alanasmommy07

I am at a loss. I don't know what to do to help my daughter. My daughter was born 10 weeks premature, weighing in at 2lbs 10oz. I don't know if that has anything to do with her pain. She will be 4 next month. She started with stomach pain with recurrent fevers about two years ago. We went to GI, she was on prevacid, it didn't help. We did stool studies and labs, all normal. Ultrasound, normal. Ended up going to Rheumatology and she was diagnosed with Familial Mediterranean Fever, a genetic disorder mutating the 16th chromosome, she has 3 separate mutations. They put her on Colchicine. It made stomach aches worse and it really didn't help. The fevers stopped and they said that the stomach aches were to frequent to be related to the disorder they stopped the medications. Continues to have severe stomach aches, occurring at random times. She wakes up at night in pain often. Not worse with a specific food. She goes 2-3 days with out eating but does drink lots of fluids, but no milk. She started with headaches about two months ago. Headaches are not a symptom of her disorder. They are frequent. She cries in pain, holding the front of her head about 3-4 times a week. Eye exam normal. For about 3 weeks now she has been extremely tired, constantly says she is tired and is sleeping more than normal. Any ideas?