Re: Temp regulation issue ?'s

[Guest guest]

Asenath has a normal temperature reading of 94 degrees most

times. She feels normal to the touch at these times. Zipporrah has

a norm of about 96-97 degrees that we can tell thus far. It is very

strange to have such low temps but to feel normal rather than cold,

but that's the way it is with them. I tend to go more with touch

than temperature reading when administering meds. When they feel

like little furnaces I intervene for sure so their systems won't be

compromised. The article by Cohen that some of the girls on this

list recommended to me talks about not allowing a Mito child have a

fever without treating it because it can cause severe problems if

left untreated. (that and dehydration as well) Temperature

regulation issues are a pain and just another part of that crazy

disautonomia/autonomic system failure. Hope you are doing well

otherwise.

Darla: mommy to Asenath, Zipporrah, and the gang

> Temp issues are not new over here, though there are some new things

> happening and I am hoping for some feedback.

>

> Question 1....has anyone ever been told at what point a body temp

is too

> LOW? We've randomly caught Madison's lower than normal in the past

(97

> or so), but recently have been getting alot of 96.4 or so. She's

> symptom-free when this is the case, so not worried as much as

curious if

> the doctors have had any thoughts for you all that have kids that do

> this. Also wondering if there is some change in fever treatment

that I

> should be considering.....I usually don't treat till the temp is

over

> 101 to 102, assuming the fever is a good thing and helping the body

> fight whatever is going on. Not sure if I should do things

differently

> if her " norm " is sitting 2 or so degree's lower than normal though.

>

> Question 2.......We were outside the other day for 15-20 minutes in

> about 80 degree heat. The kids were playing, though not hard and

> appeared to be handling things okay. Our concern is usually with

> Madison because she does not sweat normally and internalizes the

heat

> (does not get red and sweat to get rid of it) and this has led to

> problems for her in the past. However on this day, unlike his usual

> response to heat (turning bright red and sweating profusely), Chance

> looked VERY pale, with dark circles under his eyes and when I

touched

> his face, it was ice cold. He was actually the one that said we

should

> go in because it was so warm and I decided to check his body temp,

just

> to see what it was. It was normal, however during the 3-4 minutes

it

> took me to take his temp, he broke out in a sweat on his upper lip

> (large sweat droplets) and his head was suddenly sopping wet,

though his

> skin was still ice cold to the touch. He was NOT sweating to any

extent

> when we were outside. The paleness is similar to what we see in

> Madison, though the breaking out in a sweat after coming in is not

> something we have ever seen before. Has anyone else??

>

> Thanks a ton!!! Hope everyone had a wonderful Mother's Day!!!

>

> -- BIG hugs,

> Kass, proud mom to Chance(10-Mito), Madison(7-Mito), and Abby(6-

Mito)

> Updates (http://www.caringbridge.org/tx/mitowhat/)

> " Life is not measured by the breaths we take, but by the moments

that

> take our breath away " Unknown

[Guest guest]

Kass

Caeden's temp used to be normally around 97 now its 96 but we have

had the normal range around 100 it's autonomic issues. I have learned

it's common in these kids according to my genetics doc. As far as the

outside temp . I have posted before about the sarah moody foundation

who ahs vests for kids who can't sweat or tolerate heat. i would look

into getting a vest then u don't ahve to worry about these issues.

When my daughter(who doesn't sweat) would go out in anything 70 or

even lower temps if she ran around would make her face so flushed it

was almost purple she would get real lethargic, crnaky and sometimes

even vomit. That was the beginning of heat exhaustion. With these

kids having autonomic issues they are never consisitent so even

though the cheeks were ice cold he probably was still in heat crisis.

I hope that u can figure out whats up, but do check out that site.

(Caeden 2.5 yrs w/ CP severe, Mito Myop unspec, FTT, etc etc

etc)

[Guest guest]

--- Kass,

Welcome to the world of dysautonomia! 's temp at night will

drop down to 94.0 and she is fine. I was told if it dropped to 93.0

to wake her and make sure she is responsive.

As far as a fever, we treat at 100. Mostly because she has low

white cells, no spleen and a mediport. It is not unusual to have her

wilt in the heat. We always have our air on. We do not go outisde in

the mid-day sun or heat. All three of my children have severe heat

intolerance. Keep them out of the heat, and sun as much as possible.

Mito kids just have a harder time regulating body temp. Make sure

they are plenty hydrated and get plenty of rest after any exposure

to heat!

Hope this help! It makes for a long summer...

Dawn