Help Please! My child has been suffering with chronic urticaria for MONTHS!

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We are si frustrated! We are the adoptive parents of an autistic child of ten years old. We have little to NO medical history to start with and now our son has been suffering from severe hives for MONTHS. Docs believed it was first his seizure meds, then anxiety meds, then sleep meds....until slowly he has been pulled off ALL meds and is STILL covered in severe hives EVERY MINUTE OF EVERY SINGLE DAY. There are times when there is not a single finger-tip size area on his body that is not swelled intensely with dramatic disfiguring hives. He is MISERABLE and no one can figure any of this out. 

We have done diet restriction, chemical elimination, monitor EVERYTHING he eats, drinks, comes in contact with.....STILL WE CANNOT FIGURE THIS OUT.

Hives usually begin on his hands or feet and become worse as the day progresses. 

A new twist to the complex situation is that meds prescribed to controll this reaction (all kinds of antihistamines) are now the very things that cause it to get WORSE. He has been on everything from steroids to zantac and every antihistamine they could think of.....and this just gets worse.

Has anyone.....ANYONE....come across anything like this? Advice welcome.....PLEASE!!!

Thank you so much!!!!

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  • Posted

    You are not alone! Although your sons case sounds more severe, my son is almost 5 and developed urticaria 3 months ago. Like you, we have restricted his diet dramatically to the point that he is miserable. He's itching constantly and is always making himself bleed. He has eczema too. 

    I posted on on here about it last week and got some useful tips. He has actually improved a bit this week. I've been using a steroid cream on his really sore patches and his baths have been really tepid. He is on citirizine and chlorphenamine. He's supposed to gave 5ml of both but I've given him double. I've also started giving him a multivitamin as I'm sure he's missing vital nutrition. He used to eat such a good variety of fruit and veg, cheese, eggs etc now he's having chicken sandwiches or plain pasta most days for lunch and dinner. He has apples and Rice Krispies and that's about it. I have started looking into low histamine recipes to cheer him up a bit.

    I bought some white cotton gloves and tubular things for his arms from allergy best buys, he's wearing them to bed tonight for the first time. He said his arms felt better immediately, they are tight so I think the pressure must ease the itching a bit.

    Im sure you have probably tried all this already but I thought I'd let you know what we're doing in case there is something you haven't tried. There is no history of urticaria like this in either side of our families, my husband had a reaction to smarties for a couple of hours as a child. Nothing like this. I don't think it's really a genetic thing. 

    Im sorry you're going through this too. It's awful, the worst part of parenting by far. 

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  • Posted

    Have you tried oatmeal baths?  You use about a cup of porridge oats and put it in a muslin bag, run the bath with the bag in it.  It is supposed to be very soothing.  You don't need to buy anything expensive, just basic porridge oats.  I have just been looking at various recipés but quite honestly, they are trying to make money out of you.

    Have you looked at what you wash your clothes with?  Don't add anything there either.  I couldn't use fabric softener for years.

    White vinegar is very good for softening clothes and leaves no smell.

    Perhaps you need to go at this problem from another angle.  How long have you had your son, does he remember his birth mother?  Is there any time that you notice he isn't itching?  If there is, then you will have to build on that 

    I knew a little boy some years ago, who had the most appalling eczema.  His parents brought it under control, after going to a Homeopath and he had to cut out a lot of foods, like tomatoes and beef.  I cannot remember the rest.  He was a different boy. 

    But, try the oatmeal baths.

    Good luck!

     

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  • Posted

    I have had this condition for 16 years. There are different kinds of Urticaria. The kind of Urticara with no known cause is called Ideopathic Urticria. I have Ideopathic Dermagraphism Urticaria. I'm sorry to say that Doctors or Dermatologists are not interested in explaining the fall details of this condition. They will only ask you to consider what the triggers are and to try this anti-histamine! 

    The science behind it however is quite straight forward and can help you understand what Urticaria is and why we have it.

    Through my own 16 years of suffering and plenty of scientific studying (im like a dog with a bone lol) These are the facts and how I find relief.

    1) We all have 'normal' cells and naughty 'mast cells' Mast cells multiply and form anywhere in the body. I urge you to Google mast cells for a better understanding of your sons condition. 

    2) STRESS...plays a MASSIVE part in chronic urticaria. Help your son find really good ways to relax. I find swimming wonderful, relaxing and soothing.

    3) For immediate relief, I would take Citirizine. I took 2 daily for 16 years. Now, i'm immune to it. I now take a stronger antihistamine but it's not for children.

    4) Good health comes from the Gut! Personnally, I have never found  my reactions trigger with diet, but, I do consume Lactose Free dairy products and keep carbs to a minimum.  I wouldn't recommend banning carbs from a growing child. I would however recommend you ask your doctor to refer your son to a dietician and feed him 'normally' unless you are absolutely certain he gets an immediate reaction from what you have given him. A child who wants certain foods but cant have them will be miserable, this brings on stress and STRESS is a MASSIVE trigger. However, trial and error on your part is important. Start a food diary and have a look at these two websites. I use them every now and then [links removed]

    4) Nettle Tea. OMG!!! This stuff is a godsend! I know children are fussy with what they drink, but trust me...after about 2-3 small cups a day (pop a small sugar in to improve taste) for a few days, symptons relax. It works like the flu jab if you like. Doctors give you a flu jab antibody to act as a flu antidote. Same thing here. As urticaria is pretty much the same as stinging nettle rash, drink stinging nettles!! Of course, the Tea doesn't sting! I also find keeping the used teabags and dabbing them on any raised sore hives.

    5) I personaly cannot wear tight clothing! Hives raise and sting like hell! Loose clothing can rub and irritate the skin...a no win situation! 

    6) Pour calamine lotion in his bath. Great for soothing chicken pox and also great for soothing urticaria. 

    Regrettably, their is no curesad My advice above is based on my own 16years of suffering, my own trials and errors and studying the condition as thoroughly as possable. I still have it, but, it's under good control.

    You don't mention whether your son has any secondary conditions! For exp...I was 19 when diagnosed with Asthma, 20 diagnosed with Rhinositis, 23 diagnosed with Urticaria and 35 diagnosed with Crohns disease. These are all Auto Immune diseases. If I had known back then at least half of what I know now...I would of took better care of myself and paid attention to my highly strung stress head nature!!!! Oh Hindsight LOL! 

    Good Luck to you and your Son. Feel free to contact me 

      Hayley 

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  • Posted

    Hi there,

    I am a long time chronic idiopathic urticaria sufferer. The bouts last anything from 5 weeks to five years. My most recent two events were triggered by accidental exposure to Nettle stings. I have found that with a combination of RANITIDINE and CETIRIZINE I can control the weals, but I am a little worried about the long-time use of these drugs. I do wish I could find either a permenant or rapid short term solution.

     

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