Temps

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When Karlee was young I notices some mornings when I would go in to get her she

would be very warm. I would wonder if I should stary home from work. I found

that a short time later she felt fine. (temp).

Then when she was in elemenrtary she started getting what we called " cold

spells " . She told us that she felt cold on the inside. She would also

describe it as feeling stretchy.

The only way to get it to got away is for her to go to sleep. We would wrap in

in blankets. When she woke up she was fine although tired.

We saw a neurologist at University of Wisconsin hospitals in Madison. The

doctor told us it was Shapiro's Syndrome. He said he could give her medication,

but the medication would cause her fatigue. Well. she already has enough of

that. She gets along pretty well - maybe 1 per month. She has now found out

that it is helpful to sit in a warm bathtub.

from IL, Karlee 19

Re: Temps...

Trish,

many kids with CHARGE either have a different " normal " temp and/or

difficulty regulating their body temps. I know of several who

normally run low - around 97 or 97.5 And lots of kids have

" unexplained fevers (or maybe just elevated temp) " - sometimes every

day (which leads to lots of extra workups, being sent home form

school, etc). As you probably know, everyone has variations in their

temp during the day - it's lowest early in the morning and highest

late in the afternoon. That's for typical people. It may be

different for kids with CHARGE.

So the best I can tel you is to know your child. If you are worried

RIGHT NOW, keep an eye on it (is it changing?) and observe how Sammy

feels. Kids can get fussy JUST because they are hot from fever, but

also if they really are sick. Trust your gut. Hope that helps a little.

Meg

not a doctor, but lots of experience with CHARGE and her own 3 kids.

>

> Hi, I was just wondering if any of you were given special instructions

> with our CHARGE kids as to how high of a temp they can have before we

> have to worry. With my other two, it was 102, Just wondering... my

> pediatrician doesn't have an oncall doctor over the weekends so I can't

> ask him.

>

> Trish Mom to DeJay 5, ah, 3, and Sammy 4 mth CHARGEr

>