RE: Re: temperature regulation

[Guest guest]

Sharon~~

Did I know you had RSD too?

Debbi

AKA: jetskideb

SoCal EDS'er

questions

>

>

>

> Hi all, I have a few questions.

>

> My daughter Kaitlyn, was dx Oppositional defiance disorder in june.

Does

> anyone know if this could have anything to do w EDS? Also does

anyone else

> have temperature regulation problems? When we get a fever it

skyrockets and

> can easily produce febrile seizures. My son Lodin was given

singulair

> granules to begin treatring his athsma. He is 15 months. We gave

him 1 dose

> and he got hotter and hotter, and went from being healthy to

seizing from a

> 105-106 temp. he was seizing for almost 2 minutes and was rushed to

the

> hospital in an ambulance. according to the papers that came along

with the

> meds it said fever was a serious side effect, and possibly

seizures, however

> the dr.'s have sworn up and down that there is no way that it could

have

> caused this. However within 4 or 5 hrs after this happened and he

slept for

> most of this time he was perfectly healthy again. I have not given

him more

> after that one dose.

>

>

>

> Any ideas? I applied for my hubby and both kids when I sent my info

to nih.

>

>

>

> Thanks in advance,

>

> Autumn

>

>

>

>

[Guest guest]

Sharon~~

Did I know you had RSD too?

Debbi

AKA: jetskideb

SoCal EDS'er

questions

>

>

>

> Hi all, I have a few questions.

>

> My daughter Kaitlyn, was dx Oppositional defiance disorder in june.

Does

> anyone know if this could have anything to do w EDS? Also does

anyone else

> have temperature regulation problems? When we get a fever it

skyrockets and

> can easily produce febrile seizures. My son Lodin was given

singulair

> granules to begin treatring his athsma. He is 15 months. We gave

him 1 dose

> and he got hotter and hotter, and went from being healthy to

seizing from a

> 105-106 temp. he was seizing for almost 2 minutes and was rushed to

the

> hospital in an ambulance. according to the papers that came along

with the

> meds it said fever was a serious side effect, and possibly

seizures, however

> the dr.'s have sworn up and down that there is no way that it could

have

> caused this. However within 4 or 5 hrs after this happened and he

slept for

> most of this time he was perfectly healthy again. I have not given

him more

> after that one dose.

>

>

>

> Any ideas? I applied for my hubby and both kids when I sent my info

to nih.

>

>

>

> Thanks in advance,

>

> Autumn

>

>

>

>

[Guest guest]

In a message dated 8/26/2004 9:28:41 PM Pacific Standard Time,

shazzinoz@... writes:

Good Luck with finding another med to use for your son's asthma and

with finding out about the temp regulation problems. I would be

interested in anything you find out about it.

One of the meds I did have great luck with is called Foradil. It is an

inhaled powder in a capsule, reacts for me like a dose of Epi & lasts for days.

However, at my over-40 age, they initially were cautious, as it can cause the

heart to work harder. Turns out the reason I did do so well on it was that more

of my problem WAS from a floppy. " lazy " heart....so the med was actually

making it act more normally! I'm not sure if that is recommended for kids, but

since so little worked so long, it might be worth researching.

Liza

[Guest guest]

In a message dated 8/28/2004 12:07:18 PM Pacific Standard Time,

unicorn_girl@... writes:

So my son is a double from a double and so on. Due to the temp problem and

a history of bad reactions my kids are not vaccinated. However before I

upset a lot of people we have a back up plan. My daughter has her varicella

vaccine and my son will be getting it before kindergarten unless one of my

friend's kids gets chicken pox first, and if any high risk breakout comes to

our area they will be given the shot for the threat. We have had meningitis,

seizures retardation and deaths due to vaccines in my family. >>>>

We've also got that double inheritance AND the reactions to vaccines. My son

did OK with his initially, but 's first nearly killed her. We haven't

vaccinated since. School fusses, but we have the doctor's notes handy & sign

the form on the back of their school record saying we decline the vaccines.

There's a ton of Internet info also on vaccines and what can be done instead

for most diseases, so do some research!

