?s, Pfapa or Hids, genetic testing, $

[Guest guest]

Hi all,

I'm new to the group since last week, and after much reading I am now

looking

into whether my daughter Lily (6) may be wrestling with Hids, instead

of Pfapa as our

Rheumatology at Children's medical cntr. narrowed down three years

ago. We ruled

out cyclic neutropenia and JRA at the time but never did any genetic

testing because

of the $, and because it didn't seem that it would change the way we

dealt with the

episodes anyway.

Is it correct that Hids will also respond to a single dose of

Prednisolone? We tried it a second time

last Week with Lily within a few hours of the fever symptoms starting

and by that evening she was

feeling good and eating, and went to school the next day!

Does anyone else w/a Pfapa diagnosis child find their episodes being

strongly influenced by stress, getting worn out or having a mild

cold? Lily gets fevers roughly monthly but we did experience two

months in a row last year without one, but usually it is a 3 1/2 to

5 1/2 week repeat, varying. I could never say, the 28th day is

coming, here comes a fever, but I can completely predict one based on

stress and a couple nights of staying up late (even by an hour) I

apologize if this has been covered in older posts.

Does anyone have a rough idea of how much genetic testing could cost

(assuming insurance will not cover it) to try to narrow down the

fever syndrome? I am waiting for calls back from Children's here in

Seattle before I contact NIH, although I am putting Lily on the very

long wait list for the current genetic study there. Does anyone know

of a good medical center for these issues on the West coast? I am

also waiting on the full copy of her med. records so I can see all

the results myself.

Okay long email but thank you everyone for your experience and

information, I am so glad to have found this group; it is giving me

new energy and hope to try to get help with this again.

d Timblin

mdefaye@...