When do i?

Tripletmom
Tripletmom Online Community Member Posts: 37 Listener
edited June 2014 in Families and carers
After watching the news last week, and seeing a family raising money to get there 5 year old daughter to america to have the op to make her walk. It got me thinking, at what age do you think ok we will give it ago?

Who has that say? the parents or professional? We have been told our son who is 19 months old wont walk? he has cp in all four limbs and doesnt hold anything,roll,crawl. I am trying everthing possible to help him, but just thinking out loud i wondered what age do you think, right he isnt going to walk lets go for it??

Thanks Kelly xx

Comments

  • twinmom
    twinmom Online Community Member Posts: 14 Listener
    Hi Kelly,
    I've identical twin boys who just turned 2 in August. One of them, Eoin, has spastic diplegia. I saw a similar story on a morning tv show last week, and I did a small bit of research into it. Like you, I will try everything. Supposedly, the best age for this surgery is between 2 - 7 yrs, and there are certain 'guidelines' that the child has to meet. It is definitely something I would consider, but I personally would prefer to wait until Eoin is maybe 4 or 5, and then we'd have a better idea of where he's at. I plan on mentioning it to the paediatrician next week to see what she has to say on the matter.
    Take care,
    Una
  • ScopeHelpline
    ScopeHelpline Online Community Member Posts: 204 Contributor
    There is a factsheet about Selective Dorsal Rhizotomy on this website you can find it at:

    http://www.scope.org.uk/help-and-information/z-therapies/selective-dorsal-rhizotomy

  • JDWilson
    JDWilson Online Community Member Posts: 88 Listener
    They are also doing SDR in BRISTOL. Worth knowing IF this is suitable for your child.
  • Nat_Walker
    Nat_Walker Online Community Member Posts: 1 Listener
    Hi Kelly,

    My daughter has two friends (both with CP) from her school that have been to America for SDR. I have looked into it for my daughter but as yet she doesn't meet their criteria. It might be helpful to visit the St Louis hospital website and read through their section on SDR, it gives you a good overview of where your child needs to be with their gross/fine motor development before you can consider SDR.

    Hope this helps.

    Natalie

    P.S one of her friends is currently there having the op this week, the other went about 9 months ago and the results have been AMAZING to see. Xx
  • Tripletmom
    Tripletmom Online Community Member Posts: 37 Listener
    Hi all,

    Sorry for late reply been very busy not long moved house so all new professionals to meet etc.

    Una - I think that 4/5 is a good age, i am going to mention it to at our next meeting.

    Nat - Will have a look at that thanks

    Thanks all for replies, really going to read on things xxxx

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