Re: another question on body temperature

[Guest guest]

--hey sondra my name is kristi my daughter has mitochondrial disease

and autism she has trouble regulating body temp. you might want to

ask your doctor about running the tests for it.you might get some

answers for it there--kristi

- In Autism_in_Girls , " sondra " wrote:

>

> Does any here have any research or data on those with autism

regualting

> their own body temperature? I to wonder this as all of life was of

to

> struggle to this if the air is of cold my body compensates by to

run a

> fever. if too cold my body will actually begin of to freeze while

hands

> and feet of me migh be to sweat. If my body temperature drops it

will

> stress of the immune for me an cause of illness and sick and fevers

to

> me. If I to get of too hot I to sweat so much that have to change

of my

> clothings much so from the damp and wet feelings. my body cant seem

to

> handle any chill at all.

>

> I to also get of these odd chill like feelings and will shiver even

if

> it is of not cold outside. one teached me this is of called

> neurological shivers? did any to have of this or hear of this/

>

> I to also do much gasping and sighing like sounds that seem to

come

> with no emotional trigger to cause of this. I to noted much so that

> lately that I to be of to get of the hot flashes and chills much so

for

> several days before other things begin to show of me being if sick.

>

> Sondra

>

[Guest guest]

--hey sondra my name is kristi my daughter has mitochondrial disease

and autism she has trouble regulating body temp. you might want to

ask your doctor about running the tests for it.you might get some

answers for it there--kristi

- In Autism_in_Girls , " sondra " wrote:

>

> Does any here have any research or data on those with autism

regualting

> their own body temperature? I to wonder this as all of life was of

to

> struggle to this if the air is of cold my body compensates by to

run a

> fever. if too cold my body will actually begin of to freeze while

hands

> and feet of me migh be to sweat. If my body temperature drops it

will

> stress of the immune for me an cause of illness and sick and fevers

to

> me. If I to get of too hot I to sweat so much that have to change

of my

> clothings much so from the damp and wet feelings. my body cant seem

to

> handle any chill at all.

>

> I to also get of these odd chill like feelings and will shiver even

if

> it is of not cold outside. one teached me this is of called

> neurological shivers? did any to have of this or hear of this/

>

> I to also do much gasping and sighing like sounds that seem to

come

> with no emotional trigger to cause of this. I to noted much so that

> lately that I to be of to get of the hot flashes and chills much so

for

> several days before other things begin to show of me being if sick.

>

> Sondra

>

[Guest guest]

--hey sondra my name is kristi my daughter has mitochondrial disease

and autism she has trouble regulating body temp. you might want to

ask your doctor about running the tests for it.you might get some

answers for it there--kristi

- In Autism_in_Girls , " sondra " wrote:

>

> Does any here have any research or data on those with autism

regualting

> their own body temperature? I to wonder this as all of life was of

to

> struggle to this if the air is of cold my body compensates by to

run a

> fever. if too cold my body will actually begin of to freeze while

hands

> and feet of me migh be to sweat. If my body temperature drops it

will

> stress of the immune for me an cause of illness and sick and fevers

to

> me. If I to get of too hot I to sweat so much that have to change

of my

> clothings much so from the damp and wet feelings. my body cant seem

to

> handle any chill at all.

>

> I to also get of these odd chill like feelings and will shiver even

if

> it is of not cold outside. one teached me this is of called

> neurological shivers? did any to have of this or hear of this/

>

> I to also do much gasping and sighing like sounds that seem to

come

> with no emotional trigger to cause of this. I to noted much so that

> lately that I to be of to get of the hot flashes and chills much so

for

> several days before other things begin to show of me being if sick.

>

> Sondra

>

[Guest guest]

Hi Sondra,

This is yet another set of symptoms that may point to thyroid

dysfunction, so I'm glad your doctor is pursuing this. However, the

usual blood tests often do not detect some cases of underactive

thyroid because in some people the re is a tissue resistance to

thyroid hormone, and even if it appears that there is a normal or

even a high normal amount in the blood, the person can still be

hypothyroid.

