Cerebral Palsy
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Can they tell so early???

TripletmomTripletmom Member Posts: 37
edited June 2014 in Cerebral Palsy
Hi, i am a mom to one year old triplets the youngest with CP, he is a bad sleeper and been in and out of hospital with insomnia. we had to see a new consultant due to the old one is out our area?? the new consultant has never seen my son before and didnt seem to know much about him? ( Even thou she has his notes from birth in front of her?) i feel like my son has improved with his neck muscles over the past few weeks, but the consultant said " oh he has a weak neck and he looks like he has 4 limb cerebral palsy and i dont think he will walk? Do i believe this or is it too early to tell?

Replies

  • renacahillrenacahill Member Posts: 145
    Hello. It is far to early to tell the outcome at this age. It is age 2-3 that the full picture becomes apparant, although problems are looked for with a traumatic birth or prematurity.

    My grandson had the former, and went from a 6 week old able to hold his head up and diagnosed at 7 months as spastic quad to a bit of a jellyfish, with a weak neck and trunk (both of which are improving gradually) he can hold his head up well now with no head lag.

    He takes a few steps in his gait trainer, and can sit provided he doesnt move too much or lose concentration. He is 2 1/2 and has gradually improved with lots of hard work.


    PS There are any number of parents told their child 'won't walk' and this has not been the case. Disability paediatricians seem to take lessons in doom and gloom!
  • sarahprattensarahpratten Member Posts: 83
    No - the consultants do not know for sure.Every child is different and the input from you can significantly change the long term outcome. However I would take this comment as a wake up call and do all you can to prove the doctor wrong. Personally I would recommend The Scotson Technique (see www.advancecentres.com) which are exercises which you carry out at home - having triplets will make it hard to find the time, but once you start to see the improvements it will be worthwhile. Advance also offer hyperbaric oxygen which is also likely to be beneficial. The sooner you start therapies the better as it prevents some of the negative changes from happening. Also a good cranial osteopath is worth seeing occasionally (Stuart Korth if you are anywhere near Tunbridge Wells).

    Best wishes,
    Sarah
  • Ellie&#39smumEllie&#39smum Member Posts: 5
    Hi,

    My daughter was diagnosed at 8 months as having a mild cp, i was then informed by dr's that they had no idea what the future would hold but she probably wouldnt walk and couldn't give me any help as 'she wasn't disabled enough'. I was absolutley furious, how dare they dismiss her when she hadn't even had a chance yet!

    Since that day we have made it our aim to support her in everything and anything she does and to take very little notice of what dr's say. My baby girl turned 3 last week and can hold 6 or 7 word sentances, she can walk short distances, loves to dance and sing, she has monthly OT sessions and Physio, walks with leg splints and attends a mainstream nursery. She see's her consultant every 6 months. She does have some behaviour issues and does bite and kick. She is starting to see a difference between herself and her younger sister but aslong as you never put any limits on what they aim for then they will never stop trying, Ellie is amazing and everyday we thank our lucky stars that we didn't listen to small minded dr's who couldn't be bothered to put in the amount of effort it takes, it is a lot of work but so worth it!!

    Trust your instincts, your his mum and you know whats best, take your lead from him, like i say if he doesn't realise he shouldn't be doing certain things then he'll never stop trying, his siblings will also encourage him by just developing in there own ways :)
  • TripletmomTripletmom Member Posts: 37
    Thank you so much for your reply, i had a pretty upsetting week after seeing the consultant but after reading such positive messages on here, its so right my son will only improve if we remain positive. i went to kidz in the middle (open day) in coventry last week and got to see other famailes its really helped.

    Renacahill - Glad to hear your grandson is doing well, i am now transferring my son to a new consultant as we have heard too many negative comments from people about the doom and gloom consultant:)

    Sarah - I have read about the scotson technique on here before, i live in the west midlands? I will read there website thou to find out more is there anything local to me?

    Ellie - Your little girl sounds like she is doing great, i am really hoping his brother and sister to bring him on and he gets into everything he shouldnt just like them:)
  • TripletmomTripletmom Member Posts: 37
    Hi All,

    Renacahill - Good to hear your grandson is coming on, what age did he lose the head lag?

    Sarah - Not sure there is a scotson in my area? i live in the west midlands.

    Ellie - Thanks for your kind words, thats one thing i am hopin his siblings bring him on, Glad to hear your daughter is doing well
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