Re: Low body temperature and headaches

[Guest guest]

Sharon,

My 's body temp. runs 95-97 most of the time.

Would like to know more about this also.

Best to you and yours!

Horlsey

[Guest guest]

Sharon,

My 's body temp. runs 95-97 most of the time.

Would like to know more about this also.

Best to you and yours!

Horlsey

[Guest guest]

Sharon,

My 's body temp. runs 95-97 most of the time.

Would like to know more about this also.

Best to you and yours!

Horlsey

[Guest guest]

Hi Sharon,

I wonder if he is suffering with Migrains?? I know this is not uncommon with Mito patients. Dr Cohen has Miranda on Periactin for abdominal migrains ( which he said are similiar) Just a thought maybe worth mentioning. I am not sure about the body temp though.

Low body temperature and headaches

Hi all. Been real quiet for a long time - but things have been a little crazy here for a while - about the past 4-6 weeks. First clayton rain a few between 102-103 for 2 weeks - initially no cause found, then chalked up to an ear infection. But then on antiboptics and stil fever. He was also wheezing real bad so put on a nebulizer for that. He had an endoscopy and colonscopy 2 weeks ago and we will get the results this week.ANY WAY - I am writing today becuase last nite and today clay has been so cold and clamy and his body temp is now2 barely 97 degrees. He is also complaining of a headache and has been complaining of headaches for a while now. But this body temp this is worrying me. Have a call into the ped but wondering if this has happened to anyone else kids. Also the headaches concern me as the seem to be occuring fairly frequently. We will be going to the neuro soon - but he always points to the same spot and says head hurts.Thanks for any6 advice.SharonPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi Sharon,

I wonder if he is suffering with Migrains?? I know this is not uncommon with Mito patients. Dr Cohen has Miranda on Periactin for abdominal migrains ( which he said are similiar) Just a thought maybe worth mentioning. I am not sure about the body temp though.

Low body temperature and headaches

Hi all. Been real quiet for a long time - but things have been a little crazy here for a while - about the past 4-6 weeks. First clayton rain a few between 102-103 for 2 weeks - initially no cause found, then chalked up to an ear infection. But then on antiboptics and stil fever. He was also wheezing real bad so put on a nebulizer for that. He had an endoscopy and colonscopy 2 weeks ago and we will get the results this week.ANY WAY - I am writing today becuase last nite and today clay has been so cold and clamy and his body temp is now2 barely 97 degrees. He is also complaining of a headache and has been complaining of headaches for a while now. But this body temp this is worrying me. Have a call into the ped but wondering if this has happened to anyone else kids. Also the headaches concern me as the seem to be occuring fairly frequently. We will be going to the neuro soon - but he always points to the same spot and says head hurts.Thanks for any6 advice.SharonPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi Sharon,

I wonder if he is suffering with Migrains?? I know this is not uncommon with Mito patients. Dr Cohen has Miranda on Periactin for abdominal migrains ( which he said are similiar) Just a thought maybe worth mentioning. I am not sure about the body temp though.

Low body temperature and headaches

Hi all. Been real quiet for a long time - but things have been a little crazy here for a while - about the past 4-6 weeks. First clayton rain a few between 102-103 for 2 weeks - initially no cause found, then chalked up to an ear infection. But then on antiboptics and stil fever. He was also wheezing real bad so put on a nebulizer for that. He had an endoscopy and colonscopy 2 weeks ago and we will get the results this week.ANY WAY - I am writing today becuase last nite and today clay has been so cold and clamy and his body temp is now2 barely 97 degrees. He is also complaining of a headache and has been complaining of headaches for a while now. But this body temp this is worrying me. Have a call into the ped but wondering if this has happened to anyone else kids. Also the headaches concern me as the seem to be occuring fairly frequently. We will be going to the neuro soon - but he always points to the same spot and says head hurts.Thanks for any6 advice.SharonPlease contact mito-owner with any problems or questions.

