Marcia and baby Samantha’s Story
My name is Marcia and after a wonderful (first) pregnancy I had Samantha by emergency C section. I remember when they lifted her out of my tummy I looked at her hands. I noticed what looked like a heat lump on the middle knuckle on her right hand but I didn’t think anything else about it as at 8lb 13oz she was a healthy, extremely beautiful baby.
Within a couple of hours her little body was covered in hives. The midwives said it was due to leaving the sterile environment of the womb into the air. A few weeks later, the hives had spread to her arms and legs. The health visitor in our case was not very helpful. She blamed the dog, washing powder, my clothes, me, and anything else she could think of. As a new mum I felt as though I was failing.
At six weeks old the hives were covering her body and she had roughened skin appearing around her ears, chin and neck. She was also in distress a lot of the time which I thought was colic and the only way she could sleep was to lie on her tummy much to the disgust of the health visitor.
I sacked the health visitor after a fraught visit and marched up to baby A&E and asked to be seen. I was extremely fortunate that day. There was a visiting dermatologist on the ward who recognised the condition as mastocytosis but admitted he wasn’t an expert on this condition. However it gave me the key to start my own research into this condition and the best way to help my baby. This is when I found the UK masto site.
By this time, Samantha had blisters, patches of thickened orange skin and itchy hives. She had them from head to toe, palms of her hands, soles of her feet, eyelids, ears and cheeks. In fact the only clear part of her was her tiny nose. She salivated constantly and itched like crazy. She also had a couple of stomach bleeds.
Stephanie was diagnosed with Diffuse Cutaneous Mastocytosis. The prognosis of her growing out of this condition at an early age is excellent.
We have now got a combination of specialists: a paediatrician immunologist, a dermatologist, a paediatric dermatologist and a paediatrician as well as interaction from a Spanish masto specialist and a retired doctor who specialises in sodium cromoglicate in our area. With swapping and changing (safe) medication we have found a cocktail that works well for Samantha and we are shortly going to undergo PUVA treatment to hopefully clear Samantha’s skin. She hardly itches and the excessive stomach acid and stomach bleeds seemed to have stopped.
The reason we have decided to try PUVA treatment is due to the social prejudice we have received. We have nearly been refused on an aeroplane, people generally move away from us once they see Samantha’s skin without taking the time to ask if she is contagious or not and I am worried that this behaviour may affect her social skills.
If I have any advice to give a masto mum it would be to fight, fight and never give up. A specialist told me that he wasn’t the expert on the subject, I was, as he did not have a child with mastocytosis.
Despite Samantha’s horrible condition she has continued to grow well. She is extremely precocious, very beautiful and at eight months old is already saying words and trying to walk. We love her so much.
[skin rash, hives, skin blisters, diffuse cutaneous mastocytosis, UV treatment, child]