Have you ever done an axillary/oral body temperature test? If not,

this is what you do:

Shake down a regular thermometer before going to bed to 96 degrees or

less and put it by your bedside. In the morning, as soon as you wake

up, put the thermometer deep in your armpit for ten minutes and

record the temperature. Do this before you get out of bed, have

anything to eat or drink, or engage in any activity. This will

measure your lowest temperature of the day, which correlates with

thyroid function. The normal underarm temperature averages 97.8-98.2

degrees F. The temperature should be taken for four days.

Each time you are taking your temperature, it is very important that

you take both axillary (underarm) and oral (mouth) temperatures. Both

temperatures need to be taken upon waking up as well as three hours

later and then six hours after that. It is important to do this for

four days to get accurate information.

You should start taking the temperature on the second day of

menstruation. And you also do not want to do it if you have any kind

of infection since this may alter your body temperature as well.

[Guest guest]

Hi Sondra,

This is yet another set of symptoms that may point to thyroid

dysfunction, so I'm glad your doctor is pursuing this. However, the

usual blood tests often do not detect some cases of underactive

thyroid because in some people the re is a tissue resistance to

thyroid hormone, and even if it appears that there is a normal or

even a high normal amount in the blood, the person can still be

hypothyroid.

Have you ever done an axillary/oral body temperature test? If not,

this is what you do:

Shake down a regular thermometer before going to bed to 96 degrees or

less and put it by your bedside. In the morning, as soon as you wake

up, put the thermometer deep in your armpit for ten minutes and

record the temperature. Do this before you get out of bed, have

anything to eat or drink, or engage in any activity. This will

measure your lowest temperature of the day, which correlates with

thyroid function. The normal underarm temperature averages 97.8-98.2

degrees F. The temperature should be taken for four days.

Each time you are taking your temperature, it is very important that

you take both axillary (underarm) and oral (mouth) temperatures. Both

temperatures need to be taken upon waking up as well as three hours

later and then six hours after that. It is important to do this for

four days to get accurate information.

You should start taking the temperature on the second day of

menstruation. And you also do not want to do it if you have any kind

of infection since this may alter your body temperature as well.

[Guest guest]

Kristi did not know of that this was of any coorelations to the mito

issues. odd that this if a new word to me because of recent things

showing this in autism, but lacked what it was except that it was of

somethings with the muscles. would mito be of odd to be not dx in a

person until much into adult years?

Sondra

[Guest guest]

Kristi did not know of that this was of any coorelations to the mito

issues. odd that this if a new word to me because of recent things

showing this in autism, but lacked what it was except that it was of

somethings with the muscles. would mito be of odd to be not dx in a

person until much into adult years?

Sondra

[Guest guest]

even this day when I to felt of the skin to feel of hot I to went

and found of that thermometer and did be to take of my oral temp and it

was of 97.6. which was in mid day.

about the temp things can I to do of the oral first or do have to do

underarm, because not want of the one under my arm to be of then in to

my mouth.

But even before of you to write of this I to began of to wonder maybe

will take of my temp orally several times a day and begin to record of

it to see. and measure of how my body feels with each temp. right now

back from a long over loading day of to many peoples and words and so

just feel nausea and exhaustions.

Sondra

[Guest guest]

even this day when I to felt of the skin to feel of hot I to went

and found of that thermometer and did be to take of my oral temp and it

was of 97.6. which was in mid day.

about the temp things can I to do of the oral first or do have to do

underarm, because not want of the one under my arm to be of then in to

my mouth.

But even before of you to write of this I to began of to wonder maybe

will take of my temp orally several times a day and begin to record of

it to see. and measure of how my body feels with each temp. right now

back from a long over loading day of to many peoples and words and so

just feel nausea and exhaustions.

Sondra

[Guest guest]

> about the temp things can I to do of the oral first or do have to do

> underarm, because not want of the one under my arm to be of then in to

> my mouth.

Hi Sondra,

Glass thermometers are pretty cheap at the drug store so I just use

two and do both at once to save time.

