Re: Re: carnitine question/reposting help answers please

February 23, 2004

Dawn,

HUGS!!!!!!!!! I can sympathize with what you are going through. My

son with mito (Evan--12) was relatively healthy until his 4th birthday

and his older brother (--15) had no health problems until last

year. has been in and out of a wheelchair five times in the past

8 months (10 weeks total). At first they thought it was JUST

rheumatic fever, then maybe reactive arthritis, and now they just don't

know. I suspect it might be immune mediated and

neuromuscular just like Evan's problems. Both boys do OK unless they

get sick then... their symptoms spiral out of control.

I don't think that low carnitine is common outside of mito involvement

or another metabolic issue. What GI issues does Molly have? I have a

niece and a nephew with Crohn's.

thefiveofus02 wrote:

>

> Just got a call from my youngest daughter's doc.Molly is as of yet

> undiagnosed.Her GI doc ran the tests on my request and now doesn't

> know what tomake of it. Her carnitine level is decreased. Is this

> normal in all of mitochondrial disorders? Is this normal for other

> people?

> We are still working on tying our families problems together, and

I

> am just not sure where this leads us. She is relativley healthy.

She

> has some signs of dysautonomia (temp inst. red cheeks), and some

> signs of hypoglycemia. She also has food senstivities (wheat,

> peanut, milk and egg). All little things that don't necesarily tie

> anything together. Developmentally she is right on track (or

> advanced). She doesn't seem to have any of the strength issues

> has.

> Of course I am confused and concerned. Any help would be

appreciated.

>

> Dawn Myers

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