Teenager with mastocytosis uticaria pigmentosa

[Suziewooldridge]

hi

I am wondering if there are any other parents of a child with Mastocytosis Uticaria Pigmentosa?

My son was diagnosed at 4 months by great ormond street, given ketotifen, and seemed to “grow out” of it as the suggested he would. But from 14 onwards has really struggled with hives, excema, abdominal cramps, sever stomach issues, and anxiety/ocd.

Last seen in 2021 with no issues, Trying to get an appointment now as suddenly it occurs all the above could be linked to Mastocytosis. And he is one of the unlucky ones who mastocystosis continues through puberty? I have asked local doctor but they dismiss it as stress and food allergies.

anyone experience anything similar?

Thanks in advance,

Suzie

[Hidden]

Sorry you and your son have been dismissed - i can only help with the fact I have discovered I have a possible darier’s sign with the halo around the uticaria pigmentosa. Does your son still have the urticaria pigmentosa as that would point to the mastocytosis and could not fob you off to get a referral to immunology or dermatology? Sorry if that is not much help.

[Suziewooldridge in reply to Hidden]

Yes he has bad urticaria pigmentosa, his excemais now constant and sporadic hives mainly on his eyes and torso… pretty miserable for him.

Found this website which has convinced me to get him back into great ormond street as they are the only ones who seem to have any clue on mastocytosis,. My worry is he is now reacting very different,y to when he was a child. He never had hives or excema, or stomach issues, just a the dark lesions on his skin but they never blistered or anything.