Re: Hi-New to the Group

[Guest guest]

Hi ! Welcome to the group. You WILL finds tons of information.

Sometimes I have to take a break from reading all the posts...there is just

soooo much.

I...like most of us...can relate to what you are going through.

Sometimes you just feel so overwhelmed! I can tell you the thing that has made

helped ...is the prednisone. It does not work well for everyone though.

had sever headaches, dizziness, and stomach pain (besides high fevers) and

within 30 minutes of the medication he is almost back to normal. With ,

the medication has not brought his episodes closer together, like other

children. Also, his doctor said when a child has that kind of response with

prednisone (symptoms gone after taking pred.) it is a good sign that he has

> Of coarse....you still need to rule out other illnesses first. But, his

doc said if he had something else, other than , his symptoms would have

come back and not been gone totally. I hope I'm making sense. Anyways, read

on. You will have many of your questions answered by reading the posts and

links. Good luck and hang in there. Cheri

[Guest guest]

, I agree with cheri, My little girl responds

excellent to the prednizone (fever gone in about an

hour). She still acts a little down for the five days

but has no fever. My wife and I both work full time

with twin boys 18 months and our little girl with

3.5, I remember a guy at work saying " your kid

is sick again " real snotty of course. Watching your

kid suffer every two weeks is horrible enough let

alone all the dime store advice.I thank God we got

this diagnosis and put our lives back on track. At

least you can manage this disorder.Stay positive and

keep reading, Ive learned so much from others.Good

luck. Steve.

[Guest guest]

, I agree with cheri, My little girl responds

excellent to the prednizone (fever gone in about an

hour). She still acts a little down for the five days

but has no fever. My wife and I both work full time

with twin boys 18 months and our little girl with

3.5, I remember a guy at work saying " your kid

is sick again " real snotty of course. Watching your

kid suffer every two weeks is horrible enough let

alone all the dime store advice.I thank God we got

this diagnosis and put our lives back on track. At

least you can manage this disorder.Stay positive and

keep reading, Ive learned so much from others.Good

luck. Steve.