Re: Temp regulation and excessive sleeping

[Guest guest]

My son is 7 and has always had low core body temp-- high fevers for no

reason and temperature is a poor indicator of illness, even sepsis-- he

also has no self awareness of hunger or thirst, and very high pain

tolerance. He has high cold tolerance, low tolerance to warmth and

sweats profusely even when it seems cool to everyone else.

He was found to have non progressive dysautonomia, as a result of his

genetic syndrome.

There is a progressive dysautonomia, called Riley Day syndrome, which,

in 90% of the cases, occurs in families of Jewish descent.

- in CT mom to

________________________________

From: [mailto: ] On Behalf

Of Amy

Sent: Tuesday, December 23, 2008 9:09 AM

Subject: Temp regulation and excessive sleeping

Hi everyone, I hope you are all having a healthy holiday!

Nick is 6 and has CVID, we are at a pretty good place with infections

currently (altho we have been fighting the same sinus infection for 4

months now) but nothing serious recently. At Nick's last check up with

the immuno we were discussing his temp regulation issues and the fact

that he still needs a nap everyday (he sleeps an avg of 14 to 16 hours a

day, even on non school days) I noticed on Nick's most recent set of

labs that are to be drawn on the 29th there are a lot of new things

added that appear to be complement related and others I am not sure of.

I am just wondering if it is normal and if your pid kid also can't

maintain their own temp out in the cold or if their body temp rises if

they are over dressed? Are they still sleeping a lot?

Thanks for any help.. we have just been dealing with things as they come

along but now the immuno says they might be neurologic or metabolic

related.

Amy,

mom to Nick, 6, CVID

[Guest guest]

We've had the excessive sleeping thing happen before and it was only when

was in public school. Within a week of being out of school and back to

home schooling the sleeping stopped. This happened when I put her in school

at the end of 1st and again when 2nd grade started. School was simply to

much on her even though she loves school the excessive sleeping was 1 of the

reasons I pulled her out. She would crash between 7-9pm and I'd have to drag

her out of bed around 10-11am. She was never at school on time and the

school was getting irritated but there wasn't anything I could do about it,

she was dead to the world and nothing would wake her up. Now that she's home

schooled again she goes to bed around 9-10pm and wakes up between 6-8am.

Temp regulation and excessive sleeping

> Hi everyone, I hope you are all having a healthy holiday!

>

> Nick is 6 and has CVID, we are at a pretty good place with infections

> currently (altho we have been fighting the same sinus infection for 4

> months now) but nothing serious recently. At Nick's last check up with

> the immuno we were discussing his temp regulation issues and the fact that

> he still needs a nap everyday (he sleeps an avg of 14 to 16 hours a day,

> even on non school days) I noticed on Nick's most recent set of labs that

> are to be drawn on the 29th there are a lot of new things added that

> appear to be complement related and others I am not sure of.

>

> I am just wondering if it is normal and if your pid kid also can't

> maintain their own temp out in the cold or if their body temp rises if

> they are over dressed? Are they still sleeping a lot?

>

> Thanks for any help.. we have just been dealing with things as they come

> along but now the immuno says they might be neurologic or metabolic

> related.

>

> Amy,

> mom to Nick, 6, CVID

>

>

[Guest guest]

Thanks, Nick was actually better this summer when he wasn't in school, but we

figured it was because he was able to lounge around all day long and he can't do

that at school. Now he gets up at 8-8:15am.. gets home from school at 4pm, runs

upstairs sleeps until 6 or 7 and then still goes to sleep at 9pm. Weekends are

pretty slimilar but he will take a nap after church or like right now he is

sleeping after we just went to the store.

I don't get it.. they have tried taking gluten out of his diet, milk out, soy

out.. all three out at once (that sucked) nothing helped.

Temp regulation and excessive sleeping

> Hi everyone, I hope you are all having a healthy holiday!

>

> Nick is 6 and has CVID, we are at a pretty good place with infections

> currently (altho we have been fighting the same sinus infection for 4

> months now) but nothing serious recently. At Nick's last check up with

> the immuno we were discussing his temp regulation issues and the fact that

> he still needs a nap everyday (he sleeps an avg of 14 to 16 hours a day,

> even on non school days) I noticed on Nick's most recent set of labs that

> are to be drawn on the 29th there are a lot of new things added that

> appear to be complement related and others I am not sure of.

>

> I am just wondering if it is normal and if your pid kid also can't

> maintain their own temp out in the cold or if their body temp rises if

> they are over dressed? Are they still sleeping a lot?

>

> Thanks for any help.. we have just been dealing with things as they come

> along but now the immuno says they might be neurologic or metabolic

> related.

