Wats wrong? Is this a disease?

you have not given your age in the description. any way since you had seen a pediatric doc , i assume that you are definitely less than 18 years of age. given that, yes your problems could be a not so common a problem. I would suggest you to go to a hospital which is attached to a medical school/college. docs over there would have more expertise on the rarer diseases, right equipment to diagnose the disease process and also have the right solutions. good luck.