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I am writting regarding my daughter who is 17. On Easter...

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Guest
Guest

I am writting regarding my daughter who is 17. On Easter sunday, this year, after being outside, she started to turn red then purple in coloring and then the hives came,1000's of them all over her. I thought it was anaphalaxis. the doctor said give her benedryl, I did and they went away.then it happened 2 more times. she started carrying her epi-pen around like the holy-grail. after multiple test we found out that its not anaphalaxis, but even after it has happened 6 more times they keep giving her benedryl on top of zyrtec. shes either iching or sleeping. we are getting no answers because the specialist hesitates to diagnose her with cold Urticaria, because it is so rare. if you put ice on her she gets hives what more proof do they need. shes afraid and depressed and the school doesn't want her there cause they don't want the responsibility. I feel so helpless.this should be the happyest time in her life instead shes debating on not going to prom. but,now I can show her this website so she will know she is not alone!!!!!!!!! THANK YOU:cheers:

[i:221ccf024f]This message was automatically imported from the original Patient Experience[/i:221ccf024f]

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  • Guest
    Guest

    Posted

    I am so sorry to read about your daughter. I have had cold urticaria since my mid-teens and am now 67. This may sound very depressing to know I have had it so long, but I am writing this to hopefully give her some tips and encouragement. It is certainly very frightening when it first happens, but I have learnt to live with it and have had a very active and happy life up to now and have been healthy in every other way, and am now a grandmother with 6 grandchildren. I have found that keeping active and positive is helpful. I used to do a lot of horse riding in my younger years and this was good, as the warmth of the horse helps! I have always led an outdoor life and still like gardening and walking in the countryside. Luckily I do not like watersports!! Of course I have to wrap up really well when it is even slightly cold or damp (English weather is changeable), but have found that thermal underwear is very useful and of course does not show under jeans or teashirts. Keeping the central body warm seems to help the limbs as well, and warm socks are essential, as irritations on the feet are particularly awful. It is difficult for a young person who probably wants to be in fashion, but maybe medication could be useful for when she wants to wear more flimsy clothing - like going to the prom? I am lucky that my hives disappear as soon as I get warm and I have never taken medication, but it doesn't take much set them off again - just sitting here in a cool room typing, is making my legs start to tickle! It seems strange that your daughter's school are is so unhelpful. I cannot see she can be in any danger, unless she gets very, very cold for some reason, and as the for doctor being reluctant to diagnose it as cold urtcuria when you've done the icecube test - what more evidence is needed?!! Anyway, I would like to wish her all the very best of everything (and you of course because mother's worry!) We are all different, so I can't be sure what I have written will be of any help and hopefully she may not have it for very long - it seems an unexplained and puzzling condition at the moment, so let's hope a cure is found soon - and I do hope she goes to the prom.

    [i:c20ac1604f]This message was automatically imported from the original Patient Experience[/i:c20ac1604f]

  • Guest
    Guest

    Posted

    thanks for your suggestions( they help) and thank you for your support it means alot when you feel alone. I may not have the disease, but i feel like i'm suffering from it also. if i could take my daughter's suffering i would.

    [i:144d3e0c44]This message was automatically imported from the original Patient Experience[/i:144d3e0c44]

  • Guest
    Guest

    Posted

    First of all I would see a different doctor if he isn't willing to diagnose her! I was just diagnosed w/ chronic autoimmune urticaria after 22 years of suffering!!! (That's my whole life! :lol:

    [i:756bf20d31]This message was automatically imported from the original Patient Experience[/i:756bf20d31]

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