Intro

[Guest guest]

Hi, we live in Indiana and have 14 year old triplet boys and a 12 year

old daughter. All four kids have mild to severe immune issues, so

dealing with illness is almost constant with us. One of our boys

underwent a bone marrow transplant last summer for NEMO deficiency

(nuclear factor kappa b essential modulator deficiency). He and I

lived in Cincinnati for six months during his hospitalization and

isolation. Before we left for transplant I had been concerned with

the frequent infections our daughter was experiencing, rarely anything

serious, rarely hospitalized, it was mostly sore throats and mild

fevers. Our immunologist put her on daily antibiotics and it really

didn't seem to make a difference. She also had other problems that

were bothering her, mouth ulcers every couple of weeks, pleurisy,

fatigue, night sweats, swollen nodes in her neck and her fingers and

toes peel every 4 weeks or so. Her immune function is not terribly

affected, she is not candidate for IVIG or transplant, so our immuno

finally insisted that we get her tonsils/adenoids removed, which we

did 2 months ago.

She continues to experience low-grade fevers off and on, mouth sores,

pleurisy, fatigue, night sweats, peeling skin, sore throats, etc. I

never thought to really document all that was going on, we were in

survival mode with my son being in and out of the hospital. When we

were back in Cincinnati this week, our immuno mentioned that he

thought she could have a periodic fever syndrome and that I should

start her on cimetidine to see if it helped her symptoms. I talked

with our family doc yesterday and he was willing to call in a

prescription for 300mg once a day for two weeks and then 600mg daily

for 30 days. From what I've read, this isn't really the standard dose

for this treatment (she's 100 pounds). I'm thinking of taking her to

our infectious disease doc in Indy to see if he can help me figure

this out - we haven't seen him in over a year. If anyone has any

advice, I'd greatly appreciate it. Does this sound like we are on the

right track?

Thanks for your help!