Kids with FMF

Hi everyone, I am a 29 year old mother with a 4 year old son with FMF (Familial Mediterranean Fever) . My husband and I both don’t suffer from FMF, but wish every single day that I had the disease instead of my son. We were lucky to diagnose him at age 1 when the reoccurring fevers without any other symptoms didn’t make any sense to me. We did a specific genetic test on him and the lab confirmed the FMF mutation. It has been a battle for us ever since to try to figure out a normal dosage of colchicine for a toddler who is starting preschool. Currently he takes one pill in the morning and a half a pill at night and it seemed to work for couple of months but now we are almost back to square one. Since January of 2008 he has been having episodes almost every other week, and when combining that with the regular cold and flu every 4 year old gets, it leaves him with 2-3 healthy days in a week. I think I feel more frustrated b/c this disease is so well hidden and taboo to talk about in the Armenian culture. I have been searching for parents who have kids with FMF and with such an early onset, but no one seems to want to talk about it. I’m considering opening a support group for parents and the people suffering from the disease. I would love to talk to anyone who has had the FMF from an early age and also the dosages of colchicine they have taken. Also any informtion on the diet would be very helpful. Any comments would be appreciated.

Concerned mother