Re: Question: After Fevers Stop....Do they come back at Puberty?

[Guest guest]

Hi Fern,

My name is Marcie and my daughter was the one fever free. Her last

year of fevers was just a horror. She was in and out of the hospital

with 105 fevers. Finally we found a doc in NYC and she was tested for

everything under the sun an diagnosed with Pfapa. After that, nothing.

It just went away. Last year, she started middle school and was sick

every month. It seemed more like cold sick, and I just figured it was

all the new kids at school. This past May she started with the mouth

ulcers. Since then its been mostly mouth ulcers every month and low

fevers. November she had a full blown episode. We took her back to NYC

and they agreed that it was back. We just are doing tylenol/advil and

steroids... Now in 4 years there are a few new tests that can be done

and her pred is now a single dose. We use to have to do the 5 days and

taper off. I think now that she is older, her body is coping better.

She still gets a massive headache before the fever and then the ulcers

come. At least we know what it is and not shooting in the dark.

Only if she can't handle the episodes will I consider surgery. She just

went through so much as a baby with tests and needles. We will just

take it one episode at a time. She is able to tell the difference from

feeling sick or Pfapa sick. This is a good predictor for us.

actually sees a Ped Infectious Disease doc in New York and he treats

kids with this. is the only child he has that is African American

though. Interesting...

Hope this helps.

Marcie

[Guest guest]

Hi Fern,

Im in Marlton. We see Ped Infectious Disease dept of Pres.

Hospital/Cornell. Way to many names. She use to see a Dr. Stavola, but

he passed this summer. Now she is seeing his assistant(who also saw

her 4 years ago) Dr. Delamora. She is really nice. I took us only 6

years to get there! The only drawback of the pred is that the episodes

seem to shorten the time between episodes. Like I said before. We

are just going to take it one episode at a time. We are just waiting

for another episode to get her blood so we can do a new round of

testing. Now that she is 13, she seems to be handling it better and

she can now voice how she feels. When she was a baby, it was so scarey.

Anyway, , we did have a great 4 years of nothing, so maybe it will

happen again. I'm hoping.

Talk to ya soon Marcie