my name is leisa and my 10mth old dd has mastocytosis..
feeling very overwhelmed at the moment as to the lack of information on peadiatric mastocytosis.. with regards to systemic involment ..
she has severe reactions to all food - via the throat and gut.. she has allergic rhinitus /conjuctivitus, gerd , multiple food allergies/ intolerance and undx bowel issues which they seem to connect back to the masto coz of the reaction of the mast cells in the gi tract .. she has only recently started with skin lesions .(lucky for us as this lead to the dx of mastocytosis FINALLY )
joined a few masto sites but no one seems to frequent there.. so very lost with my self
looking forward to chattting some with you all !