Wednesday, March 12, 2008

FYI

We are back in the hospital. We came in Sunday night after a couple long days of multiple seizures. Feels like we've been here forever now and while I welcome the break from the constant vigilance at home, this is getting really old. My assignment to myself when we are settled at home is to find doctors who practice a more holistic approach to epilepsy. We've been plying this child with more and more medications but no one here seems concerned with "why". Why these different kinds of seizures? Why so sudden? Why a month without any and now this?
I can't help but think there is a major trigger lurking in our house. Then I feel silly and alarmist and make myself chill. I'm sure that someone, somewhere is researching epilepsy (you'd be amazed what they don't know about such a common condition) It seems to me that the best research could be done right here with the patients, looking for common triggers and related disorders. Is congenital vertebral malformation or even food allergies really completely unrelated??

On a somewhat different topic, the on-call neurologist this week is my sister's neurologist. He is a bit of a star in his field, listed as a top doctor in Cincinnati and adored by the families he treats. During rounds, he asked if he could tell the team about Erin and proceeded to tell them she was 31...with Rett's. (pause for dramatic effect) One of the resident neurologists said she had done a double-take when reading our chart. He went on to praise the level of care my mother provides. He counts the care Erin has received at home as the main reason she is even alive but even he does not seem to look beyond which medication might work for Kenai. Odd.
The greater point of that being, my mom is pretty awesome.

3 comments:

Rhea said...

I'm so sorry about your daughter's seizures. Those are so scary. Research as much as you can and go with your gut. Mother's instinct is vital, I think.

Christie said...

I don't even know what to say. Just hang in there. We love you and wish we could be up there. Big hugs to everyone.

Katrien Johnson-Zoons said...

Good luck with everything. Hope they figure out what causes Kenia's seizures.
I used to have epilepsy myself. I think I had three episodes, up until I was 6 years old. I remember one, vaguely, because it happened during my first communion, when I was cutting the cake. I was on medication until I was 12 years-old, and went in for a brain-scan,once a year. Attaching all those little wires to my head always seemed to last forever.
They told my mom I would grow out of it,which I did.

Anyways, we're keeping our fingers crossed for her. She's a strong little girl so I'm sure she'll be just fine.