Cerebral Palsy
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Second opinion for AFOs

MattMMattM Member Posts: 3
edited May 2014 in Cerebral Palsy
Hi All,

My 10-year-old daughter has worn AFOs for many years. She has always been pretty difficult to cast and fit for AFOs as she is so tight. This is becoming an increasing problem as she grows and she is increasingly getting sores on her feet from the pressure of the AFOs. She really needs to use the AFOs for walking as they provide much needed support to her feet. Her current orthotist has said there is "nothing more he can do" and we should just let her walk less or go for surgery. We'd like to get a second opinion before we go for either of these options. We really need someone who has a lot of experience with difficult to cast / fit children as we are already at one of the major children's hospitals. We live in the North West of England but would travel if needed. Can any of you recommend a good orthotist we could go to for a second opinion?

Also, we believe that some of the problems are being caused by poor manufacture of the AFOs. If you know who manufactures your child's orthotics, can you tell me which company it is and your experiences of them?

Many thanks

Matt

Replies

  • nicebootsniceboots Member Posts: 196 Pioneering
    Hi, I had this problem when I was a child, so I had regular serial casting, which meant being in casts for six weeks at a time once a year to lengthen the muscles. It really helped get my feet into a better position, making me easier to cast and my afos more comfortable. I also had botox in my calf muscles which really helped too.
    Have you spoken to your daughters dr or physio to see what they can come up with?
    chris
  • MattMMattM Member Posts: 3
    Hi Chris,

    Thanks for the reply. My daughter has had botox on several occasions which helped a lot at the time but is no longer effective. We have spoken to the orthopaedic consultant and physio and they agree with us getting a second opinion at this point. (The only thing they can otherwise suggest is surgery). We could ask them to see who they would recommend for a second opinion. However, I personally find it very useful to have the views of other parents / patients in cases like this as they are the ones who have first-hand experience of the medical staff. I'm hoping to get some recommendations from other parents / patients of particular orthotists to try.

    Thanks

    Matt
  • NoahNoah Member Posts: 430 Pioneering
    edited September 2014
    Wish I had spotted this post earlier, how are things progressing? I have had a private consultation with the London Orthotic consultancy which was very successful, I was then able to take the report to my local NHS orthotist who made the correct AFO's. The big advantage about going to LOC is they have access to a variety of Orthotic devices, most made in house, some of which are not yet available on the NHS or perhaps only available dependent on where you live. It may be worth looking at something called a SAFO, it is made of silicon so not as likely to get the sores. Although impossible for me to advise directly, you would need a professional to help you make the final correct decision. All the very best, please keep us posted. Happy to help and answer any questions where I can. You may find some of my other posts on the forum helpful.

    http://www.londonorthotics.co.uk/?gclid=CJLq2Zml4cACFSEcwwoddDkA8w
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