Monday, January 19, 2009

Here we go again.

This is so ridiculous, it still doesn’t seem real.

One year and one week after her first seizure, Lainie had another seizure Saturday afternoon, January 17. She was getting sick Friday, woke up Saturday morning with a 102.5 fever, which we got down with Motrin. She woke up from her nap around 2:30, and I gave her motrin right away, even though she didn’t feel that hot. At 3, I took her picture, because she didn’t look “right” to me. At 3:10ish, she asked to watch a movie, so I turned on Dora in the living room and started putting a roast in the oven.

Then I heard that horrible, horrendous sound of her gasping for air…more like squealing for air. I ran in there, and she was in the middle of a grand mal aka tonic-clonic seizure. Jay was cutting firewood down the road with Maggie, so I scooped up Lainie, ran her outside in hopes that the cold air would shock her into breathing, and yelled at Katie to get my phone, shoes, her coat, and my purse. After about 10 minutes, the grand mal part ended and we headed to the ER. It took another 15-20 minutes or so for her to come out of it enough to make eye contact, about the time we arrived in the hospital room. Her fever was only 98.9 under the arm, adjusted 99.9. She showed no sign of any infection in her ears, nose, throat, lungs, anything. Her lung x-ray is fine. Thank God, she did not have another seizure since, or should I say yet?

I followed up with her at a pediatrician in Manhattan, now her new pediatrician. Good news, we know what caused the fever. While her ears looked fine on Saturday, she has an ear infection now in one ear. But, good or bad, new Doc doesn’t believe these are febrile — said her fever is just too low. She’s sending Lainie on for a consult back at Children’s Mercy in KC with the neurologists at the seizure clinic. I asked if we could/should wait until the baby is born, since car rides are so hard on me right now and I wasn’t sure my Doc would approve. Her Doc said she didn’t want to wait, and wants to get her there within the week. And my Doc, whose youngest just experienced his first grand mal seizure two weeks ago, said go, but take it easy.

I’m angry. I hate to say it, and I hate to write it, but I’m mad at God. I don’t understand why, why in the world it had to happen JUST when I was letting my guard down. Just when I could sleep at night and not freak out every time her eyes rolled or she made a strange noise. I’m trying to remember all the reasons I should be thankful, that she didn’t fall off the couch, that this seizure ended, that I heard my Grandma’s voice telling me to get her outside so the cold would shock her to breath, that she hasn’t had another yet/since. But I guess I feel like my trust is broken.

And, I knew something was wrong on Saturday. I talked with Jay for a long time Saturday morning, telling him that I’m just worried that something else is going on inside her, something to make her face puffy, the white of her eyes just not right, her bowels still hyperactive, and her immune system shot. I was trying to treat her like a normal kid, rolling this off as just a normal virus. But I guess I don’t get to treat her that way, to think that way, at least not yet.

So that’s our weekend. How was yours?


Tara said...


I can't even think of anything helpful to say. A lot of people I know turn to diet to try to help with issues I would not have thought of as diet related. I don't know if that is an area to explore at all. I know you were really sick last year, and have those horrible migraines... could there be some weird relationship between your illness and hers? I dunno, that all seems lame, I am just sorry you are having to deal with this.

If you need a place to stay in KC or help with other kids or anything, give me a call. (((HUGS)))

Mandy Gramkow said...

oh....thinking and praying for you and Little Lainey!