Conference

[Guest guest]

Hello to All,

I am very interested in the conference, we were unable to go due to

just joining the group and becoming aware that there WAS a

conference. It really is wonderful to know there are other parents

out there just as frustrated and determined as my husband and I are.

How would I go about signing up or getting on a mailing list for next

year?

(5 years old) has begun another episode. This one is

approximately 2 weeks from the last one. One thing I have noticed is

he has a small " red " fever blister on his lip that hasn't gone away

for the past two months. Also he seems to have learned the art

of " burping " I'm not sure if this is related to the sickness because

he does it ALL the time and it just recently began. has been

fevering since October 2004. Has anyone else experianced this? Also

we just had Josh's 1st grade physical done and the poor little guy is

in 5th-10th percentile of children his age. It this common with

children who have ?

One more question, I noticed that some other parents where

experiancing nose bleeds. has had these as well, when I asked

the Pediatric Rhuematoligist he said it was from the prednisone but

Josh was having nose bleeds before taking the medication. Have any

of you experianced this?

My prayers are with all of you, thank you for your support.

Bonnie

Rochester, NY

mom to (5 years)

(11 years)