Saturday, April 4, 2015

Hunting Those Elusive Triggers

This is part of a series of posts about Penny's eczema story.  To start at the beginning, go here.

By the fall of 2014, Penny's eczema was in a much better place.  Wet wrapping and keeping her skin covered had cleared the eczema from much of her body.  This huge progress further convinced me that Topical Steroid Addiction was not what we were dealing with.  And she was growing so fast!

Yet she still had some trouble spots that drove us crazy.

Showing off her new glasses. 
Note the red cheeks.
I couldn't keep her hands and face covered, and they were always flaring.   If her face was flared at home, it would clear when we went to the zoo or the park.  One minute her hands would be fine, the next she was tearing them to shreds.

With flares popping up so often, my plan for tapering down the topical steroids for these areas wasn't working at all.  It was better than when we had to apply them to her whole body, but my goal had been to get to twice a week maintenance applications.

I figured there had to be a reason so much of her skin was better when her hands and face were not.

I ripped all the carpet out of our house since the previous owner had a dog.  We bought a new couch. Bought her a real silk pillowcase.  A vaporizer for her bedroom.  A HEPA air purifier and vacuum.  Tiny gloves made from 100% cotton.  New panties with no elastic showing.  New panties with a different cut in case the first ones were rubbing.  (Her waist and panty line was another trouble spot.)

Replaced all clothing made from synthetics, including my own.

Wondered if the most recent hand flare was from touching her friend with a dog.  Or the Christmas tree.  Or the homemade (gluten free) play dough. Or the new Christmas gift that I let her play with without washing.

Was it the soy yogurt we tried instead of coconut?  The polyester gloves I let her wear outside when I couldn't find any cotton ones?  The new throw pillow?  The dress up in the dusty closet?
The relentless itch.

My mind was constantly racing with these questions.

Her care routine was so much work, and our clothes were all stained  and coated with lotion.  Everyday I had to evaluate which steroids to apply where.  I never knew when we would wake up and see a flare starting and have to spend the day in and out of baths and wet wraps. 

Even though I was so glad to have better tools to help her itching, I began to dread her coming so many times a day and asking for "a lotioning."

Her skin was so much better than the previous summer, but there were times when I was out alone for a cup of coffee or errands, and the thought would flit through my mind, "What if you just didn't go back?"

These thoughts scared me, and when the New Year started, we finally had health insurance and some money saved, and I was ready to get some specialists on board.  I thought about finally going to National Jewish.  After all, maybe with their expert advice we could devise a tapering plan that would work.  But when so much of her body was fine, it was hard for me take such a big step.  Even with insurance, it would have been thousands of dollars to meet our deductible and pay for travel.  We were in a place where financially that was possible, but I was also afraid we would come home with a care plan that looked pretty much like what we were already doing.

I decided to get allergy testing done locally first.  If it helped us pinpoint some more triggers, I reasoned, then maybe we could get over this final hurdle.

The allergist we found is wonderful and thorough and up on the latest allergy research.  She doesn't deny that there is often a connection between food allergies and eczema and trusts everything I tell her I've observed with Penny. 

Many kids with eczema have such sensitive skin that the skin test shows many positives to allergens they don't actually react to otherwise.  For Penny, the skin test was pretty accurate and verified the foods I had seen her react to before as well as helping us identify her environmental allergies.

It helped to know that I'm not a meanie to make her wear pants to play outside now, to stop going to houses with dogs, or to make her take a bath to wash the pollen off every night.  It gave me the push I needed to deep clean her room, throw out old stuffed animals, and stay on top of the dust.  And it gives us a baseline so that when we retest in the future, we will know if her reactions are changing as she grows older.

We also blood tested over 40 foods, and Penny tested positive to all of them.

I considered cutting these out one or a few at a time to see if any were causing flares, but I've been down that road before.  When she was an exclusively breastfed baby, for a while I only ate turkey, sweet potatoes, rice, pears, and sunflower seeds, only to find out months later that she's very allergic to sunflower.  This time, I could cut out all 40 foods we tested and find out years later that she was actually reacting to quinoa or turkey or cucumbers.

I kept a food journal for a while, but the only pattern I could see was that the flares were related to how many days since her last application of steroids. In the end, like our pediatrician had predicted, allergy testing did not help us find those elusive triggers I'd been hunting for so long.   These flares were starting to interfere with our sleep again, and this time Benadryl wasn't working. 

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