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OT: Unexplained chronic hives

completely overwhelmed's picture

Anyone have any experience dealing with hives? SD has been having hives pretty much every day for the past 10 months now. The hives aren’t always in the same location, but generally on her torso and legs. They fade during the day and reemerge at night sometimes forming large patches. Nothing seems to help or explain why.

Her special ed teacher has been bugging DH about when he’s going to figure out a way to stop the hives – but SD has been to allergy specialist multiple times now and been told it’s something that can some times happen for no reason and will eventually go away (It's fairly common. They call it Chronic Idiopathic Urticaria). DH has told the teacher over and over there’s nothing else he can do but she won’t accept this as an answer since SD uses the hives as an excuse constantly in school.

Currently she’s on more then the recommended dose of Allegra (3 pills per day when you are only suppose to take 1) and also heart burn medication which apparently also helps hives (both prescribed by her allergy doctor). She has had several round of steroids that helped for about a week and then the hives were back in full force. If the hives are really bad at night, she takes Benadryl.

I get a lot of unsolicited advice about how I’m supposed to deal with this from people at her schools, other health care providers (her therapist mostly) and even random people who see the hives on her in public.

I get the reaction that I’m “one of those” stepmoms because I’m not doing X, Y or Z to solve the hives and they know DH is busy with work and doesn’t have time to take her to more doctors.

She’s on a lot of psychiatric medication and when she was hospitalized over Christmas for depression, they wigged out that the hives might be cause by a medication (we already knew it wasn’t) but they switched up all her meds and that caused her to be there even longer and of course it didn’t help.

She has Sensory Processing Disorder so being itchy and covered in hives drives her crazy. Literally her focus 90% of the time in on her hives.

Since she’s has the hives at home and when she was at two different hospitals, it can’t be something environmental, but everyone keeps telling me to check for mold or allergens but no one else in the house has any problems with allergies. She was away from the house for almost a month and still had the hives. I don't think that's the problem.

I’ve read hives can just be caused by autoimmune reactions or stress or just be random. But there’s also a lot about articles blaming artificial colors and preservatives or histamine intolerance and there are very restrictive low histamine diets that sounds like they are a lot of work and most of the time they don’t fix anything. People eliminate foods to the point where there is nothing “safe” for them to eat.

I posted on a hives blog about SD’s hives and pretty much was told I was a horrible, rotten stepmother for not immediately doing this diet and probably they think I’m a horrible mom for giving my BD processed foods too.

I don’t want to seem like a bad stepmom, but I don’t like to cook and I don’t buy into a lot of that health food nonsense.

I’m trying to stop thinking about what everyone else thinks and not caring if anyone thinks I’m a terrible stepmom.

But I don't like people thinking DH is a bad father. He’s taken her to doctors who can’t do anything and SD’s teacher treats him like he’s irresponsible and not doing anything.

Comments

Indigo's picture

Periodically I have either patches of hives and/or small "itchy" bumps.

Have done food allergy testing which came back with weird things like rice. Nothing major. I asked my homeopathic doctor about the hives and she tossed out the idea that I was having a reaction to histamine. Histamine Intolerance. Not testing as a food allergy or intolerance, but a reaction nonetheless to foods which were high in histamine.

Just tossing it out there.

completely overwhelmed's picture

There's a lot of discussion about histamine intolerance online, but SD's allergy doctor says there's no scientifically evidence of this.

What I see online is a lot of so-called experts promoting histamine intolerance diets, but many people with hives trying low histamine diets and still have hives.

It doesn't seem to have a very good success rate and it seems highly restrictive. I'm not sure how I would get SD to follow this type of diet. Pretty much 99% of the food she eats would need to change.

The comment sections of these blogs and forums have a lot of people who are down to eating one or two foods and still have hives.

If it is an autoimmune condition, then histamine intolerance isn't the cause and the diet won't help, but it's only trying the diet for 3-6 months will prove it's not histamine intolerance.

wicked_by_proxy's picture

You may wish to find a Functional Health Practitioner in your area. There are tests, fairly inexpensive, that can be run to better pinpoint the origin of the hives.

