Alana and son Jay’s story
Jay is 22 months old and was diagnosed with Urticaria Pigmentosa when he was about 13 months old, although he has suffered with it from when he was a few days old. He has a rash all over his torso and legs most of the time and suffers from stomach cramps and loose stools. Heat and friction are the main things that affect him and we have to be very careful what he eats, he is also affected when he gets upset or too excited – both of which are a regular occurrence in a toddler!
It took a lot to get Jay diagnosed with Mastocytosis – for the first 8 months or so we were just fobbed of by doctors and health visitors being told he had eczema or that we were letting him get too hot/using the wrong washing powder etc! We persevered as we knew there was more to it than that and eventually Josh was referred to a dermatologist and was given a skin biopsy to determine the problem. He also had several blood tests some of which showed a low immunity, due to his stomach problems they were concerned that Jay may have Systemic Mastocytosis, however he has since been retested at a local Children’s Hospital and the tests came back this time as normal immunity for a child of his age. The diagnosis has therefore remained as Urticaria Pigmentosa/ Cumulative Mastocytosis which he should hopefully grow out of by puberty.
Before Jay was one he used to get a lot of large sore, water-filled blisters which used to get infected, however since the age of one he has been taking Cetirizine (an antihistamine) and Nalcrom [sodium cromoglicate] (mast cell stabiliser) and he now still has a constant red ‘orange peel’ type rash but less blistering. I think we still have a long way to go in getting his medication correct, but this group has been absolutely brilliant, such a great source of support and information and we definitely would not have got this far without them!
[urticaria pigmentosa, gastrointestinal symptoms, reaction to heat, reaction to friction, skin biopsy, skin rash, cumulative mastocytosis, child]