Tuesday, March 6, 2012

Chronicled Hives

My experiences with hives vary from minor irritation to throat-tightening panic. That said, the infrequency of occurrences hasn't led to an exhaustive search to figure out the cause of my breakouts. They come, they go, I put them behind me.

The first time the German turned up hivey, we didn't make any more of if than a fluke occurrence. We medicated him until he was clear and didn't really give it much thought until he had a significant breakout five months later.

We were assembling a seesaw the twins had received as a birthday present when I noticed the red splotches. That weekend, at his sister's dance recital, we had to pump the German full of Benadryl just so he could tolerate his own skin. Beginning that May, we entered into a period in which our family phsycian prescribed multiple rounds of prednisone and allegra, which would help until the medication ran out and the hives returned full force. His condition would occasionally kick into overdrive, causing his skin to swell and making him almost unrecognizable.

A visit to a local allergist proved almost useless. If you've ever been to a doctor who could care less whether or not people continued breathing, let alone sustained a bearable quality of life, that was the kind of "expert" to whom we were recommended. The only good thing that came out of that visit was his referring us to Duke. Not that he had high hopes for us. When we asked which doctor we should request, he said "Just be happy with who you get," and then told us it could take months to get an appointment.

To shorten a long story, we ended up in the hands of a dedicated, inquisitive, experienced professional at Duke. She asked questions. She ran mulitple tests. She considered all the possible options. Then, when we felt she was on the cusp of resolving the German's hive issue, she transferred to research and referred us to someone else.

We headed next over to Duke Children's Hospital where we met with a doctor whose name I don't recall. We saw him only once, maybe twice, but he wanted to go in a completely different direction from the other Duke doctor we had been seeing. The change unnerved us. He also talked about running tests, such as a biopsy of one of the German's hives, that sounded painful and, to my uneducated ears, futile. I could understand a biopsy of a permanent item, like a mole or a wart or a birthmark, but what possible good could come from cutting a chunk out of a transient discoloration of the skin of a six-year-old boy?

During those first months we heard many scary words we were told might be associated with his condition. For some reason, some of the more frightening of them began with the letter L, like Lupus and Leukemia and Lymphoma. The only thing we weren't hearing was a name for the German's condition. Not knowing what to call it only heightened our fears.

There were many times when the hives kept the German from participating. Being around animals seemed to make his skin worse, as did spending time outside on hot days and working up a sweat playing with his siblings and friends.

He was hit hard by a flare-up during a trip to Disney World in 2008. Although we had kept him on his regime of prescription medications, all the activity was proving too much for him. The night of his sister's birthday dinner he desperately wanted to experience the fun of a flume ride in Epcot's World Showcase, but his skin crawled with red splotches and the itchiness drove him to tears. We took him to the Epcot infirmiry where they graciously provided a dose of Benadryl. It gave him relief only because it knocked him out.

That said, there were some not-so-subtle reminders along the way for us to keep our imaginations from running amok.

One day, at Duke Children's Hospital for yet another round of bloodwork and assessment, we passed a mother and young child, maybe 9 or 10 years old at most. The mother tried to provide a comforting embrace as her child wept uncontrollably. A woman with a clipboard and a handful of brochures was talking to them about the Make A Wish Foundation. It was one of those moments when you wish you hadn't intruded on someone else's suffering, even if they hadn't noticed you. It also was one of those moments when you tell yourself things could be much worse than they are. Our son had hives that itched. That child had been handed a death sentence. Note to self: Quit bitching.

Luckily, at the same time we saw Duke's Dr. Biopsy, we also were referred to an infectious disease specialist whose attitude moved and encouraged us. Not that she took us any closer to a resolution, but she was readily available to us via email and was genuinely concerned with helping us figure out what was going on.

Through pure good fortune, a volunteer at the boys' school who had been working with the German on his reading skills noticed the hives. She knew of another family that had a son with a similar condition. She approached My Lovely Wife and asked if it would be okay if she put our family in touch with that other family. It was an exciting breakthrough.

Not long thereafter we found ourselves at VCU, Virginia Commonwealth University, meeting with a pediatric immunologist widely considered to be one of the nation's leading authorities in her field. She and her team spent four hours with us, exhaustively questioning, poking, proding, observing, reviewing past bloodwork results, ordering new bloodwork, and looking over the slew of prescription medications we had been pumping daily into the German at the advice of the doctors who came before her.

It was the first time in over a year of medical appointments that we had a name to put to the condition: Chronic Hives. As the specialist explained, if you have hives for more than three weeks without a clear indication of a related allergen, then you call it chronic hives.

Turns out the German's mast cells, which create and distribute histamines throughout the body in response to an allergic reaction, were confused. They were pumping out histamines at breakneck speed even though no allergens were to be found. For lack of a better analogy, they were stuck in the "on" position and have remained so ever since.

The best thing to come of our visit to VCU was the elimination of prescription strength medications we feared could have deleterious effects if taken daily over long periods of time. They weren't even doing a very good job of keeping the hives at bay.

Each day since that first meeting at VCU, the German has taken only two Pepcids and one Zyrtec, and the results have been consistently clear skin and an elimination of the itching.

2 comments:

  1. I'm so glad your son was able to get the needed diagnosis. I've never had the hives, and chiggers only once, but I was mighty miserable with them, so I can't imagine how horrible hives are...

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  2. He's been a real trooper through it all. He never cried about getting his blood drawn and always had a positive attitude. When I grow up, I want to be just like him.

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