>

> Amy,

> mom to Nick, 6, CVID

>

>

[Guest guest]

My Blake is 16. He NEVER Runs a temp. Even with Bacterial infections or fungal

infections NO temp. he has on occasion had his temp go 1-2 full degrees below

his normal of 96.9. He sleeps several times a day.

If Blake does not take a morning or afternoon nap, he is absolutely miserable

and makes it miserable on me!!!

Our Immuno. told us it is normal for a kid or even an adult with the immune

dysfunction and the severity that Blake has, for them to be more tired almost to

the point of non functional until they get sleep.

Even as a young child, Blake would take naps several times a day...he even takes

naps right after eating!!!

Hope this helps....if only a little!!!

mom to Blake, 16

SCID with Complete T-Cell Dysfunction...Sub-q 2X's a week, SDS, Autism/OCD/ODD

htpp://www3.caringbridge.org/sc/blakester

Come & see just WHY he is called

" The Greatest Adventure of MY Lifetime "

 

" Children are like butterflies in the wind.

Some fly higher than others, BUT

each one flies the best they can!!!! "

From: <bluetaelon@...>

Subject: Re: Temp regulation and excessive sleeping

Date: Tuesday, December 23, 2008, 1:28 PM

We've had the excessive sleeping thing happen before and it was only when

was in public school. Within a week of being out of school and back to

home schooling the sleeping stopped. This happened when I put her in school

at the end of 1st and again when 2nd grade started. School was simply to

much on her even though she loves school the excessive sleeping was 1 of the

reasons I pulled her out. She would crash between 7-9pm and I'd have to drag

her out of bed around 10-11am. She was never at school on time and the

school was getting irritated but there wasn't anything I could do about it,

she was dead to the world and nothing would wake her up. Now that she's home

schooled again she goes to bed around 9-10pm and wakes up between 6-8am.

Temp regulation and excessive sleeping

> Hi everyone, I hope you are all having a healthy holiday!

>

> Nick is 6 and has CVID, we are at a pretty good place with infections

> currently (altho we have been fighting the same sinus infection for 4

> months now) but nothing serious recently. At Nick's last check up with

> the immuno we were discussing his temp regulation issues and the fact that

> he still needs a nap everyday (he sleeps an avg of 14 to 16 hours a day,

> even on non school days) I noticed on Nick's most recent set of labs that

> are to be drawn on the 29th there are a lot of new things added that

> appear to be complement related and others I am not sure of.

>

> I am just wondering if it is normal and if your pid kid also can't

> maintain their own temp out in the cold or if their body temp rises if

> they are over dressed? Are they still sleeping a lot?

>

> Thanks for any help.. we have just been dealing with things as they come

> along but now the immuno says they might be neurologic or metabolic

> related.

>

> Amy,

> mom to Nick, 6, CVID

>

>

[Guest guest]

My son Lucas has always dealt with these issues. We have been told it is Sensory

Integration issues. He does not seem to be able to sense when he is hot or cold

the way others do. He will wear long sleeves in the summer and a jacket even

when it is VERY hot out. or will go out at 10degrees with shirt sleeves. As far

a sleep. We are now in the teens so I expect some of it for him but I do not

find he needs a great deal more sleep than others. 12-16 hours is normal for him

but he also gets very tired even when his IgG levels are very adequate. I think

it is a combo of both and for now he stays well with the levels he is carrying.

No one has suggested anything else. I would be interested if you learn anything

new. Lucas is 13 now.

BARBIE

________________________________

From: Amy <mom2lilnick@...>

Sent: Tuesday, December 23, 2008 8:08:41 AM

Subject: Temp regulation and excessive sleeping

Hi everyone, I hope you are all having a healthy holiday!

Nick is 6 and has CVID, we are at a pretty good place with infections currently

(altho we have been fighting the same sinus infection for 4 months now) but

nothing serious recently. At Nick's last check up with the immuno we were

discussing his temp regulation issues and the fact that he still needs a nap

everyday (he sleeps an avg of 14 to 16 hours a day, even on non school days) I

noticed on Nick's most recent set of labs that are to be drawn on the 29th there

are a lot of new things added that appear to be complement related and others I

am not sure of.

I am just wondering if it is normal and if your pid kid also can't maintain

their own temp out in the cold or if their body temp rises if they are over

dressed? Are they still sleeping a lot?

Thanks for any help.. we have just been dealing with things as they come along

but now the immuno says they might be neurologic or metabolic related.

Amy,

mom to Nick, 6, CVID

[Guest guest]

Same now that we are homeschooling. He was needing a great deal more sleep when

he was in school and MUCH more irritable than now.

