes it's guesswork. It took longer than that for us to be able to use washrooms with hand dryers or magic flushing toilets though...

Have fun at kidz south x

millenium2000 Sat 11-May-13 12:39:17

My daughter was born prematurely at 31 weeks. At 18 months old she was diagnosed with spastic diplegia

millenium2000 Sat 11-May-13 12:42:30

I wonder if anybody can help me find a website. I found it when DD was first diagnosed but she didn't require anything from it at the time. It was for products that would help her, but didn't actually look like disability aids. They were aimed at children.

pofacedlemonsucker Sat 11-May-13 13:43:47

Special direct?

One of the manufacturers websites? Like r82?

You'd probably be better off going to kidz north, or kidz south and browsing the stands, tbh.

We have usually manged to buy things via local disability supply stores (not the bigger stuff like trikes, bviously, for that we go to specialist physio led demos) - they have a raft of catalogue s as they don't usually carry too much paediatric stuff, but they are fine for cutlery/ bowls/ button hookers etc.

What sort of thing were you needing? Sometimes it's best to discuss with your therapy team if you are looking for seating etc, as they know the products. You can then read around the subject and post on forums if you are looking for something but need ideas?

Fledglings (I think it's still around) used to have reasonable kids stuff (clothing and the like, too, including school uniform).

There are so many, tbh.

dev9aug Sat 11-May-13 18:16:14

I am feeling quite overwhelmed at the moment, How the hell did you fit all the therapy in a day. There just seem to be not enough hours to do the physio programme, let alone anything else in the day... How do you all make sure that everything gets done?

Do you have set times to do the therapy or do you just do as much as you can?

Btw, Galena saw the video of your daughter on the other thread, very impressed with her work, she just seemed to get better as the video went on... smile

dev9aug Sat 11-May-13 18:19:04

sorry that sounded quite downbeat, I am not. Very pleased with his progress so far. But I would like to know your tips to make sure we are getting the best use out of our time.

sneezecakesmum Sat 11-May-13 21:14:56

I think re therapy time, you can only do what you can do! I wish we could make extra hours in the day to get extras in because we have to go at a 4 year olds pace and he will only tolerate so many sit-stand-squats before he rebels! We have a brainwave programme which we follow most afternoons as he is in nursery picking up bugs interacting there and they do hand work with him, so afternoons is walking, sitting, kneeling etc. something has to give and unfortunately speech and books have taken a back seat, which is heartbreaking as he loves books so much, but the Kidwalk walker has been so good for him physically we have concentrated our efforts there. He's come down with another bug today so he's having a few days off smile

dev9aug Sat 11-May-13 21:37:29

Thanks sneezecakesmum, We have a programme from a physio so we are trying to follow that but it just seems there are not enough hours in the day.

dev9aug Sat 11-May-13 23:26:06

Sneezecakesmum I have just seen a YouTube video of the kid walk, that's a brilliant piece of kit.

sneezecakesmum Sun 12-May-13 19:13:09

Kidwalk is brilliant. Its the first time DGS has shown any interest in walking and lifting his legs up reciprocally. yesterday he was sitting and he pulled his leg up and undid his shoelace grin Would def recommend the kidwalk. The rifton gait trainer was ok but this is so much better. He will be getting one eventually once the rep has measured him up. There are never enough hours in the day!

dev9aug Sun 12-May-13 20:33:19

Too right. I am going to note these down and see if I can pester the physio to let us try some of the equipment once he is a bit bigger. He is got a kaye walker 1/2 size and even that is too big for him..blush

Kaffiene Sun 12-May-13 21:28:31

Dev - there are never enough hours of the day! But I find breaking up the daily exercises into sneaky little chunks easiest. Soon it's just routine and you forget how much you do. For example we do bridges and sit ups while getting dressed in the morning. Sit to stands while getting into pjs .. It's amazing how forgetful mummy is, stand up to pull down your trousers, sit down ooops forgot to pull them off, up you go again. Side stepping along the side of the bath before getting in. It's exhausting mentally but much easier than a set Physio time for us. I have a check sheet which I try and remember to fill in, means I can see what we have missed out a lot one week so can try and prioritise for the next. But it is a long slog sometimes you just need to take a week off and have fun as a family x

choggers Mon 13-May-13 21:02:06

Dev I agree with you I found it really hard at first to get all these physio things in I often found myself thinking in physio sessions when being told do this three times a day or as many times as you can how, how am I going to fit that in as well as everything else are you insane! lol but I do it in little bits when we get dressed after bath time and I do what I can. I just tell myself as long as I try my hardest to get what I can in them I cant be too hard on myself!

as for my earlier comment about going shopping I don't generally take the boys food shopping with me unless the other half come with we are really lucky to be surrounded by family who are all willing to help even with the simplest tasks such as food shopping!

is there a generally age at which they will try to start getting DS2 to walk as I know normal rules don't apply but I just wondered if its like when they get to 3 or something?

dev9aug Mon 13-May-13 23:16:58

Thanks kaffiene, I have made a check list to make sure that all his daily activities are ticked off. We are also doing ABA as he is at risk of ASD so we are going to try a lot of the activities in that as well. He can stand on his own for a few seconds, but just dives forward instead of taking any steps. According to the physio, he is not developing the balance required to walk independently because he is afraid so we are going to work on his confidence.

Choggers Our physic started him on assisted walking holding hands, holding furtinute, holding brick trolleys etc as soon as he was able to bear weight on his legs. Mind you that was a private physio, I gave up on the NHS one because he would spend about 30 mins of the 45 min session screaming and crying so don't know what they would have done. I did however managed to get a Kaye walker for him couple of months ago after much faffing on their part, so the answer is probably as early as possible.

pofacedlemonsucker Tue 14-May-13 14:28:48

Choggers, we had a standing frame on dd2's first birthday, to enable weight bearing.

She had her first Kaye walker some time before 2 - I have an adorable pic of her in her birthday clothes (real ones not birthday suit lol) with streamers from a party popper round her neck, walking around the living room with her Kaye. grin she was determined, if utterly crap on the balance front. It was nowt to do with confidence, she just couldn't balance - she desperately wanted to.

They took it away when she was three for a year, to see if it would enable her to walk independently. Nope. And then she had an r82 croc for a year or two - finally gave it up in between yr r and yr 1.

Normal rules don't apply, but you do follow the child's lead.

sneezecakesmum Wed 15-May-13 21:04:30

We got an ancient rifton gait trainer off ebay when DGS was 2 ish and he took to it like a duck to water. Replaced at 3 by a sparkly size 2 rifton gait trainer and and he hated it. Every step was an effort confused

Then the rep and physio left this clapped out old version Kidwalk with a velcro chest harness (he needs the rigid harness so he is a bit floppy up top!) no leg guides to stop scissoring (so we improvised with webbing straps!) and he storms away in it! He also has zero balance and coordination (well maybe a little) and the Kidwalk encourages the all important weight shifting, which helps teach balance, while the gait trainer just holds them in a non dynamic upright position. Definitely trial a few before deciding as they are stuck with the walker for ages. The Kidwalk is more expensive though, but this didnt present a problem.

pofacedlemonsucker Thu 16-May-13 00:14:42

Yy, really important to trial.

Dd2 got to the point that a Kaye was unsafe - she wanted to be able to move in all directions at will, and the Kaye wasn't agile enough - she would take it over backwards and sideways, and it was just dangerous. But she didn't have any standing balance, and so needed something to provide it. For her, the croc was right, but all kids have different needs.

choggers Thu 16-May-13 17:53:01

hiya

I was wondering if anyone else has struggled when weaning! DS2 has been on smooth food for a little while and they want to progress him but finding it hard as he generally ends up with DS2 being hysterical and I end up feeling horrific don't know if im doing right for wrong! hes not always great with smooth food, hes better when hes hungry but I don't think he gets hungry that often and now iv been told hes not haven enough fluids so im pumping water through his NG tube like hes going to pop. feel like im fighting a loosen battle.

dev9aug Thu 16-May-13 19:48:46

We are also having problems with weaning but we are getting some support with that. Have you spoken to your Paed about it, they can refer you on to dietician and feeding SLT who might be able to help you. We asked for a refer all and they were helpful but not very effective. You never know they might be better in your area.

Also, I posted links to one of the books I have some time ago. This is one of the books feeding SLt normally use for guidance. If you scroll down the thread, you will be able to find the links to the book which I uploaded to Dropbox.

dev9aug Thu 16-May-13 19:49:40

pofaced how would you go about arranging for these trials, Are they normally done through the physic/OT or using company reps?

pofacedlemonsucker Fri 17-May-13 01:23:26

Physio usually invites reps in for demos and sets up appointments for all children who could potentially benefit. Same as for trikes - some invite a number of different reps in on one day to essentially have a few to try, or they carefully select likely products and do it one at a time.

The other way is of course to go to either kidz north or south, and chat to the reps on the stands, try the kit there, and then go back to your physio.

dev9aug Fri 17-May-13 12:30:12

ah, I found them.www.disabledliving.co.uk/Kidz/South, thanks.

dev9aug Fri 17-May-13 12:32:47

choggers I just realised that I didn't post a link in the post about eating and feeding difficulties, here it is..book link here

sneezecakesmum Sun 19-May-13 14:01:41

All our trialling goes through physio and OT too. I did phone quest up re a trike as OT was taking ages and eventually a trike day was organised but I would have kept pushing the rep if OT couldn't get it organised. grin. I think you just need to inform yourself and keep asking the physio to get their finger out as it can take forever. Once the Kidwalk is ordered we are looking at 6 weeks. She said it was so quick ONLY 6 weeks shock. To me that is forever. You have to pretty much go with the flow with big equipment as the NHS is funding it.

fadhsamum Sun 19-May-13 15:39:58

Hi All..Slightly off topic, but was wondering if anybody had any advice on where to get appropriate shoes and sandals for my daughter. She has recently been given a new carbon fibre insole which she has to wear alongside her original arched insole which means the shoes must have a certain amount of depth to them-hope that makes sense. And where do I start on sandals?!

thereonthestair Sun 19-May-13 16:45:16

On shoes, sandals etc we always go to our local independent shoe shop which stocks loads of European brands which we have forums better (Ecco, ricosta etc) as Clarks were rubbish, smaller shops were also more flexible about trying to get stuff and taking ages trying things on. On trials we found physio and ot were rubbish, but the reps will often come to our home. Tomcat certain,y did are were great. Quest 88 less flexible but still helpful. We also tried various things out at the bobath centre when we went there.

dev9aug Sun 19-May-13 16:55:44

we didn't have much luck with clarks either. DS1 has carbon fibre insoles as well and we found geox quite good with them but never did find a perfect fit.

thereonthestair how did you find the bobath centre? its something I have been considering but it is very costly and I just don't know whether the benefits are worth it..

thereonthestair Mon 20-May-13 09:30:29

The bobath centre is very expensive. There is no getting round that. We went for an intensive block over a fortnight, and it was tiring for us (particularly with the drive) but DS had a ball. Was it groundbreaking, no. Did they do anything we would not have otherwise done, no. Did DS make progress yes, would he have made it without bobath who knows. We went because for us we do not want to be DS therapists and we cannot do all the physio and exercises we want to. We never have time, and never think. We try but we both work and that is a conscious decision on our part. Because we both work the money is less of an issue than it might be as we can afford it so long as we cut back on a holiday here or there.

