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Re: Tempature questions

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deb

It sounds like me. I was never an excellent speller, but their are times

that I can't even think of what letter the word starts with. This is mostly

when energy depleted.

laurie

> From: VisibleWorship@...

> Reply-To: Mito

> Date: Thu, 20 Jun 2002 23:38:20 EDT

> To: Mito

> Subject: Re: Tempature questions

>

> my mom would kill me...I suddenly forgot how to spell temperature...lol

>

> deb

>

>

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

>

>

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deb

The unexplained spiked fevers sound like dysautonomia, but the list sounds

like normal variation of a normal temperature, even if low. My normal

temperature has always been low. My grown son was always hot to the touch as

a child and somewhat as an adult. I would take his temp and it was normal

for him. This is just my experience.

laurie

> From: VisibleWorship@...

> Reply-To: Mito

> Date: Thu, 20 Jun 2002 23:19:12 EDT

> To: Mito

> Subject: Tempature questions

>

> Okay...I did my very own unscienctific study today...

>

> generally feels very warm to the touch most of the time...even since h

> e was a baby people were always askign me if he had a fever and he never

> did...

>

> He has run unexplained spiked fevers...up to 106 one time...usually

> 104-105...no other symptoms except it drains him of course...and then t he

> next day he is fine and dandy! If he is sick with pnemonia or another

> infection he is almost always in the 104 range...the unexplained fevers

> happen a few times a year...

>

> I am going to list below the temp and what he was doing...if ther eis a temp

> in (--) then that was the temp outside at the time I took it...I don't know

> if this is true dysautonomia but you guys who have kids with t his will

> know...

>

> 96.2...early this morning after outide play for 20 minutes

> 95.7...10 minutes outside (74)

> 96.3...after rough play inside--sweating

> 96.8...10 minutes outside (74)

> 96.3...after 30 minutes laying down

> 97.0...15 minutes outside (78)

> 96.6...inside for a while

> 96.8...inside and resting after lunch

> 97.1...after sitting one hour

> 98.6...5 minutes out (87)

> 97.4...in bed for nap 20 minutes, not asleep yet

> 96.2...right after waking from nap

> 98.1...3 minutes outside (87)

> 95.9...5 minutes out in evening after dinner (89)

> 97.0...10 minutes later than one above, after icecream

> 96.0...in bed 20 minutes awake

> 97.7...2 hours sleeping...still asleep

>

> so what do you guys think? By the way, I used the left ear the whole time,

> with a brand new thermometer...andrew can't have blood or BP taken in his

> right arm since haveing the artery taken out so I that is why I used the left

> every time...

>

> deb

>

>

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

>

>

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Deb,.

Hate to share this if you just bought the new ear thermometer, but we were told

not to use those in my girls with dysautonomia because it was not accurate

enough. It only works in "regular" kids with normal blood flow patterns and

vascular stability, and even then there is a lot of variability according to our

docs.

I know what you are saying...but I guess until we actually are dx with dyautonomia I will use it...I was a staunch mercury thermometer user and hate they are not acceptable any longer. I figured I would use what all my doc offices use. The other issue and maybe the most important one is has a hard time keeping his mouth closed...which contributes to his drooling and having a hard time chewing meats...the arm just takes so long and I wonder how accurage it is with adding a degree and all that...he is too old for a rectal at this point but I always trusted that with a mercury the best!

A good tip off on dysautonomia related temps is the instability and lack of

ability to control the body temp. They tend to assume the temp of their

environment, regardless of whether it's hot or cold. My older daughter would

literally spike a temp just sitting outside in the summer time, and it would take

blue ice to get the temp back down. By the same token if she went out in the

winter and was not appropriately dressed she would drop her body temperature

dangerously low and we'd have to use warming blankets to get it back up.

what is considered dangerously low? Last night I wnet in and checked it before I went to bed...he had been asleep for 5 hours...had just screamed out in his sleep but was still and continued to sleep...his temp was 95.0...is that really low? seems like to me, but where do you start worrying...and again his skin was hot to touch...also, he seems to want blankets not matter what the temps are...and wakes up a couple times a night to get his blankets fixed...

thanks for responding...I knew you would have some good info...sure is quiet around here the past couple days...

deb

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VisibleWorship@... wrote:

> so what do you guys think? By the way, I used the left ear the whole time,

> with a brand new thermometer...andrew can't have blood or BP taken in his

> right arm since haveing the artery taken out so I that is why I used the left

> every time...

Deb,.

Hate to share this if you just bought the new ear thermometer, but we were told

not to use those in my girls with dysautonomia because it was not accurate

enough. It only works in " regular " kids with normal blood flow patterns and

vascular stability, and even then there is a lot of variability according to our

docs.

The rationale behind this is that with dysautonomia there is frequently vascular

instabliity, and this can affect peripheral blood flow. In other words, they

can

do funky thinks with their vascular system that can impact how cold or hot they

feel to the touch, as well as how a temperature will register in their ear.

For instance one of the common things that you can see in a baby with autonomic

dusfunction, when they run fever is that their extremities will turn blue. This

is caused by vasoconstriction that is an exxagerated response to the fever. The

same came happen with some people in the ears. A while ago there was a lot of

discussion on the list about red ears, or hot feeling ears, well that is

autonomic and the opposite can happen as well.

Sooooo, unless you use an oral thermometer, I'm not sure that you can really say

one way or the other from your accumulated data.