BARBIE

________________________________

From: <bluetaelon@...>

Sent: Tuesday, December 23, 2008 12:28:05 PM

Subject: Re: Temp regulation and excessive sleeping

We've had the excessive sleeping thing happen before and it was only when

was in public school. Within a week of being out of school and back to

home schooling the sleeping stopped. This happened when I put her in school

at the end of 1st and again when 2nd grade started. School was simply to

much on her even though she loves school the excessive sleeping was 1 of the

reasons I pulled her out. She would crash between 7-9pm and I'd have to drag

her out of bed around 10-11am. She was never at school on time and the

school was getting irritated but there wasn't anything I could do about it,

she was dead to the world and nothing would wake her up. Now that she's home

schooled again she goes to bed around 9-10pm and wakes up between 6-8am.

Temp regulation and excessive sleeping

> Hi everyone, I hope you are all having a healthy holiday!

>

> Nick is 6 and has CVID, we are at a pretty good place with infections

> currently (altho we have been fighting the same sinus infection for 4

> months now) but nothing serious recently. At Nick's last check up with

> the immuno we were discussing his temp regulation issues and the fact that

> he still needs a nap everyday (he sleeps an avg of 14 to 16 hours a day,

> even on non school days) I noticed on Nick's most recent set of labs that

> are to be drawn on the 29th there are a lot of new things added that

> appear to be complement related and others I am not sure of.

>

> I am just wondering if it is normal and if your pid kid also can't

> maintain their own temp out in the cold or if their body temp rises if

> they are over dressed? Are they still sleeping a lot?

>

> Thanks for any help.. we have just been dealing with things as they come

> along but now the immuno says they might be neurologic or metabolic

> related.

>

> Amy,

> mom to Nick, 6, CVID

>

>

[Guest guest]

Thanks ladies,

Nick does run fevers when he is sick, which is an improvement.. he used to not.

But if it is really cold out his body temp will drop to as low as 93 and he is

pretty much unresponsive if that happens. We had a heck of a time when he

started school last year and this year because I would send him in long sleeved

shirts or hoodies and they would send him home with a fever of 100 to 101 and we

would get home and he would undress and his temp would gradually go back to

normal. We have figured out that when it is cold outside to just layer him and

the teacher will judge what he should wear. If it is cold out, he has to stop by

the nurse and have his temp taken after recess and can't return to the class

until he is back up to 97.6 to 98 degrees.

Amy

Temp regulation and excessive sleeping

> Hi everyone, I hope you are all having a healthy holiday!

>

> Nick is 6 and has CVID, we are at a pretty good place with infections

> currently (altho we have been fighting the same sinus infection for 4

> months now) but nothing serious recently. At Nick's last check up with

> the immuno we were discussing his temp regulation issues and the fact that

> he still needs a nap everyday (he sleeps an avg of 14 to 16 hours a day,

> even on non school days) I noticed on Nick's most recent set of labs that

> are to be drawn on the 29th there are a lot of new things added that

> appear to be complement related and others I am not sure of.

>

> I am just wondering if it is normal and if your pid kid also can't

> maintain their own temp out in the cold or if their body temp rises if

> they are over dressed? Are they still sleeping a lot?

>

> Thanks for any help.. we have just been dealing with things as they come

> along but now the immuno says they might be neurologic or metabolic

> related.

>

> Amy,

> mom to Nick, 6, CVID

>

>

[Guest guest]

Conner went through something similar, his temp would often run low or below

normal, then there were times when he went on for months with a fever. When that

stopped he never ran a fever again (before transplant), even when he was sick.

We were told that this was due to his immune issues and poor cytokine response.

This was the very first immune function that I noted after his transplant, he

started running fevers again right away. Anyway, I think temp irregularities are

common in kids with immune issues.

One thing that I also wanted to share was that when Conner was having problems a

few years ago with temp regulation and severe fatigue we learned of two

additional medical problems around the same time and both can cause some similar

symptoms. The first thing we learned was that Conner had lost adrenal function

due to his inhaled steroid (Flovent). Things improved somewhat when they started

treating it and stopped the Flovent. The second thing we learned is that he had

Hashimoto's, anti-thyroid antibodies which attack your thyroid gland. He had all

of the symptoms of hypothyroidism, but his thyroid levels weren't out of range.

Our immuno asked our endo to do a trial of thyroid replacement and the

difference was amazing! My suggestion would be to make sure your docs have ruled

out other disorders that can cause these issues and to look at solutions that

could help.

