Tuesday, January 12, 2016

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.

The Happiest Person With A Cold and Cough on Earth


  1. Hooray! Uh---is that the right thing to say? Anyhow, I hope you both rest and feel better soon.

  2. Great news!

    (I need to get me some of that CBD.)

  3. I, too, am so glad that it's "only" a virus. I've heard that about the fever with autism too. Weird, eh?
    Drink lots of tea! (Green or otherwise.)

  4. Hooray. Bright answers in dark corners. Of course. Where else would they hide. So glad for some easing of the recent difficult days for you and Sophie, for everyone. xo

  5. I hope you both enjoy your colds!!


  6. I experience many fewer symptoms of my autoimmune issues when I have a cold, as well. Glad Sophie is doing better and you can breathe a (stuffy) sigh of relief.

  7. Normally under these circumstances I would say - get well soon - but perhaps it's more appropriate today to say - don't get well too soon?

  8. That's so good. I forget sometimes too. Katie and her periods!

    Feel better soon.

  9. I am glad the apparent reason for the upswing in seizures came to light. Feel better both of you soon.

  10. I never thought I'd see anyone exult at the arrival of a cold!

  11. Good luck with the new strain of cannabis! I do this all the time with patterns in my own life--forget everything until it's all in hindsight.

  12. My daughter too never has seizures when she's got a fever--it's been years now since she's had a fever! But that was not my point in writing. I want to tell you how much I love seeing into your home. The aesthetics of your home are beautiful to me. My husband would have argued that aesthetics reflect or are morality.

  13. I am so pleased that you are feeling better (mentally) about this. Sorry about the cold.

    Frankly, it really pisses me off when I only realize things like that after the fact. Lola tends to be an absolute psycho b*tch for 48 hours before she gets slammed with a virus, and it is only occasionally that I remember that as she is in the throes of it and don't react horribly. The other times, I'm just mean in response and then feel contrite later.

    Deep breaths. Hope the colds mean opportunities for rest for you both.



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