Liza

[Guest guest]

In a message dated 8/28/2004 12:07:18 PM Pacific Standard Time,

unicorn_girl@... writes:

So my son is a double from a double and so on. Due to the temp problem and

a history of bad reactions my kids are not vaccinated. However before I

upset a lot of people we have a back up plan. My daughter has her varicella

vaccine and my son will be getting it before kindergarten unless one of my

friend's kids gets chicken pox first, and if any high risk breakout comes to

our area they will be given the shot for the threat. We have had meningitis,

seizures retardation and deaths due to vaccines in my family. >>>>

We've also got that double inheritance AND the reactions to vaccines. My son

did OK with his initially, but 's first nearly killed her. We haven't

vaccinated since. School fusses, but we have the doctor's notes handy & sign

the form on the back of their school record saying we decline the vaccines.

There's a ton of Internet info also on vaccines and what can be done instead

for most diseases, so do some research!

Liza

[Guest guest]

In a message dated 8/28/2004 12:07:18 PM Pacific Standard Time,

unicorn_girl@... writes:

So my son is a double from a double and so on. Due to the temp problem and

a history of bad reactions my kids are not vaccinated. However before I

upset a lot of people we have a back up plan. My daughter has her varicella

vaccine and my son will be getting it before kindergarten unless one of my

friend's kids gets chicken pox first, and if any high risk breakout comes to

our area they will be given the shot for the threat. We have had meningitis,

seizures retardation and deaths due to vaccines in my family. >>>>

We've also got that double inheritance AND the reactions to vaccines. My son

did OK with his initially, but 's first nearly killed her. We haven't

vaccinated since. School fusses, but we have the doctor's notes handy & sign

the form on the back of their school record saying we decline the vaccines.

There's a ton of Internet info also on vaccines and what can be done instead

for most diseases, so do some research!

Liza

[Guest guest]

I have this as well as my son, we have a loooong history of it in my family

we also according to my previous geneticist, have a long history of EDS in

my family and many intermarried EDSers ( no close relations or incest or

anything like that tg) ie my husband and I both. both maternal grand

parents, both sets of their parents.

So my son is a double from a double and so on. Due to the temp problem and

a history of bad reactions my kids are not vaccinated. However before I

upset a lot of people we have a back up plan. My daughter has her varicella

vaccine and my son will be getting it before kindergarten unless one of my

friend's kids gets chicken pox first, and if any high risk breakout comes to

our area they will be given the shot for the threat. We have had meningitis,

seizures retardation and deaths due to vaccines in my family.

Hugs

Autumn

_____

From: Shazinoz

Sent: Friday, August 27, 2004 12:23 AM

To: ceda

Subject: Re: temperature regulation

I too have temperature problems.

I get VERY hot and sweaty easily and for NO apparent reason (i get

bad night sweats and VERY hot in bed sometimes) and my temperature

seems to naturally run that way (I also have RSD and this can cause

temperature regulation issues too I am told) but I have a thermometer

to keep a check on it and when ever I am sick I tend to get the fever

but not always with a noticible temp spike.

On the other hand I also feel that cold badly (I also have Raynaud's)

and have to be careful not to allow myself to get cold (especially my

hands).

I wonder if it is EDS related as so many of our systems seem to be

interfered with by the EDS (more than most doc's think).

As we seem to be sensitive to many drugs it seems likely to me that

the drug WAS responsible for your son's reaction. I have

found/developed many allergies in my life (especially now in my

30's), and am very careful when trying new medicatins (and even keep

prednisilone on hand to combat serious drug reactions (I have had my

face swell up like a balloon froma dose of antibiotics etc).

Good Luck with finding another med to use for your son's asthma and

with finding out about the temp regulation problems. I would be

interested in anything you find out about it.

Sharon (shazinoz)

> Temperature regulation problems?

>

> Yes but not as you describe.

>

> I have dysautonomia and my hot and cold is all whacky.

>

> My brother when he was a very little boy used to spike temps as you

> describe.

>

> 50+ years ago all they did was a spinal tap and that was neg.

>

> No temp problems for him since then.

>

> He gets really bad migraines like me and my dad used to too. Not

sure if

> that is at all related.

>

>

>

> My temp spikes have more to do with environmental issues coupled

with my

> autonomic system overreacting. more complicated that that but that

will do

> for now.

>

>

>

> I run a low normal @ -97 degree but I have heard that is pretty

typical for

> most of us.