I also wanted to share that when Conner's fatigue was really bad, we had

arrangements with the school nurse that allowed him to come to her office to

rest or nap when needed, thankfully they had a separate room that was rarely

used and it was sort of like his own personal sleep area. They would let him

rest for half an hour or so and that seemed to help. We also had times where he

only attended school for half days, we would rotate mornings and afternoons so

that he was getting exposed to all subjects. He has also done homebound studies,

where a teacher comes to the house a couple of times per week. We didn't find

this to be all that beneficial because the classroom teacher wouldn't interact

much with the homebound teacher.

Hope you find something that works!

Take care,

(NEMO carrier)

Mom to Hayden (14-unknown PID)

Evan (14-unknown PID)

Conner (14-NEMO; transplanted 8/17/07 - from an anonymous donor)

Kelsey (12-unknown PID and NEMO carrier)

Wife to (unknown PID)

www.caringbridge.org/visit/smithkids

[Guest guest]

Macey's normal temp runs 96 or so. Right now with this MRSA she's been running

about 99. She will run a fever with anything viral but not bacterial. She also

has the sleepiness but was diagnosed with Narcolepsy two years ago.

Ursula - mom to (16) and Macey (13,CVID)

www.caringbridge.org/visit/maceyholleman

[Guest guest]

Ursula,

Why do they run low? Mine is the same.

Great to see Macey in the IDF newsletter. Hope she heals better now.

Happy holidays everyone.

Mom to Dani, cvid

Sent on the Now Network™ from my Sprint® BlackBerry

RE: Temp regulation and excessive sleeping

Macey's normal temp runs 96 or so. Right now with this MRSA she's been running

about 99. She will run a fever with anything viral but not bacterial. She also

has the sleepiness but was diagnosed with Narcolepsy two years ago.

Ursula - mom to (16) and Macey (13,CVID)

www.caringbridge.org/visit/maceyholleman

[Guest guest]

Hi ,

How did they treat his adrenal gland?

Thanks,

Cyndi

>

> Conner went through something similar, his temp would often run low

or below normal, then there were times when he went on for months with

a fever. When that stopped he never ran a fever again (before

transplant), even when he was sick. We were told that this was due to

his immune issues and poor cytokine response. This was the very first

immune function that I noted after his transplant, he started running

fevers again right away. Anyway, I think temp irregularities are

common in kids with immune issues.

>

> One thing that I also wanted to share was that when Conner was

having problems a few years ago with temp regulation and severe

fatigue we learned of two additional medical problems around the same

time and both can cause some similar symptoms. The first thing we

learned was that Conner had lost adrenal function due to his inhaled

steroid (Flovent). Things improved somewhat when they started treating

it and stopped the Flovent. The second thing we learned is that he had

Hashimoto's, anti-thyroid antibodies which attack your thyroid gland.

He had all of the symptoms of hypothyroidism, but his thyroid levels

weren't out of range. Our immuno asked our endo to do a trial of

thyroid replacement and the difference was amazing! My suggestion

would be to make sure your docs have ruled out other disorders that

can cause these issues and to look at solutions that could help.

>

> I also wanted to share that when Conner's fatigue was really bad, we

had arrangements with the school nurse that allowed him to come to her

office to rest or nap when needed, thankfully they had a separate room

that was rarely used and it was sort of like his own personal sleep

area. They would let him rest for half an hour or so and that seemed

to help. We also had times where he only attended school for half

days, we would rotate mornings and afternoons so that he was getting

exposed to all subjects. He has also done homebound studies, where a

teacher comes to the house a couple of times per week. We didn't find

this to be all that beneficial because the classroom teacher wouldn't

interact much with the homebound teacher.

>

> Hope you find something that works!

>

> Take care,

> (NEMO carrier)

> Mom to Hayden (14-unknown PID)

> Evan (14-unknown PID)

> Conner (14-NEMO; transplanted 8/17/07 - from an anonymous donor)

> Kelsey (12-unknown PID and NEMO carrier)

> Wife to (unknown PID)

> www.caringbridge.org/visit/smithkids

>

>

>

>

>

[Guest guest]

Hi Cyndi,

Treating the adrenal insufficiency was a combination of weaning the inhaled

steroids and supplementing with hydrocortisone. He was on hydrocortisone

(Cortef) for months and was dosed on a very slow taper. We went through this a

second time after transplant, he was on a lot of steroids afterwards and they

knew he would lose adrenal function again. He is finally growing again which

likely means that he has full adrenal function. We follow up with our endo in a

couple of months. Let me know if you have any questions.

Take care,

Re: Temp regulation and excessive sleeping

Hi ,

How did they treat his adrenal gland?

Thanks,

Cyndi