Also our wonderful private physio has been ill, and the NHS gets more and more stretched for time so we get less and less on the NHS (not her fault- funding cuts, staff of leave and staff leaving not being replaced) and we felt we were going nowhere fast. We would not have gone if our private physio had been working. As the bobath do nothing our private physio can't and wasn't doing. As such personally I think it is worth it if you can't get enough provision, your child is stuck and you are looking for ideas, or you just feel you need to do something. In part I am sure I did it for myself to make sure i could look back and think I did what I could. It is not ground breaking and they don't have magic wands. They have funsing literature that implies children who were told they wwouldn't walk after an intensive session. I am sure they do, but I am also sure that this is because they were misdiagnosed and/or being mistreated or not treated. If you are getting what you need elsewhere and your child is making good steady progress then save the money for somthing else (trike/swimming/something fun) or to do it later when the wheels fall off (for example when you physio gets ill or goes on mat leave!).

Hanc28 Mon 20-May-13 13:59:44

Hi all, just after a bit of advice really, I'm new to this forum so here goes. My son is nearly 11 months and from about 6 months we noticed that he wasn't really using his right hand, his left was fine, but he wouldn't attempt to pick anything up with his right. He seemed to keep it fisted a lot of the time but I have seen him open and close it. Been to see paediatrician who suspects mild cerebal palsy. Up until now nothing else seems to be affected, they said difficult to tell as he's not walking yet. He sat up at 7 months, rolled over quite early and has no problem eating and drinking. He can wave, clap( in a fashion) and can say mama. Just wondering if anyone has any similar stories, to me it seems strange to get a cp diagnosis when he shows no other symptoms?

dev9aug Mon 20-May-13 14:43:05

Yes I know how you feel, We feel the same about doing everything possible for him ao there are no rgrets later on.

I don't think I will bother with Bobath. We have found a clinic in London staffed with a number of paed physios who deals almost exclusively with children with CP, so we are covered in case of illnesses etc. At the moment we see them once a week, we can always increase it if we think he needs it I guess.

thereonthestair Mon 20-May-13 17:49:09

Hanc. Welcome. My ds has diplegia, but it does sound as is hemiplegic cp is a possibility. First don't worry. If it is cp then that isn't the end of the world, particularly if its mild, and if it hemiplegia chances are that ds will walk and function well. Second don't discount it. The only reason ds had the diagnosis was observation, to start with (also diagnosed at 11 months). Thirdly a provisional diagnosis will get you in the system with physio and ot. If you don't need it later, fine, but get what you can while you ds is young, it will make a difference. I'm sure others will be along soon with more direct experience but keep posting and asking questions.

LivingLife2theFull Mon 20-May-13 19:21:02

Hiya all, another newbie to the forum here smile

I have a little boy who's 4years old and has quadreplegic cp, hes in mainstream school and is my little star! So proud of how hes doing there and touch wood our local authority have been fab so far.

I have a quick question though.... hes just been provided with his first electric wheelchair (which his 1-2-1's have kindly put L plates on, lol) and I'm now looking in wheelchair accessible vehicles as my estate car will struggle to fit it. Have any of you got one, and if so what would you recommend?

dev9aug Mon 20-May-13 20:20:14

Hi Hanc yes it sounds familiar to out experience as well. As thereonthestair suggested, if they are offering physic/OT, I would take it with both hands. It is only likely to be beneficial in the long run.

livinglife2thefull Can you go and visit these events run by Motability, you can probably try out the wheelchair in some of the vehicles on the stands. Motability

Hanc28 Mon 20-May-13 22:15:46

Yes we had our first pt session today. Said likely mild cp but would need an MRI scan to confirm. Said there was slight possibility of erbs palsy but I had c section so think this is quite unlikely.

choggers Wed 29-May-13 15:39:43

Neverlateforwork just wanted to ask you a about DD2s milestones, DS2 still isn't rolling over nearly 9 months not to worried as we are getting close I just wondered when DD2 rolled and sat up?

DS2 is being measured for his standing frame this month (june) quite excited to see what that can bring! not to sure where it is going to fit in the house though. don't make the equipment small. but its helpful so we will find the space for him.

smile

everydayaschoolday Sat 01-Jun-13 22:57:07

Hi Hanc. Hand preference was our paed's first indicator to CP although he didn't tell us at the time. This is accompanied by high tone in DD2 right arm and hand. EEG came back clear (she was having seizures) for epilepsy at 1YO, and then MRI confirmed CP at around 16months. She's just turning 2YO now. We had exactly what you're describing at around 11 months, not using right hand, arm held tightly at right angle, hand held in a tight fist and although reluctant to use, some infrequent opening of hand.

However, we had traumatic birth, oxygen deprivation so I think the Paed was probably already looking for the signs although we were blissfully unaware at that time. So this differs from your birth experience although our symptoms sound the same.

Sneezecakesmum you asked me to let you know how we get on with the Bowen Therapy. We've just had our 4th session (one per week). Fantastic. I appreciate it may not work for everyone, but we've seen significant progress, so much so that even our NHS physio commented on exponential improvement in DD and is now looking into the therapy. It's non-intrusive and gentle - I highly recommend giving it a go. I found a local practitioner through google-ing 'Bowen therapy + town'. DD2 used cutlery in her right hand to, almost independently, eat dinner tonight. So, so pleased.

Thank you, Hanging for telling me about Bowen (pg1 of this thread I think). I'm spreading the message grin.

Sorry, I'm not very goo at making it brief blush.

everydayaschoolday Sat 01-Jun-13 23:00:05

goo??!! good. blush again

everydayaschoolday Sat 01-Jun-13 23:09:18

Oh, and she's 'running' round the living room in her new kaye walker from the physio grin. Night everyone!

inhibernation Sat 01-Jun-13 23:44:21

Hi all,
Nice to see some new people <waves>
Very busy right now as we've started fundraising for dd's SDR aftercare. Also we've switched from Bristol to Gosh! I've been finding it a struggle to keep chasing relevant services, health professionals etc. at the same time as working but it has to be done! Hope everyone is ok smile

thereonthestair Sun 02-Jun-13 15:08:21

Hi all. In hibernation thanks for pm, will reply soon. Glad to see some new faces. Ds now 3 driving me mad, but not driving me as mad as he is driving dh. I hibernation interesting re gosh. Have you got a neurologist as well as Kristian at gosh? If so which one.

We are still neutral/ unsure about sdr. Just heard a complete horror story of a little girl whose cp is very similar to ds (hamstrings mainly ex 28/29 weaker grade II similar with kaye walker to ds - in fact could be ds apart from age and sex). etc who is so much weaker now and parents kicking themselves. But still trying to find out more to decide. Also now thinking about schools but getting nowhere fast as parent partnership never able to call apart from when we are at another appointment. We will get there soon enough.

Does anyone (apart from sneeze cake) have a child with cp, who is not the youngest? I would love another child, but dh not so much even if life came with a guarantee another child would be fine, which of course it wouldn't. I am not getting any younger (40 is fast catching up on me) and I just don't know how if at all to sort this dilemma. I suspect the answer will be no as dh is so anti but I fear something will always be missing.

Separeately I just want to add that we got a trike (well 2 in the end- long story) and the Tom cat trike is by far the best thing we have ever bought for him ( much better than the kitten he tried and imp we got second hand). Anyone who has children who can move at all over 2 ish I would really recommend looking into trikes for the summer as it makes such a difference to ds who can go out independently, and steer and has such fun. And the physios love it ! Also lots of charities will fund but they take a bit of time so if you are thinking about it, it is something I would heartily recommend.

chatee Sun 02-Jun-13 19:56:05

Hi All,
Would second any recommendation for a trike- well worth the money as generally the life span of the first/second size tomcat trike is for 4-8 year olds.
Anyone looking for a blue one 4-8 years I know of one that is being sold and its in excellent condition.

Also look into starting swimming with your children really positive and beneficial too.

My dd is not the youngest in the family - she was my first and we took the risk having a second child....a few scares during pregnancy and thought we were going to have another 31 weeker but held on until 38 weeks. Do listen to the doctors though as I was supposed to be on bed rest, no lifting etc but what do you do when your child can't sit up properly, stand to go to bed- and you are the only adult around as the other half needs to work as you haven't.....that's why number 2 was nearly a 31 weeker and why baby did arrive at 38 weeks cos I was naughty!

Anyone at pre school age please make sure you apply for a Statement of Special Educational Needs now, don't leave it up to pre school or think that school will do it, it is so much easier if you do it now( please believe me as I speak through experience- not well meaning health professionals who sometimes are not aware of how the educational system works)

My child hasn't had sdr but has had major orthopaedic surgery at a hospital that performs sdr and we saw children who had received the surgery and wow- I wish that we had known about this at an age that we could have had the option for dd.

Well hope that's not too long, hi to Galena and Hairy too x

sneezecakesmum Sun 02-Jun-13 20:23:32

Everyday..thanks re bowen, I will look into it as nothing ventured etc! DGS currently having cranio saccral therapy to see if it halps with his anxiety. Very new age but the therapist said she felt a lot of tension around his ears (he has hypersensitive hearing and rubbish balance!) and she nearly made him drift off to sleep even though it was still morning, so we're giving it a go.

Giddypants who is my DD and DGSs mum has just had a new baby (9 weeks old) so DGS is the first. Frankly she was petrified of another placental abruption, not prem birth, but it was very carefully managed and a successful c section. Little jabba the Hut porkie fully bf baby is such a sweetie and we can already see big differences in development compared to DGS. They take really good care the minute you say 'I have a disabled child!'

Definitely get a trike. we tried DGS on the Imp and it was fab for seating but the pedals were too wide for his pelvis so he was pedalling outwards, not good! Thats why its always best to get OT involved and trial. DGS has at last started RDA and I would recommend a handling belt for a dyskinetic child with poor balance grin Also off this week to Brainwave so better make sure we've done all our homework grin

everydayaschoolday Sun 02-Jun-13 20:56:46

We have our next OT session next month, so I'll definitely ask about trike recommendations, thanks all.

Chatee DD2 is turning 2 next weekend, are we too early to start the statement for SEN? Do we apply direct to the LA?

Our new paed (now transferred from hospital paed to community care) promised in March referral to portage and a co-orinator for all our services (early years, perhaps?). Nothing has materialised sad so I'm going to call her this week and hasten.

Gardenofeden Sun 02-Jun-13 21:31:03

Oops name changed. We never got portage, because ds in nursery. We are in early years. At the moment they are number 1 on the what the actual fuck do they do. So far nothing apart from question ds entitlement despite the fact ds paed who is their overall boss put him on it. That made her very unhappy.

We may yet send ds to a local private primary and if so not really sure what happens with statementing. He'd still need his one to one and on the current system he'd get it. But of course all change for the year we need it and so far getting no answers from anyone

chatee Sun 02-Jun-13 22:16:01

Everyday- do it now! Like tomorrow as if you apply before a child is 2 years old there is no decision about whether to assess the SEN COP says that children under 2 years must be assessed.
Go to the IPSEA website where they have draft letters for you to amend to your child's details.
Send to the head of children's services at your LEA.
You won't need realms of info in the letter just a few basics as to how and why you think your child will have more needs than the average child - focus on health and safety too( as that makes them worry a little more) remember pre school is all about free child led play - how will your child cope with that? Can they access the dressing up clothes independently? Hold a paint brush and stand at the easel? Walk/ sit up without assistance? Express their own needs vocally and independently? Eat safely? Contact Paed and tell them you want a report for your application for a Statement of Special Educational needs but do not delay applying as part of the process involves getting all the reports together.
Good luck x

amymouse Sun 02-Jun-13 22:17:58

Just checking in and reading everyones news! DD is doing brilliantly with her Kaye walker. She is keener on walking holding my hands but her stamina and posture is a million times better in the Kaye so trying to encourage her to use it lots more; come on sunshine! We recently had a gait assessment and physio wants to try AFOs as next step so waiting to be measured. Interesting about SDR and hamstrings; that is where the bulk of DD's spasticity lies too. Stupid question-do most of you find out about things like SDR, other therapies etc from paeds or own research?

