new to site

[Guest guest]

Our family is new to the site. We our so relieved and excited to find

this group, as we have felt alone while dealing with this syndrome.

We have a 6 year old daugher who was recently diagnosed with .

Looking back, we have realized that we have dealt with the reoccuring

fevers for most of her life, but they had always been explained away

with her " having a virus " or " she is just a kid that runs high

temperatures. " It was not until about a year ago that my husband and

I decided we had to do something about her fevers. After extensive

documentation, monthly visits to the doctor during a fever, and tests,

we were lucky enough to encounter an on-call doctor who had once heard

of Periodic Fevers. As we began to research , we were amazed by

messages parents had posted. They were telling stories straight from

our own lives. And now, this site, finally there are people that can

relate. As you know, it is difficult, if not impossible, for anyone

who does not have a child with the syndrome to understand.

After reading some of the more recent posts, we have already began to

use some of the members for moral support. We had become a bit down

lately. Our doctor has done little more than diagnose and we can not

find anyone who has even heard of the syndrome. This is where we are

hoping some of you can help. We live in Longview, Washington, which

is an hour north of Portland, Oregon. We desperately want to find a

doctor who could continue to help us with the syndrome. From reading

the postings, we think the closest doctor is in Seattle. Please let us

know if you can help us locate a doctor. We have had several

questions and our pediatrician seems to know less then we do.

Thank you for the support and advice that we have already gathered

from your messages.

Kami, mother of Melaina (6 years old)

Longview, WA