I believe my son may have Cholinergic Urticaria. Please review my details below and advise ASAP.
I think my son may have Cholinergic Urticaria. He’s had the identical symptoms described in this website for about 3 years now. We took him to his pediatrician about 2 years ago for this, and she referred us to a neurologist. She could not figure out what my son had, and both doctors were puzzled.
No diagnoses was ever made and I was told to bring him back if the situation re-occurred. Well today, 2 years later, my son had an unusually much more severe onset (this time he had visual changes which is new), then within 7-8 minutes it subsided and he was fine.
I literally watched the whole event take place as we drove home after eating breakfast at IHOP. He said he suddenly became very hot, and “felt like pins were poking his back and the back of his neck”. I literally watched as large bright red hives ( similar to red welts) came up around his neck, and up towards his jaw line; they were also on his forearms and tops of his hands.
Then he began to blink rapidly (like a fast flutter of eyelids). He immediately rolled the windows down in my car (we were driving) and he then stated he felt like he was getting ready to “pass out”. The hives subsided within 7-8 minutes and by the time we arrived home he was perfectly fine, as if nothing ever happened.
I was terrified as it was one of the worst things to witness, he later described it as “everything started going black, just like when I stand up too fast.” He said he didn’t want to tell me this in the car because he didn’t want to scare me (!?!). I called his pediatrician and spoke to her nurse, she advised me to take my son to the ER immediately.
However, like I said he is perfectly fine now. No signs or symptoms that anything ever happened. So I refrained from taking him into the ER and am trying to scheduled him for a doctor’s appointment tomorrow ASAP! Please feel free to email me and advise. I am very, very concerned about these symptoms, I believe the episodes are becoming much more severe and worsening each time he has one.
Although he expressed no difficulty in breathing during the event, I wondered if this was perhaps a “pre-anaphalactic reaction ” and eventually the breathing will become effected. Should we see an allergist or neurologist? Who? Any help or advice is very much appreciated!
Thank for reading and please contact me should you have a solution or recommendation for me.
Thank you kindly,
Louise (a concerned mother)
Hivesguy says
Hello, Louise.
I’m sorry of the struggles your son is facing. The first thing I would advise before anything else is to ask your doctor about an EpiPen in case your son ever does go into anaphylactic shock. Those symptoms do sound very serious. I would make an EpiPen a high priority, and make sure he takes it with him (and maybe get one for youself to keep as well).
Secondly, an allergist or dermatologist may be helpful. It can be frustrating dealing with doctors because, as you already pointed out, many aren’t familiar with the physical urticarias.
Considering your son experienced this reaction after leaving IHOP, it makes me wonder if he perhaps has a serious food allergy or intolerance that you aren’t aware of? Food allergies can sometimes come out of nowhere, and food was a particularly important factor in my cholinergic urticaria. So that may be something you begin considering. Go over what he ate at IHOP as a starting point.
Physical hives such as cholinergic urticaria often overlap other allergic conditions.
I certainly hope the little guy gets relief from his hives and symptoms soon.
Louise says
Dear Hives Guy,
Official diagnoses received from the Allergist today reveals that my son indeed has Cholinergic Urticaria. We’ve started him on a daily dose of Zyrtec and an Epi-pen is to be kept on him at all times. The doctor drew additional Lab work to determine if he may have Mastocytosis; A stressful day for him (to say the least) during the lab draw he passed out hitting his head against the wall, he slumped down and began “snorting” loudly for air.
The lab girls both screamed and called the doctor, nevertheless, he “came to” and is fine now, resting at home. I’m hoping this diagnosis doesn’t impact his life too much. He is a strapping, 6’4,” 198 pound, 16 year old young man with a lot of hopes and dreams. I read that Cholinergic Urticaria can last anywhere fro 7-30 years (yipes!) and there’s really no explanation behind the cause.
Lot’s of theories though. Anyway, I just wanted to keep you posted on my son, as the last time I wrote you (a week ago) the docs were still scratching their heads trying to figure this out. It started with a pediatrician, then went to a neurologist, and finally the allergist confirmed the diagnosis today. Interesting enough I googled it over a week ago and told the pediatrician from the beginning what I thought it may be, she dismissed it stating “Urticaria lasts much longer than 7 minutes” (as my son’s severe case over a week ago was a 7 minute episode).
Anyway, here we are! Thanks for the support and keeping me informed regarding this diagnoses as a possibility. I don’t think it’s as well known in the medical community as is should be. Although I’m not one to self diagnose, I do read a lot and I’ve never been afraid to ask questions and I am persistent as can be. Thank GOD because it paid off for my son and it may pay off for others as well. READ AND ASK QUESTIONS!!! Take care out there and thanks again Hive Guy! Louise and son
Hivesguy says
Thanks so much for the update, Louise.
I’m sorry to hear of your son’s ordeal at the doctor, but at least he is properly diagnosed now. You two can read up more about ways to manage his symptoms, and continue working with the doctor/allergist until he finds something that helps. Your persistence definitely paid off, and I’m sure it means a lot to your son having a mother who cares so much!
Make sure to let him know that this will not stop his dreams. He absolutely can and will go on to do great things, and this is just a setback and challenge that I think he will overcome in time.
God bless you both, and I hope he improves soon.
Hivesguy