Our physio wants us to have a CAF/TAC/whatever it is called meeting soon with all the professionals involved before she leaves us in August and we start to look at preschool as she isn't wildly impressed that no one is working together. I wish the rest of them were as good as her; I think it might be a waste of time!

Hope everyone else is doing well x

chatee Sun 02-Jun-13 22:34:36

Amymouse,
Please apply for a Statement of special educational needs yourself now- Dont wait until all professionals can get together...
See my messages above
Good luck x

chatee Sun 02-Jun-13 22:39:22

Ps it's so good to hear how well all the younger children with cp are coming along- really brings back memories and reminds me of how far my dd has come on. Especially at the moment as she is a typical teen with horrible hormones and. Super stroppiness. I am quite fortunate that I know two lovely young ladies with cp ( in their early 20's ) and an older teen who have all taken dd under their wings and treat her as the annoying little sister and put her in her place. I can also see and talk to their parents and know their is light at the end of the tunnel x

everydayaschoolday Mon 03-Jun-13 20:10:05

Hi everyone. Busy day today. Called pead and stated my disappointment that I had not received our initial consultation report nor heard from any agencies we were supposed to get referrals for. How long does all this usually take? Our consultation was 12 weeks ago! aaargh <little tantrum there>. Anyway, apparently report drafted awaiting doc signature and will be dispatched in the next 2 days. Also they've referred us for portage and Birth to 5. Horrah, something is happening.

Then called our preferred school as all the templates for applying to LEA mention the school. Our preferred school v helpful (SENCO) and said they would be more than happy for me to name them on the form and were v constructive.

Statement application is going to be posted tomorrow, now I have some more info under my belt.

flowers Chatee

everydayaschoolday Mon 03-Jun-13 20:42:08

Amymouse our OT, physio, EEG, MRI, portage and Birth to 5 have all been on referral by the paed. (The hospital paed being FAR quicker/more efficient than the community one we now have sad).

Everything else has been chatting on here, Scope and general internet research. I got Bowen recommendation from this thread and backed it up with some internet research - my physio and OT hadn't heard of it. I suggested to our physio that we'd benefit from a kaye walker after hearing about it on here. I've asked for a SaLT referral (through physio). It seems we have to do much of it off our own backs.

My mantra is every kid deserves a pushy parent grin.

inhibernation Mon 03-Jun-13 21:35:04

everyday - you are so right! Though it is kinda draining.

Chatee - statements are being phased out and in the borough I reside in it is now almost unheard of for children to get one unless they have more than one profound need. Physical disability alone is not enough! So though I have applied for SA it is likely that dd will be on Action Plus which equates to 15 hours 1:1.

Thereonthestair - so glad ds likes his trike. Dd loves her bike too. It's so good for their muscles, and it's fun smile
Re SDR - the physio period is lengthy as some children are weak for a long while after. Dd's physio said she's worked with some children who take up to 1 year to get back to where they were. dd is milder than them so we hope it will be sooner that she's regained her strength but prepared to do up to 2 years post-op physio. The spasticity is like a shell encasing the child's muscles so there are some muscles that have never been utilised pre-SDR. dd is weaker on the side of her body that has higher tone so we know she will have to work harder on that side. Though it is also reassuring because it shows she is capable of building strength as she has been able to do so on her less affected side. In the physio assessment underlying muscle strength will be measured.

everydayaschoolday Tue 04-Jun-13 20:03:01

Request for assessment from LEA posted today traceable/signature special delivery, so it'll be there by 1pm tomorrow. Scope online had a very good template to use as well.

I luffs this thread...thanks

sneezecakesmum Tue 04-Jun-13 20:29:15

Lots of endless research articles etc etc. especially if your LO (like DGS) is uncommon and only about 16% Cp is like him. Maybe even fewer as he doesnt fit any typical picture so half of the research is just finding a proper description so we can look at related therapies! Just about to wade through 'oral pharmacotherapy for movement disorders of cerebral palsy'. confused

Hanc28 Tue 04-Jun-13 22:36:50

Hi all, just had our second pt session today, physio says there is tone in ds right arm and leg, think its called right hemiplaega, hope I got that right! She has suggested ortho boots for when he starts walking and maybe a splint. Said we could also think about Botox injections if needed in the future. They mentioned something about him having an MRI scan? She said they don't need it to make a diagnosis as the symptoms are obvious, so I'm unsure as to any benefits of having a scan?

Hanc28 Tue 04-Jun-13 22:41:30

Everydayaschoolday, how s your daughter now? Does she have mild cp. our paed and physio think my sons is mild and I hoping his symptoms will be minimal. This s a new thing for us and its taking a while to sink in, we have all sorts of things running through our heads at the minute. I'm already worrying how he will manage at school, will other people notice, how will he manage? Really is a rollercoaster of emotions at the minute.

inhibernation Wed 05-Jun-13 08:11:27

Hanc - a lot of children with hemiplegia do walk.
dd has Diplegia and wears splints on both feet. She tolerates them really well. Honestly we are so lucky that despite her feistiness she tolerates day and night splints and physio! I think it helps that she's had them from a young age (before 2 yrs of age).
One fact that kept me going in the early days was that children with CP are no less happy than their peers without CP. This was researched. It helped me to know that there wasn't a thing I could do to cure the CP but at least she wouldn't necessarily be sad as well!!

Thereonthestair Wed 05-Jun-13 13:59:47

Hanc i think the vast majoirty of hemiplegic children walk, and in very general terms if it is just hemiplegia it is more likely to be classified as mild, although there are often more issues with writing, dressing etc. I know a few hemi children, far more than I do diplegic children like DS. One I would not notice he had CP at all, he walks, runs, plays sport and the only time there seems to be anything noticeable is when he plays the piano, which he does badly. I first met him when he was 7.

The other child is more severely affected and yea I did notice when i first met him (when he was four) he had one splint, but walked and ran badly. he used a maclaren major for ling distances, but he was toilet trained, dressed and undressed and at a mainstream school. His main issue was sight and dribbling. It just goes to show that when you have met a child with cp you have met a child with cp. They are not all the same.

DS also is fine with splints. he doesn't like them but he tolerates them and always has. He also never complains about pain even though he does sometimes say they hurt. he is just very sociable.

You may wish to look at hemihelp. I hear they are very good. Shame I can't say the same for scope.

On another point anyone heard of/tried PERCS. I understand it is a US technique now being trialled in the UK?

everydayaschoolday Thu 06-Jun-13 22:04:12

HiHanc DD2 is doing really well. She sat at around 16 months. She's progressing now exponentially (she'll be 2 on saturday). She can cruise along the furniture (side stepping or walking holding on). She is doing some self feeding but getting cutlery at the right angle is proving difficult. She is using her right hand now, but it's still quite stiff and she needs reminding to use it - it's harder work for her than her left. She has no speech (yet) I'm still holding out for my 'mummy'. She can point, nod, shake her head, giggle, laugh, drop things to get a reaction (!), crawl (only very recently), so we're getting there.

As inhibernation said, she is so, so happy. She'll have a great quality of life because I can see her personality growing and she's a fighter grin. And funny with it wink

She also has piedro boots on referral from the physio. They are v cute and come in a selection of designs and colours - so don't be dismayed if you get a referral, most people don't even recognise that they are any different from a sturdy pair of clarks.

All the mums at the school gate for DD1 (turning 5) all know about DD2 diagnosis. I'm open about it and have such lovely support and understanding. I'm confident that all the kids at primary (ages off yet but you do think about it!) will be kind and help her. Secondary school might be different, but not thinking of that one yet.

It took me a while lurking on here (about a year) before I posted. It takes time to let everything sink in. Give yourself that time. They change so much in the early years, and kids have a habit of surprising us or proving doctors wrong wink.

Hanc28 Sat 08-Jun-13 22:51:10

Everydayaschoolday thank you so much for your words of encouragement. I'm just letting it all sink in at the minute. Having physio every two weeks and had a liaison nurse come round to talk with us which was very helpful. I'm starting to get my head around things a bit more now, and its encouraging to hear so many promising posts on here. At the min he is still commando crawling. He gets up an all fours but just rocks and gives up. Not pulling himself up yet but has started trying on the bottom stair. He can stand holding onto things like the bed or the settee but ain't started cruising yet, but to be fair he's not 1 for another 3 weeks so I'm very pleased with that. He does seem to be trying to use his right hand more, just seems awkward and stiff and has very poor grip but hopefully with physio this will improve��

Thereonthestair Mon 10-Jun-13 10:22:23

DS having botox on his adductors this afternoon. I am sitting at work trying (and failing) to concentrate on drafting a claim for a client. Nothing really to say. I know it will be fine although I understand that it is more painful than hamstring and soleus which we did before. I think I am just feeling sorry for myself. Spoken to a colleague who says that he knows its different but everyone feels the same about their kids and worries the same even if the issues are different.

Not sure if I buy it. Not everyone takes their children into hospital regularly for therapy and treatment. Not everyone looks at all the other children running into nursery and climbing up and down stairs etc. Not everyone has to worry about whether their child will ever get to take their own shoes off (although DS can now take his splints off at the most inappropriate times). Nothing really to say, just having one of those days somehow and figured you lot would understand.

everydayaschoolday Mon 10-Jun-13 19:37:01

On phone so keeping it short. Was thinking of you today, thereonthestair. Was at work so couldn't message back. Hope all went well this afternoon, and your DS is feeling alright. Big hugs your way. And no it's not quite the same as I didn't worry about dd1 the same way as I worry after dd2. You're right xx take care xx

sneezecakesmum Mon 10-Jun-13 19:59:43

Inhibernation....your colleague may have felt they were being reassuring, but frankly they were talking out of their arse!

I had two NT children and despite DS having ADHD which was hard work but manageable and now helping DD with DGS who has CP and being very involved in his therapy and care, it is definitely NOT the same! Managing children with the odd broken bone (if you are unlucky) chickenpox, vaccination worries etc etc doesn't come close to the endless appointments worries, surgeries, medications, gastrostomy issues and on and on and on! Frankly a big pat on your back for not hitting the person over the head with a nearby heavy object. We all get it and unless you are unlucky enough to be in this particular lifeboat, you've no chance grin

Thereonthestair Mon 10-Jun-13 21:09:28

Thank you both. Botox was fine, despite a few wobbles. Our paed is very "naice" and soothing, and means well. Ds got stroppy beforehand as he remembered the room. In fact he tried to make a break for it with his walker. Didn't succeed though. And he is still known as the child who doesn't like chocolate. My bag is always full of crisps and ,mini cheddars. Anyway he screamed and was then bribed into calming down.

I just do feel no-one quite gets it in rl. Dh went on a massive downer and was clearly worried sick. He still seems angry at least some of the time.

Got work vaguely sorted for today when we got back, and tomorrow is another day. Now we just have to hope and pray we get a boost from it having been done.

Thereonthestair Mon 10-Jun-13 21:11:54

Oh and I may look for the heavy object next time. I actually really like my colleague even though he is a jerk and has tendencies towards being a waste of space when it comes to work. I know his heart is in the right place really.....

sneezecakesmum Tue 11-Jun-13 20:36:39

Thereonthestair. Sorry re name mix up, I am old as DD keeps telling me! Glad all the Botox went well and hopefully you'll get a good response from it. DGS has not had Botox but the gastrostomy was a bit traumatic. Unfortunately sweets or savouries have never been bribe worthy....now the ipad..yes! Today i was looking after the 10 week old DGS2 for an hour+ in a stuffy car while DGS had cranio-sacral therapy. I finally resorted to ipad lights and music for him too! I'm amazed at how NT babies twitch and wriggle constantly. Researched a while ago and CP babies usually don't wriggle in the same way and its an early indication of CP and even which type. CST is a bit out there but lots have said it helps with anxiety so it won't hurt to try.

