Re: AFO and upper calf muscle question????

[Guest guest]

Tamara,

My daughter has had AFOs for a while and has neither of the problems you

described. She wears hinged DAFOs so they are pretty restrictive things.

They should NOT cause a loss of muscle mass. I don't know why they would

cause a lump in the muscle either. I would suspect that this is caused by

something other than the AFOs.

[Guest guest]

I am not much help here but think it a good idea to speak to the physical

therapist (if he sees one) about the issue. They or a physiatrist may be

able to help you better understand why these issues may be happening. Both

Asenath and Zipporrah wear leg braces; currently SMO's, but Asenath used to

wear DAFO's. I don't remember any issues of bulging just above the brace

with her. Could the tops of the braces be uncushioned and causing bruising

and then swelling at that place by chance?

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

AFO and upper calf muscle question????

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> Joey has wore AFO's for 2 years now. Most due to tip toe walking.

> We have unspecific Mito. We have noticed just above where the AFO

> ends in the back. (The upeer calf muscle) Is hard and like a ball.

> And of course where the AFO is there is nearly no muscle, which is to

> expected. I'm sure just like a cast you lose you muscle mass. Yet I

> would not think the other is right. Has any one ever seen this?

> Could it be from the AFO or could it be the disease progressing? Any

> help would be GREAT. He has also been falling to the ground alot.

> Just like his leg buckle from underneath him, like spagetti. Could

> this be part of it?

> Thank you soooo much!!! Tamara

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> Please contact mito-owner with any problems or questions.

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