Tonya
Hello. This is for the 4 yr.old little girl. Search the internet for every medical website on mastocytosis. I had to present a lot of information to my dr.s because they knew so little about it. I go regularly to a great dr named Dr. Marianna Castells at the Brigham & Women's Hospital located in Boston,MA. Have your dr.s try to reach her at the hospital and speak to her about any questions they have. She has seen many cases and forms of masto. and should be able to help. As for pain for your little girl, is this bone,muscle,joint pain? Pain from the skin itching, or stomach pain from nausea and diarrhea? There are so many forms of pain that can take place w/ masto. that that ie why it is hard to treat. There are around 11 different chemicals that are released into the blood w/ masto., so, think of how hard it can be to get the right combo. of medication to help w/ all the symptoms. It's been 2 years for me to be able to say that I feel (almost) normal again after trying so many combos of med. And please remember what triggers symptoms,such as stress,physical activity,certain foods or meds, etc.There is hope;most young children w/masto see it go away over time for some strange reason.Lots of times it seems their bodies "grow" out of it. I hope that will be the case for your girl. Keep a positive mind over this because it will help her so much,remind her how special she is, and if you have any more questions write back here and I will check in. Good Luck and best wishes to your little girl!