[Guest guest]

I to not think of having of two of them. so will be to go and buy of

two glass thermometers. My missy likes of the one that is of digital

and beeps LOL, she is of always to like to obsess over the numbers that

come up and if the temp goes of up even one point she panics so I to

try to hide them. she will ask of me over and over is she sick. we

never tell her if she is or not if we do she obsesses on it but the

older she gets the more and more she is learning to understand her own

body as being ill.

Sondra

[Guest guest]

Sondra, I'm just beginning to study mito disorders, but it would not

be unusual to just get a dx at your age, primarily because there

hasn't been that much attention to it until about 20 yrs ago. Since

you have had sicknesses and such your entire life, it's possible. The

biggest problem is finding someone able to diagnose. From my

understanding, there are only a handful of specialists in the nation.

I believe the closest of the best centers near you is at the Cleveland

Clinic in Ohio.

Allie has ran fevers most of her life, I remember her kindergarten

teacher worried constantly about her feeling feverish. And she's been

very sensitive to cold since an infant, but also gives out in the heat

very easily. She's not been dxed with mito, but we're in the process

of testing for it.

Debi

[Guest guest]

Sondra, I'm just beginning to study mito disorders, but it would not

be unusual to just get a dx at your age, primarily because there

hasn't been that much attention to it until about 20 yrs ago. Since

you have had sicknesses and such your entire life, it's possible. The

biggest problem is finding someone able to diagnose. From my

understanding, there are only a handful of specialists in the nation.

I believe the closest of the best centers near you is at the Cleveland

Clinic in Ohio.

Allie has ran fevers most of her life, I remember her kindergarten

teacher worried constantly about her feeling feverish. And she's been

very sensitive to cold since an infant, but also gives out in the heat

very easily. She's not been dxed with mito, but we're in the process

of testing for it.

Debi

[Guest guest]

Debi what sort of doctor can dx of it?

Sondra

[Guest guest]

Debi what sort of doctor can dx of it?

Sondra

[Guest guest]

Any " regular " doc should be able to test for hyerkalemia, it's a blood

test that they would stick your arm and take some blood to check. A

family doctor, ER doctor, even a nurse practitioner or physician's

assistant could order basic lab tests to check for it.

Debi

[Guest guest]

Any " regular " doc should be able to test for hyerkalemia, it's a blood

test that they would stick your arm and take some blood to check. A

family doctor, ER doctor, even a nurse practitioner or physician's

assistant could order basic lab tests to check for it.

Debi

[Guest guest]

Any " regular " doc should be able to test for hyerkalemia, it's a blood

test that they would stick your arm and take some blood to check. A

family doctor, ER doctor, even a nurse practitioner or physician's

assistant could order basic lab tests to check for it.

Debi

[Guest guest]

debi was of wondering what sort of doctor dx mito disorders as you

shared there was of one in cleveland but I to lack how to know what

sort of doctor to go to.

Sondra

[Guest guest]

The dr is dr cohen at clevland clinic his specialty is chief of

pediatric neurology depts of neurology,neurosurgery and the taussig

cancer center, cleveland clinic also you can be diagnosed when you

become an adult I was just diagnosed they tested me after they found

out my daughter has it.Under the problems associated with mitochondrial

disease under nerves aberrant temperature regulation hope this helps

any more ?'s please email me-----kristi

-- In Autism_in_Girls , " sondra " wrote:

>

> debi was of wondering what sort of doctor dx mito disorders as you

> shared there was of one in cleveland but I to lack how to know what

> sort of doctor to go to.

> Sondra

>

[Guest guest]

The dr is dr cohen at clevland clinic his specialty is chief of

pediatric neurology depts of neurology,neurosurgery and the taussig

cancer center, cleveland clinic also you can be diagnosed when you

become an adult I was just diagnosed they tested me after they found

out my daughter has it.Under the problems associated with mitochondrial

disease under nerves aberrant temperature regulation hope this helps

any more ?'s please email me-----kristi

-- In Autism_in_Girls , " sondra " wrote:

>

> debi was of wondering what sort of doctor dx mito disorders as you

> shared there was of one in cleveland but I to lack how to know what

> sort of doctor to go to.

