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AFO woes.(5 Posts)
we had a depressing visit with the orthotist today regarding the horrible state of DS2's feet/ankles/muscles. He is 15 and has Hypotonia, weakness, hypermobility, ASD, MLD.....
They are awful.. really awful. His feet are so deformed now..navicular bones on the floor, talus so far over it's ,well totally wonky, even his heels are twisted. His achilles are very tight his hips are wonky... you get the picture.
He has worn AFOS since he was 4 years old..boots before that. But they have steadily got worse. I have often wondered if it was worth it, however they pointed out today that without them he probably wouldn't be as mobile as he is now..fair enough BUT...
His hinged afos have NOT been the right things. They tried a trade off.. more mobility (they allow him to walk more naturally as they bend upwards..can't point his toes but can do stairs) but what has happened is his unstable ankles and feet have been able to collapse BECAUSE of that movement.
So now..at the grand age of 15 he is having to go into rigid afos with internal posting to try and shore up what is left of his feet and ankles. His muscle tone is still very weak, and when he doesn't have his AFOs on his muscles become HIGH tone to try and compensate for the lack of stability.. he can't win... (and he walks like a drunk crouched penguin )
Additionally he is absolutely doomed to crippling arthritis later because of the collapse. One of the reasons we have persisted with his splints is because of my own mum...low tone, hypermobile, splinted as a child... now crippled with pain (and back in splints!) and we hoped it would help him NOT to be the same.
I usually feel I should be grateful at how well, how mobile he is considering. But right now I am royally pissed off that actually we can't win. His new AFOS are going to protect what's left better, but will make walking much harder for him. I wish he would accept using his wheelchair sometimes just to give himself a break but he is fiercely anti these days, and doesn't have the understanding to get that he needs to pace himself ..not that he DOES much anyway,.this is ordinary walking in school that has done this.
He rarely complains but recently his hips, back, hands..everything HURT, and it just sucks.
Just having a rant really. It just seems so unfair. We honestly thought when he was small that he would get stronger, be ok, etc and instead it seems his best mobility is already behind him and it's down hill from the grand age of 15
I think (hazy memory) he was tested for something when he was small.. long chain fatty acids? He also had a muscle biopsy which came back with 'mildly abnormal non specific' ie... not quite right but not diagnostic. His blood tests also came back with oddities but not enough to say AHA! However I have wondered over the years whether in fact he does have something Mito-ish given his mix of physical/learning disabilities, but have given up the search for a diagnosis..mostly because he is fairly well and nothing scary has happened.
Are there any over the counter supplements that would be helpful? I'd definitely be interested in trying some things!
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