Anger is one of the grieving stages and in any case I should think we've all felt anger at the injustice of your child having CP and I certainly have raged about it, but it gets easier over time though I think it can get replaced with anxiety which DD is having at the moment. Going to book her for some CST if it helps with DGS. smile

I was chatting to another mum at RDA yesterday and her little boy has a brain tumour that is malignant and although its not there at the moment the shunt keeps blocking and she knows the tumour will keep coming back and he'll need another shunt operation soon, and I just thought omg how do you keep sane, let alone give her children all the love and attention they need? I'd be in pieces, and you just see kiddies being shouted at in the supermarkets, or mums who think the worlds ended because their toddler chipped a tooth! Rant over, but I've had my limit of vino today. I don't know what the answer but wine might be in there somewhere. grin

dev9aug Thu 13-Jun-13 23:35:26

thereonthestair I can relate to your dh re anger. Quite a lot of time is spent in my head blaming myself when things are not going so well but I tend to forget it when things are going well.

I hope you see some positive results from Botox. It is something on our to do list as well. How soon before you start to see the results?

amymouse Fri 14-Jun-13 00:06:41

thereonthestair I've felt very similar this week. DD got cast for AFOs and freaked out and screamed the place down. Had that moment (again) of why us, why her. And then no one really understands, although some do try. Some days, even if its just an hour appointment there, half an hour physio there, it just feels overwhelming.
Paed wants to try a very small dose of Baclofen to help dynamic tone. I'm on the fence(ish); have not heard too many good reports at the milder end of the scale. On a slightly cute side, DD has taken to wrapping bits of wallpaper sample and leaflets round her legs and calling them her "Ggggg[aiters]" whilst we wait for her new gaiters to arrive. Very sweet, also makes me a little sad and wonder if her legs are sore and she can't quite tell me. Maybe just having a grumpy day!

sneezecakesmum Fri 14-Jun-13 21:09:56

Amy DGS more than screams the place down when he has AFOs cast. Really, we all need earplugs as his scream shatters glass! Of course when he's screaming he's extending and ballerina toe ing it so they are so difficult to cast they need the departmental expert! Hope your DD got to choose a nice pattern for the plastic. We had tellytubbies last time.

Thereonthestair Thu 20-Jun-13 22:40:46

Hi. Can I just ask how quickly you get Afos. I went with ds in April, as I thought ds had grown out of last pair. They said no come back in a month, we did by which point he was far too big and blistering for the old pair. They let them out a bit and he managed another 8-9 days before blisters back. New splints after a fortnight which are a disaster and so we have nothing at all at the moment waiting for the next appointment. Which even as urgent is a fortnight. A further fortnight to get them remade but because there is only a half day clinic a week for the county we won't get the follow up appointment until 26 July!

I think therefore we will end up with no splints at all for 6-7 weeks because being 3 ds grew. Who would have expected a 3 year old to grow....! Well we did in April but were ignored.

The new splints are a disaster because the NHS trust has changed supplier (for cost saving). And because the orthotist did not listen to me or various others about what we needed.

Any ideas?

Anyone know a private orthotic clinic?

Anyone know how to get a referral out of county or do anything to get acceptable service.

Am at the end of my tether.

Lycra suit story is about the same. The wheels are falling off here.

Kaffiene Thu 20-Jun-13 23:40:09

There - First I think you need to put in a complaint which may speed things up for you. Contact the orthotic department and ask who you need to make a formal written complaint to.

I have unfortunately been in your position. DD was unable to walk at all without her AFOs and we had awful problems. Where are you? I may be able to piont you in the right direction. This place is used by a lot of post SDR people http://www.londonorthotics.co.uk/location/kingston-upon-thames/
But I do have to warn they don't come cheap over £1000 a pair!!! And usually take min of 2 weeks from casting to getting the finished product even through a private clinic.

Would peidros or other supportive boots help in the meantime? There are often second hand ones on ebay or via the Facebook SN page - cant link as am on my phone sorry. They weren't enough for DD unfortunately sad

dev9aug Fri 21-Jun-13 07:24:53

Thereonthestair, I have sent you a PM.

sneezecakesmum Fri 21-Jun-13 16:25:10

http://www.ortho-europe.com/orthoeurope/files/b6/b6f22061-165f-4a41-8828-48e6292cec62.pdf

These do DAFOs which don't need casting, but I've no direct experience.

sneezecakesmum Fri 21-Jun-13 16:26:14

We have a SPIO Lycra vest from America which has been very well tolerated and helps with posture.

amymouse Fri 21-Jun-13 21:59:44

We've been told there is a limit on how often we can have AFOs regardless of growth. Doesn't fill me with hope! I hope you find a solution there.

Very stupid question (I am exhausted this week and my brain has ceased to function, apologies): those who use walkers, for days out what happens when your child tires?! DD cannot manage for long either in walker or holding hands for support, but equally I am not an octopus to hold buggy handles/walker/child and they all weigh a tonne. She has just had a growth spurt and her legs have gone mad and I seem to spend large amounts of time carrying her everywhere/she gets stuck in the buggy. Maybe I should just toughen up and lift cans of beans each evening!

chatee Fri 21-Jun-13 23:14:50

Hi all,
AFO's - we had an absolute nightmare getting afo's at our local hospital - dd described as very complex. Wasted so much time attending casting and fitting appointments involving missing school and work with all the added expenses of petrol and parking charges at the local hospital.
At a specialist orthopaedic appointment in a different region we saw an advert asking for children/ young people to take part in a trial for a year.
We volunteered to take part and were accepted.
The trial involved being laser scanned for afo's and being casted for afo's on the same day.all details then sent to people who actually make the afo's and they made you a pair. The orthotist at the hospital did not know which measurements were used- but on the day of fitting we said that our afo's were made by the laser scanned method as they fitted so perfectly.12 months later at the end of the trial we were told by the orthotist that they were made by laser scanning.During the trial we had to fill in various questionnaires but it was well worth taking part as they were to this day the best afo's dd has ever had and actually lasted her 8 months, we only ever get a maximum of 6 months as she either stress fractures the afo or has a growth spurt.
At the end of the trial we asked if we could stay at the specialist hospital for orthotics and although they have to gain permission each time from our home area primary care trust( or whatever commissioning service it is now) we have not regretted that decision.
Cast middle of April, fitting next week and that includes the delay for waiting for our local trust to get back to the specialist hospital and also waiting for custom made shoes.
Do not be afraid to ask questions and challenge decisions- ask to see policies stating what you are being told....
Kaye walkers and buggies and wheelchairs and child!
When dd was using a pushchair we found that having one with handles was a benefit as we could fold the Kaye walker down and prop over the handles and it would balance on the hood part of the pushchair- just meant I would look a little silly pushing an empty pram with a child dawdling behind in a Kaye walker.
When dd progressed to a wheelchair the occupational therapist suggested to have ' knobs' placed on the frame of the handles so that we could hook the Kaye walker onto when dd got tired and used her chair- also for school trips otherwise dd would have needed 2 adults to support her- 1 to push dd in her chair and 1 to carry the Kaye walker( no way that would have happened) so the year in reception I had to go with the trip but by year 1 she was in her wheelchair.
The ignorant guy at wheelchair services( sorry I meant technician) really objected to this idea as it means the wheelchair is now bespoke and can not be serviced and handed down but at the end of the day you need a product that will meet your needs not what the technician wants as he is not thinking about you but about his budget.
Get the chair right the first time and you will have it for as long as possible , get it wrong and you will be having repeat appointments so therefore wasting time and money and a new wheelchair more frequently.
Can you tell we have the T.shirt? ( iykwim)

Thereonthestair Sat 22-Jun-13 08:41:19

Hi, thanks for all the comments of Afos. We hook the walker over the buggy (we have a baby jogger) and don't even fold it down. If I am with dh we tend to have one if us carry ds on our shoulders and one carrying the walker when ds tires. Have not yet got a wheelchair.

sneezecakesmum Sun 23-Jun-13 20:55:56

Ive created a conversation about research and theories of Karen Pape a neonatologist which is basically neuroplasticity, but has a lot of implications for older CP children.

here

It also supports what we have tried to do and create quality movements instead of quantity ones.

prissyenglisharriviste Wed 26-Jun-13 14:26:40

We used to hook the walker over the buggy handles too. Once we got the we it was either/ or - we made a decision which was going to be more practical.

On a slightly diff note (Tis madwoman) school is out here as we are in the middle of local state of emergency (google southern alberta flooding - our wee hometown made the front page of the torygraph last week). Dd2 is holding up v well. Highway is still shut in both directions. <sigh>

I get extra school holiday to deal with. Go me. grin

prissyenglisharriviste Wed 26-Jun-13 14:27:19

Once we got the 'wc'. Obv autocorrect changed it to 'we'...

Kaffiene Thu 27-Jun-13 22:57:19

We recently had the wheelchair/ walker issue recently regarding a school trip. I decided we needed to sort this issue once and for all and refused to accompany or transport her there. At first they said DD would have to spend the day in her wheelchair I challenged this decision and to cut a very long story short DD was supported by 2 people on the trip. Both support staff said it made the day so much more enjoyable and stress free for all concerned. They all had a ball. Wheelchair and walker were managed and staff toilet breaks were also covered.

On family days out we have a Special Tomato EIO the walker folds and goes on sideways. It was so much easier when she was shorter and the walker could hook and dangle down. I used a luggage strap the attach it to the handles so it hung down and didn't add to the width. And yes I spend a lot of time pushing an empty buggy with DD racing around in her walker! I do also have a bike lock and have been known to chain the buggy up so its nearer than the car but I have my hands free.

Tricks of the trade smile

Verybusymummyof2 Sun 30-Jun-13 22:11:12

Hello, I've posted a few times. Not for a while. I am relatively new on this journey so don't really have much advice to offer as yet.

Things had been good. But I'm starting to struggle again and feel my emotions slipping back to the bad old early days. Is this normal? When I think back to this time last year we have come so far but recently I feel her progress is stalling. Dd is 15months corrected and rolls, and can sit unsupported but only for 5 minutes or so, and over the past few days It feels this is slipping to less time with her extending again, something which had become quite minimal. The physio says that she can sit so is now focusing on the next stage. But I personally imagined this would mean me plonking her on the floor and letting her play. Stupid I know!
She needs me with her pretty much constantly otherwise she moans and crys, I'm feeling burnt out and have that awful feeling and thought of wanting her to be normal. Just wanted a bit of a rant to people who understand.

Thereonthestair Tue 02-Jul-13 16:41:41

hello Very busy. It does eventually get easier but yes it is normal ime to go backwards a bit now and again. You only need to read my posts over the last 2 years to realise that!

It is also very very normal to stall. DS went to sitting crawling and cruising in the space of 4-5 months (so late and slow) and cruised at 21 months. He still can't walk though. There are others here who went to walking at month 6. I think it depends on many things, not least of which is which muscles are affected. In our case it's hamstrings mainly not calves so he is not a toe walker. but balance is much much harder.

My lovely physio says once a child learns a skill they don't loose it again (I know that ASD children and degenerative conditions are different) but if its just CP then if your DD can sit she will sit and keep sitting. They also tend to say if you can sit by 2 you will walk.