> Sondra

>

[Guest guest]

So it is of a neurologist who dx of this in people. is there of a

phone number of this doctor and you share peditrics and that means

kids so can he see of adults?

Sondra

In Autism_in_Girls , " kristi "

wrote:

>

> The dr is dr cohen at clevland clinic his specialty is chief of

> pediatric neurology depts of neurology,neurosurgery and the taussig

> cancer center, cleveland clinic also you can be diagnosed when you

> become an adult I was just diagnosed they tested me after they

found

> out my daughter has it.Under the problems associated with

mitochondrial

> disease under nerves aberrant temperature regulation hope this

helps

> any more ?'s please email me-----kristi

>

>

>

>

>

>

> -- In Autism_in_Girls , " sondra " <hfa2@> wrote:

> >

> > debi was of wondering what sort of doctor dx mito disorders as

you

> > shared there was of one in cleveland but I to lack how to know

what

> > sort of doctor to go to.

> > Sondra

> >

>

[Guest guest]

-yes he sees adults to it is the neurometabolism/neurogenetics it is

called the neurological lnstitute the clevland foundation 9500

euclid ave clevland oh44195 (216)444-1994 -----kristi

-- In Autism_in_Girls , " sondra " wrote:

>

> So it is of a neurologist who dx of this in people. is there of a

> phone number of this doctor and you share peditrics and that means

> kids so can he see of adults?

> Sondra

>

> In Autism_in_Girls , " kristi "

> <pritchard2000_1997@> wrote:

> >

> > The dr is dr cohen at clevland clinic his specialty is chief of

> > pediatric neurology depts of neurology,neurosurgery and the

taussig

> > cancer center, cleveland clinic also you can be diagnosed when

you

> > become an adult I was just diagnosed they tested me after they

> found

> > out my daughter has it.Under the problems associated with

> mitochondrial

> > disease under nerves aberrant temperature regulation hope this

> helps

> > any more ?'s please email me-----kristi

> >

> >

> >

> >

> >

> >

> > -- In Autism_in_Girls , " sondra " <hfa2@> wrote:

> > >

> > > debi was of wondering what sort of doctor dx mito disorders as

> you

> > > shared there was of one in cleveland but I to lack how to know

> what

> > > sort of doctor to go to.

> > > Sondra

> > >

> >

>

[Guest guest]

Oh! Bruce Cohen is the doctor talked about at Cleveland Clinic. I'm

not sure if he sees many patients or if he has partners in his group

who sees patients. You also generally have to have a doctor willing to

refer you, it seems these doctors who are so specialized require

referrals.

We're currently seeing Dr. Geier in land. He's a geneticist. As I

understand it, most of these doctors doing mitochondrial things are

geneticists specializing in metabolic/mitochondrial stuff. here is the

list I got from the meta-mito-autism board:

Some good mito docs: Bruce Cohen (Cleveland Clinic)

Shoffner (Atlanta, Medical neurogenetics, ish Rite),

Kelley (Kennedy Kreiger),

Boles (Children's Hospital of Los Angeles),

http://www.clevelandclinic.org/staff/getstaff.asp?StaffId=1129

http://www.foundmm.org/staff.php

http://www.medicalneurogenetics.com/

http://www.kennedykrieger.org/kki_staff.jsp?pid=1824

http://biochemgen.ucsd.edu/umdf/Research.htm

[Guest guest]

when i to went to the doctors a few days ago she things she is feeling

of nodules on the thyroid on the left side but when she pushes in those

spots it feels different and sends an odd pressure feeling all over the

neck and up towards the brain areas. it is of a odd sensation and

really not have the words if it is of real pains of pressure or what it

is of to feel like but it is of an odd sensations to me. I to lack what

a nodule is so for me did not feel worried of it. but I to feel in time

they will discover all the things as a medical reason for me to feel so

ill so much of the time.

Sondra