Rowena and Lester’s Story

My son Lester (10 months) was diagnosed with CM/UP [cutaneous mastocytosis/urticaria pigmentosa] when he was 3 months old. He was born with only 2 blisters but over the weeks he developed many, many spots. He is pretty much covered from head to toe. The spots on his face are flat and less red so some people comment they look a bit like freckles (large freckles!)… others comment on “measles”…

In the early days he seemed OK, uncomfortable at times but nothing I could pin-point. Wasn’t too itchy either. But the next few months he just got much worse. Didn’t sleep well, very wriggly when you hold him to soothe him. During the day he was “generally” OK, although I could tell he had tummy pain at times, he often tried to re-position himself. Would scratch at any opportunity.

He was very wheezy/chesty which I thought was due to many colds/coughs etc, but now realising that’s not the case.

Then….. at 11 months, after seeking support and information from this group … our doctor at the hospital prescribed the necessary meds and creams which have just changed all of our worlds….

Lester is doing great, sleeping great, growing great, happy most of the time as he should be, eating well, still has the big “D” [diarrhoea] but hey, that we can all cope with!!! Still very spotty but they rarely bother him…. bother a lot of other people yes!!!

[cutaneous mastocytosis, CM, urticaria pigmentosa, UP, skin spots, itchy skin, gastrointestinal symptoms, child]