Cholinergic Urticaria

6-year-old with cholinergic urticaria?

by

Hi everyone! My son recently began to complain of severe burning and itching every time we would step outside, the walk from the house to the hot car (we live in Florida), or even being inside but starting to jump around. He screams and cries and scratches all over his body.

However, if he’s calm and inside the a/c he is perfectly normal and has no issues. We have not noticed any hives but we never leave him outside for longer than 2 minutes when he starts itching. It is horrible, and he’s only in first grade. He can’t play sports participated in P.E.

I am so stressed out and wish there was a way I could help him. We have an appointment for an allergist in October.

-Britt_maddox

Comments

  1. My 19 year old son has the same type of extreme pain and hives/iching from heat for the last 2 years. We have seen all the top doctors in San Diego in this timeframe. His pain management doctor has him on gabapentin and cymbalta which helps manage the pain but not contol it. His immunologist/ allergist has him on xolair which is controlling the hives/iching. The pain meds and zolair took a few months to see benefits from the drugs.

    • Hi, I have the same story as your son, I am 19 and developed this condition 2 years ago. Just curious, was he active up until this condition? I’m curious because I think this condition has something to do with sweating. Also is your son suffering from any other health/brain problems at the moment cause I am and I think they may all be related. I also live in California.

      • No other health issues or brain injury’s. However he has broken his hip, ankle, wrists (many times), front tooth, and too many to count bruising from impact. Prior to his CU he was a competitive amateur skateboarder competing at a pretty high level in the sport.

        He has been seen by almost every type of medical specialist other than an endocrinologist and dozens upon dozens of rare diseases with similar symptoms have been ruled out via blood tests, imaging, and other types of diagnostics tools. Also the cause for his CU is not related food/diet. However, others CU could be cause by diet or some of the medical conditions that have been ruled out for him. There could be many causes for CU.

        Next week he will undergo an autonomic nerve function test to further rule out nervous system disorders as the cause for his CU. I believe this testing will also evaluate sweating, but not sure.

        My impression is the sweat gland receptors are either down regulated, blocked by an antigen or a combination of both. Once he can power through the pre-sweat nerve pain by intense exercise, then subsequent sweating is not delayed and the pain is significantly reduced until he takes a shower. Once he takes a shower, then the intense exercise process has to be repeated.

  2. While you’re waiting for your appointment with the allergist, you might consider an allergy-elimination diet. I did that and my hives stopped in only 8 days. Initially, I eliminated foods that were known allergens (via the internet). Once my hives had stopped, after 8 days, I gradually added back into my diet one food at a time until I knew what I was allergic to. Turns out, I am allergic to dairy and Vitamin D derived from lanolin. I feel so bad when I see kids suffering. Just want him to feel better as soon as possible. You certainly have nothing to lose in trying it! Wish you the best!