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Just been diganosed with quad cp

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  • sarahlou5678
    sarahlou5678 Community member Posts: 13 Listener
    Thank you for your ideas!! i will try them!!! he has to like something!!! lol i will write them down!!! . Also i found some information on the net about brain damage and Autism, Just a question really did they say anything about Autism with your little one??Lewis has the cellerbrum brain damage and i read that that most chlidren with this dmamge normally ends up autistic by the age of 2, Iam prob reading too much really x
  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
    Probably best to stop reading stuff hon - you'll just worry yourself! My policy is to only worry if something actually DOES happen, not about things that might. We were told Tom might be blind, might have Epilepsy, might stop developing cognitively - none of these things have happened.

    Hope you are all having a good week xxxx
  • sarahlou5678
    sarahlou5678 Community member Posts: 13 Listener
    Yeah you are right!!!! cross that bridge when or if i come to it!!! , Hope u all have a week too!!! i have a week off so its been nice, Lewis has starts nursary this week and he got on really well!! phew lol xx
  • ShantellElla
    ShantellElla Community member Posts: 1 Listener
    Hi All

    My name is Shantell and I have a 2 and 1/2 year old daughter with spastic quad cerebral palsy - I found reading your thread of posts interesting and decided to register to join as some useful advice.
    Ella was born of 26 weeks and head a ventricular bleed had hydrocephalus and needed a shunt - we new that risk of brain damage was high. She had very poor head control and on her early development assessment didn't have 'fidgety movement' which at this stage was a predictor that something was wrong. She crawled for fist time at 1 and half years, unable to sit or stand unsupportive. Thankfully cognitively she is at the correct level for her age.

    She just started main stream nursery place, specially funded and attends 3 hours a day which she loves. Like the rest of you I was so worried that she will get trampled or run over by the other 2 yr olds on bikes and trikes. She crawls outside and wears a full waterproof suit so she can enjoy the outdoors with rest of kids, she can walk if you old her. She has a standing frame but not a walking frame as yet, uses splints as she tip toes, she has a lacra suit as part of a 3 month trail that she is taking part in. She has been a participant at bobath for their staff training and we paid for 12 sessions privately as our PCT/CCG does not fund it and also do a weekly conductive therapy sessions.

    My question is - when did your kids start using a walking frame and how was that decision made?
    Ella has spastic/tight muscles - has anyone's child had botox and how did it go?
    One of you mentioned a trike from mothercare - Ella's legs get tight and stuck - did your child have this problem?

    Thank you - all you input and advice will be appreciated.
  • mollymoobarnes
    mollymoobarnes Community member Posts: 107 Listener
    Hi Shantell

    Do let me know how you think the lycra suit is going - its something some of Tom's friends with CP have had but our physio has never offered one to us. I'm also interested in trying Kinesio taping too but again, our physio has never mentioned it (so I bought a book on how to do it and a roll of tape so we can have a go at home!)

    Tom got a walker at 2 because I really pushed for it. He has an able-bodied twin sister and was getting so frustrated at not being able to move about that he had started to bite her. We've still not got the right walker for him though - the Rifton Pacer that he has been given is too big and heavy and has too much support on it and when Tom is in it he either doesn't move at all or he leans right forward and pushes his legs out behind him instead of standing up and weight bearing. I'd like for him to try a Kaye walker but our physio isnt keen as she says its not enough support.

    We haven't had botox but we are using Baclofen to bring Tom's tone down a bit. Its a bitter/sweet solution though because whilst it brings the high tone down in his arms and legs it also brings the low tone in his mouth and core/abdominal muscles down even further making chewing harder, speech not quite as clear and sitting unsupported a little more tricky. Tom's right hip is being pulled from its socket by his tight hip adductors and his ham strings are tight too so we are on the waiting list for adductor/ham string release at the Evalina Childrens Hospital in London... I was hoping that they'd offer botox first but apparently they like to do surgery early to prevent hip dislocation.

    The Mothercare trike was no good for Tom either - he used to get stuck too! We got a Tomcat Tiger trike second hand for Tom and he loves it.

    Take care

    Maria xxxx
  • salbook
    salbook Community member Posts: 2 Listener
    Hi Maria
    I have read lots of your posts and wanted to day that they're lovely, informative and hopeful, and your Tom is obviously a star!

    I have an 18month old boy , Lennie who has quad spastic CP, and is just sitting, not crawling or standing.

    a couple of questions;
    1) We are starting conductive education next week, and I wandered at what age Tom started, and what your thoughts are on combining NHS physio and conductive education.
    2) At what age did Tom start playgroup/nursery, and did you receive funding for that? the new vulnerable 2's funding will apply to lennie in September 2014, but I am wondering how to access any free/subsided playgroup place before that.
    3) and at what stage did you find a walker useful/appropriate? lennie has had a standing frame for 3 months and is happy to go in it for 1-1.5 hours per day
    thanks
    and please anyone else reply who can offer advice/experiences, as I would love to meet people in Yorkshire with a child with CP!

Brightness