[Guest guest]

Hi Sharon

My daughter, age 14, has the same problem happening with her---She get cold

and clamy, it tends to occur at night. We are currently trying to find the

answer as to why. She is also dealing with what she refers to as a shaky

feeling within. There was only one recent episode where she indicated that

she had a headache and indicated that it was in the area of the forehead

along with a stomach ache. The stomach ache did not interfer with her tube

feeds---no gagging or such. I've also noted that she is having irregular

breathing pattern at night. I'm waiting to hear from the sleep lab as to

when she will be going in for another sleep study. I'm hoping we will find

some answers there. I've also questioned the possibility of low blood sugar

episodes. My daughter also tends to have a low body temperature.

But looking at your post again, I'm not sure if our problems are the same.

Have they done a X-ray ( or whatever it is that they use) to see if he may

have a sinus infection? Just a guess here. Hope you find and answer.

Low body temperature and headaches

> Hi all. Been real quiet for a long time - but things have been a little

crazy here for a while - about the past 4-6 weeks. First clayton rain a few

between 102-103 for 2 weeks - initially no cause found, then chalked up to

an ear infection. But then on antiboptics and stil fever. He was also

wheezing real bad so put on a nebulizer for that. He had an endoscopy and

colonscopy 2 weeks ago and we will get the results this week.

>

> ANY WAY - I am writing today becuase last nite and today clay has been so

cold and clamy and his body temp is now2 barely 97 degrees. He is also

complaining of a headache and has been complaining of headaches for a while

now. But this body temp this is worrying me. Have a call into the ped but

wondering if this has happened to anyone else kids. Also the headaches

concern me as the seem to be occuring fairly frequently. We will be going to

the neuro soon - but he always points to the same spot and says head hurts.

>

> Thanks for any6 advice.

>

> Sharon

>

>

>

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

>

>

[Guest guest]

Hi Sharon

My daughter, age 14, has the same problem happening with her---She get cold

and clamy, it tends to occur at night. We are currently trying to find the

answer as to why. She is also dealing with what she refers to as a shaky

feeling within. There was only one recent episode where she indicated that

she had a headache and indicated that it was in the area of the forehead

along with a stomach ache. The stomach ache did not interfer with her tube

feeds---no gagging or such. I've also noted that she is having irregular

breathing pattern at night. I'm waiting to hear from the sleep lab as to

when she will be going in for another sleep study. I'm hoping we will find

some answers there. I've also questioned the possibility of low blood sugar

episodes. My daughter also tends to have a low body temperature.

But looking at your post again, I'm not sure if our problems are the same.

Have they done a X-ray ( or whatever it is that they use) to see if he may

have a sinus infection? Just a guess here. Hope you find and answer.

Low body temperature and headaches

> Hi all. Been real quiet for a long time - but things have been a little

crazy here for a while - about the past 4-6 weeks. First clayton rain a few

between 102-103 for 2 weeks - initially no cause found, then chalked up to

an ear infection. But then on antiboptics and stil fever. He was also

wheezing real bad so put on a nebulizer for that. He had an endoscopy and

colonscopy 2 weeks ago and we will get the results this week.

>

> ANY WAY - I am writing today becuase last nite and today clay has been so

cold and clamy and his body temp is now2 barely 97 degrees. He is also

complaining of a headache and has been complaining of headaches for a while

now. But this body temp this is worrying me. Have a call into the ped but

wondering if this has happened to anyone else kids. Also the headaches

concern me as the seem to be occuring fairly frequently. We will be going to

the neuro soon - but he always points to the same spot and says head hurts.

>

> Thanks for any6 advice.

>

> Sharon

>

>

>

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

>

>

[Guest guest]

sharon,

for what its worth jessica also has low body temp. but for her its at night. she runs about 95 at night. the headaches have also been a problem here as well. they just started around the time we started the ketogenic diet. ( about 2 months ago) jess too points to her forehead, same spot, and cries or says head hurts. the neuro told me its migraines, not so sure i believe that. we use motrin for headaches and extra blankets for the temp problem. take care,

michele, mom to jessica, 8 yrs old, mitochondrial diease, metabolic disorder, G-J tube, MR, intractable seizures, keto kid since 3/02, bladder dysfunction, dysautonomia and light of my life.

[Guest guest]

jess too points to her forehead, same spot, and cries or says head hurts.