Can you plonk your DD on a chair at all? Ot may provide one but we have this

www.johnlewis.com/east-coast-combination-wooden-highchair/p231249110

and just took the chair off and used it as a chair and table, put the toys on the table. Ds was a little unstable to start with but now he can get in and out of it on his own, and into his walker. But it does mean we could leave him, and he gets stronger all the time.

Some other children with CP allegedly feel vulnerable without their mum and that gets better too. DS has always gone to nursery so we don't really have that, but he does have a strong preference for me over his father.

Just by way of an update last week DS learnt to stand independently. It has been a goal since December 2011 but he can now do it! He is also now walking some steps with tripod stick independenlty. That has been a goal since last week. He'll walk one day she says....

Thereonthestair Tue 02-Jul-13 16:45:59

oh I also meant that once they stall they usually get unstuck though, but sometimes it takes time as they consolidate the skills they have got a bit. Physio should help with that and do tell your ohysio if you feel you are stalling. they should work with you. You may also want to think about a standing frame with a table/ledge if you want to plonk DD down a bit. It might be good for her legs, it will be safe, and it should allow her to learn some other age appropriate skills (toys/books/jogsaws etc) without always having to worry about falling

melmo26 Wed 03-Jul-13 19:35:37

Hi I was given a link to this page
I am new to all this about cp. We had our dd4 15 weeks ago and she suffered a stroke at birth which caused brain damage on the left middle part of the brain. Sorry I don't really know all the proper terminology for these things. I was wondering if for any of you was it obvious at a young age that your child had problems or did they change. Our dd has good movement in both her right arm and leg(although weaker than the left) a tight fist most of the time. She started rolling this week onto her side and today nearly onto her belly. Can this change?
I will be keeping an eye on this sight as it has great info thank you

Verybusymummyof2 Wed 03-Jul-13 21:10:49

Thanks on the stairs. Your reply was just what I needed to hear. particularly the bit about once the skills are learnt they don't loose them!
I am not sure what muscles are tightest in dd legs, must ask physio when I next see her?

Wonderful news about ds learning to stand independently! It sounds like he will walk soon! Is it just physio you do??

This CP journey is so up and down, periods of time feeling that all will be okay followed by periods of complete despair and frustration and so on!

i feel a bit more brighter than when i last posted, i was feeling very down, going to work for a 'break' on Monday helped and We had physio on tuesday, I expressed my concerns about her sitting going backwards, she had a good look and play with her in the seating position and actually said she thought she was sitting with improvement and the reason for the toppling was dd desire to move. We tried command crawling and she did it!! Not too far, but she moved unaided. So it's a start.

Melmo - hello. The early signs for my daughter were clonus in her ankles, maybe 8 beats at the most and a brisk knee reflex when examined by the doctor. She was very irritable and would go stiff. She had good range of movement and still does and her stiffness is mildish and comes and goes. Also curled toes, still are often and tight hands, although now her hands are much looser and she can use them.

Verybusymummyof2 Wed 03-Jul-13 21:11:49

O and looked at the John Lewis highchair - what a great idea!

Verybusymummyof2 Wed 03-Jul-13 21:26:45

Oh and another question. Can anyone recommend a forward facing car seat?? Dd is very almost 9kgs, has a weakish core but has started sitting independently with good head control? I do feel she needs something with a little more support than the one my eldest has? At the minute she is in a maxi cost pebble one.

chatee Wed 03-Jul-13 21:59:49

Memo,
It's a long time since my dd was a baby - she will very soon be turning into an official teenager( has been acting the part for a good 12 months!)
But what really helped my dd was lots of massage style moves- really you could look at it as the first steps to physiotherapy....I did it with my dd as a friend with a really early premmie baby had been shown by the physio and I had sat and watched (and did) to help her.
I started literally from a couple of weeks after birth ( dd had a dislocated hip and was in her first harness by 3 weeks) so I only had her arms to touch without causing any problems.
Basically my dd was late to be diagnosed- was originally a spastic diplegia but when a lot of time was spent assessing her (and MRI) and the docs talked to us , the diagnosis was changed to cerebral palsy quad with left sided weakness.....the massage/physio and stimulation from such a young age (when the brain is slightly more malleable?) had improved her arm function.
Try and get in touch with your health visitor- they may know of baby massage classes(ours were ran by the nursery nurses who worked under the health visiting team and sure start) and if you don't feel comfy with going to a class due to your dd's additional needs then speak to the hv and ask would it be possible for two or three short 1-1 sessions in your own home.
Congratulations on your dd - it's a long time since I had a baby snuggle in our family xxxx enjoy.

everydayaschoolday Thu 04-Jul-13 22:46:27

chatee hi are you around (or anyone else who can chip in that's been through the statementing process)? Thank you so much for the advice to start the SEN process. I've done this and the LEA have confirmed that they are processing my request (I should know whether they're going to assess by 26 July).

In the meantime, they have asked for details of all our medical support so they know whom to get reports from. However, in addition to this, they've asked for a parents statement with a number of very open set questions about DDs condition, what she can and can't do etc. Additionally, they've said that she'll need a medical review and a psychological assessment. I'm content to complete all the paperwork they have sent me - it all seems straightforward, but are they're any pitfalls I should be aware of? I was going to photocopy some of the reports we've had from the consultant and include them in my return - good idea? They said that all information gathered during this process will be shared with all other parties.

I think I'm being unnecessarily cautious - it seems like a big scary test or something. I should be open and give them everything I have, right?

dev9aug Thu 04-Jul-13 22:51:24

Everyday We have just applied for SA and were advised to give them all evidence as you are not supposed to withhold anything. You might want to ask this question on the main board as there are plenty of people who have done this many times.

everydayaschoolday Fri 05-Jul-13 00:22:06

Thanks dev9aug. You confirmed what I suspected - to give all the evidence I have. Thanks smile

Thereonthestair Fri 05-Jul-13 07:05:49

Funny i was advised to hold back on reports from a couple of people to give you something to put in in case you need to appeal, as new evidence allows for reconsideration!

dev9aug Fri 05-Jul-13 07:15:11

Thereonthestair We used an advocate and pretty much every report we have was included in the initial request. I asked the same question as you as thought it might be better to withhold some reports. If i remeber correctly, it was because if it did go to tribunal, then the panel might not look too favourably on that. This request was for SA for dc with ASD and we are asking for provision which is not the norm so in our case it could be that we were front loading the case. This advice might not apply in this case or I could very well be wrong, this is why I suggested posting on the main SN board as they have more knowledge about SA than I have.

Thereonthestair Fri 05-Jul-13 09:59:39

It may be because I have a couple of very on board experts (one has even been to the private school we are applying for to look at the stairs)

The other news from us is that it looks as if we are going at least try to get an assessment for SDR. Still not sure if we want it, but now also worried that DS won't qualify due to core strength and the nature of his spasticity.

2old2beamum Fri 05-Jul-13 21:35:04

Just a quick update on DS's SDR. He is now 2 weeks post surgery and the difference is amazing. I must stress this was not done for mobility but to make him easier to handle. He no longer cries when his pad is changed and he so relaxed when being dressed.

He no longer needs Baclofen 4X a day.
The care we received at Nottingham was superb

amymouse Fri 05-Jul-13 22:16:52

Can anyone help with muscle spasms? DD had a 'moment' today-her legs gradually got tighter and tighter and then completely seemed to lock for a bit, one from her hip and the other from her knee. She seemed in so much pain; she screamed until she fell asleep. She didn't fall or land awkwardly so I can't think what else caused it and was wondering if it was a CP thing? After a very short nap and some Calpol she seemed better, if still very tight. Hopefully just a one-off...

melmo26 Sun 07-Jul-13 20:49:30

Hi I am new here. We had our dd4 nearly 16 weeks ago, she suffered a stroke at birth which caused the brain damage. I did start my own thread and was told about this one. I am still learning about cp and everything thatthe condition involves. Dd4 has her eyesight,hearing and is using her right hand and leg buthoth are weaker than the left. She has a physio that we see regularly and her paed. She also has a diet and nutritionalist and speech and language therapist that we met at the hospital before leaving but do not see yet as baby is too young.
I am a little bewildered by all that has happened. I'm glad this site is her as it has given us a lot of info about the condition. Also I had a read of hemihelp last night and it was really informative.
Anyway just wanted to introduce myself and say hi

melmo26 Sun 07-Jul-13 21:00:01

Just noticed that my last post did go in. I couldn't find itbefore so added another one. Feel a bit silly now:-o

everydayaschoolday Mon 08-Jul-13 08:48:49

Hi melmo welcome to the thread! I'm only about 18 months ahead of you, so understand you're on a steep learning curve. It looks like you're getting much the same support as we have, although we've only just got SALT involved as DD2 has just turned 2. Please ask about anything, or post on updates to say how you're getting on. I've found the guys on here are lovely. flowers

everydayaschoolday Mon 08-Jul-13 08:53:18

amymouse I hope your DD is feeling better. I wonder if you could get an emergency physio appointment to see if they could loosen the muscles <I have no idea but thought this might help>. Sorry I can't help with muscle spasms, but hopefully someone more knowledgable will be along shortly flowers.

everydayaschoolday Mon 08-Jul-13 08:56:22

2old2beamum so,so pleased DS SDR went well and you're seeing real improvement to your lives.

choggers Mon 08-Jul-13 11:26:10

Hi Guys my DS2 is Now rolling over really excited about this!! so pleased for him taken it as a good sign as he was so determined. still not sitting up. but one step at a time. we are looking at putting him into a nursery just for one day a week for him to think he will enjoy the environment I was just wondering if anyone else has done this and is there any advise. they seem really willing to help and do what they can in order to make it the best place for him.

everydayaschoolday Mon 08-Jul-13 11:49:09

Choggers Congrats on the rolling over!! flowers That's an important step forward - he's mobile! My DD used 'rolling' around the living room to get to where she wanted. What age is you DS2? Our DD2 is now 2 and not been to nursery yet, but is always keen to play with other little kids when we're in the park etc. I'm interested to hear how your DS gets on at nursery - keep us posted!

melmo26 Mon 08-Jul-13 20:48:55

Hi thank you for the welcomes. Was just wondering if I could get some info about when your dc was diagnosed as having cp. Our physio kept saying 'babies with hemipligia' matter of factly but we have not been told anything by her paed. How is a diagnosis done? Do we get something saying she is hemi. I really have no idea how this is done.
Dd rolled onto her tummy today all by herself for the first time:-) her right hand did get stuck so she rolled back but all good progress. She sleeps all night which is great for us but our other 3 dds did not. Is this a sign of cp?

amymouse Mon 08-Jul-13 21:06:42

Excellent news on rolling front Choggers and melmo, must be something in the summer air!

