Living with Cold Urticaria

Posted 12-26-2012 at 09:43 AM by whitneywalters

You may remember that I wrote a blog over the summer about my daughter being allergic to the cold. Since being diagnosed she has broken out four times. The first time was on her third birthday, it was a hot day in July so we went to a swimming pool and then got drive through after for supper. She was still in her bathing suit and was holding her cup in her lap. She held it there for about fifteen minuets on the way back to her grandparents house and by the time we got there she had a huge spot of hives where it touched her bare skin.

The second time was at an event called Living Windows downtown. Living Windows is a special event in our town where all the businesses have living displays of Christmas  scenes in their windows. We took the kids, it was actually a really nice evening so we thought Kairi would do alright but we noticed after about an hour that her hands were really red and she had welts on her knuckles.

The third time was out on my parents farm. She was out helping my dad feed the chickens, the weather was a bit chilly but not to bad so he had her in a light coat and a hat. By the time they were done she had hives on her cheeks, hands and chest.

The fourth time was recently. It was pretty nice outside for being December in Iowa. We took advantage of the nice weather and went on a walk. The wind was a bit chilly so I had them dressed in hats and coats. We walked up town and when we got there, Kairi’s whole face was covered in hives. It was the worst reaction she has ever had. Her hands were the color of a tomato and they also had welts all over them. The wind blowing right on her had to have made the reaction that much worse. I felt terrible. It only took about ten minuets for them to fade away but I was still upset. It was a really bad reaction and it seems like each one is getting worse and worse. So we are not taking any chances with her.

Snow is falling now, which means Kairi really can not be spending time outside. It pains me to make her miss out on snow fun but I am scared she will have a really bad reaction and end up in the hospital. The longest she will get to be out is maybe ten minutes and that is only if I can get her to wear a face mask. I have a feeling that won’t go over very well since she doesn’t like hats. We are keeping several blankets in the car just in case we were ever to break down and I will be carrying benadryl whereever I go.


Filed Under: Family Health, Mommy Talk


14 Responses to “Living with Cold Urticaria”

  1. jes on December 26th, 2012 11:21 pm

    My YDD was diagnosed with cold uticaria! I have never met or spoke with anyone else that had a child with it! It was a shocker for us because we lived in FL when she had her first episode. We went to the peds several times before she was diagnosed.

  2. blossomgoat on December 29th, 2012 9:29 pm

    Our oldest has it. Her cheeks and hands turn into almost one large hive after a bit and the swelling doesn’t go down for hours. Living in WI, we are constantly battling it!

  3. neonalee on December 30th, 2012 11:23 am

    I’ve recently learned about uticaria (it has different forms I think?) and that some people have linked it to celiac’s disease. From what I’ve read gluten free or paleo diets work really well.

  4. mibarra on December 30th, 2012 9:05 pm

    I can’t imagine living with something that would so drastically change your lifestyle, and that I’m sure is very poorly understood by others. :( I remember seeing the movie ‘The Others’ where the children are allergic to light. Most people I know think that’s a made up condition, but it really happens…

  5. Lammy on December 31st, 2012 6:21 am

    My family has Familial Cold AutoImmune Syndrome and they were involved in the only study done to find a treatment for it. The study ended only a few years ago and they have a drug that works to keep it under control ( it’s a shot and I’m pretty sure you have to be 18 to receive it). My grandmother, my mother, my only maternal aunt, and all 3 of my brothers ( age ranging from 26 to 14) have this. My family has it so bad that not only do they get hives and fevers their joints swell up so bad they have temporary paralysis. The shot works well to keep it under control but once again, you have to be 18 to receive it I think so my baby brother is out of luck. It’s actually caused by a gene mutation and for some reason while my 3 brothers have it, my two sisters and I do not.I wish I had better news for you, but my family and I have been living with this for so long, and most people find it hard to believe that they are allergic to the cold, but it is genetic and nothing my family could ever predict. I hope your little one’s reaction gets nothing close to what my families are and that she only has a mild case of it.But I just wanted you to know that I believe you 100% and that you and your little one are not alone.Hugs mama!

