New with questions:)

[Guest guest]

Hi Everyone,

My name is and my son, Evan (age 2) was just diagnosed with

. I was very excited to have found this group since this is

the first I've ever heard of this syndrome. It is nice to finally

have an answer to the recurring fevers. He's had them since he was

a baby. They did a urine test and a blood test and everything came

back normal, but during the exam the doc found swollen glands and

several ulcers in his mouth and on his throat so coupled with the

recurring fevers, he said it was . He said he could prescribe

steriods if the ulcers were really bothering him or if he was

feeling really bad with the fevers, but said they had side effects

so if he does ok without them its probably better not to take them.

I was reading some of your posts and found the steriods often cause

the fevers to come more frequently so I'm happy with the decision

not to take the steriods for now.

I've noticed several of you are heading to NIH for testing. We live

so close to NIH, only about an hours drive, do you think I should

check into taking him there? What are the benefits of testing? Are

they picky about who they accept? Sorry for all the questions, we

are so new to this and the doctor just gave us the diagnosis, but

didn't really go any further so I assumed that was the end and its

just something we have to deal with. Do you think I should try to

see a specialist (his regular pediatrician made the diagnosis) to

get further testing or info and if so what type of specialist

handles ?

Also, how do you deal with school settings where they don't like to

take kids when they have fevers? He missed so many tumbling and

preschool classes this past year because he was have one of his

fevers. All my friends kept cancelling playdates thinking he was

sick and not wanting to get their kids infected, but it was always

funny that none of my other two kids every caught the fever from him

(they are ages 6 and 5). Now that I know what it is I really want

to educate those around us that he's not contagious and other than

feeling lethargic when his fever is up, he's fine otherwise. Do you

have to get your doc to write a note to the school?

Thanks so much for letting me join the group! I look forward to

hearing from those of you who have been there, done that:)

Thanks again!