Good News from the Edge

Still life with Onfi and the Lone Ranger

Sophie and I both have colds!

This is the reason why Sophie struggled so for a few days, and now that it's actually settled in, she's much better. True, the Diastat is still doing its magic, keeping her nerve endings sluggish, but her pattern is a ferocious bout of seizures before symptoms. With a full-blown virus, including fever, she generally has no seizures at all. Even high fevers (which she hasn't had in many years) make her seizures better. Smoke that, you Seizure Afficionados! I know you've heard it before, but some kids with epilepsy or autism or both have improved seizures or even behaviors when they're feverish. That's been Sophie's pattern since she was an infant. In the days building up to a virus, she will have concentrated bouts of seizures and then none at all or far milder ones for the remainder of the illness. Are your eyes glazed over? Mine are. In the same way that some women act surprised when their period comes or even exasperated that they, once again, have no products to stem it, even though such occurrences happen regularly each month for decades -- well -- I forget in the dark hours of the night or early morning when Sophie is seizing unexpectedly that she might very well be coming down with a virus. To be fair to myself, it's not always a virus and countless bad days in her life are attributed to nothing, but you'd think I'd know the pattern after nearly twenty-one years. Sophie honestly hasn't been sick, sick in a very long time (which I imagine has something also to do with CBD as it has both anti-inflammatory and anti-microbial effects), so I must have gotten a little rusty.

Do I sound giddy? I am! Giddy with relief! And we're trying a new product this week -- a different strain of cannabis that I hope will improve her SIT U AH CEE ON even more. Stay tuned.

Love,
The Happiest Person With A Cold and Cough on Earth

Rainy Morning, Immunology and Other Rare Things

A rare sight in Los Angeles

We woke up to gentle rain this morning, and after the swirl and angst of getting-ready-for-school, the house is relatively quiet, save the humming of Sophie who has been sick all week with the flu. She is better today, up for the first time since I got home on Sunday. The strange thing is that Sophie doesn't have seizures when she has a fever. It's been a phenomenon since she was a tiny baby: high fever, no seizures. In case there's an immunologist reading, I have three questions:

1. Sophie began having seizures and was diagnosed with infantile spasms shortly after her initial vaccinations at two months of age. She had no fever, just the myoclonic jerks that soon morphed into other type seizures.
2. The only treatment that Sophie responded to when she had bouts of ESES (electrical status epilepticus in slow wave sleep) was infusions of intravenous immunoglobulin (IvIg).
3. When Sophie has a fever -- particularly over 101 degrees, she stops seizing.

Well, those are actually three observations -- not questions -- and my question is: Are these three observations related?

Anyone?

Contrariness

The Invalid -- Carl Larsson (1853-1919)

Sophie began shivering uncontrollably last night at dinner, her fingertips slightly blue. She had been sick earlier in the week but hadn't run a fever in two days, a residual congestion in her chest the only sign that she had been sick. I felt a rising panic inside as I bundled her in blankets and draped myself around her, wondering if the Vimpat was causing these strange symptoms and because no one in our house gets sick enough to warrant owning a thermometer, (how dumb is that?) I had to tell Henry to run to the neighbor's house and borrow one. When I pulled it out from under Sophie's arm and read one hundred and two point seven which meant one hundred and three point seven, I blinked and shook it. It was, literally, the highest temperature I'd seen for Sophie in at least a decade. I gave her Motrin and debated internally whether or not to call the pediatrician. I knew, though, that the pediatrician would just say it was a virus, to watch her fever, push fluids and if it didn't come down she would need to be seen, perhaps, for a secondary bacterial infection.

I didn't call the doctor and instead waited in that agitated and forced calm way that I remember from my children's infancy. Despite the fact that I've witnessed tens of thousands of enormous seizures and true crisis, fever is still something that brings out the irrational in me and it's all I can do to stifle thoughts of meningitis or viruses that attack the heart and kill you in a flash, etc. etc.

Sophie's fever went down and she woke up this morning without one.

And why the title "contrariness?" I've never mentioned it here, but Sophie has the peculiar characteristic of being free from seizures when she is feverish.