Thanks for response

[Guest guest]

I want to thank all of you who responded to my question about swelling in my

fingers. I guess that since this thing seemed to happen over night, I

expected it to get better just as fast. Not very likely. I did talk to my

Dr. about antibiotic therapy after reading about it on this list, but he

said if my case were milder we would consider it. I guess my must be

moderate to severe since it all happened so quickly. I keep reading

everything I can find on new drugs and try to think positive. What

improvement there has been is wonderful, at least the horrible pain is gone

and I can do most things for myself again. Thank you all for your response.

It really helps to talk to people who really DO understand what you're going

through. I think most people look at me and can't see anything wrong, so

therefore there must not be anything wrong.

Thanks,

Joan

[Guest guest]

Thank you Fran for your response. I cannot tell you how comforting it is to me

to draw on your experience and support. God Bless!

Tracie

Mother to Ellie (4 yrs) - tonsillectomy on 12/22/05 and episode free for 6 weeks

Fran Bulone <fbulone@...> wrote:

Hi

There is no current study although we have been told by a few ENT doctors

that they are getting research together. It does take time to set that up.

It will also be difficult to get accurate statistics.... because we have

about 6 members here who have children who did become fever free for many

months to years and later.... fevers returned.

Also difficult because it continues to appear that parents will now go for

tonsil surgery before getting all of the DNA studies.

I am guilty.. in the sense that ph did have the available DNA studies

done back in 1999 and 2000 and we did remove his tonsils. Did not work for

us... Gather that it was because we now know that he has a genetic mutation

for NOMID. Sadly I put him through a horrific surgery.... (and it is a

difficult surgery with HIGH bleeding complication rate)..... and he does NOT

have .

Hopefully a true research study will come out with adequate follow up of the

children. The prob with the initial study for was the LACK of follow

up with the children who participated from 1987 to 1997. Since the research

study was not set up for a follow up in a decade or so.... with the new

genome study and isolation of many many mutations.... many of those children

were most likely mis-diagnosed.

This is a very confusing disorder as are ALL of the Periodic Fever

Syndromes.

God Bless.

Fran

Fran A Bulone

Mom to ph 6 yrs old

Waxhaw, NC

Owner & Moderator Group