Re: Vascular effects of ?

[Guest guest]

You know it is strange - I was just thinking I should post something about my

daughters " cold " hands. She is only 2 but I have noticed her hands getting

really cold and then it seems to take a long time for them to warm up. I am

sorry I can't help with the other issues but I thought that this similarity was

something to note. I wonder if anyone else has this too?

Lori

>

> From: " cindyanngregg " <cindy_gregg@...>

> Date: 2006/12/27 Wed PM 07:48:58 EST

>

> Subject: Vascular effects of ?

>

> Hello all--I'm glad to find these boards. I have an 11 year old

> daughter who was diagnosed with about 5 years ago by

> Sherry, a rheumatologist in Seattle at the time (he is at Children's

> Hospital in Philadelphia now--what a great doctor).

> We were given a prescription for Predisone and she takes 2 teaspoons

> at the onset of an episode (she gets the mouth canker sores first

> which are painful to her). The fever subsides in a couple of hours

> and it all goes away.

> When she was younger she had episodes about once a month. Dr. Sherry

> had said that episodes would probably decrease in frequency as she

> got closer to puberty. That has happened. She now only takes the

> prednisone 3 or 4 times a year. We only got to see Dr. Sherry once

> since he had flown to Alaska (where we live)for a clinic. But I know

> he was correct in his diagnosis.

> The last 2 days, my daughter has woken up with extremely intense

> itching on her feet (toes). I thought it was athlete's foot, but

> after the second agonizing night (Benadryl allowed her to sleep), I

> took her to the doc this morning (a GP--thats all we have here). He

> said it didn't look like athlete's foot and looked more like a

> reaction to something. Her toes were a little swollen, hot and he

> said the circulation wasn't great, so suspected it was something

> vascular. She also has trouble with her hands getting cold easily and

> probably has " not great " circulation there either. But it doesn't get

> in her way of normal life--her never has.

> The doctor (who admittedly doesn't know much about ) said it

> almost looked like something autoimmune related and could be related

> to the . Is an autoimmune thing? He said to give her a

> dose of the prednisone to see if that would help (even tho she is not

> going through a periodic fever episode). I gave it to her earlier

> today, and so far, so good. It seems to be worse at night, so we'll

> see.

> Has anyone had any experience like this?

> Thank you!!

>

>

>

[Guest guest]

I take care of many children and have for years... many children that

age seem to have cold hands and feet. I don't know why but they often

do. It doesn't seem to bother them a great deal but it seems to be a

common occurrence. One of my day care children is the one who has

and that is why I am in the group. I have learned so much from this

group. It is very helpful in assisting the parents to take care of her

when she has the fevers. She is a sweetheart and I am so glad it was

finally diagnosed correctly so we now know what we are dealing with.

The pedi. kept saying it was just another virus and I knew that was

wrong because no one ever caught it from her. This group is a great

help with learning about this disorder so we can do our best for this

wonderful little girl. She is very special to me... I have had her

with me since she was a baby and she is now 2 1/2 years old. She

started having fevers last January.

Thanks for all of your help

Joanne

Provider for Kimi 2

slsjasrodgers@... wrote:

> You know it is strange - I was just thinking I should post something

> about my daughters " cold " hands. She is only 2 but I have noticed her

> hands getting really cold and then it seems to take a long time for

> them to warm up. I am sorry I can't help with the other issues but I

> thought that this similarity was something to note. I wonder if anyone

> else has this too?

> Lori

>

>

>

>

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<p>You know it is strange - I was just thinking I should post

something about my daughters " cold " hands. She is only 2 but I have

noticed her hands getting really cold and then it seems to take a long

time for them to warm up. I am sorry I can't help with the other issues

but I thought that this similarity was something to note. I wonder if

anyone else has this too?<br>

Lori<br>

</p>

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[Guest guest]

Hi!

Thought it interesting to read other posts about cold hands/feet.

Our daughter has always had issues with her hands and feet turning

bluish/purple and even a dark gray. It usually happens quickly and

often takes hours for them to return to normal. We've noticed it

happens often when the Tylenol/ Motrin kicks in but have also

noticed when she's not even fevering. We've mentioned it to drs but

got no answers!!!

- mom to Riley, almost 1 year!!!

>

> You know it is strange - I was just thinking I should post

something about my daughters " cold " hands. She is only 2 but I have

noticed her hands getting really cold and then it seems to take a

long time for them to warm up. I am sorry I can't help with the

other issues but I thought that this similarity was something to

note. I wonder if anyone else has this too?

> Lori

>

> >

> > From: " cindyanngregg " <cindy_gregg@...>

> > Date: 2006/12/27 Wed PM 07:48:58 EST

> >

> > Subject: Vascular effects of ?

> >

> > Hello all--I'm glad to find these boards. I have an 11 year old

> > daughter who was diagnosed with about 5 years ago by

> > Sherry, a rheumatologist in Seattle at the time (he is at

Children's

> > Hospital in Philadelphia now--what a great doctor).

> > We were given a prescription for Predisone and she takes 2

teaspoons

> > at the onset of an episode (she gets the mouth canker sores

first

> > which are painful to her). The fever subsides in a couple of

hours

> > and it all goes away.

> > When she was younger she had episodes about once a month. Dr.

Sherry

> > had said that episodes would probably decrease in frequency as

she

> > got closer to puberty. That has happened. She now only takes the

> > prednisone 3 or 4 times a year. We only got to see Dr. Sherry

once

> > since he had flown to Alaska (where we live)for a clinic. But I

know

> > he was correct in his diagnosis.

> > The last 2 days, my daughter has woken up with extremely intense

> > itching on her feet (toes). I thought it was athlete's foot, but

> > after the second agonizing night (Benadryl allowed her to

sleep), I

> > took her to the doc this morning (a GP--thats all we have here).

He

> > said it didn't look like athlete's foot and looked more like a

> > reaction to something. Her toes were a little swollen, hot and

he

> > said the circulation wasn't great, so suspected it was something

> > vascular. She also has trouble with her hands getting cold

easily and

> > probably has " not great " circulation there either. But it

doesn't get

>

> > in her way of normal life--her never has.

> > The doctor (who admittedly doesn't know much about ) said

it

> > almost looked like something autoimmune related and could be

related

> > to the . Is an autoimmune thing? He said to give her

a

> > dose of the prednisone to see if that would help (even tho she

is not

> > going through a periodic fever episode). I gave it to her

earlier

> > today, and so far, so good. It seems to be worse at night, so

we'll

> > see.

> > Has anyone had any experience like this?

> > Thank you!!

> >

> >

> >

>