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

[inhibernation]

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

Let me know your thoughts.

TIA

mince pies. obv.

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

How funny about the parallel lives wentshopping and madwoman

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

dd2 has a purple wheelchair too.

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

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

Slowburner:

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

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

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

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

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

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

skewiff - thanks for your comment :)

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

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

Hello Slowburner,

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

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

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

So I realise how lucky we are with physio.

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

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

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

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

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

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

Hi all and welcome Mabs

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

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

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

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

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

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

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

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

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

I would like to ask a quick question:

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

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

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

I just don't know where to start.

Thank you.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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