Monday, September 17, 2012

The one in which I want to kill the doctor

After L's first seizure, I waited.  It's hard to match the anguish of a mother powerless to protect her child from a looming danger.  And even though the doctor said that first seizure was a fluke, I knew we were dealing with something real.  I felt dismissed and disrespected and wanted to dig my nails into the door casing and refuse to leave until she promised to help him, but I latched on to one thing she had told me: "Two seizures without known triggers signaled epilepsy."  So I waited for him to have another seizure.  It wasn't that I wanted him to have epilepsy - I just wanted some answers, and I knew we wouldn't get any until he had another one.

L's second seizure was in July of 2011.  He was just over a year old and we were visiting the States during my school break.  After a long day of sightseeing at Pike Place market, we stopped at the Gap on our way back to the hotel.  Typical, scampy L kept trying to crawl out under the stall door while I was changing.  Over and over, I'd let him get just inches from freedom, then pull him back inside.  He was one part amused, one part irritated, but kept it together until I accidentally stepped on his finger.  After a long, silent cry like I had seen that day in the car, he fell into another seizure.

The main difference between this seizure and his first was that he made some eerie moaning sounds during this one and afterward, when he came to, his cry was pitiful and heartrending.   I don't remember that agonizing cry after his first seizure, but it has happened every time since, so I probably just missed it that day in the relief of seeing him "come back to life."   The moaning remains a mystery to me, as it happens during some seizures, but not others, without any rhyme or reason.

We were already on our way back to Bangkok, and we made an appointment almost as soon as we arrived.  I felt almost triumphant.  He'd had his second seizure; now she owed me some answers.  Instead, it was more of the same.  She didn't think it was epilepsy, since both "seizures" seemed to be triggered by pain and frustration.  She mentioned Breath Holding Spells and told me that in a nutshell a) he was spoiled and b) we shouldn't let him cry so much.

Furious, but still hoping to come away with something useful, I asked if there was any medication that could help him.  She paused and answered wryly, "There's no medication to make children stop crying."

There are a lot of things I could say about this woman, but in the end, I'm grateful to her as one piece of the puzzle.  Her mention of Breath Holding Spells is what ultimately led me to discover Reflex Anoxic Seizures (thank you, Google!)  And once I was fairly certain it was what we were dealing with, I made an appointment at another hospital, specifically requesting a doctor that was known for listening.   We got our diagnosis within a few months, and the rest is history.

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