back in a wheelchair again

[Guest guest]

Does anyone else have a child who alternates between being an active

teenager and being completely unable to walk? My oldest (who is 16) has

been practicing with the marching band since the end of July. Since

school started six weeks ago, the band has been marching in the Texas

heat from 4:30-6:30 everyday. A couple of weeks ago we all had a virus

and started complaining that he was stiff and was having trouble

marching, and then on Tuesday he couldn't walk at all. Tonight he still

can't walk, but he seems a little stronger after staying home from

school today to rest. It is the 6th time that this has happened since

May of 2003. The first time it lasted 7 weeks. It is frustrating

because he still doesn't have a diagnosis (His younger brother has

diagnosis of unspecified mito). He saw a neuromuscular specialist in

June after spending nearly a year thinking that it might be reactive

arthritis. We hoped that starting on Carnitor and riboflavin would help.

[Guest guest]

I have had this personally and I think it is just part of the Mito brown out

symptoms. Especially when we overdue it, we can become so weak that walking

becomes too difficult. I know with myself there have been times where

holding a phone took too much energy and I shook violently, or mixing a

batch of muffins became too hard. I have learned to follow my cues and rest

when I am weak and have been able to avoid the major crashes the last few

years. I still get tired easily and have times where I am totally

exhausted, but haven't been couch ridden for a while. Hopefully his body

will recuperate and he will get his perkiness back soon.

Darla: mommy to

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

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

Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

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

dumping syndrome...

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

Marquis (2) (some with Mito symptoms)

back in a wheelchair again

> Does anyone else have a child who alternates between being an active

> teenager and being completely unable to walk? My oldest (who is 16) has

> been practicing with the marching band since the end of July. Since

> school started six weeks ago, the band has been marching in the Texas

> heat from 4:30-6:30 everyday. A couple of weeks ago we all had a virus

> and started complaining that he was stiff and was having trouble

> marching, and then on Tuesday he couldn't walk at all. Tonight he still

> can't walk, but he seems a little stronger after staying home from

> school today to rest. It is the 6th time that this has happened since

> May of 2003. The first time it lasted 7 weeks. It is frustrating

> because he still doesn't have a diagnosis (His younger brother has

> diagnosis of unspecified mito). He saw a neuromuscular specialist in

> June after spending nearly a year thinking that it might be reactive

> arthritis. We hoped that starting on Carnitor and riboflavin would help.

>

>

>

>

>

>

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

>