THis is clayton - same spot all the time. Waiting to see the neuro.

Sharon

[Guest guest]

Low body temp and headaches sounds like could be part of dysautonomia syndrome, like Staci had. Migraines, skin/ body temp hot or cold, even blanching or red spots/ rashes... Dr. Boles spoke on it last year. Staci was his poster child in his lectures.

Anyway, MIDS, Maternally Inherited Dysautonomia Syndrome is a disease to ask the doctor about, Boles M.D. at Childrens Hospital Los Angeles is a person for your doc to call.

, ( & Staci) Echert

Visit Staci on the Personal Journeys Page.

Click here: United Mitochondrial Disease Foundation

http://www.umdf.org/ Redefining Hope

[Guest guest]

Staci also had the abdominal migranes/ Cyclic Vomiting Syndrome and the peripheral migraines/ terrible cramping.

the immediate help was cola syrup that we got big jugs of at Smart n Final... gave her the caffeine and sugar.

the prophylactic med was amitriptylene. Inderal is a secondary med, so is the one lappan@... mentioned that I can't remember without looking.

, ( & Staci) Echert

Visit Staci on the Personal Journeys Page.

Click here: United Mitochondrial Disease Foundation

http://www.umdf.org/ Redefining Hope

[Guest guest]

Yeah, same spot for headaches sounds really like migraines... I know from experience. Runs in the family... hey! that's a sign of mito!!

well, duhhh.

, ( & Staci) Echert

Visit Staci on the Personal Journeys Page.

Click here: United Mitochondrial Disease Foundation

http://www.umdf.org/ Redefining Hope

[Guest guest]

Good luck at the Neuro, my son has migraines his head always hurt. When he was younger he actually would say my "Fore Fever" hurts. ( I think he said that because I would always put my hand across his fore head to see if he had a fever.) Nonetheless, he was eventually diagnosed with migraines. The light always seemed to hurt his eyes as well. Sleep was the only thing that helped. Now vitamen B2 used with the Mito Docs permission has helped, unless he gets stressed, by light, activity, sounds, exhurtion...etc.

Just wanted you to know that you aren't alone, I hope the Neuro has some good ideas to help him out.

Robin

[Guest guest]

Hi Kerrie,

When I hear age related, or growing pains, I want to pull my hair out! These Docs. don't know our kids. Her temp changes seems like autonomic dysfunction to me. I am not a DR. but at this point I would ask for a copy of all her medical records. Every time I take my son in I get a copy of what was done. I keep lab report, X_Ray interpretations, eeg reports, eeg reports . Your your child's best advocate. You don't have to insult the Dr. (some do get insulted easily), just say I "ve decided to keep a copy of my family's records. Any tests you want you can sign a release at the Hospital they were done at. This is a good idea for several reasons. 1st if you get sent to a new specialist more often than not they haven't read the child's history, ecause they haven't recieved it. Or an important test may be missing from the pile. You see what seem insignifigant to a Pediatrician may be vital to a Mito Doc. An example of this is My son's Ammonia, and Lactic acid levels were very high. The pediatrician didn't think much of it. I happened to have a copy with me when we went to the Mito Doc, and that help guide him . Also, it let the Doctors know that you are a conscientious parent and they tend appreciate that.

Hope this Helps,

Robin

I also keep all of my daughters records, and she is healthy. I actually picked up on my own that she was a little anemic. And if for some reason she gets sick, I'll have her whole medical history avaulable for any Doctor to look through.

[Guest guest]

My daughter Hailey is clammy and sweaty at night. Throughout the

day she is mainly in a diaper and if often very hot to touch, yet when

I take her temp she runs in the 97's.

A few months back she did a lot of head holding, the same spot all the

time. She was 2 yrs at the time and didn't communicate any pain.

Again, she was only 2 and doesn't know what the word headache is.

I took her to a neuro who said it was age related, although everything

that is not a ear infection seems to be "AGE RELATED ONLY".

