Kelly and daughter Amber’s Story

I have 2 children one with mastocytosis, the cutaneous version. She is 18 months old and was diagnosed when she was about 6/7 months. I will be requesting Epipens, although Amber hasn’t shown any anaphylactic tendency just knowing it is possible I want to be prepared, this was all news to us! Also she has been on a low dose of antihistamine which did seem to help improve her sleeping but it’s now worse than ever, so I will be discussing the sodium chromate [sodium cromoglicate] medication and seeing if the dermatologist will look into it. Amber’s bad nights are always followed by loose nappies, which I’m wondering if she has a sore tummy, something both the mums I’ve been in contact with have said is common in the cutaneous form of the disease. Our registrar dermatologist has had us convinced that bouts of diarrhoea are a very bad sign, so we’ve kind of been in denial about it, but knowing that it can be nothing sinister is helping us to look out for it.

[cutaneous mastocytosis, gastrointestinal symptoms, child]