Advice?

My daughter has had fittings for a prosthesis she has her own foot so its an extension prosthesis sge is getting, she goes crazy during the fittings and it looks so awkard for her to wear i just can't see how she will manage. She is 22 months, has anyone any advice on how i can help her when she gets the prosthesis next week as i am really dreading it.

Re: Advice?

We've been there. I think different prostheses make a BIG difference. I wrote about our experiences here ( http://www.pffd.org/node/160 and in the attached PDF). For us we found that a large shoe lift and a shoe that had high ankle support worked much better than an extension prosthesis. We did that for a while until the height difference was too large and we had to switch to a prosthosis.

One thing that upset me was our first prosthetisist told us we needed these special pediatric feet with energy return, and hardware etc etc. When we talked to a doctor and other, better, prostheticists, we found out that the prostheticist was incorrect. According everyone else, Energy return in prosthetic feet for kids as young and light as a 22 month old is useless. (IMHO the guy was just trying to add expensive hardware to make a $.

I think part of the failure was that the prosthetist was either not trained as an orthotist, or just not able to think outside of the amputation model. Because his ability to work with feet was poor it caused much pain and suffering for our daughter. Switching to an orthotist who had prostheticists on staff worked much better. Later we found a prostheticist who originally trained as an orthotist and she is amazing. Now our daughter is over 5 and does Karate in her prosthosis, jumps higher than some of her peers, bikes faster than I can run, and walks the balance beam.

Amazing

That is brilliant to hear it has given us a lot of hope. What type of a prosthesis is your daughter using now, we can only get an extension one which means its a straight leg. ~Well done to your daughter hope Caoimhe will be the same looking forward to hearing from you.

Re: Amazing

I'd upload some pictures/movies but I need to upgrade my computer first. So in the mean-time, here's a text description.

We had the shoe lift up until she was I think at a 3 inch difference. We now (5 yrs) have what is known as a "prosthosis" which is essentially an AFO (Ankle-foot-orthosis) with a pylon below it and a foot below that. The AFO has a hinged ankle so she can do things like jump and run on uneven/bouncy ground. Earlier (3-4 yrs ) when she was very light and the weight of the components was an issue the foot part was just a carbon-fiber skate that was glued/epoxied/screwed onto the bottom of the AFO. The difference between our daughter hating it and loving it was a good fit around the foot/leg. Working with an orthotist (as opposed to a prostheticist) made all the difference. Here's a story that illistrates the difference. The prostheticist we first worked with said "redness and pain in the beginning is normal" The orthoticist said "if there is any redness after 5 minutes that doesn't go away its a problem and we'll add padding to adjust". The orthotist is used to dealing with feet and the prostheticist was not. The orthotist turned out to be correct. Also it made a big difference in casting too. The simple-minded prostheticists who cast her foot did it like they were fitting a stump. The orthoticist cast her foot like he was getting ready to build an AFO. That was another HUGE difference in fit and function. Once when we moved to a new city we got a local prostheticist to cast and send the model back to our old orthotist. It turned out the cast the prostheticist did was worse than useless.

Here are some other issues that came up over time: If the orthotist makes the entire device w/out using prosthetic parts he can bill the insurance company. If you have to add one piece of hardware that is classified as "prosthetic" then because of billing and bureaucratic issues you have to get a prosthetist to do the work. So at first we worked with a prosthetic/orthotic group and work and had the the orthotist do do fit, casting, etc. When we moved we found a prostheticist who was originally trained as an orthotist and she does all the fitting/casting/prothetic stuff.

One thing I should mention - the foot and ankle of our daughter were unaffected by PFFD. So it was weight bearing and the AFO was the best thing. I know of some families where many of the bones were missing and so the foot wasn't weight bearing so an AFO may not be the best solution. If you want to talk about it or get more details you can send me a private message and I'll send contact info.

Cheers,
rar

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