  6. Lammy on December 31st, 2012 7:12 am

    I called my mom making sure I had the name of the condition right but it’s actually called familial cold autoinflammatory syndrome and it’s a part of the CAPS family.

  7. moonlightblonde on December 31st, 2012 3:58 pm

    I can’t imagine. I think my bil has this – if he is cold his hands/face turn bright red and stay that way for about an hour after coming back inside & they swell though I don’t think he gets hives.

  8. princessgirl409 on December 31st, 2012 7:18 pm

    my youngest dd has this. Last winter was probably worse than this winter has been so far, but she had a very bad reaction this summer at the beach. It was a cooler(compared to the 95 degree normal days) windy day and they just played in the water up to their knees right at the sand. Her legs broke out so badly and turned a scary shade of purple.
    We have learned to take special precautions when we are planning to go out, but it is still frustrating sometimes!

  9. whitneywalters on December 31st, 2012 8:52 pm

    It is very hard to deal with. I have been finding things we can do inside together. The older two kids are not thrilled that we are spending less time outside but I can not take Kairi out and by the time Chris is home from work, it is dark.
    Kairi did stick her hand in the snow without a glove before I could stop her. She pulled her hand out and said OW OW OW. Her hand got red but she did not get hives.

  10. GMDkaren on January 1st, 2013 7:43 am

    I am all-too familiar with it. It is a histamine respose so you have to figure out what else she is reacting to. I know it is genetic but what she eats will affect how much she responds. If keep her immune system “calm” by keeping her diet clean it really does help.

    First thing is to eliminate all wheat. Then go from there and see what else is bothering her immune system. It could be salicilates (tomatoes, grapes etc.) An anit-migraine diet is the same so read up on that. The iphone app MySymptoms is a great help to keep track of every bite she eats. Or just write it down. A pattern will show up over time. It takes effort but it is worth it. A clean diet of no processed foods is a must. No drive-through ever again. Really. You can do it.

  11. Cassandra Skelton on January 1st, 2013 2:24 pm

    I have the same thing! I have never been diagnosed with it by a doctor. When I told my old doctor about it she seemed surprised and had never heard of such a thing. By putting the evidence together I figured it out on my own. No one else in my family has this. Often when I tell people that I’m allergic to the cold they laugh as if I’m telling a joke because I live in Minnesota. Even at my worst reaction I was never in any serious danger. It’s doesn’t effect my breathing or anything serious.
    When I want to go swimming or out in the cold for a long time I just take an Alavert before I go. It lasts all day. I’m sure that’s made for adults but if you give your little one Kids Benedryl before going out it should do the trick! I hope this helps! I hate to hear a 3 year old can’t go out in the snow! My 3 year old loves the snow so much!

  12. Cassandra Skelton on January 1st, 2013 2:27 pm

    My allergy also developed when I was 20! Forogt to mention that.

  13. reesie on January 4th, 2013 5:33 am

    Here is a bit of good news:) I started getting hives with exposure to the cold at about 12 yrs of age. This continued until my 20’s and then went away. Im 50 and have never had it return. I would however take the child to a peds allergist to discuss the problem and get an epi pen just in case.

  14. Dina on December 5th, 2013 1:56 am

    I started having symptoms when I was 12 years old after I went swimming. I am 28 years old now and still have it. I have daily reactions all the time. I have had about 4-5 really bad reactions that consist of passing out, swelling, hives, low blood pressure, and problems breathing. I have never been diagnosed by a doctor. But then again I didn’t know what it was until about a year ago. When I tell people about my condition they don’t believe me and think I’m joking and I have to tell this long story about everything I have been through with this condition and they are can’t believe that it really is true.

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