In the Hospital Doing a Video EEG Session

Where are my recipes?!

Sorry for the lack of recent posts. I’m in the hospital right now, doing a video EEG seizure study to find out what the smallest dose of Topamax is that I can be on, so that when Adam and I get pregnant, I will have the smallest dose possible in my system.

See, it’s not so easy, wanting to have a baby and having multiple sclerosis and a seizure disorder.  There are all these extra things that you have to think about that your average person doesn’t have to take into consideration.

Seizure Disorder, Pregnancy, Medication, and Birth Defects

You might think to yourself, “Topamax causes birth defects! I saw that on a TV advertisement for a law firm that is doing a class action law suit! You shouldn’t be on that drug at all during pregnancy!” and you’d only be partially right.

See, your everyday average, non-seizure-having person has a 1% chance of having birth defects with a pregnancy.  With Topamax, it’s a 3-5% chance, and the higher your dosage, the closer you are to 5% – the lower your dosage, the closer to 3%.

Then there are seizures by themselves. They carry their own % chance of birth defects too.

Let’s say I went without seizure meds at all and just prayed to the good Lord that I didn’t have any seizures, and I got pregnant… and then mid-way through the pregnancy, I had a grand-mal seizure, and for 2-3 minutes, the fetus didn’t get oxygen.  That’s one hell of an opportunity for a developmental defect.

I know what you’re thinking. “2-3 minutes without oxygen while in the womb? Is it really that big a deal?”

YES, IT’S THAT BIG A DEAL.  Imagine holding a baby under water for 2-3 minutes. What happens? They drown, that’s what. The womb isn’t that much different. 2-3 minutes without oxygen in the womb could mean brain death.

So we’d rather have my seizure disorder under control on a minimal dose of Topamax with a low percentage possibility of birth defect than roll the dice and hope, for 9 months, with raging pregnancy hormones and multiple sclerosis, that I don’t have a seizure that negatively affects the fetus.

That’s why for the past day and a half, and for the next 2-3 days, I’m living it up at the University of Chicago Medical Center, and am facing my seizures head on, like a fearless Amazon warrior.  Okay… the truth is that I’m facing it more like a whiny, twitchy, little baby from time to time… but I am here, I’m getting the research done, and I am not backing out — and that’s what matters.

So far, so good…

Adam’s been by my side the whole time, and I think the worst of the whole situation has been that the nurses had a horrible time drawing blood from me and putting in IVs.  I’ve got tiny veins that like to hide.

Other than that, of the few seizure episodes I’ve had so far, not a one of them have shown up on EEG yet.  Fortunately, they are on video. I have no doubt that they would have shown positive evidence if we did a post-ictal spec.

Tonight, aside from keeping me off of all seizure medication, they’re sleep-depriving me. (As in, I woke up at 7 a.m., and I don’t get to go to sleep until 4 a.m.)  So far, I’ve only been off medication for a few hours, but the auras of headaches and nausea have already started coming and going, so I’m confident we’ll get some results from this study.  Even if the seizures don’t show on EEG, I know that my doctor will have some information to work with.

I honestly think the hardest thing I’ve had to deal with the whole time I’ve been here is the chemical ups and downs associated with coming off of Cymbalta and Abilify, since my last day on the stuff was this past Friday. It makes it harder to be calm and ignore the itchiness of the electrodes that are glued to my scalp and my inability to just move around wherever I want to whenever I want to. (Lemme tell ya, folks, I am not a fan of the football helmet of gauze – or of having to ask for help just to go to the bathroom.)

Eyes On The Prize

If this time in the hospital has been good for anything so far, though, it’s really solidified for me a couple of things.

(1) Adam and I really want to be parents – and want to be good ones at that. &

(2) I’m willing to face the most painful and frightening things I’ve ever experienced for my family. That’s how much Adam and the child(ren) I don’t have yet mean to me.  And that’s how much they should mean. Real love means having the strength to face your fears.


One thought on “In the Hospital Doing a Video EEG Session

  1. Pingback: And the results of Connor’s EEG are….Mom is clinically insane! | Mixed Up Mommy

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