Arthrogryposis

Both our girls have the same diagnosis, Arthrogryposis Multiplex Congenita (AMC), but they’re affected quite differently.  So, what is AMC exactly?

Here’s a nice visual:

And what to do about those contractures?

First: therapy.  Eva receives PT and SLP three times weekly and the poor girl can’t get a break from OT since her momma’s one.  Audrey receives OT in the pool once weekly (we drive about an hour and a half to get there-it’s worth it!) and PT on land twice weekly.

Second: Alternative treatments or therapies: for us this is Botox injections.  For some kids with AMC, Botox can relieve muscle tightness surrounding joints, and thereby improve range of motion.

Thirdly: surgeries.  If something is in the wrong position, there’s a surgery to fix it.  Eva could have 50 surgeries to get her body aligned in a more typical position.  And maybe she will eventually.  Currently, we want to hold off on surgeries and see if therapy in conjunction with Botox can be effective.  Kids’ bodies don’t care that they underwent laborious and intricate surgeries.  They will continue to grow and their bodies will want to go back to their original positions which means a lot of kids have to have surgeries “redone” as they grow.  We want to try and avoid that.  If possible.  Maybe it’s not possible, but we want to give it a try.

Audrey on the other hand, has has both of her clubbed feet surgically repaired and in the future might be a good candidate for upper extremity procedures as she has innervation (her brain can purposefully activate muscle use) to her distal muscles.

There’s also this conundrum: you can surgically fix Eva’s elbows and arms so that she has wonderful alignment and more elbow flexion.  But she can’t activate muscles in her lower arms and hands/fingers so why do the surgery if it won’t improve overall function?  She’ll look more normal (minus scars) but still won’t be able to feed herself.  Or, will Eva start to use her lower arms and hands if she can bend her elbows?  We just don’t know the answers to that.  So, we wait on surgeries until it’s our last option.

DISCLAIMER:  this information is very specific to our girls’ presentation of AMC.  Daniel has a finance degree and I’m an OT; we are not surgeons.  This is simply our current philosophy for Eva’s care, and we do not recommended/suggest/browbeat/force/guilt-trip this philosophy for anybody else.

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