We got dx around 2nd birthday. It was first mentioned as a possibility a year before by paed and quite early on by physio. We went to an assessment and the paed mentioned it was "likely" DD has CP. 3 weeks later the typed up report plopped through my front door with the word 'diagnosis: a cerebral palsy' in bold type up the top. So that was that! Diagnosis was primarily formed on spasticity present within muscles, primarily legs. She has brisk reflexes in left arm and both legs as well as development delays in most areas. We did have an MRI done post-dx but it didn't enlighten any further.

melmo26 Mon 08-Jul-13 22:00:59

Wow so it takes quite a while for them to confirm. Dd has had 2 mri's now. 1 at the hospital to see why she was stopping breathing and having seizures and another 1 about 9 or 10 weeks later to make sure there has been no further damage or there is no 'crinks' in the veins and vessels in the brain so another clot won't form.
See the paed on 2nd Aug so hopefully will get some more info from her. Will get to see her mri scans

everydayaschoolday Mon 08-Jul-13 23:54:35

Brain damage was confirmed by MRI at just over one year. Hospital paed consultant confirmed CP before we were discharged from his care to community paed consultant (at 18 months) but we never had it in writing. We just got it in writing (this month) after DD2 first consultation with community paed consultant. So same here: 2 years old, diagnosis confirmed in writing. It was detailed as part of an initial consultation report.

amymouse Thu 11-Jul-13 19:03:51

Anyone have experience with Baclofen (oral)? DD is 2.10 with spastic diplegia and her legs are getting increasingly. Physio and paed are keen to trial it; I keep swinging from one side to the other. My main concerns are she also has mild obstructive sleep apnoea (possibly due to floppy pharynx? Uncertain) and reflux. Also using a muscle relaxent seems a very big step!

amymouse Thu 11-Jul-13 19:04:45

*increasingly tight I mean, although they are also increasing!

choggers Mon 15-Jul-13 21:09:33

everydayssschoolday DS2 is now 10 months, i thought it was a bad idea at first but i am coming round to it as he is sooooo nosie and loves just watching kids i think it will be great inspiration for him. yeah im secretly hopeing the rolling over is a sign of good things to come!
speaking of drugs for children when normally do people look at them for there children as i dont think DS2 needs them but then i also dont want to think of him in pain and me just unaware of him needing it.

hanbee Tue 16-Jul-13 20:39:18

I was really interested in your "how we got a diagnosis" stories. I feel as if we still don't have a proper diagosis. So far all we've been told is that MRI scan shows periventricular leukomalcia and that therefore all DS1's problems are cerebral palsy related. How do I push for more information?

everydayaschoolday Mon 22-Jul-13 08:58:42

Choggers DD2 is not on medication either. Paed said they'll keep reviewing her to see if/when it's applicable. I think regular paed appointments (we're every 6 months) will allow him/her to advise if/when medication is advisable. If you're concerned, speak to your paed, they are always interested in our views and opinion over DD2. smile

everydayaschoolday Mon 22-Jul-13 09:03:36

Hi hanbee we were told at the outset that we might not get a firm diagnosis if they're not sure. However, after the MRI they were convinced it was CP and wrote it in her notes and in the summary review letter for us/ handover to community paed. We're just going down the Assessment route through the LEA, so I imagine we're going to get even clearer understanding of limitations and strengths from this process (fingers crossed). I found just asking the paed (both hospital and community) for it was enough during one of our routine appointments (6 monthly for us).

Thereonthestair Mon 22-Jul-13 13:44:33

Hi. We have had a slightly different route to diagnosis, and all from observation we had prematurity for the first few months then gross motor delay, probable CP at 11 months: then Evolving CP, now CP spastic diplegia distribution. They made the diagnosis based on his history and prematuriy, muscles pattern and gross motor delay.

I have posted before about the diagnosis as we are a text book case of how not to do it. We were just told DS has CP in a general clinic at the end of the day. the physio then left, we were then told don't google it. Then he will walk though. then No he won't catch up. then bye bye. He has had no mri yet. we saw no point as it wouldn't change anything.

Now DS can talk clearly he does not complain of pain even though he is affected fairly significantly. he sometimes says he is tired, and the heat really doesn't help but not pain.

on a separate point has anyone had serial casting at any stage? if so how did you find it? any tips,

Thereonthestair Mon 29-Jul-13 18:10:28

Hi, me again. Tried potty training this weekend (after posting before), nursery tried today. We got a poo fine, ds said he needed one then sat on potty and hey presto. Wee a disaster. Nursery say ds missed out too much after trying to cajole/bribe etc so out him back in a nappy. Ds is 3.5 at the moment 3.2 if I still correct so still time but given poo a success I am feeling slightly mixed about it.

Also in hibernation did you try Halliwick swimming. Just found someone who recommended it. Finally anyone know anything about spml, selective percutaneous myofascial lengthening). Same therapist suggested it, and seems interesting.

Sorry I feel like this post is lots of questions but having a bit of a phase of trying to work out what to do next.

everydayaschoolday Tue 30-Jul-13 20:50:17

Sorry, I don't know about the stuff that you're asking - hopefully someone more knowledgable will be along shortly.

But congrats on making positive steps on the potty training front! DD2 has just turned 2, so we're nowhere near potty training yet smile

biglill Wed 31-Jul-13 11:53:32

Hope this is the right place to come, apologies if it is not. Originally started my own thread but as it is specific to cp thought I would add message here.
My baby boy contracted group B strep meningitis at birth 10 weeks ago, he was ravaged with it and we came close to losing him. He fought hard and did however pull through. We then had the MRI and were not prepared for the news we received. From what I managed to take in, there is damage to the basal ganglia and elsewhere which was described as 'startling', they predict spastic quadriplegia, severe CP and learning difficulties, in fact they seemed to think we should be prepared for anything and were unsure if he would be able to even swallow etc.

I have never been so frightened and lost in all my life and ten weeks on can only hope I have misunderstood or it is all just the worst of bad dreams.

After five weeks in hospital (and another meningitis scare), he is making (I think) good progress. We were determined to lose the tube and he now breastfeeds (which they didn't think he would manage) and has just started smiling at me occasionally, is tracking better with eyes - although he prefers looking to his right and does this most of the time. Passed the hearing test. He still has no head control.

I'm not sure what I want to hear, I guess some words of positivity from people who might actually understand. I was told I would go through a grieving process and should allow myself to 'fall apart'. I don't want to do this though as I have a two and four year old who need me to be strong, my baby needs me to be strong and positive surely too and why grieve when my beautiful boy is here with me and smiling? I do get very sad though of course and can't bare to think what the future might hold for him, I just feel so sad for him and angry too that I wasn't tested for this infection.

I have been reading about your dc's and already feel inspired and more ready to deal with this as I hear about their achievements. I have also got very upset hearing about the severity of some of the conditions, I have deliberately not been asking questions about what the future might hold as I'm not sure I'm ready to hear the answers, have avoided research etc so far as I'm just trying to enjoy my baby. I would love to hear from people who understand that life can still be good and our dc's can still have fulfilling lives with achievements along the way no matter how small. I'm scared that i'm telling myself they have got it wrong as he seems so normal at the moment and am therefore in for a terrible shock.

hanbee Thu 01-Aug-13 09:52:46

Thanks for the diagnosis stories, seems it is just on clinical presentation whether you get more information then. I was brave and pushed and was told DS1 has very unusual presentation. no high tone, normal to low tone. hyper mobile joints and lack of motor planning. learning difficulties and non verbal. He's just a very unusual presentation of cerebral palsy according to his team.

I now feel a bit lost as even though we finally know the cause of his difficulties he still doesn't really "fit" anywhere. sad sad
bigllil hugs. You've had a right rough time of it, but don't feel pressured to react in a certain way. Everyone's slow journey to acceptance is different and very personal. You must deal with this is your own way. I found it very hard to accept DHs way of dealing with our son's difficulties, it involved a lot of denial which I just found frustrating and unsupportive. I've finally learnt to accept his way of coping but it took me nearly 5 years! Don't over cope though, just accept the feelings that arise and call in support when you need it.

I know of another mum whose DS has CP following menegitis, she writes a blog called Premmeditations, her son is 1. She may be a good contact for you as she'll "get" it.

melmo26 Thu 01-Aug-13 11:42:58

Hi BIGLIL I know how you are feeling. We are only 10 weeks ahead of you. Our dd was ill at birth but was suffering a stroke at birth with seizures that no one noticed for 12 hrs. She was then rushed to Edinburgh Simpson's baby hospital by special baby ambulance which I was not allowed to go in so had to go in a different ambulance as I'd had an emergency c.
The stroke caused brain damage and we were told by Edinburgh to expect cp, learning difficulties, motor skill problems. Apart from a general use of cp we have not been told what kind. From what we have read and found out on MN we know it is hemiplegea ( right sided ).
We have been told that we will never know the extent of the damage until she grows and meets or not meets her milestones. So far her head still isn't completely steady but getting there. She recently started rolling but cannot pull her right hand out from under her belly so gets stuck
But everything she is doing is a great accomplishment. We know she is doing things slower but she is doing them.
I personally don't know much about quadriplegic children but there are many mums on here that do and have been great support and help to me.

We have our consultant appointment tommorow and am getting to see her mri images. I'm a little nervous about seeing the damaged part incase it shocks me and I cry. We are hoping though that tomm we get a lot more info on dd. Wish me luck smile

Kaffiene Thu 01-Aug-13 14:56:19

melmo If you are on Facebook you may find this group useful https://www.facebook.com/groups/cpsupportscotland/?ref=ts&fref=ts

Good luck for tomorrow. Who are you seeing?

melmo26 Thu 01-Aug-13 15:22:14

Hi sorry don't use facebook, do they maybe have a website?

We see her paed consultant tomm. Having to take all 4 dds as granny is busy, should b funsmile

biglill Thu 01-Aug-13 15:33:09

Thanks hanbee for mentioning the blog, I will definitely have a look.
Melmo, good luck with the appointment. I totally understand why you would be nervous about seeing the scan, it did upset me but I'm glad I saw as it is all part of the process of acceptance and understanding I guess.

melmo26 Fri 02-Aug-13 14:25:43

Just back from the appointment, we got to see both her scans. The first one shows the healthy brain matter on the right and the damaged on the left. To me it looked like it was 'smudged' she said yes it looks like someonehas taken an eraser to it. The second showed the fluid in the brain. She said dd has fluid in the middle of her brain (where the healthy tissue should be) but not to worry about it as it is still 'sealed'. The damage is far more than we were expecting. It's basically from one end to the other. Her head circumference is dropping a lot off the chart . paed told us that the left side of the brain won't grow so her head will always be smaller. Dd definetly will have probs with right arm and hand as they are tighter but paed thinks that her leg might be fine. We mentioned that DD has 'moments' of mad kicking and punching that last about 5 mins. She said to record dd next time so she can see if its seizures or not.
Pediatrician said she will 'most likely' have cerebral palsy but does not like to diagnose it until 1 yo.

Still trying to process all the info. What does all this mean? Will her head grow or will it stay this size. Is she having seizures or just hyper moments.

I managed to hold tears back though smile

biglill Fri 02-Aug-13 18:55:04

Melmo, well done for staying strong. I hated seeing the scan pictures as it made everything so real having that 'hard evidence', still all part of the process of acceptance I suppose and now you have a clearer picture of where you might be heading. From what so many people are saying it seems there should be great emphasis on the 'might' and we have every reason to stay positive as they are still giving worst case scenario and none of what they say is definite. I was interested in the mad kicking and thrashing that you mention your LO does, my little guy does this too and I was so hoping it was just him having a good old play, now you have mentioned the possibility of it being seizure activity this has got me wondering, maybe I too should record it and show paed, tbh though I've kind of given up on the whole 'is this a seizure' thing as I got different answers depending on who I spoke to!

melmo26 Fri 02-Aug-13 19:41:46

I definetly think you should record ds biglill.
Dd doesn't do it often, every few weeks. It is defo different to the normal 'playing'. It is like her arms and legs are moving uncontrollably and she kind of sucks on her tongue. After a few mins she stops and will lay there still.
Paed says that she has every chance of having seizures.

I think it would defo be worth your while recording him and showing them, even if it is to rule it out.

I find myself looking at every little thing she does and think ' is she meant to do that' ' is she ok' and she is our 4th.

