Sunday, March 25, 2012

Update Part V from the World's Worst Blogger

OK, so here we are, almost caught up to real time, March 25, 2012.

This has been a freakishly warm last six months, in the big picture where I live, in greater metro Washington, DC. We had temperatures in the 80s in February. The plants here are going crazy. The cherry blossoms are basically over now and oak pollen is now tinting our lives a sickening shade of chartreuse. It rained yesterday and the storm drain at the foot our drive was full of charteuse scum.

First, the update on my little girl, who just turned nine. Since starting helminthic therapy at the end of June, she has gained seven pounds. She has grown four inches. Food is still a struggle, but thank God, the days of nothing but soy pancakes are over. She has gotten back a few foods -- rice, tomatoes, and potatoes. We have discovered she tolerates lamb very well.

As or even more significant have been the psychological changes in her. She took Singulair for a year back in first grade. It was a disaster for her. It made her have serious separation anxiety for the first time in her life. She didn't want to go school. She had panic attacks. She stopped taking it in June of 2010. Unfortunately, even after discontinuing it she did not bounce back. All of second grade was miserable for her. We had to walk her to the door of second grade every day. She made no friends. She was on the edge of having a panic attack every day. She had rampaging anxiety and nothing made it better.

Then she got hookworm in June of last year. Her anxiety vaporized completely, possibly for the first time in her entire life. She completely changed. One weird symptom of her illness and anxiety was that she couldn't stand to be exposed to anything that was frightening or involved suspense at all. She didn't want to listen to Mr. Rogers reading Goldilocks and the Three Bears. That's what non-stop anticipatory anxiety because your adrenal glands are cranked up to an 11 all the time does to you. That's what being in pain, twenty-four hours a day does. You can't stand even hearing a little kid story about something bad being read by America's uncle who entertains three year olds when your life is nothing but pain and more pain.

This winter, she read all seven Harry Potter books. She watched the movies on DVD. She announced to me very nonchalantly, "Scary stuff doesn't bother me." She makes jokes she never would have made before. She has a best friend now and they laugh about Harry Potter and Voldemort together. Voldemort!!! She can deal with Voldemort when last year she couldn't stand to listen to the evil queen on a tape of Disney's Snow White that her baby brother listened to and she would run into the other room to get away from it. She laughed at her brother's silly, irrational fears when his PANDAS was raging when it used to be him laughing at her for years.

She had huge amounts of anxiety over doing homework and practicing the violin. It's much better now. She's growing as a person in ways that we've been struggling with for years. These aspects of life do not show up on a biopsy, but they matter as much. I would say that hookworm has been worth it for her even if her eosinophilic esophagitis never gets any better, though I think it will.

She's just getting over chicken pox. She couldn't have the vaccine because it has porcine gelatin in it and she's extremely allergic to it. I was very worried about how it would affect her, given how extreme her illness is and how everything, historically, has made it worse. A cold could mean a three week absence from school. Well, she had two or three miserable days and now she's fine. Her immune system did great. She only missed four days of school and was dying to get back. She is sleeping better now than she ever has in her life. For a kid that didn't sleep for six and a half years, that is a huge accomplishment.

Now it's allergy season and she's doing OK. No sneezing so far, no red eyes, no increased EE episodes. We're still waiting to see what happens with the whole allergy season. I can say definitively that she is much better than she was last year, when I was promising her that I would do whatever was humanly possible to make her better.

She told me back in September that going to San Diego and getting hookworm was the best thing that ever happened to her.

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