Friday, March 27, 2015

Chronic Hives

James's First Atopic Condition

As I mentioned here, James's first atopic condition was not food allergies at all, but chronic idiopathic urticaria (CU), or chronic hives, the cause was unknown. He was three at the time, and after a round of prednisone, the hives were still not well controlled. I can still remember taking him to his swim lesson, warning the instructor that he was: 1) in a very bad mood from the prednisone and 2) he may get hives during the lesson and not to worry about it. You could watch them spread over his whole body throughout the lesson and I was told, by a teenaged swim instructor, that she "really didn't think this was something not to worry about." 

After six weeks of the hives being fairly uncontrolled, we were sent to an allergist, who told me there was really nothing he could do. James would likely outgrow it. He told me to give him Claritin two times a day, twice the amount recommended for his age. And was not happy when I made him write it on a prescription pad. I was fairly certain James would overdose and we would end up in the emergency department with only my, "But the allergist told us to," as an excuse. As it turned out, he was on this dosage for three years. The only ill effect (which we didn't realize until he was off the medicine) was bedwetting. Every 6 months we would slowly take him off the medicines, only to have the hives return. 

Even when he outgrew the chronic urticaria, he still was prone to hives for other reasons: sap on his hands (making tree climbing a bummer), wet grass (I am guessing the pollen would stick to his skin, but it is only a guess), and hot water. He seemed to be outgrowing this last cause, however, this past couple of weeks it hives have recurred and so has the detective work. We are currently hoping for a virus.

What I've learned about Hives

As any parent whose child is James's age will tell you, the internet has changed radically the amount of information available for those suffering from a chronic illness (or, I would imagine any illness). When James first suffered from CU, there was a yahoo group, but valid information was sparse and access to research practically non-existent.

To begin with, 20% of people will suffer from hives in their life, and there's a variety of causes. People tend to assume an allergy (like food) when they see hives, but this is often not the case. As I mentioned earlier, viruses can cause hives (and it is, in my house, a hoped for cause). Allergic hives generally (not always) appear quickly from their trigger and so can be clearly identified.

There are various causes for chronic hives (beyond idiopathic). These include:
  • Pressure/Scratching (dermographism)
  • Cold urticaria - caused by a low temperatures
  • Cholinergic urticaria - caused by a higher body temperature, from hot water, anxiety, exercise, even sweating
  • Solar urticaria - caused by exposure to the sun
  • And rarely, aquagenic urticaria, hives caused by water or any temperature. This is skin only. People who have this can consume water without any issue.
There are also more treatments. James is currently taking not only two adult Allegras but 2 Zantacs a day (Allegra is known as an H1 antihistamine and Zantac is known as an H2). He worked his way up until the hives were (mostly) controlled. He still has very minor breakthrough hives directly before he is to take his next dose. If someone is not controlled with these medicines, Zolair has begun to be used in some cases.

Link to Other Diseases

There has also been research linking CU to other autoimmune diseases. Thyroid disease is the most common autoimmune problem linked to CU, in some studies up to 40%. It's not something I worry too much for James, as he has no symptoms that are concerning. Somewhat more concerning is the link to celiac. James tests positive in his RAST to wheat and negative on his skin test. His current allergist feels his symptoms are more indicative of celiac than an allergy. However, gluten has to be in your diet for a celiac test. So, until he is cleared for a wheat challenge (we will re-visit the idea of a challenge in Oct after his 1 year blood test with Dr. Li), this will be an unanswerable question.

Emotional Toll

I have a true visceral response to hives. The way that James feels, and reacts, to any of his food allergens is how I feel about hives. It's not logical or reasonable. The hives can be controlled well with medications. James is not bothered by them, except if I make a fuss. And, he scratches his skin off. But, I remember. I remember the stares as the hives covered him and I did nothing. The judgement. The sitting with him in my lap with a phone in my hand trying to decide how bad things had to get before it became an 9-1-1 type emergency.

I'm an old pro at hives now. And all of it bothers me a lot less, except for the pit of my stomach that remembers. And does not want to go back.

No comments:

Post a Comment