I am a practitioner and I have had many clients with hives. Every one of them had a different underlying cause. I try not to promote myself on any blogs but I mention this because I want to assure you that this problem can be relieved with a little investigation from an experienced practitioner...

You are right, there are lots of ways of addressing this issue, and I think Google lists each one, but until you get to the root problem, you probably won't have a permanent solution.

completely overwhelmed's picture

I'm a rather scientific person and I do work in a medical profession - but do you think if she's spend 3 weeks outside of our home two different hospital settings and still had hives that it's not something she's eating or environmental (mold, allergens)?

The hives got worse when she was in the hospital. Doesn't that suggest it's stress or autoimmune or something else than she's allergic to gluten or food dyes or something like that?

She's never had hives before, so something she's eaten all her life like gluten, eggs, dairy, etc wouldn't be the cause. It would have to be something new.

Not that I'm against homeopathic medicine, but my SD is developmentally disabled and it's a fight to get her to take medication and eat. Adding a bunch of vitamins and a restrictive diet is going to be incredibly challenging.

ChiefGrownup's picture

This is very stressful for you as well as for the whole family. I'm sorry.

I do get hives myself. After many years I finally determined they were from milk and milk products. Years later my brother remembered this and found his chronic eczema was also cured by cutting out dairy.

But dairy is in a ton of things and sometimes the hives pop up and it's only then you remember to check the ingredients on some obscure thing and find the culprit is there.

But, and this is a huge but, I still get hives from time to time, in fact, with some frequency, that I have no idea what caused them. So I completely believe your sd may have the unknown idiopathic kind.

So I don't have any suggestions for you, just sympathy. I guess the only other clue I can give you is that neither my brother nor I experienced this as kids. So perhaps your sd will grow out of them just as we grew into them. Also, my hives change over time, if they appear on my knuckles they are very itchy to the extreme it gets bloody from scratching. But I haven't had the itchy kind in a long time. And my brother never realized his eczema was just a mass of hives paving each other over. I say this to show that the hive process can be varied and fluid.

I wish you all the best with this. That extreme diet sounds like it is it's own problem in itself. Do not feel guilty about deciding it's not right for you situation.

BethAnne's picture

I was going to suggest this. I think a lot of skin complaints clear up with some exposure to uv rays. My mum also had a skin condition that was relieved by using a sunbed for short periods of time a couple of times a week (though your sd is probably too young for sunbeds but the sun is free as long as it is shining).

completely overwhelmed's picture

SD was tested for food allergies by the allergy specialist, but that didn't come up with anything. She had a mild allergic reaction to mold, but that's fairly common.

Hennypenny's picture

I'm allergic to yellow dye #5 and it causes me to break out in hives. And that stupid dye is in EVERYTHING (food and beauty products) so I always have to read the labels of things and carry Benadryl at all times. Additive intolerance is hard to pinpoint so I would definitely keeep a journal, but that's the key for any diagnosis for hives- you have to find the triggers so the doctors can know where to look for a cause, otherwise there are just too many options to narrow down from.

NoWireCoatHangarsEVER's picture

I belong to a zero carb group and they talk about histamine all the time caused by plants. Weird, huh? They eat meat only . I had hives a lot but they were from laundry soap. I have to use free and clear.

lintini's picture

I get hives from my pets, especially from dirty feet touching me or their mouths. Guinea pigs really make me break out. If I play with a dog and it gnaws on me I get hives too.

Exjuliemccoy's picture

Skids gave me hives and ulcerative colitis.

During a particularly difficult time with YSD, I developed hives for the first time. The dermatologist I saw was a doddering old fool, but my GP correctly diagnosed the cause - stress. And shortly after YSD moved out, the hives stopped.

Your SD has a lot of issues, and I'm sorry this has been added to the pile.

not2sureimsaneanymore's picture

Get a skin test specific to parasites--scabies, among other things, could cause things that look like hives.

Try your best not to do the steroids--rebound reactions make the issue WORSE after stopping than if she didn't take them to begin with.