Re: Sonja- turning in of feet

November 21, 2004

If her feet and lower legs are turning in still even after wearing leg

braces then the problem is in her hips and truck. If there is weakness in

the hips she will have instability in her walking. Asenath and Zipporrah

both have this problem. Our therapists use ace bandaging and other types of

wraps to put more input into the trunk and upper legs/hips in order to help

strengthen them. This can help them to build the muscles and in turn help

keep the feet from turning in. Hope this helps some.

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)

new need some info

>

> hello everyone,

>

> I'm not sure if anyone can help or not my little on Shay's pt thinks

> that she could have mito her dr isnt for sure and i was just

> wondering if any of u has had any of these syptoms? And is this

> something that i should bring up to her ped. metabloic spec when we

> go see her in dec or not?

>

> My name is sonja i have four wonderful children, my youngest Shay

> 14 months is my mystery,we live in north georgia area. I just wanted

> to introduceto everyone my family and to say hello. I hope that i

> can get to know all of you. My other children Alsion 13, Taz 10,

> Brainna 4.

> Here are some of Shay's symptoms:

> Breech during pregnacy, 6lbs 14oz at birth born 1 mnoth early.

> Her Plates in her head was overlapped each other.Failure to thrive at

> 1 month old.Kidney reflux, low set ears, upturned nose, short

> stature,hypotonia in lower trunk area, Spina Bifida occulta, her ribs

> bow outwards at the bottoms, Dev. delayed at age 6 months was eval.

> at age 2 months, She still it not walking on her on. She also has

> hypotonia , and hypermobility in lower trunk area.

> She has a metabolic disorder unkown still

> testing. They thought she had a carnitne def. so they put her on

> carintor for about 3 months then they took her off. they have tested

> her for Prader-willi, MS.

>

> She has just got AFOs last week and my concern is that even with them

> on her lower legs still turn inward, the pt said that she wasnt sure

> what we was going to do.

> And know her legs are begining to bow with her afos on.

> Any info would be great.

> thanks for listening

> sonja mom to

> Shay 14 months FTT, SBO, kidney reflux, dev. delayed, hypotonia,

> hypermobility, metabolic

> disorder unknown

>

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

>

November 21, 2004

If her feet and lower legs are turning in still even after wearing leg

braces then the problem is in her hips and truck. If there is weakness in

the hips she will have instability in her walking. Asenath and Zipporrah

both have this problem. Our therapists use ace bandaging and other types of

wraps to put more input into the trunk and upper legs/hips in order to help

strengthen them. This can help them to build the muscles and in turn help

keep the feet from turning in. Hope this helps some.

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)

new need some info

>

> hello everyone,

>

> I'm not sure if anyone can help or not my little on Shay's pt thinks

> that she could have mito her dr isnt for sure and i was just

> wondering if any of u has had any of these syptoms? And is this

> something that i should bring up to her ped. metabloic spec when we

> go see her in dec or not?

>

> My name is sonja i have four wonderful children, my youngest Shay

> 14 months is my mystery,we live in north georgia area. I just wanted

> to introduceto everyone my family and to say hello. I hope that i

> can get to know all of you. My other children Alsion 13, Taz 10,

> Brainna 4.

> Here are some of Shay's symptoms:

> Breech during pregnacy, 6lbs 14oz at birth born 1 mnoth early.

> Her Plates in her head was overlapped each other.Failure to thrive at

> 1 month old.Kidney reflux, low set ears, upturned nose, short

> stature,hypotonia in lower trunk area, Spina Bifida occulta, her ribs

> bow outwards at the bottoms, Dev. delayed at age 6 months was eval.

> at age 2 months, She still it not walking on her on. She also has

> hypotonia , and hypermobility in lower trunk area.

> She has a metabolic disorder unkown still

> testing. They thought she had a carnitne def. so they put her on

> carintor for about 3 months then they took her off. they have tested

> her for Prader-willi, MS.

>

> She has just got AFOs last week and my concern is that even with them

> on her lower legs still turn inward, the pt said that she wasnt sure

> what we was going to do.

> And know her legs are begining to bow with her afos on.

> Any info would be great.

> thanks for listening

> sonja mom to

> Shay 14 months FTT, SBO, kidney reflux, dev. delayed, hypotonia,

> hypermobility, metabolic

> disorder unknown

>

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

>

November 22, 2004

Sonja,

Billy has his feet turning in but not the legs.

He did botox shots in his calves to try to losen the muscle while we

worked on strengthening the other muscles. He was in what they called

progressive casts to straighten out his feet right after the shots.

The botox only lasts for a while then the feet go back in. They told

us it is just progressive muscular weakness. If we have the surgery

to move the tendon and lengthen the other tendon they have no idea of

how long the foot will stay fixed. We have not have the surgery as

they also said he would be in casts for months and they could not say

he would be able to weight bear afterwards anyway. The casts bothered

him so much. The benefits in our case do not outweigh the drawbacks.

More to think about.

Twana

> > She has just got AFOs last week and my concern is that even with

them on her lower legs still turn inward

November 22, 2004