Emergency Shutdown Mode.

In the miraculous absence of episodes, a new, much less seriuos phenomenon has arisen. We've coined it the Emergency Shutdown.

KayTar goes from being 100% fine to being somewhat panicked, exclaiming things like, "Give me ENERGY! I need energy NOW!" We immediately get her something to eat and or drink, and after ingesting something, she rapidly falls into a deeeeeep sleep and stays that way for several hours.

It tends to happen when we are out and about, when KayTar is walking a lot or otherwise exerting herself, though not always. This weekend, it just took a walk through the bookstore parking lot to bottom her out. This isn't just a hungry or tired thing, we see her in both those states pretty frequently. This is a near-miss episode, as close as Josh and I can figure. We think she's learned the impending feelings of doom that precede an episode and is able to fix it before it takes her out.

It is under control for now, we keep cans of Pediasure in the car at all times. We've had to pop them open for her on several panicked occasions, like once after a trip to the mall, once while out looking at Christmas lights after she had run around a parking lot with one of her buddies. This weekend at the bookstore we didn't have one on hand, so we took her to the cafe and got chips and a drink, then tube fed her some Pediasure once we were home and she was already fully zonked out. It has happened more often recently, we think she might be hitting a growth spurt.

Of course, we don't know exactly what causes it, but it seems to be another facet of the same problem that causes episodes. It reinforces the theory that all of this is metabolically triggered somehow. I have not been able to check her glucose when it happens, we are very quick to get her what she needs and the glucometer hasn't been handy since it tends to happen when we are out. Her neurologist suggested a referral to an endocrinologist for testing, so we might pursue that. Though it is well controlled now, as she grows it might be more difficult to handle without a clearer cause and plan of action in place. It is just one more small mystery in the glorious puzzle that is our darling KayTar.

A tale of two near misses.

Saturday morning, KayTar woke up with slightly puffy lips and was wheezing a bit.

Her lips were not nearly as swollen as they were for her previous reactions, but they were noticeably puffier than her usual little pout.

She said her lips felt funny and wanted some Chapstick, so I gave that to her, with a side of Benadryl to prevent the swelling from getting worse, and Albuterol for the wheezing.

I asked her if she had anything to eat at the YMCA the previous night and she said she had, even though they've been instructed not to feed the KayTar due to allergies. She said it was "pop chicken" and she spit it out because it was "so gross it made her THROW UP." (I still haven't been able to reach anyone who knows what she was given on Friday. I think it is unrelated because of the time that had passed, but I still want to know.)

The swelling did not progress any further and she fell asleep for a while. I watched her closely, but she was fine for the remainder of the day.

I don't know if it was an allergic reaction or not. I feel certain it wasn't a reaction to whatever she has reacted to previously, as reactions get worse in intensity, they do not lessen. I will mention it to her new allergist in a few weeks and let her decide what to do with the information.

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Yesterday afternoon, KayTar said that her head was hurting, so I gave her Tylenol.

Then she said her eyes were hurting, so I held my breath, hoping it wasn't an episode.

Then she said that her eyes were spinny and she couldn't make them stop, so I turned out the light, darkened the windows, got the emesis basin, put down towels and waterproof sheets under her, and laid down with her in the silent, dark room.

She said she felt better. Then she said she felt spinny. She gagged a bit. Then again, she said she felt better.

I suggested that we lay together and rest for a while, she muttered her agreement and fell fast asleep.

A couple of hours later she woke up and was totally fine. She was fine for the rest of the day.

It never turned into an episode, though it sure danced close to the edges.