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Cerebral Palsy- Just diagnosed

Hi, I know there was a thread on here back in August but I wanted to post this. My son was diagnosed on Tuesday with mild cerebral Palsy down his right side. He has been in and out of hospital since birth (born at 35 weeks, 2 weeks in SCBU, hernia repair 3 months, secondary op 5 months, reflux, feeding probs and late to do everything- roll over, feed, sit, crawl etc.) He still can't walk but can pull to stand. His right arm and hand is less affected than his leg. The muscles are tight in his leg making his balance awkward and the same with walking- although he can walk with support.
The diagnosis has been very quick and was quite sudden as we have seen improvment recently in his movement. I left the hospital in a bit of a daze and am not sure what to expect next. I know that we will have an appointment with the physio team but who else will be supporting us? I'm aware of CP etc and know that no one can say what is achievements and struggles will be but I am wondering what happens next after the diagnosis. They are that sure of their diagnosis that they will not scan his brain- which is fine with me. So I was wondering if anyone else has had the same experience and can tell me what to expect.

Replies

  • hi ya hun ive got a litle boy who is 4 next month he has cp moderatly he still cant walk properly hes fed through a tube in his belly and goes to a special school. depending on how bad the cp is they will rehabilitate him useing physio and speech and lan occupational theripy and play theripy my litle boy is been assesed 4 botox in his legs to help with his scissoring (legs crossing) he has splints to help him stand my little boy didnt start trying to walk till 8 months ago it is hard but in the future they may do an mri scan of ur little boy just to asses where the braindamage is u will seee a hospital paeditrician and a community paedetrician there will be alot of ppl in and out of ure life and u cud also make a referal to a disabiklity social worker who will make sure u r getting all the help and support u need i have 1 and they r so nice and helpfull cos haveing a disabled child isnt easy u need to accept help where u need it cos its ok whilst he is young but wen he gets to tys age it starts gettin harder depending on the sort of equipment u have to have wen they told me ty had it they told me hed be a vegatable cos he wasnt even doing anything hed just lie there stareing at the cieling dribbleing it was awfull id look at him sometimes and it was like there was noone there but now he laughs smiles calles me a gay throws his toys at me and even tryes to eat food just take my advice dont listen to negatives like ure son wont do this and that its not up to them and they dont have a crystal ball and ur baby willl do what he wants and is ready to do in his own time and he only has it mild so chances r he will do fine and u might not even notice he has got it gud luck hun 4 u and ur little baby its 1 thing copeing with a baby who is in scabu 4 weeks but another thing been told there r probs after ty was 10 weeks prem so i no how u feel reading ur post sounded as if i just writ it myself it was so famailiar xxxtc hun
  • Hi Tinkerbell1183,
    I just wanted to express my thanks for your thoughtful and helpful reply- at least I can get an idea of what to expect I'm glad Ty has proved the Dr's wrong image I look at my baby and can't believe something is wrong- he seems to be doing so well and I hope his adventurous nature keeps his progress going. Thanks for the support- it's good to hear from someone who has had a similar experience xx
  • Hi,

    Just wanted to say that a friend of mine has CP, when they were born there mum was told not to ever expect too much from him, send him to a special school, that he would never ride a bike, drive a car etc. She made the decision to send him to a normal school as she realised although he had problems with his speech and his shakiness made writing difficult that he was bright and deserved the chance. He learnt to ride a bike, eventually passed his driving test for an automatic, went to University, and now has his own house with a tenant and is doing really well for himself. CP is obviously different from person to person but I hope you find it encouraging to hear about someone who is managing to do everything they were told they wouldn't be able to.

    Take care xxx
  • Hi,

    Just wanted to say that a friend of mine has CP, when they were born there mum was told not to ever expect too much from him, send him to a special school, that he would never ride a bike, drive a car etc. She made the decision to send him to a normal school as she realised although he had problems with his speech and his shakiness made writing difficult that he was bright and deserved the chance. He learnt to ride a bike, eventually passed his driving test for an automatic, went to University, and now has his own house with a tenant and is doing really well for himself. CP is obviously different from person to person but I hope you find it encouraging to hear about someone who is managing to do everything they were told they wouldn't be able to.

    Take care xxx
  • Hi Joanne & Brood,
    Sorry this reply is late- I only just checked back on here tonight. My little boy Ed has been well known to the hospital since birth and we have attended lots of out patient appointments as well as follow up appointments at the day unit. Since birth I have taken him to hospital on average twice a month! It was at a developmental check with my health vistitor that first started the ball rolling- I said I had concerns about his development, that he was more than one month behind (he was prem) and that I thought he was at least 3 months behind. She noticed asymmetrical legs- he had a bulge on one side and not the other and also at the front. She also noticed that he dragged his right leg whilst crawling and also whilst holding my hands to walk. We were referred to our GP, who then noticed the stiffness in his hips, she referred us to the Dr we were due to see as an out patient (he has been under the Dr since SCBU days). The Dr felt increased muscle tone in his leg and arm, stiffness in his hips and sent him for x-ray and then referred him to the community paediatrician because he was 1 years old. Then two weeks ago we saw the commmunity paed- who diagnosed mild CP. Despite this diagnosis, I also have to agree with LizB it really is down to the individual child. Ed could not crawl before Christmas, only learnt to sit securely at 11 months, did not roll until 9 months- now he crawls and pulls to stand. He can walk holding onto a walker- he could not do this before xmas. His development has come on so quickly. He too has developmental delay which is part of the CP.
    I would go back to the Dr and ask for the community Paediatrician to see your child or someone that specialises in the diagnosis of CP. Ed has been diagnosed without an MRI scan. I also declined the MRI scan- I don't want a scan predicting what my child can or can't do- my child will tell me themself in their own way. I think what led to the quick diagnosis is the stiffness in the muscles and the incerased tone and also the reflexes. Ed is also now receiving physio and we have a referral to see someone who specialises in children's feet to see whether he needs any intervention to help him walk.
    Hang on in there and I would suggest you keep pushing. I think I have been lucky with my local hospital- I can't fault them in any way they have been wonderful. For me, I'm not focusing on the fact that Ed has CP- I'm focusing on what he can do. I wish you all the best.
  • I work with people with CP. There is a website you can register with and they should be able to help you http://www.scope.org.uk/response/
    Anna

  • Hi
    I'm new to this site and board.. so not an expert at all
    I have a son who is now for yes old born at 30 weeks and not diagnosed with cp untill 18 months by email!!
    long story was living overseas at the time. moved back to the uk for help and support which has been excellent.

    My son has left sided cp lower leg is more effected he walks on tip toe and needs physio everyday combined with the hospital and myself.
    As soon as you meet with your team he will be assessed by physio. occupational therapist, speech therapists, neurologist. orthapedic surgeon etc and they will help and support you as much as they can.
    cerebra is another good website.
    My son is a wonderful , very active little boy and is in school with no struggles apart from falling over most of the time !! but we cope..
    Sorry to go on..
    hope this helps
    V :\)
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