I’ve had cholinergic urticaria since I was a toddler. It would go into remission for a few years and then pop back up. It wasn’t until 3 years ago at age 22 that I learned that it does exist! All of a sudden I felt like when Pinocchio became a real boy.
About 8 months ago I started on propranolol, but I only take it as needed, which isn’t often since I seem to be in remission right now. I sought treatment as it was interfering with my job and I couldn’t handle it anymore if there was relief available. All this to say, my GP only prescribed the meds to appease me.
She had never heard of it. Today we took my 2 year old to his pediatrician to get a referral to a specialist to find out if his rashes are likely cholinergic urticaria as well. His pediatrician and my GP both separately dismissed the symptoms (I left my GP after) because neither of them are aware of it. The pediatrician kept correcting me to say “urticaria” instead of cholinergic urticaria.
My blood is boiling.
I went through torture as a child because mine wasn’t diagnosed, and while I’m not ready to seek radical treatment for my son’s rashes (he’s not complaining and they aren’t frequent), I would prefer he were able to tell us what he’s experiencing before we treat since it’s mild.
I am seeking to have it either ruled out or diagnosed (if possible), so he doesn’t go through the same torture I endured. But we have no idea what specialty to look in. He had a totally negative allergy panel. Pediatrician referred us to dermatology despite me telling her that it’s a systemic rash we are asking about. I’m wondering about endocrinologist or if we should return to allergist.
If anyone has found a competent provider, please share their speciality. Also if you know a provider in Dallas/Fort Worth I would love a reference!!
Thanks in advance,