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PostPosted: Mon Feb 26, 2007 1:16 am 
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Joined: Mon Feb 26, 2007 12:54 am
Posts: 3
Location: South Australia
Hello,


I am new to this forum which I only found on here today. I am hoping to find some people out there who have Cold Urticaria the same as my 12yr old boy. He has suffered from this condition for the past 4 years and up until today was treated and kept under control.

He usually has this come out a couple of times a week at best and it can be anything cold that will trigger it. Today he was at school doing swimming lessons. I have spoken to the school and teachers etc to let them know about this condition and they have been great in keeping him well and medicated and warm when needed.

Today was different. I got a phone call at work this morning to tell me he had a severe reaction and his hives were everywhere on his arms, neck and face. They had given him a warm shower and medication before I even got there but when I arrived he looked very pale and washed out also. He said his head was really aching. I got him up to take him home when he started saying he couldnt see that his vision was going and he felt sick. All the colour went from his face and his breathing got really fast and he was having trouble getting air. He then passed out. I got him to the hospital very fast in the car not even thinking what I was doing and carried him into to Accident emergency.

He is now at home after taking more medication in the hospital and then coming around.

This has scared me and I am feeling like I need to talk to someone who may have children or may have done this themselves. It is so hard to talk to people about this condition because if they dont see it with their own eyes they dont believe it.

Berni

_________________
Son 12, Cold Urticaria, Asthma, Hayfever, Excema, Allergies to Yeast, Pollons, dust mite, some Animals
Son 11, Asthma, Migraines, Allergy to penicillin
Son 7, Excema
.


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PostPosted: Tue Feb 27, 2007 12:45 am 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
I used to have mild cold urticaria . . . but nothing requiring medical treatment. (I'd just get a hives as a kid if, say, I played out in the snow and got snow on my wrists.) I do know that it can be a serious condition. Does your son have a good allergist? What about a prescription for adrenaline?


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 Post subject: Cold Urticara
PostPosted: Tue Feb 27, 2007 4:42 am 
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Joined: Mon Feb 26, 2007 12:54 am
Posts: 3
Location: South Australia
Yes he has a Specialist and a good doctor here but I worry because there are not many people at all that have heard of this allergy. I have to take him to get reviewed this week to change medication. They have spoken of doing a desensitising program on him but we have never known anybody who has been through these injections before and it is a little scary for children to imagine long term injections. I have printed out information from the web to keep in my bag, car, his bag etc so that we always have this for future attacks. It was quite scary having four nurses on at the emergency room yesterday and not one of them had ever heard of it.

_________________
Son 12, Cold Urticaria, Asthma, Hayfever, Excema, Allergies to Yeast, Pollons, dust mite, some Animals
Son 11, Asthma, Migraines, Allergy to penicillin
Son 7, Excema
.


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PostPosted: Tue Feb 27, 2007 10:31 am 
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Joined: Sat Apr 16, 2005 12:09 am
Posts: 1054
Here's a couple of other discussions on the topic:

http://www.allergicliving.com/forum/vie ... =urticaria

http://www.allergicliving.com/forum/vie ... t=uticaria


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PostPosted: Tue Feb 27, 2007 10:56 am 
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Joined: Tue Mar 22, 2005 6:53 pm
Posts: 1454
Location: Canada
That would be scary. Good luck with all this--I didn't realize that you could be desensitized for cold urticaria. I have read that sometimes chronic urticaria comes and goes . . . hopefully your son won't have this for life.


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 Post subject: Cold Urticaria
PostPosted: Tue Feb 27, 2007 5:14 pm 
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Joined: Mon Feb 26, 2007 12:54 am
Posts: 3
Location: South Australia
The specialist told us the program could be useful for some of his problems may not be for others or at all. There is no guarantee that it will work that is why I havent put him through it as yet.

Thankyou for your kind words I really hope he doesnt have it forever either. Fingers Crossed!!

_________________
Son 12, Cold Urticaria, Asthma, Hayfever, Excema, Allergies to Yeast, Pollons, dust mite, some Animals
Son 11, Asthma, Migraines, Allergy to penicillin
Son 7, Excema
.


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PostPosted: Tue Feb 27, 2007 10:51 pm 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
Both my daughters have cold urticaria. I was advised by my allergist and dermatologist to give an antihistamine (like reactine or arius) about 3 hours prior to swimming or boating (incase they fall in). We have not had any problems with this approach. Were you ever advised to give your son an antihistamine prior to the swimming? Or had he taken one prior and still had a reaction?

_________________
DD age 9 1/2 -peanuts, nuts,
DD age 7 1/2 - milk, eggs, chicken, peanuts, treenuts, cats, dogs,
DS age 2 1/2
Husband- asthma, eggs, treenuts, fish, shellfish environmental
Self - penicillan, eurithromiacin, mild laytex allergy.


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PostPosted: Tue Feb 27, 2007 10:58 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
I had composed a long email last night but then I accidentally left the reply window and lost it all... so I'm trying again!

I haven't heard of too many people with cold-induced urticaria but I do know that it exists.

When I first read your post, I wondered if it wasn't maybe exercise-induced anaphylaxis, with cold as the trigger, but it appears that there is something called "cold-induced anaphylaxis" as well. (Not fun...)

It does sound like anaphylaxis with the symptoms that your son had (see http://www.allergysafecommunities.ca/pa ... atsubid=15 for the Signs & Symptoms of anaphylaxis).

Have the doctors mentioned that they think this is what happened? Do they think he should carry an EpiPen or Twinject?

I did a little googling and found a few articles about cold-induced anaphylaxis (with and without exercise as a contributing factor).

