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,

I know you and I talked about this a little while back, but something just hit me. Is she having abdominal migraines? Check it out on the net. I am sure it's there. I'll take a look and send you some links when I find them.

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smurffy

my son had the same thing for years. the stomach aches were felt to be migraine equaliants and the other dysaotnomia.

laurie

"

Reply-To:

Date: Sun, 02 Feb 2003 22:09:24 -0000

To:

Subject: symptoms

i was wondering if any of you or any of you with mito kids can help

me on these symptoms in my 11 year old.

She daily has spells were she will all of a sudden get very nauseated

with stomach pain, a low grade fever, sweating, and flu like sympotms

with a headache...what is this..i am sure it is her mito acting up

but it comes and goes several times a day, oh and her ears will get

real red too...

it comes and passes in an hour or so...any ideas what it is...what

can I do for her?

smurffy

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Kendra,

her temp is usually around 96-97 but she says she feels really hot. ALso I remember when she was smaller the endocrine doc ran alot of labs and her cortisol was low so he drew a AM cortisol and said that she may need a ACTH test or something like that but right after that he left the hospital and it was never followed up.

Maybe I should have her cortisol checked again..

What is cortisol anyway??

Smurffy

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Smurffy,

Dr. Cohen checked my cortisol levels recently too. But I guess they were fine because he never mentioned it again when he called with my lab results. He said I had the exact presentation for something to be messed up with my cortisol levels. I think maybe the cold extremeties plays into this. The low grade temps. and low body temp normally. Mostly like the dysautonomia symptoms I believe.

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kendra

you could have adrenal insuffivency and dysauonomia. have those labs checked. keeping the electrolytes in balance is not only better for our bodies. but can often make feel better. i takee potassium (20 meq) twice a day.

laurie

From: Katgirl595@...

Reply-To:

Date: Mon, 3 Feb 2003 01:33:42 EST

To:

Subject: symptoms

I don't know for sure - but I get the same symptoms except no headache and +

diarrhea (sp). In my case they diagnosed me with adrenal insufficency by

testing my cortisol level (which is/was low). The treatmen for me was/is low

doses of hydrocortisone. (About 20 mg hydrocortisone daily - but sometimes

20 mg hourly for several hours during bad episodes....)

When it gets really bad I end up in the ER where they usually give me IV

Solu-cortef. Except the last ER doc disagreed (over a year ago) and gave me

IV potassium. Which really made me feel alot better too.

After that I started taking RX potassium because my labs showed chronically

low potassium over the past few years. I was also told that taking the

cortisone can deplete the potassium somehow. I no longer take the

hydrocortisone daily (20 mg a day) but only when I start to feel sick

(intense abd pain is usually the first symptom). However, the RX potassium

doesn't seem to really make a difference in how I feel (not like the IV did -

at least for 1/2 a day). Maybe I'm not taking enough. I haven't had labs

done in a long time.

Could this be dysautonomia? (Even with the low cortisol?) Also, I notice

that the times it is the WORST I am usually running a below normal temp -

like 96.5 or so. Have you tried taking her temp during these episodes?

Kendra & Kidz

In a message dated 2/2/2003 4:10:49 PM Central Standard Time,

Mrsmurffy@... writes:

<< i was wondering if any of you or any of you with mito kids can help

me on these symptoms in my 11 year old.

She daily has spells were she will all of a sudden get very nauseated

with stomach pain, a low grade fever, sweating, and flu like sympotms

with a headache...what is this..i am sure it is her mito acting up

but it comes and goes several times a day, oh and her ears will get

real red too...

it comes and passes in an hour or so...any ideas what it is...what

can I do for her?

smurffy >>

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smurffy

not always.

laurie

From: Mrsmurffy@...

Reply-To:

Date: Mon, 3 Feb 2003 07:17:55 EST

To:

Subject: Re: symptoms

and Laurie,

she does hav esevere migranes do you get a actual headache with abdominal migranes?

smurffy

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Could it be dysautonomia, and how about abdominal migraines?

symptoms

> i was wondering if any of you or any of you with mito kids can help

> me on these symptoms in my 11 year old.

> She daily has spells were she will all of a sudden get very nauseated

> with stomach pain, a low grade fever, sweating, and flu like sympotms

> with a headache...what is this..i am sure it is her mito acting up

> but it comes and goes several times a day, oh and her ears will get

> real red too...

> it comes and passes in an hour or so...any ideas what it is...what

> can I do for her?

> smurffy

>

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