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[Guest guest]

What's going on with the med issue?? Also did u speak with Dr. Barron about the

nightmares? Any flares? Breana has been getting some break thru stomach pain

and foot swelling..nothing like before I think some of it is the increase in

'summer fun'! But she is handling it like a trooper!

Breana is looking forward to our next trip out to NIH in July...so hard to

believe we have been doing this treck for almost 4 years! We strated with Dr.

Kastnre back in Aug of 2003!

finally a diagnosis, TRAPS r92Q gene/mimics

Hello, My son Stone, age 6 has had fevers as far as I can remember

April 2006. He may of had them previously but I really never

noticed. My husband noticed the fevers in December 2006 and noticed

them to be every month, and I didnt notice. I am a stay at home mom

of three. Stone age 6 is our oldest. So when he started

kindergarten and missed alot of days each month, I realize something

was going on since my other children never got the fevers. Last

summer I just thought he was swollowing too much water from the pool

and catching a virus. I did go back to work fulltime April of 2006

and quit two months later because of his fevers. When he started

complaining of stomach pain, headaches in the fall of 2006 thats when

my doctors did cat scans, blood tests. My doctor did not give me the

run around...she sent me to a Infectious disease specialist after he

had three fevers, under her care, red eyes at onset of fever, rash on

his bum, stomach pain and headaches , no mouth sores at that time.

Right now he has a mouth sore and ankle pain which he has never ever

had until NOW. (very odd). He had his first fever a few days ago

since diagnosis of TRAPS and I gave him Predinsone 6ml- 40lbs. Its

been two days and no sign of fever, some stomach pain. He is

normal. I am so happy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

At the cleveland clinic they are very " test happy " as I will call it.

They dont fool around and will jump to prescribe a test or have a

specialist look at the problem... My general peds doctor is very

seasoned and proactive in her approach.

We recently moved here to Cleveland and I know we would of not gotten

this diagnosis as soon and precisely. The Cleveland clinic system is

so much different and better then where we came from. We are blessed

to have moved here, even though I didnt want to! (job)

This doctor, Dr. Haaskas specializes in reoccurant fevers,

TRAPS//fmf etc. He has three cases in Cleveland and is going to

NIH this Fall and will have us go to participate in a study if all

works out. (to be discussed on Monday at our treatment plan visit).

We had DNA testing and of course many other test previously. Cat

scan, blood work during a fever and not when fevering. And a

colonscopy, endoscopy scheduled but cancelled (thank God!)due to the

diagnosis of TRAPS which mimics Pfapa we were told.

There is hope. If anyone is interested I will post our treatment

outcome/plan to treat this life long genetic disorder.

A visit to the cleveland clinic doctor for diagnosis is well worth it

if you can! Dr. Haaskas is the man to see.

mamarabbit05@...

N. Ridgeville Ohio