Tuesday, March 6, 2012

Sinusitis... again

Melanie caught a cold from her brother, and that has once again turned into sinusitis. She started getting sick last Monday at Gma and Gpa Johnson's house, woke up next morning blotchy and sickie for her neurology appointment, then had a seizure in the car just as we were dropping off Grandma Corinne at her house. The Lord protected us from an uncomfortable/precarious situation, with the seizure starting in their driveway, rather than on the interstate on our way home at night with just Mommy and James in the car. This one was about 20 minutes total, plus another 40 minutes of post-ictal shivers, discomfort and quasi-sleep. Though I'm never glad to see her seize, I was thankful that this one followed the same pattern as all her other ones, but with much clearer boundaries between each phase.  All of Melanie's episodes are rather ambiguous, and though we are seasoned in this, Nick and I still find ourselves most of the time saying to each other, "Is it over? Is this just post-ictal? Look at her eyes..."  After last week, I think I will be more prepared to distinguish between non-convulsive seizure and post-ictal sleepiness in the future.
I don't like this new trend of Melanie's illnesses turning into sinusitis, but today the doctor gave me some tips for avoiding this in the future. She's been mostly miserable since Thursday at least. We're all tired of the goup and the squeals and screams.

It recently occured to me that Melanie's seizure trigger now is not actually a fever. She did not have a fever Monday night, but she did Friday night-- with no seizure. This is the usual pattern: seize first, then show symptoms and get fevers later without seizing. So the trigger must be an immune response, right as her body's coming down with something. I posted this idea in our parent support group and found other parents who witness the same pattern. There has been some study on inflammation triggering seizures, and apparently there is a doctor who is interested in researching this connection further. Some parents said they've been told that the sodium channels are involved in immune responses. (Mutations in the sodium channel genes: i.e. SCN1-A are the main cause of Dravet Syndrome.)

I'll post again later with a summary of our neurology follow-up last week.
Also, I know some of you may not feel the need to read all of these details, but I'm including them for the benefit of our long-distance family members who I'm sure are happy to have them. :-)

~Claire

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