Kerry

"RALPH KEOGH JR," wrote:

Hi Sharon

My daughter, age 14, has the same problem happening with her---She

get cold

and clamy, it tends to occur at night. We are currently trying

to find the

answer as to why. She is also dealing with what she refers

to as a shaky

feeling within. There was only one recent episode where she

indicated that

she had a headache and indicated that it was in the area of the

forehead

along with a stomach ache. The stomach ache did not interfer

with her tube

feeds---no gagging or such. I've also noted that she is having

irregular

breathing pattern at night. I'm waiting to hear from the

sleep lab as to

when she will be going in for another sleep study. I'm hoping

we will find

some answers there. I've also questioned the possibility

of low blood sugar

episodes. My daughter also tends to have a low body temperature.

But looking at your post again, I'm not sure if our problems are

the same.

Have they done a X-ray ( or whatever it is that they use) to see

if he may

have a sinus infection? Just a guess here. Hope you

find and answer.

Low body temperature and headaches

> Hi all. Been real quiet for a long time - but things have

been a little

crazy here for a while - about the past 4-6 weeks. First clayton

rain a few

between 102-103 for 2 weeks - initially no cause found, then chalked

up to

an ear infection. But then on antiboptics and stil fever.

He was also

wheezing real bad so put on a nebulizer for that. He had

an endoscopy and

colonscopy 2 weeks ago and we will get the results this week.

>

> ANY WAY - I am writing today becuase last nite and today clay

has been so

cold and clamy and his body temp is now2 barely 97 degrees. He

is also

complaining of a headache and has been complaining of headaches

for a while

now. But this body temp this is worrying me. Have a call

into the ped but

wondering if this has happened to anyone else kids. Also the headaches

concern me as the seem to be occuring fairly frequently. We will

be going to

the neuro soon - but he always points to the same spot and says

head hurts.

>

> Thanks for any6 advice.

>

> Sharon

>

>

>

> Please contact mito-owner with any problems or

questions.

>

>

[Guest guest]

Periactin is what Miranda takes for abdominal migrains. It was prescribed by Dr Cohen.

so is the one lappan@... mentioned that I can't remember without looking.

[Guest guest]

Thanks Robin. I actually have gotten much better at asking for both

girls records on a regular basis.

Hailey does not have an exact diagnosis, so far some are saying unclassified

FOD. I am meeting with her metabolic specialist on Friday re: recently

becoming increasingly tired during the day. I plan on discussing

the hot to touch skin and night sweats. I just went in to check on

her and her hair is soaked - I was told to get her temps during this time

and tonight she was 97.5.

Again, thank you everyone for the input.

Kerry

Middpowell@... wrote:

Hi

Kerrie,

When I hear age related,

or growing pains, I want to pull my hair out! These Docs. don't know

our kids. Her temp changes seems like autonomic dysfunction to me.

I am not a DR. but at this point I would ask for a copy of all her

medical records. Every time I take my son in I get a copy of what

was done. I keep lab report, X_Ray interpretations, eeg reports,

eeg reports . Your your child's best advocate. You don't have to

insult the Dr. (some do get insulted easily), just say I "ve decided to

keep a copy of my family's records. Any tests you want you can sign

a release at the Hospital they were done at. This is a good idea

for several reasons. 1st if you get sent to a new specialist more often

than not they haven't read the child's history, ecause they haven't recieved

it. Or an important test may be missing from the pile. You

see what seem insignifigant to a Pediatrician may be vital to a Mito Doc.

An example of this is My son's Ammonia, and Lactic acid levels were very

high. The pediatrician didn't think much of it. I happened

to have a copy with me when we went to the Mito Doc, and that help guide

him . Also, it let the Doctors know that you are a conscientious

parent and they tend appreciate that.

Hope this Helps,

Robin

I also keep all of my daughters

records, and she is healthy. I actually picked up on my own that

she was a little anemic. And if for some reason she gets sick, I'll

have her whole medical history avaulable for any Doctor to look through.

Please contact mito-owner

with any problems or questions.

[Guest guest]

Sharon

My son Colby has always had a low temp when ill. He has COX IV, LCHFAD. He

has had only one fever in his lifetime. He is 12. When in hospital, they

use blanket warmers to get his temp up. Never have had any answers of why.

Temp has been as low as 94.