COLD URTICARIA REMEDIATION

Interesting. I wonder if those stick-on heating pads would also help and allow you to go more places? It does make perfect sense, though, that urticaria triggered by cold would be relieved by heat.

Hi -- My 13-year-old son has cold urticaria. I don't know how long he's had it; we only just figured out what was happening (after a few dips in a cold swimming pool) -- before that we were blaming the welts on allergies to mold & other things. We have an appointment tomorrow with his allergist -- it's my understanding that one of the things they try to figure out is if this is a relatively sole condition (i.e, perhaps cold and a few other allergies), or whether it indicates something called a mast cell disorder. I'm not sure I understand mast cell disorders very much, but it's my understanding that the cells in your body that are responsible for the hives & welts (mast cells) can be either overproductive or you can have too many of them or have them in places you shouldn't. Not sure that's right, but that's what I understand from what I'm reading. I hope to find out more tomorrow. In my son's case it seems that he's "becoming" allergic to more things with each passing month -- which makes the mast cell disorder seem awfully likely.

I guess the main thing you have to worry about is having such a severe reaction that your body goes into shock. We (luckily?) are used to carrying Epi Pens as my son has been allergic to peanuts since he was small. In hindsight I'm wondering if some of his very bad asthma reactions -- which coincidentally occurred during cold weather -- were in fact directly related to cold urticaria.

Good luck to you all and I'll try to remember to post what I learn from the allergist. Monica

Hi Purdy37 -- If it makes you feel any better, after visiting our allergist (who we've been going to for about 7 years), she seems to think my son's cold urticaria is perfectly manageable. As a matter of fact, she has an adult patient that still swims (and develops some hives while doing so) -- that patient takes prescribed antihistamines and carries an Epi Pen, and NEVER swims alone -- but is doing OK. As for my son, the doctor does not think this is a mast cell disorder. She prescribed Cyproheptadine 4mg [he's about 150lbs] 3 times a day -- and said he could take Zyrtec during the day and one of the Cyproheptadines if it made him too drowsy during the daytime. (It doesn't seem as sedating as Benadryl so far...)

My son reacted almost immediately to the ice cube test -- so I don't know how related the reaction time and anaphylaxis are -- our allergist explained that it was probably more of a quantitative thing -- that the greater the surface area affected the greater the risk. (That said, my son does not have some of the symptoms I've read that other people can have such as swollen lips from cold foods or drinks or any internal symptoms that we're aware of, so perhaps his risk is less...)

I would urge you, however, to talk to your allergist about prophylactic medication for asthma. My children have asthma and rarely wheeze -- a dry cough is the alarm bell for us that there is a problem. They're both on inhaled corticosteriod (sp?) medications (such as Advair & others) daily as a preventative -- the goal is to prevent them from needing the albuterol inhaler. If you find yourself needing the inhaler your asthma is not under control. (My children can be very asymptomatic while actually having really bad breathing scores -- the daily inhaled steriod makes a world of difference -- it keeps down the inflamation in the lungs and also helps keep the number of bronchial infections they get lower...

Good luck. We have ordered some "half-face" ski masks (they look like a combo neck/face thing) that covers the mouth and nose -- in preparation for the winter. I've corresponded to a few other people with this condition and they say that keeping the air warm helps a lot. My son has to wear gloves a lot -- especially when doing outside stuff. The new antihistamine medication is already helping -- he can now grab stuff from the freezer and not get welts on his hands. As far as the EpiPen -- we've carried them for years (he's also allergic to peanuts and latex) -- so we're used to it. I don't know if your doctor recommended this to you, but we carry a small fanny-pack or case and put liquid Benadryl in it as well -- might not be a bad idea for you as well. Also -- if you're nervous about the EpiPen, don't be -- our pediatrician told us years ago when in doubt -- use it. It will speed up the heart rate a bit, but works like a champ -- especially if you find yourself coughing uncontrollably in an asthma situation. (For example, my son and daughter who are both asthmatic got into some aromatherapy soap flakes a few years ago and were both coughing to the point where they were almost vomiting. The asthma medications finally worked on my daughter, but my son couldn't stop -- so we used the EpiPen and within SECONDS the coughing calmed down. Of course, check with your doctor first, but don't be afraid of them. (I'd also recommend having more than one -- I don't know if your a man or woman -- but it helps to have one stashed in your purse or backpack in case you're forgetful like I am...

Good luck. I feel so much better finding that this is a treatable, manageable condition. I think you're up against more challenges living in Canada (we live in Virginia), but hopefully you'll be able to venture out with the right medication and clothing.

Monica

Hi Write2ad -- has your doctor prescribed medication for you? The more I learn (the sites listed below are very helpful -- lots of people with CU), the more I learn that everyone is different in their reaction. For example, my son was started with a relatively low dose of something called Cyproheptadine -- that alone wasn't helping much, so now his doctor gradually raised the doseage of that medication and has also added daily Singulair and Zyrtec. It doesn't prevent the hives, but it lessens them. We have an appointment at the end of Feb. to discuss where to go from here.

I hope your doctor has prescribed an EpiPen. My son's allergist said that this is an allergy that requires them. She also pointed out to pay attention to the symptoms you're having -- in her opinion, if 2 or more "systems" of the body are affected by an allergy trigger, then use of the EpiPen is warranted. For example, my son typically breaks out in hives or a rash -- but there are times when his lungs are affected as well -- and that would constitute 2 systems (skin + respiratory). Some of the people I read about also have gastrointestinal symptoms when they're exposed to cold. I am not sure if the symptoms that affect your eyes fall into a "2nd system" category, but I would certainly mention it to your doctor. Other symptoms I've read about are feeling dizzy, fatigued, disoriented -- there are probably many others.

After my son experienced a few awful respiratory infections last year that were probably aggravated by having CU, we invested in several "ski masks" or masks that cover the lower half of the face -- at least they help keep his face covered and keep the air he breathes warm. We use scarves in the same way. Perhaps ski goggles could help you?

Good luck! It's definitely a complicated condition to live with, isn't it? Monica

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