We also got told lots of different things. Our dd was transferred to another hospital 12 hrs after birth so theytold us she had the stroke and what to expect from the damage. Once transfered back home the docs here have a ' wait and see' attitude. It's no consolation when you just want answers but they cannot predict what our dcs will/not be able to do. It has taken me weeks to accept this as an answer.

choggers Fri 02-Aug-13 20:20:30

so DS2 had his wheel chair assessment on Tuesday, she got him out his car seat sat with him for a moment and then went through his history briefly with me to then tell me that he was too small in order for them to give him anything when I question the fact there is wheel chairs for children from 10months old she said well we cant accommodate everyone otherwise we wouldn't be here! I just wanted to know if anyone else has had a similar experience and to know If this is worth fighting against as I feel a bit like he isn't good enough to have one when I know it would benefit it him from being sat correctly. if anyone had forth this sort of decision how did you go about it?

plans are all still going ahead for DS2 to go to play school in September there are in the process of getting a one to one worker and getting them trained! feeling excited and scared about this!

everydayaschoolday Fri 02-Aug-13 22:33:01

Hi Biglill welcome to the thread! We only realised that there was a problem when DD2 wasn't meeting her milestones (initial warning sign was not sitting unsupported at 10months couple with birth complications).

I went through a rollercoaster of emotions. But I didn't grieve, I did brake down in private to DH, parents and my boss (frequently, and he was lovely). Grieving is about loss to me, I didn't feel 'a loss' as I have the happiest, smiling, gorgeous little baby to snuggle. I was sad because I felt she was going to have to work harder for everything, and life was going to be that little bit harder for her at the outset than her siblings and friends.

But I agree with hanbee that this process is very personal and you mustn't feel pressure to act in any way other that what feels natural for you at the time.

But I can tell you that our life is good, for all of us. DD2 is an immensely happy child and we celebrate the progress she is making even though she's not in line with her peers/milestones. (I presented 60 cupcakes at work last week in celebration of her walking now!). She will have a happy, fulfilled life and we know this because we can now see her personality.

We don't think about the future too much at the moment because kids change so much and so quickly at this young age. DD2 is now walking unassisted without her kaye walker (physio is taking it back!!) - she couldn't sit unsupported 6 months ago grin.

Enjoy your gorgeous baby boy flowers, they are all treasures.

everydayaschoolday Fri 02-Aug-13 23:00:39

melmo wine for you after today. I haven't seen DD2 MRI scans. It didn't occur to me, I think I will ask at our next appointment. I cry at (almost) every pead appointment (when we are reminded that our daughter has a disability), so credit to you for holding it together.

DD2 suffered seizures at birth then again at about a year old. They have stopped now. After all of them, she was very upset but I don't know if this is what always happens/normal. I think there are different types of seizure that present differently.

DD2's head is smaller (on a lower centile line) compared to her height and weight, but it is still growing along that centile line. She doesn't look as though her head is abnormally small (wears age 2-3 hats the same as her clothes) although the charts are showing a difference - I think head circumference is on the 9th centile and her height/weight is 50th centile.

everydayaschoolday Fri 02-Aug-13 23:09:33

flowers flowers flowers Chatee flowers flowers flowers

LEA confirmed this week that they're going to undertake the statutory assessment for DD2. Cannot thank you enough for that sound advice and steer of what to include in the letter and who to send it to. We have assessments scheduled - everyone phoning in to make appointments: SALT, physio, OT, portage, psychological assessment (?) and paed.

wine thank you again. I luffs this thread.

melmo26 Sun 04-Aug-13 12:57:31

Thanks everyday dds head has not grew in the last 6 weeks. Only slightly since birth. Her head size isn't even on the chart. It's well under the 0.4th percentile on the chart. I asked if dds head would grow or not and paed digressed saying that if we all shaved our hair off all our heads would look odd and when dds hair gets long it should not be that noticeable. At the moment it does not look out of proportion, her weight is on 50th percentile and length is on 25th.
Thanks for the advice about seizures smile

everydayaschoolday Sun 04-Aug-13 20:50:22

Hi melmo.

About the seizures: We were discharged from SCBU (12 days old), once DD2 seizures were controlled (medication), and we were told to call an ambulance if she had another seizure. It was at 9 months and 11 months when she suffered 2 more seizures and we called NHS direct for advice and an ambulance and she was taken into A&E then onto paed ward for a day's monitoring. After the second seizure we got referred for the EEG (I think this checks for epilepsy - all clear) and MRI (showing brain damage).

I say all this because if you suspect it is seizures, then absolutely do video record it but also don't be afraid to call NHS Direct for advice. Not trying to frighten you, just saying don't be afraid to call for help - nurse at NHS Direct and ambulance paramedics were all very supportive and kind.

We've also had different approaches by 2 different paediatricians (hospital and community). Hospital one was the 'wait and see' and 'maximise her potential' type, and now our community paed is the 'she's got Asymetric Bilateral Spastic Cerebral Palsy' and 'she will walk but not for some time, and she'll likely need a wheelchair as she may tire easily'. So our hosp paed was a bit vague and our community paed is quite precise. In my mind, none of them really-really know because all kids develop differently.

Thereonthestair Tue 13-Aug-13 15:42:42

Hello all. We have just submitted the application for statutory assessment as we are going to need something in place for when DS starts school. so fingers crossed. even DH read my letter this time. Usually he leaves the doom and gloom documents to me but I wanted his reassurance somehow this time. He has still never read the DLA paperwork.

Thereonthestair Tue 13-Aug-13 15:43:56

Oh and one other thing possibly, just possibly DS took an independent step at the weekend (about a month after he cracked standing) it was a bit more like a step then fall into my arms but I figure he at least wanted to try and move his leg. Now if only they would get his AFOs sorted we might make more progress.....

everydayaschoolday Wed 14-Aug-13 13:51:27

Hi thereonthestair. Well done you for getting the SA Application in. What age is your DS? I haven't picked up the DLA paperwork yet. I feel a bit funny about applying as I don't feel like we need it. Other people more in need than we are. But then I think I should as its not for me but for DD.

Yay! For a first independent step smile

everydayaschoolday Wed 14-Aug-13 13:57:56

Oops, sorry, I see he's 3.5. So reception next year. Is he starting nursery this sep? I think a statement would also be applicable for a nursery setting.

Thereonthestair Wed 14-Aug-13 15:10:30

Hi. he's in nursery already (has been since he was 8 months old) and the nursery goes into a pre-school. they have funding for him (25 hours) but that is under the early years budget so won't acrry through to School. We would previously have been ok as it would have been medical hours, but with the rule change no-one knows whether it still will be..

In respect of the DLA, do it. As you say it is not for you. We are lucky DH and are are both in well paid jobs and by any standard we are wealthy. We still applied for and got DLA for DS and spend every penny and then some on him. Each private physio session we have costs £70, specialist trike cost nealry £500, then we have bought blocks of therapy at the Bobath centre, had private SALT, bought a walker for our house when the NHS wouldn't fund it, piedros, train fares to GOSH, spent money on parking, petrol etc etc etc. We spend far more than we receive although we didn't to start with. It was only after I added it all up at the end of the year I realised we spent about £6,000 more than we received last year. Now We can afford that but I would hate to think what would happen if we couldn't. If you don't spend it yet just save it until you know what you want with it.

everydayaschoolday Wed 14-Aug-13 19:11:42

Thank you. We're very lucky in that we have had great provision in our area (ie piedro boots, walker plus much more) but I have bought some stuff to make life more accessible/safe for DD like dream tubes for her bed. Yes, we'd like a specialist trike too, and one of those ride-in trailers for bikes like the ones at center Parcs. So I can think of routes to spend the money on her if I think about it.

DD is not in nursery yet and we were thinking of having a look around after we get back from ours hols. We're 'sunning it up' in bonny Scotland just now! If you don't mind me asking, how did you access the early years budget for nursery funding? And, do you pay normal nursery costs and this funding covers the 1:1 support? I'm a bit clueless about our next step (into education).

Thanks for your advice smile

childcarehell Wed 14-Aug-13 22:01:56

Just a hello, I'm in a little limbo at the moment as DD's consultant has gone on a month's holiday before giving her MRI results! I'm trying not to notice things and wait, but you end up picking up every little thing like a crazy lady-

I put dd on a swing with a friend today as she's (at nearly 9 months) sitting supported and it highlighted her balance. She wobbles so much the swing then wobbled against her movement which she struggled to compensate and she was terrified. It showed just how off her balance is, even though she's strong enough to sit for periods and compensates for her wobbly movement. She's trying to grab things too but makes 5-20 attempts grabbing at/ around an object quickly before it ends up in her palm then when she holds it she flicks her wrist and stares at it. She has though stopped the wild flinging of things unintentionally so there's progress. Her arms are still a bit tight, her hands don't lift above chin height and her legs don't straighten in a sitting position. This makes it harder to balance due to the small area of contact, her heels are always at her groin, so she does pretty well sitting.

She's rolled a few time front to back this week which is great. Standing with support now involves both feet down, though still weight bearing on one side with the other foot on tiptoe and turned. She's got strength but seems to have poor coordination, even holding things in her palm never involves all her fingers closing round the item, some under some over.

I'm feeling as she grows it seems less likely that all this is on the normal range to be honest. I spoke to the consultant's secretary who found her report, but she said she couldn't share it and took my mobile number for him to call on his return. This worried be a bit, I expected to be told to wait until the appointment.

everydayaschoolday Thu 15-Aug-13 08:57:03

Hi childcarehell. Just hand holding till your consultant comes back. Please try not to pre-empt the consultant, just enjoy your little one over the summer. I know it's harder to do than to say sad

everydayaschoolday Thu 15-Aug-13 09:00:42

Sorry, I didn't mean for that to sound flippent. She sounds as though she's doing lots of things well like rolling over. All kids are different, so it's difficult to know what the typical range is really. Still hand holding. smile

melmo26 Thu 15-Aug-13 09:13:22

Hi childcarehell our dd is 5 months old so not a lot of advice here but also a hand hold. When dd had her last mri consultant said she would call to tell me results, a week later I called her! I honestly don't think these consultants realise how important these things are.
Maybe call again and ask if another paed can tell you the results? Worth a shotsmile
Also congrats to all the milestones she has made. She might be slightly delayed or wobbly but sounds like she is making great progress.
Whenever you need a chat the ladies on this thread are brill smile smile

childcarehell Thu 15-Aug-13 10:31:20

'Ve been quite angelic waiting, nearly five weeks until I rung to find out he was starting a four week holida! -managed to put it out of my mind for six weeks but she's changed so much doubts are creeping back in. My main concern isn't the delay but how tight her arms are, they were better but don't lift up at all now. She got kind of locked in the swing as her arms pressed over the bar so she was stuck rigid.'

muchadoaboutsomething Thu 15-Aug-13 11:50:59

Hello all. Just namechanged from thereonthestair as I told a colleague my name on here (there was a reason I did that)

Everyday - phone to get the form, then they will backdate the claim from when you called them so long as you fill it in within I think 6 weeks. Then take your time and some chocolate/cake/wine as appropriate and fill it in on your worst day. Any questions please ask. If you pm me an email address I will send you my DS form if you like to give you an idea but everyone just uses the cerebra guide. DS has a child's bike seat on both DH and my bike with no adaptions, and it's fine, but we are now thinking about the school runs for next year. Anyway believe me you'll spend the money.

Childcare do you get on well with the consultants pa. If so try her/him. They can be worth their weight in gold once you know them. Also can you get an email address. We have had emails from 3 different consultants who have been on holiday this summer, so worth a try even if it is only to fix a definite call/meeting when she is back.

