Hiya

I can totally understand your shock - it was the same for us - to kind of know that something wasn't right but have no idea what the problem was and to be entirely shocked when the words Cerebral Palsy were mentioned. My little boy Tom is 16 months old and was diagnosed in April at 11 months. Until then we were told he had colic! We just knew that colic didn't explain the stiffness in his muscles nor his inability to sit unaided or roll. He is a twin and his sister was developing 'normally' so we had a benchmark to compare Tom against (not that we comapre them - but the difference is striking).

You need to give yourself time to go through the range of emotions you are bound to feel - acknowledge and talk about them - don't deny yourself that. You have every right to feel what you feel. There are so many unknowns with cp - no-one can tell you what the future hold as every child with cp is different. Tom is affected in all 4 limbs and his trunk control so we have no idea whether he'll ever manage to walk unaided (in all honesty, maybe not) - I ask myself occasionally whether he'll ever ride a bike, marry, have kids etc. I cry over the fact he'll probably never run, feel the wind in his face as he charges about with his mates. But to dwell on those worries negates the joy that I get from just seeing him develop, enjoy his day, do new things, laugh with his twin sister and older sister, enjoy a good cuddle and a nice kiss and make a big mess of a chocolate biscuit.

There's no doubt that cp sucks - never in my wildest dreams did I ever suspect that my darling little boy had suffered a brain injury. He was born at 32 weeks but nothing bad happened at the birth, nor in special care afterwards. We'll never know what happened. But something happened - and he's got a brain injury to both sides of his brain. That sucks. But we've found Conductive Education to be a great help plus regular physio. Talk to all of us lot on here as I find that helps. Scope have loads of info online plus they might have a regional rep they can send out to you so you can get some advice on what is available locally and talk through your worries. You might also want to think about getting an application in for Disability Living Allowance and possibly Carers Allowance too - and see if you can get a Blue Badge for the car so you can get into a disabled space nearer to where you want to get to.

I am here if you want to chat

Maria x

hi im new to this site but in desparate need of advice at 7 months old my son suffered hypoxic brain damage whilst in hospital. as a result he has been left with CP in 4 limbs no head or neck control very high tone and is registered blind my main problem is that i cannot get him off my knee he goes into extension and becomes really distressed when we try to seat him off the knee we have tried new equipement but nothing works he needs constant movement, he is 2 now and i am really struggling physically has anyone experianced this, any ideas kellyx

hi there my baby is 8months and has possible quad cp. Because he is so young they dont want to properly diagnose Jack. But he extends when he gets upset. I too am worried about when he gets older and stronger how hard its going to be. Is your son on any meds? xx

Hi Steph

Tom extends too - when he is upset, when he is excited, when he is wanting to do something badly (like a sort of 'intention' thing), when he vocalises... It's hard as this extension is really unhelpful to him as it throws him off balance and makes sitting really hard for him. It has got better though - he is becoming more aware of when he does it and has started gaining a little more control over how far back he throws himself when he is sitting. He by no means has a lot of control but I have noticed that he's starting to be more able to control it to some extent. Tom isn't on any meds but we are learning ways of stopping him from extending just by how we hold him - breaking the tone by bending his legs under at the knee stops him from extending so much, especially when he's upset. I've also learnt better ways of picking him up so that he comes from laying to sitting first before I pick him up and carrying him on my hip so his legs are bent round me so he's actively participating in being carried rather than coming up to me stiff like a board.

Your little boy looks so super-cute in his picture!

Maria x

Hi yeah jack will sit on my knee and all of a sudden go back so quickly, but i did say to my physio when he gets bigger hopefully control his emotions better and learn how to relax. Ah thaks yeah he is sooo cute and a happy little boy until i leave him !!! We take jack swimming in a warm pool which helps relax him

xx

yes my baby is on meds he is on baclofen & reflux meds but ph study shows reflux meds not working recently changed hope this will make him more comfortable. Sams tone is very high i can bring this right down with movement and sitting on my knee the problem is he wont let me put him down and if he does he requires my constant touch / movement to keep tone down so i literally cant move, he wont sit in any thing and hates going in the buggy although i love him dearly i feel like a prisoner in my home i wondered if other children with this condition react the same and if any one had any stratagys which work to over come this problem???

Hi

We were in the same situation with Tom for the first 9 months of his life - except that even holding him didn't stop him from crying or take away the discomfort, it was just that he cried even more if we put him down. He SCREAMED in the car seat (and got so stressed that he would sweat and all his clothes and hair would be wet through) and he didn't like being in the pram either. To be honest I'm not sure how I got through those months - because I had twins there were times when I had to pass him over the fence to the neighbour so that I could feed his sister or change a nappy. all of a sudden at about 9-10 months, it seems to get better. I don't even really know what the trigger was.

Have you thought aboput giving conductive education a go? Scope would be able to advise if their is a 'School For Parents' near you. Tom has only been going a couple of months but it seems to really help him and the folks that teach there are hugely knowledgable about the effects of cp and may be able to give you some help with this issue. Just an idea. Even if it didn't make things any better, you would at least be in good company while you were there as all the parents have kids with cp.

It's so hard to see your child like that - and so hard for you as his mum to live life the way you would like to with these extra constraints on you - I really feel for you but I can tell you, from my experience anyway, that it does get better.

Love

Maria xx

Hi

My son is 22 months and had quad cerebal palsy. Thanks to medical negligence on the part of the NHS.

First 9 months was hell as he hated the pram and car seat, he was constantly having spasms and I was angry and shocked. It does get better with time. My tips for managing - 1) Contact some moms in your positition, you can find me on facebook at Sheema Luca if you need to chat 2) Read some books to give you inspiration, hope and help 3) Take care of yourself - sleep, emotions, fitness, laughter and food 4) Speak to close friends 5) Avoid situations/ people that upset you, you don't need to be a martry 6) Focus on the small and beautiful moments with your child 7) Take each day as it comes as you don't know what the future brings eg; new cures, techniques, you child could end up doing or being anything 8) Look into the Scotson Centre it really does make a difference see http://www.advancecentres.com/intro.php 9) Massage and lots of stimulation is important.

You are not alone and the fact that you are posting on here looking for help and advice makes you a brave trooper:)