By the way, some people with mito (probably a lot) just tend to run low body

temperatures, and this is not necessarily autonomic but more a result of the

energy issues. Heat (temperature) is calories burned, and it takes substrate or

fuel to generate body temperature. If you have a disease of energy metabolism

where you are not quite efficient enough in generating energy/heat, you may tend

to run low body temps as a result.

A good tip off on dysautonomia related temps is the instability and lack of

ability to control the body temp. They tend to assume the temp of their

environment, regardless of whether it's hot or cold. My older daughter would

literally spike a temp just sitting outside in the summer time, and it would

take

blue ice to get the temp back down. By the same token if she went out in the

winter and was not appropriately dressed she would drop her body temperature

dangerously low and we'd have to use warming blankets to get it back up.

We always use a digital thermometer under the tongue, and when they were too

little to hold it, we did it under the arm.

Hope this helps,

Jeannine

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In a message dated 6/21/02 10:35:30 AM Pacific Daylight Time,

VisibleWorship@... writes:

<< do you treat fevers that are dysautonomia-related or not?

deb >>

runs a normal morning temp of around 95.7 or so. When he gets sick,

it can go down or up a lot. I tend to not treat for temps until he's up

above 101, just because my personal opinion is that the body does a good job

of fighting off viruses, etc. on it's own and that the lower grade elevated

temps are just an indication of the body doing that. But, if it gets above

101 and/or is really uncomfortable, then we treat with Tylenol and/or

Motrin. (per 's docs)

Dena

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Deb:

Hailey does the same with ~ hot to touch, yet temp in the low 96 range.

Temp for sometimes 11 days - no other symptoms. Sweats a lot at night

with low temp.

Kerry

Plymouth, MA

Hailey 3 yrs unclassified FOD - skin biopsy results pending in Denmark

Brenna 1 yr

VisibleWorship@... wrote:

Okay...I did my very own unscienctific

study today...

generally feels very warm to the touch most of the time...even

since h

e was a baby people were always askign me if he had a fever and

he never

did...

He has run unexplained spiked fevers...up to 106 one time...usually

104-105...no other symptoms except it drains him of course...and

then t he

next day he is fine and dandy! If he is sick with pnemonia

or another

infection he is almost always in the 104 range...the unexplained

fevers

happen a few times a year...

I am going to list below the temp and what he was doing...if ther

eis a temp

in (--) then that was the temp outside at the time I took

it...I don't know

if this is true dysautonomia but you guys who have kids with t

his will

know...

96.2...early this morning after outide play for 20 minutes

95.7...10 minutes outside (74)

96.3...after rough play inside--sweating

96.8...10 minutes outside (74)

96.3...after 30 minutes laying down

97.0...15 minutes outside (78)

96.6...inside for a while

96.8...inside and resting after lunch

97.1...after sitting one hour

98.6...5 minutes out (87)

97.4...in bed for nap 20 minutes, not asleep yet

96.2...right after waking from nap

98.1...3 minutes outside (87)

95.9...5 minutes out in evening after dinner (89)

97.0...10 minutes later than one above, after icecream

96.0...in bed 20 minutes awake

97.7...2 hours sleeping...still asleep

so what do you guys think? By the way, I used the left ear

the whole time,

with a brand new thermometer...andrew can't have blood or BP taken

in his

right arm since haveing the artery taken out so I that is why I

used the left

every time...

deb

Please contact mito-owner with any problems or questions.

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Deb:

Hailey does the same with ~ hot to touch, yet temp in the low 96 range.

Temp for sometimes 11 days - no other symptoms. Sweats a lot at night

with low temp.

Kerry

Plymouth, MA

Hailey 3 yrs unclassified FOD - skin biopsy results pending in Denmark

Brenna 1 yr

VisibleWorship@... wrote:

Okay...I did my very own unscienctific

study today...

generally feels very warm to the touch most of the time...even

since h

e was a baby people were always askign me if he had a fever and

he never

did...

He has run unexplained spiked fevers...up to 106 one time...usually

104-105...no other symptoms except it drains him of course...and

then t he

next day he is fine and dandy! If he is sick with pnemonia

or another

infection he is almost always in the 104 range...the unexplained

fevers

happen a few times a year...

I am going to list below the temp and what he was doing...if ther

eis a temp

in (--) then that was the temp outside at the time I took

it...I don't know

if this is true dysautonomia but you guys who have kids with t

his will

know...

96.2...early this morning after outide play for 20 minutes

95.7...10 minutes outside (74)

96.3...after rough play inside--sweating

96.8...10 minutes outside (74)

96.3...after 30 minutes laying down

97.0...15 minutes outside (78)

96.6...inside for a while

96.8...inside and resting after lunch

97.1...after sitting one hour

98.6...5 minutes out (87)

97.4...in bed for nap 20 minutes, not asleep yet

96.2...right after waking from nap

98.1...3 minutes outside (87)

95.9...5 minutes out in evening after dinner (89)

97.0...10 minutes later than one above, after icecream

96.0...in bed 20 minutes awake

97.7...2 hours sleeping...still asleep

so what do you guys think? By the way, I used the left ear

the whole time,

with a brand new thermometer...andrew can't have blood or BP taken

in his

right arm since haveing the artery taken out so I that is why I

used the left

every time...

deb

Please contact mito-owner with any problems or questions.

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