Also given what you say about arms/grips have you got an OT at all. If not start asking for one. If you have chase them up for an appointment. They will be able to help with what you can do to improve balance/co-ordination even at home. I am afraid I am rubbish at arms as DS is affected in his legs but they should be able to give you some idea of exercises etc you can try. If DD will try the swings they are good for balance even if she is wobbly. The other stuff sounds ok though and as if she is making progress. And even if the MRI does show damage it may not make that much difference to what you can do and certainly if you can manage it I think it is helpful if you can avoid seeing it as that sugnificant. It won't chaneg DD, it won't change how she is treated and what help she needs, it may just mean she gets it sooner (especially if you chase it up). I have never had an MRI for DS although may now do so for an SDR assessment.

buffonie Fri 16-Aug-13 00:22:23

Been a lurker for a while & just thought I'd post for some advice :-)... DD is 2.9 yo,.. has spastic diplegia... just recently had her first round of botox. .. we have been given a little reverse k qalker for her to practice taking steps. .. of course we have to lift her up and place her in. But she is having none of it & wont go near it. Any tips on how to get her interest ed in it? I work ft & find it hard to find the time to fit in the physoi let alone argue with her about doing it :-( am still getting used to all this and cry myself to sleep most nights worry ing she will never walk & what sort of life she will have & what if I die young who will look after her... I'm so sad all the time & this not wanting to go in the walker is only making me saddes.... any tip advice please :-)

muchadoaboutsomething Fri 16-Aug-13 07:21:02

Buffonie. We had the same for ages, it is fairly normal. In our case we found making the walker fun made a difference. So ds walker is covered in fairy lights, stickers and has a basket on the back to carry things.

I also work basically ft. Technically I work 0.8 of a full time role but I have a very full on role and 0.8 works out at about 45-50 hours rather than the old 55-60 I used to do. We fit the physio in as best we can. Some days lots, some days not so. We decided that the only way this would work for us would be not to stress, as we can only do so much without having a breakdown. I am not saying that's right but we need to do the best we can for ds and going mad in the process is not doing that (in our view).

We also found fighting ds was awful, and we didn't win. However when were could be patient, it was a different story. And we did so to start with we got ds using the walker a few steps, bedtime went out the window but he used it. Finally we also found ds would use the walker much more anywhere else so shops, swings etc were much better than homes.

dev9aug Fri 16-Aug-13 07:25:04

Buffonie We use behavioural strategies to make sure that whenever anything new is introduced, it is done with as little fuss as possible with the least expectations. I don't know your little one but you can use her interests. Ideally for this anything that comes in parts would be brilliant. for e.g a small 2/3 piece puzzle or something like this..www.woodentoyshop.co.uk/melissa-and-doug-classic-vehicles-sound-puzzle.html

You can start off by just handing her pieces and then maybe keep her favourite one just a little distance away with the walker in the middle. Initially just get her used to the walker so she could use it to cruise to the piece and once she starts tolerating it then increase the distance and just guide her in position in the walker and support her completely when walking(This is important, lift her and walker to get to the object if you have to. This is to make the connection that using walker gets me my favourite things. Whens she starts to feel comfortable, then withdraw support and eventually increase distance to the objects.

I have used puzzles here but you can use anything she likes, light toys etc.. Hope that helps. With regards to the second one, I think we all feel the same way to some extent or another. sad

everydayaschoolday Fri 16-Aug-13 20:34:29

Hi buffoni. We had the same issue trying to get dd to use the k walker. The advice given sounds really worth a try. Again, like you, we too worry for dd future, especially as we are 'older' parents (I'm 40 next year and dh is 43). We take one day at a time, celebrate any little milestone and try to make all our time together fun - even physio and OT (I work ft too and it's hard). Welcome to the thread, there's a lovely bunch on here who have helped me loads. flowers

everydayaschoolday Fri 16-Aug-13 20:38:18

Thanks muchado. Have seen the cerebra guide and think I should be fine flowers. If I get stuck I'll give you a holler grin. Thanks again for the steer.

buffonie Fri 16-Aug-13 22:12:54

Thanks everybody for the really great advice. I will try to bling up the walker to make it more attractive. .. as you suggested Muchado... & you're right about the no point in arguing with them... if A has made up her mind about beibg too tired for physio. .. there is no winning with her.... I work about 50 hrs per week also so I hear you about "not stressing" ...

Dev8 thanks for your tips also. .. used them this evening... tempted her with a balloon. .. she took 5 steps (with us moving & guiding) to get it... but that was all she would do but it was progress :-)

Everyday thanks for your help too... I was 40 last year so I think your idea to try take each day one at a time Is ssomething I'll have to try :-)...

Thanks everyone for the warm welcome! Have read through loads of post & feel really encouraged :-)

childcarehell Sun 18-Aug-13 21:54:28

thank you muchadado,

dd as yet has nothing, which is something I plan to ask about. At the time of her appointment I was less concerned but as time has gone by she's changed and the developmental gap is a little bigger and little habits more obvious.

The strangest thing is she seems tigthter and tighter, it's not a constant at all. I was only concerned about her left arm, then her right a little and now it seems harder to nappy change. I know some resistance is choice, but it's often when she's fully engrossed with a toy in her hands that her legs are stiff.

muchadoaboutsomething Mon 19-Aug-13 10:21:22

when she is engrossed she is probably concentrating and that may well put more strain on other muscles as she overcompensates with what she is managing to do. with DS its his legs which are affected but his thumb goes in when he is standing as he forgets to put it out. He can always do it if he tries but his body sort of tucks it in and that is just part of the muscle pattern.

Children tighten up as they grow. has she just had a growth spurt, that might explain it. If not has she been ill (again that makes a difference to DS).

Finally while you are waiting does your DD like water. If so take her swimming, swish her about, move the muscles in the bath to get a less tight movement in. Water is your friend especially for little ones.

inhibernation Fri 23-Aug-13 10:46:46

Hi everyone. I skim read to catch up. Welcome all newbies smile Congrats to sneezecakemum's dgc :-) - not sure if I congratulated already! It's been rather hectic here as usual. Dd had horrific chicken pox and had to be hospitalised on her birthday. She got cellulitis and needed IV treatment. It was very frightening :-( Lots of marks as she was COVERED - just hope they fade. We're off to St Louis for SDR soon. Thereonastair - no we didn't try halliwick yet. The only one near us is mostly for adults and starts at 8pm.
Your ds's standing and independent step is fantastic! Dd couldn't stand when she first started walking. Standing first is far better. Re toilet training - dd was 3. So was ds (doesn't have CP). Boys are often later I hear. Sounds like ds will get there when he's ready. Re DLA. We applied. It enabled us to get a blue badge which means we can do more things as a family. All of the money goes on dd and her CP related needs (and then some - as thereonastair said!)
A big hug to everyone struggling right now - please do use this group for support x

sneezecakesmum Fri 23-Aug-13 21:12:18

many thanks for that. DGS2 is racing ahead with his milestones while we look on in wonderment. We can't get how EASY it is after seeing how hard it is for DGS1 to do the simplest tasks.

Wishing you the best for your journey and the operation. I'm sure you will have a wonderful outcome smile

Mn campaign says bringing up SN children is 3 times more expensive. second hand trike £300, chair £300, etc (privately funded) so yes, I would definitely agree with that statement!

inhibernation Fri 23-Aug-13 22:00:05

Thank you smile Just need to get anxiolytics for the plane journey!

Agree re expense if raising a child with SEN. Private physio is massively expensive let alone the equipment.

Glad dgs2 is progressing well. How is dgs1 doing?

inhibernation Fri 23-Aug-13 22:00:31

of not if

sneezecakesmum Sat 24-Aug-13 10:19:11

DGS1 is doing well considering all his problems. He started a medication called benzhexol which is for dyskinetic children more than spastic ones and everyone has seen small improvements which we are building on. There is so little for his type of CP. SDR, Botox, baclofen are no good at all so its a step forward with the med. He is 5 shock in September and going to a MS school where they have put in place some wonderful facilities, but its nail bitingly scary wondering how they will cope with him.

Is your DD 4 now? What age is best for SDR? Not for us but just interested. I've read a study that long term SDR remains a positive thing smile. We bought a special tomato jogger off a lady whose DS had SDR in St. Louis and it was amazing for him smile

inhibernation Sat 24-Aug-13 11:43:23

Sounds promising re medicine smile

Re SDR - St Louis team say early SDR is best (2-4) but in the UK opinion can differ even though the NICE guidelines say from age 3 (it may have changed to 2 now).
I'm with St Louis. I can see how delaying it can increase risk of hip subluxation occurring in the meantime & contractures to muscles that will then need lengthening. dd has a 20% chance of needing percutaneous lengthening if we do SDR now but much higher if left. But even if she does still need it at least we're not looking at multiple procedures.

Summerdaydreams Sun 25-Aug-13 19:00:04

Hello, I've been a lurker for a while and never posted in a forum before so hear goes. Dd is 16months, no official diagnosis but it certainly will be. She has now leant to sit independently which is amazing but me and her have hit a bit Of a wall I feel. Both of us are frustrated. I feel guilty for feeling so. Need some words of wisdom please from anyone who can help.

Whenever I sit her down, she turns onto her tummy and commando crawls (can't 4 point crawl that is what we are working on with physio) also she can't get from lying to sitting (again we are working on this) and she moans and moans and moans. So I help her sit back again and then the same happens over and over.

Also when in side sitted position she is twisting to me, grabbing my top and pulling herself to her knees. I think this is good?? but am worried by letting her do it she is creating a bad habit as she does have a tendency to extend her legs. The same with the commando crawling, but how can I stop her?? Also when working on 4 point crawling she is holding her weight on her arms but then has a tendency to kick both legs out and goes flat on her face confused

Our physio is away for 3 weeks so can't get hold of her for advice.

Any thoughts?

sneezecakesmum Sun 25-Aug-13 20:06:10

Buy this book immediately grin

teaching motor skills etc

It is extremely good and goes from babies to older children. Tons of step by step photos that will show you exactly how to transition your DD from lying to sitting. Loads of advice and explanations in a parent friendly and non scary way....unlike the Internet!

In the crawling I would get down with her and hold her in a curled up way to prevent the launching (know what you mean there). The book explains it much better than me.

Vampclaudia Mon 26-Aug-13 10:25:08

Hi, my son jack has just been diagnosed with cerebral palsy 2 weeks ago and even though we knew it was a possibility it's still devastating.
He was born exactly 1 month early via emergency c section due to being in distress, when he went to neo natal it was discovered that he had had 2 bleeds on the brain with the right side being the worse.
He's 15 months old now but he isn't sitting up on his own nor crawling. He can roll over and he'll happily roll around the living room making silly noises.
I'm struggling to get my head around the fact that no one can tell us if he will ever sit up, walk or talk. We just have to wait and see which I can't stand. He's been having physio once a week which does seem to be helping.
I'm trying to be positive but it's so hard. My best friend and my cousin both have 10 mth olds who are crawling and now trying to walk and it breaks my heart. I have no idea what to expect and he is such a cheeky chap, constantly smiling and flirting with people.

muchadoaboutsomething Mon 26-Aug-13 12:50:58

Hello. Welcome and please understand that we all know how you feel especially with regards to seeing other people's children.

I take it from your post that he had a bleed each side? Have they said what type of cp. we will all try to help if we can. Has you paed talked you through the diagnosis, even with lots if we don't know? If not go back with questions.

What support have you got in place. You have physio, anything else yet? Portage, ot, slt? If there is a chance your ds won't talk easily, try to get the help in as soon as you can. Has anyone told you about special needs play groups in you area. If not some people love them as they are less "lonely" than some other places iyswim.

Get the book sneezecake linked to. Even if you don't open it yet (our copy didn't come off the shelf for a while as I wasn't ready).

muchadoaboutsomething Mon 26-Aug-13 12:52:06

Oh and apply for dla if you can face it. You can get it for little ones, and you may well find the money comes in useful for things in the future.