Braelyn’s Cutaneous Systemic Mastocytosis

The story of Amanda

Before yesterday we were a family of four with one of our little girls who had what we thought was an allergic response to milk and soy. After months of searching for what caused our baby to vomit frequently and break out in blisters on these little dark patches in her skin we are both relieved and terrified to have an answer! Her first spots began showing up at about 6 weeks old but we didn’t think much of it since I myself have dis colored areas of pigmentation (birth marks). Our main concern lay with her excessive vomiting and we tried every formula we could over the counter after failing to reduce it by changing my diet and feeding her breast milk. Eventually by November when she was almost 7 months old we took her to a pediatric gastrointestinal doctor who changed her formula yet again to prescription Elecare. We pointed out her spots (now there 3 areas of her body with them) and he seemed interested in them recommending a dermatologist take a look at them eventually. We began feeding her the Elecare and it seemed to help with the vomit but the spots began increasing in size and number. At her 9 month wellness visit we discussed the options of a dermatologist with her pediatrician and she said it may be good to have one just “take a quick peek”. Again we didn’t feel like it was too much of a concern as our first daughter had eczema so we were treating the flares Braelyn would get with antihistamines and topical lotion. Until about 2 weeks ago we felt the spots were manageable. I then received a call from my sister who was watching my girls while I was at nursing school and Braelyn awoke with a terrible reaction and rash over her head and body. At this point I decided enough is enough and took her to the dermatologist the next day. Two biopsies we taken one from the groin and the other from her chest. We were called to come in for the results which we recieved yesterday and that is when we discovered we are now the parents of two very beautiful little girls and one of them has an extremely rare condition called Diffuse Cutaneous Mastocytosis with Systemic Symptoms!