Unlike Maddy, Briella has been "blessed" with the typical diastrophic clubbed feet.
Currently, the most effective treatment for clubbed feet is the Ponseti method, which involves casting and re-casting the feet weekly to stretch the tendons and ligaments into their correct positions. Diastrophic clubbed feet are not typical, but this kind of casting can help. There are a few problems with casting diastrophic feet, however - the feet and legs are tiny tiny tiny, and most diastrophic clubbed feet have very tight Achilles tendons causing the feet to point downwards. These issues combined can make it very difficult for casts to stay on the feet.
For the past three months, we have been using an adapted method which involves using physio tape to pull the feet into a better position, along with stretching the feet multiple times a day. Using this method, we have seen some improvement, however it is not reasonable to expect that this method could produce the same results as serial casting. Our ortho thinks we have achieved close to the limit of success with this method alone.
Many kids with tight Achilles tendons (including kids with diastrophic dysplasia) can benefit from a tenotomy. This procedure involves snipping a bit of the Achilles tendon in order to loosen it. We've known for a while that this would be a necessity for Briella - and at our appointment with our orthopedic surgeon yesterday, he scheduled it for next Thursday, March 6th.
As far as procedures/surgeries go, this is very minor (I'm not even sure whether to call it a "surgery" as she will not need a general anesthetic even - she will have sedation and a local anesthetic). There is even a youtube video of the procedure which I will not link here. After the procedure, the casts will be better able to stay on Briella's feet as the feet will be able to be "flat" rather than pointing down.
While this will hopefully be great for Briella's feet (and therefore her future ability to walk), it will provide some logistical issues as currently, I mainly carry her in an infant carrier which probably is not suitable for use with casts. We might have to start using a stroller more, which provides other logistical issues - but such is life in Hong Kong!
Please keep us in your thoughts and prayers over the next week or two as we prepare for the procedure. Hopefully we will have great success, and the casts will now be able to stay on Briella's little legs. It shouldn't be terribly painful or uncomfortable for Briella, however she might not like the idea of having the casts!
Have been thinking about you. I've heard about the procedure . Pray it will be successful for Briella and she will have completely healing on her feet. Also pray things will be easier for you to handle her casting and taking her around. She will adapt well to the cast. Blessings, Lima
ReplyDeleteHello, I just ran across your blog.. My daughter has the same type of dwarfism and we are just finding this out.. We also just finished this procedure ..just had the tentomy done. Hope it went well..its nice to know someone who is going through the same thing..I feel really lost..
ReplyDeleteHi Christina - so nice to hear from you! Are you a member of the diastrophic group on Facebook? It has been an amazing source of information for me. Please email me - I'd love to hear from you! nicolejoy81(at)gmail.com
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