OT: "Cold Induced Urticaria"

[William]

This is from a former student and friend of mine who is looking for information or experiences with "Cold Induced Urticaria". The forum has shown a great breadth of knowledge and I thought I would post this here to see if anyone here has any information that could help him and his daughter deal with this condition?

Thanks,
William

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Hello to all,
If I don't know you personally I apologize for that, but I do
appreciate your help. My youngest has a rare allergy know as "Cold
Induced Urticaria". She already has a peanut and egg allergy but
this one is over the top. She breaks out in severe hives when her
skin is exposed to cold water say in the 60-70 degree range. Now
that may not sound to serious but she went into anaphylactic shock
last week on a 85 degree day from going in the lawn sprinkler for 5
minutes. I don't know about you but when your wife calls you from
an ambulance for your child almost stop breathing , it's very
sobering. We have seen an allergy specialist at Children's Hospital
in Boston. She stated that it was the worst case she had ever seen.
She also said and could happen with AC ! Well that's just great.
Now I know there are worst conditions out there, and I feel for
those people, but I want some answers. Imagine if you will trying
to keep a 3 year old out of cold water year round. Not so simple. We
have even been asked if we would move. Where on this planet does the
temp stay the same ? anyone? The MD's want us to load her bump with
more Zyetec, Benadryll, and Zantac. Then maybe she can go in 85
degree water. Basically they don't know. Unacceptable to me!
This is what I need from everyone please. I would like everyone to
spread this email to friends and family across the Globe. There
must be someone somewhere that has a handle on this. We heard from
several people in Massachusetts that have similar conditions. We
need intel. Thank you for your time.
If you need more info or pics please email me back. All the best. Kevin

[Spicoli]

I am not sure if this will make your friend feel any better but as a child I had it aswell. Any exposed skin instantly became covered in hives and there was a fear for my parents (I was too young to have a clue) that it could spread to my respiratory system ect...ect. The only treatment prescribed for me 30+ years ago was to take baths and decend the water temp. gradually over time in hopes my body would acclimate. I am not sure if that helped or I just grew out of it but as I got close to my teens it all but went away and I grew out of it I guess? I actually spent most of my life from about age thirteen on surfing in the cold, cold, cold water of the northeast. So I am not sure but that may have helped me get used to it also? Now the only thing I have is sometimes my hands or fingers will swell a little from the cold but nothing terrible. I suppose I was lucky because I do have a friend who's daughter has it and she is now an adult in her late twenties and she still has to wear light gloves if the temps. get into the low 70's. according to my friend she just got used to it although he says they had a few scary moments since she was a gymnast and when she would travel to different arena's they would have to be very careful and watch what the air conditioning in the building was set at and bundle up accordingly. Again from what he told me, the only thing Dr's could do was subscibe anti-inflamatories and always, always have an epi-pen(SP) around. Even with her, it did seem to get much better with age. Best of luck to them and hopefully there is more known about this now?

Jeff

[vaxn8r]

Big difference between 60-70 degree water and 85 degree water or even just household AC.

I think aclimating gradually is important.

I also think a dose of benadryl or zyrtec 1 hour before exposure would go a long way in preventing flare-ups. Also. daily singulair might be a good idea for prevention.

Don't take any of this as medical advice. Only musing.

[William]

Jeff and Vax,
Thank you for posting. :cool:




William

[jhcakilmer]

Have you seen an immunologist, sounds like he possibly could have compound immune dysfunctions that could be exagerating the hypersensitivity reactions. Obviously, he already has a hyperreactive response, but if he is deficient in certain innate antibodies, T-cells, etc he could be having a hard time clearing the allergen.

Also, I know it's frustrating, but keep working with your GP, and specialist...if there is another issues, you want to catch it sooner, rather then later. Proactive patients always get better care!