Adele and Mandy’s story

Mandy first showed her marks at 8 weeks old and they steadily progressed from there; I had been told by many GPs that it was eczema. At 8 months old I asked for her to be referred and for the next four months she had tests for everything. No one knew what it was but whilst at an appointment I was waiting to get her weighed and a lady doctor walked past me then came back over and asked how long she had Urticaria Pigmentosa for I was amazed and grateful I now had a name to it. The consultant I was seeing referred her to another dermatologist who said she may need an anti-histamine now and again but there would not be any other symptoms, this was seven years ago and I did not have access to a computer.

I had a son 20 months older than Mandy, he was so placid whilst Mandy cried a lot but I just thought maybe she was just a harder baby. She used to bring her bottles up a lot but I put it down to trapped wind etc, etc. We had quite a hot summer and she started getting quite flushed with very loose nappies and sick quite a lot. I took her back to the dermatologist to see if it could be anything to do with the masto as I had now looked on a dermatology website which stated that these could be connected. The registrar who saw us said no it wasn’t and if it was I would have to rush her to hospital. It makes me cross now to know that it is all connected and that sometimes doctors etc should admit they don’t know enough about the condition.

I eventually found and joined the masto support group and the information available now is fantastic especially with the extra support from members by email. I found the information very good although very scary at the same time.

Mandy’s symptoms with the masto continued to be bad up until the age of three; I have to say I was worried sick and I felt I had a poorly child, however she started to get better very gradually, sometimes I would get so upset to see her with tummy ache and would just have to give her a hug. On advice from the group I asked the consultant to prescribe her an H2 [antihistamine] for her tummy and this seemed to help her. She has only reacted to a couple of things, one is Haribo jelly sweets and the other is Sudafed [pseudoephedrine], her reaction symptoms were not bad she just had hives on her skin and she felt a bit rotten for a couple of hours, I gave her Clarityn [loratadine] and it soon disappeared. Mandy had been prescribed Piriton [chlorphenamine maleate] but this made her a bit lethargic so we changed it to Clarityn which gives her 24 hours protection and is non drowsy. Mandy isn’t on any medication and only has it if she reacts. Mandy has never reacted to physical exercise and is doing really well at school; I was so worried when she started that she would be bullied but her friends and classmates have been fantastic. They originally asked her if she had chicken pox and she told them they are her jelly sweet marks and they seemed quite happy with the explanation. Mandy is doing really well and apart from her marks she is a healthy child. She has an Epipen [epinephrine] which I keep just in case but I don’t take it everywhere with us and if I really had the guts to do it I would do away with it all together (it’s become a bit of a safety blanket). She hasn’t had any regular medication for a few years, she eats anything and everything.

[urticaria pigmentosa, skin spots, gastrointestinal symptoms, mastocytosis, child]