>

>

>

> Debbi

>

> AKA: jetskideb

>

> SoCal EDS'er

>

>

>

> questions

>

>

>

> Hi all, I have a few questions.

>

> My daughter Kaitlyn, was dx Oppositional defiance disorder in june.

Does

> anyone know if this could have anything to do w EDS? Also does

anyone else

> have temperature regulation problems? When we get a fever it

skyrockets and

> can easily produce febrile seizures. My son Lodin was given

singulair

> granules to begin treatring his athsma. He is 15 months. We gave

him 1 dose

> and he got hotter and hotter, and went from being healthy to

seizing from a

> 105-106 temp. he was seizing for almost 2 minutes and was rushed to

the

> hospital in an ambulance. according to the papers that came along

with the

> meds it said fever was a serious side effect, and possibly

seizures, however

> the dr.'s have sworn up and down that there is no way that it could

have

> caused this. However within 4 or 5 hrs after this happened and he

slept for

> most of this time he was perfectly healthy again. I have not given

him more

> after that one dose.

>

>

>

> Any ideas? I applied for my hubby and both kids when I sent my info

to nih.

>

>

>

> Thanks in advance,

>

> Autumn

>

>

>

>

[Guest guest]

THAT'S WHAT I DO, ALSO MY MOM IS ALWAYS LOOKING FOR NEW IDEAS ON

IMMUNOPROTECTION

Drs notes and such are a blessing. Personally I am wondering if/how these

problems go back to the EDS somehow

Its nice to know that im not the only one dealing with this issue

Hugs

Autumn

P.s. I am looking forward to the NIH study cause the geneticist that took

over for my old one that knew all about EDS is an idiot and calls EDS a

label and avoids making the diagnosis

_____

From: Thing1973@...

Sent: Saturday, August 28, 2004 4:03 PM

To: ceda

Subject: Re: Re: temperature regulation

In a message dated 8/28/2004 12:07:18 PM Pacific Standard Time,

unicorn_girl@... writes:

So my son is a double from a double and so on. Due to the temp problem and

a history of bad reactions my kids are not vaccinated. However before I

upset a lot of people we have a back up plan. My daughter has her varicella

vaccine and my son will be getting it before kindergarten unless one of my

friend's kids gets chicken pox first, and if any high risk breakout comes to

our area they will be given the shot for the threat. We have had meningitis,

seizures retardation and deaths due to vaccines in my family. >>>>

We've also got that double inheritance AND the reactions to vaccines. My

son

did OK with his initially, but 's first nearly killed her. We

haven't

vaccinated since. School fusses, but we have the doctor's notes handy &

sign

the form on the back of their school record saying we decline the vaccines.

There's a ton of Internet info also on vaccines and what can be done instead

for most diseases, so do some research!

Liza

[Guest guest]

THAT'S WHAT I DO, ALSO MY MOM IS ALWAYS LOOKING FOR NEW IDEAS ON

IMMUNOPROTECTION

Drs notes and such are a blessing. Personally I am wondering if/how these

problems go back to the EDS somehow

Its nice to know that im not the only one dealing with this issue

Hugs

Autumn

P.s. I am looking forward to the NIH study cause the geneticist that took

over for my old one that knew all about EDS is an idiot and calls EDS a

label and avoids making the diagnosis

_____

From: Thing1973@...

Sent: Saturday, August 28, 2004 4:03 PM

To: ceda

Subject: Re: Re: temperature regulation

In a message dated 8/28/2004 12:07:18 PM Pacific Standard Time,

unicorn_girl@... writes:

So my son is a double from a double and so on. Due to the temp problem and

a history of bad reactions my kids are not vaccinated. However before I

upset a lot of people we have a back up plan. My daughter has her varicella

vaccine and my son will be getting it before kindergarten unless one of my

friend's kids gets chicken pox first, and if any high risk breakout comes to

our area they will be given the shot for the threat. We have had meningitis,

seizures retardation and deaths due to vaccines in my family. >>>>

We've also got that double inheritance AND the reactions to vaccines. My

son

did OK with his initially, but 's first nearly killed her. We

haven't

vaccinated since. School fusses, but we have the doctor's notes handy &

sign

the form on the back of their school record saying we decline the vaccines.

There's a ton of Internet info also on vaccines and what can be done instead

for most diseases, so do some research!

Liza