Katie and daughter Lara’s Story
Lara (who is now nearly 16) had the 50 pence sized, fluid filled blisters on her head when she was just under 1 year old. We were fortunate to be referred to a hospital, where it was decided that she had Urticaria Pigmentosa and Mastocytosis and gave us two Epipens [epinephrine] and prescriptions for ketotifen and ranitidine. We knew nothing about either condition and only really found out any useful information after hearing about this Group from the doctors at the hospital about 3 years ago. Lara has never had the permanent rash, but used to come up in all-over red, itchy rashes when she was hot, upset, stressed or came into contact with certain sprays.
When Lara was smaller, we found a wonderful church-based play group which had a nurse on their regular team, so they were happy to take Lara with her rashes and Epipens. This was followed by a really caring nursery, primary and secondary school, which have all done their best to cater for her problems – we have been lucky. At her secondary school they had to put a note round to all parents etc. requesting that the kids did not bring spray deodorants into school, as one whiff of these and she was covered from head to foot in the rash! Probably lots of smelly boys walking around the school now because of us!
Although she has always carried an Epipen with her (and the schools have always had spare ones there), we have never actually had to use them. She is still on Neoclarityn [desloratadine] and ranitidine each day and when we have tried to reduce the dosage she starts to itch again, so we assume she will probably need to be on these for a while longer. She also uses Altoderm lotion [topical sodium cromoglicate] on the rare occasions when she is itchy, but we only contact the doctors if we have a “hiccup” and fortunately these seem to occur less each year.
So, in short, although we had a ghastly time when she was a baby, with numerous worrying visits to hospital and dozens of tests, Lara is now a confident, happy teenager, who is taking her GCSE exams and is generally not troubled by her condition.
We are fortunate and I certainly feel for all the families who are going through tough times at the moment. Hopefully having this Group of caring, like-minded people will help a little in getting through them.
[urticaria pigmentosa, mastocytosis, skin blisters, skin rash, intolerance to odours, child]