Louise and Julian’s Story

My name is Louise, my son Julian is age four, he will be five in three weeks. He was diagnosed with UP two months ago. Julian got chickenpox when he was four months old. He was left with small marks on his skin. For years I assumed they were from the chickenpox. I had no reason to think any different as Julian has always been very healthy and when he has visited his local GP over the years he has never showed concern. He has had the usual coughs or throat infections as he is in playschool the last three years and picks things up. Julian’s marks never blistered or got red. He has a small bit of eczema on his arms. At a recent dermatologist appointment as they were going to discharge Julian they asked me to take his top off. When they saw the spots on Julian’s back they confirmed UP with a Darier test. In the past two months Julian has had a tryptase test that is normal 5.2 and is awaiting a histamine level result which should be back within a couple of weeks.

At first I was very scared as they gave me a leaflet and told me not to google – which by the way I had to do and I scared the life out of myself. I then contacted this group and the people in the group have been really good to me to help me understand this condition. Throughout the hospital appointments that I have had for Julian the group have been great with information about different questions to ask the doctors. My son attends a local consultant and she decided to bring Julian to the main children’s hospital here in Ireland. A group of doctors sit there every three months and see unusual cases. Julian attended this clinic. In total he has seen fifteen doctors. Two of the doctors were the top dermatologists in Ireland, the cream of the crop my doctor said. The doctors came in individually and then they had a meeting together about Julian at the end of rounds. My doctor said that Julian does not need a biopsy which I am happy about. They feel that Julian will not even remember having the spots as they will be gone in a few years. They do not feel that he will have any problems as his spots are so few and small to cause any sickness. I am still a little nervous as this is all new to me but they have assured me if there was any doubt then they would send him to a haematologist and he does not need this. They are happy to look after him as they are with regular appointments with his dermatologist.

Julian is very well. He has small reactions to running around a lot or maybe jumping around with his brothers but really up to now my son has been very, very healthy. I noticed nothing unusual about him. I have two other children age 15 and 9 so I am used to children and sickness. Julian never showed any symptoms from this condition. If I was to listen to the doctors now they do not feel he will. So fingers crossed. I thought this would be useful for other parents who have younger children to know that my son has lived nearly five years with little or no sickness no symptoms from the mastocytosis at all. I pray all the time it will stay this way.

[urticaria pigmentosa, UP, skin spots, child]