1. Short article with general info:

http://wildernessmedicinenewsletter.wor ... urticaria/

2. A Case of Cold Urticaria with Exercise- and Cold-Induced Anaphylaxis (medical journal report):

http://www.koreamed.org/SearchBasic.php ... +%5BDPY%5D -

3. Question about whether there are ways to prevent severe cold induced anaphylaxis (a sort of ask the allergist Q&A - see the second question down):

http://www.aaaai.org/AADMC/ate/category ... &keywords=

4. Abstract about the successful treatment in a 12-year old child with cold-induced urticaria in a medical journal (but I'm not clear on what the actual treatment is - I guess you'd have to pay to see it or find the journal and read about it):

http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

5. Case Report: A case of cold-dependent exercise-induced anaphylaxis

http://www.blackwell-synergy.com/doi/ab ... alCode=bjd

So there is definitely some literature on it...!

Keep us posted on how things go... I'm glad you have some good doctors helping you.

K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma


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PostPosted: Thu Apr 12, 2007 1:05 am 
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Joined: Wed Apr 11, 2007 11:59 pm
Posts: 1
I found your question while looking for new info on this subject. My son is 13 and has had this for about 6 years. At first it was quite puzzling and scary until our pediatrician diagnosed CIU. It is quite frightening to be on a beach and watching your child about to pass out and possibly be having an anaphalatic reaction because he got too cold with no medical facilities close by.

Be aware that, if your son is like mine, in similiar situations, the reaction to cold may not always be the same, mild one time and severe the next, so always be prepared for the most severe.

FIrst thing to know is you must always be careful about his exposure to cold. Most people think this is most problematic during the cold season but actually it is during the summer because of swimming. We never go to the pool or ocean until I am certain the water is WARM. He must always sit on the side of the pool for a good 10 minutes before getting in, if his legs begin to turn red or itch, he doesn't get in. Swimming can be very dangerous because it can lead to a systemic reaction, it sounds like this was happening to your son, mine has had the same reaction. Compare it to a bee sting. Your body reacts by sending histamines to the affected area, blood is also "shunted" to the area to help defend the body. When a person with CIU gets in water that is too cold, the body reacts the same way, but to every inch of skin affected, this causes the blood pressure to drop, thus the nausea, vision problem and headache, at this point they are dangerous close to "shock" because blood is being "shunted" from the vascular system and major organs to the skin to fight the reaction.

The cause of CIU is usually unknown and treatment or prevention suggestions by most physicians is varied. What has worked for us is to limited exposure time in the winter and always layer lots of clothes, wear gloves, etc. If I anticipate he may get cold during an activity, we will premedicate with an antihistamine such as benadryl, claritin, etc.; these don't make the event not occur, but I think it does help with the degree of reaction and always have an epi-pen.

I try hard not to limit his outside activites and sports and over the years, he has learned to read how his body is reacting and knows his limitations, and I have to watch very closely for clues we moms know when our children don't feel well. We always carry blankets in the car, it scares me to think what would happen to him if we became stranded during the winter while traveling. We also always have benadryl and the epi-pen, he keeps these items with him at school also. Make sure you have an epi-pen available and that teachers (and your son for that matter) are trained in how to use it.

Summer is the scariest time for us, as is the case, I think, for most people with this condition. I have read in several places that lots of people with this condition avoid swimming completely. We love the ocean and the pool but he NEVER just "jumps in", always a little at a time, legs first, then half the body in the shallow water, then after a few minutes he can go under in the shallow water. Only after I am absolutely certain that the water is warm enough (usually at least 30 minutes of no rash, hives or itching) is he allowed to go to deeper water. He doesn't like this arrangement very much but the risk of passing out and drowing is just to great with this condition. He NEVER goes swimming unless I or my husband is with him. Sadly to say, because this is such a rare thing, most people have never heard of it and I think they blow off the seriousness of it (unless they have witnessed an episode similar to your sons), so I don't really trust other people to monitor him like I do. Although, the nurses at his schools, after I educated them on the condition(they have never heard of it either), have been very helpful in passing on the info to his teachers about what to watch for.

I don't have much to offer you as far as preventative medications. I have not put him through a barrage of testing and trying meds because much of the literature I read doesn't really support that, there is not a "cure" or a medication out there that works for all people with CIU the same way.

Oh, and be sure to be supportive to him, at this age (as I am sure you know), they are usually very self conscious about anything that makes them "different" from their peers. My son has a great group of friends who know about CIU and are sensitive to it. Around people who don't know about it, we try to not make a big deal of it if he starts to have a problem, we just quietly go to the car to warm up or leave if he is at an event and gets too cold.

Sorry for such a lengthy reply, but know that you are not alone. Stock up on antihistamines, get an epi-pen (and an extra for school), educate your son on what to look for as the beginning symptoms, educate all adults he would be with on the seriousness of the condition and what to look for before it becomes as it did during the swimming lessons. DO NOT let him get in a pool that is cold/cool. Keep blankets handy. Have a plan if you will be involved in an outdoor activity where warmth wouldn't be readily available. And most of all, pray that he does "grow out of it" as I am told often happens. Best of luck and health to you.


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PostPosted: Thu Apr 12, 2007 3:57 pm 
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Joined: Tue Nov 29, 2005 4:04 pm
Posts: 2044
Location: Gatineau, Quebec
Toby - thank you so much for such a great reply. I wasn't the original poster but I sure learned a lot!

K.

_________________
Karen, proud Mom of
- DS1 (12 yrs): allergic to cashews, pistachios, Brazil nuts, potatoes, some legumes, some fish, pumpkin seeds; OAS
- DS2 (1o yrs): ana. to dairy, eggs, peanuts; asthma


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