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Closing A Door? Opening A Window?

Posted Jan 11 2013 6:00pm
Ever since Tommy first started having seizures, I've been pretty open with most of it. I've spoken about his tests, our fears, and all that we've gone through. When people have emailed me, I've answered their questions. I've even shared who our doctor is when local people have reached out to me. One thing that I've held close to my chest is how we've treated him. And I suppose that's cowardly of me to not fully disclose everything, but I have and have always had my reasons. If people email me and ask (and they have), I share but I decided a long time ago that I didn't and wouldn't share on my blog (or really outside of my blog, either--this one has been held close to my chest) for a lot of reasons.

But then I decided that I need to share, as his journey--our journey--with epilepsy continues to unfold. I also need to explain why I chose not share because that's important, too. When we first left the hospital so, so many months (goodness, years?) ago with Tommy's initial diagnosis of epilepsy, we also left with a prescription for anti-seizure medication. But you might remember that we had serious issues with the on-call neurologist at our local hospital (oh, my heart at tiny 15 month-old Tommy in that blog post), so there was no way, no chance we were taking her advice and putting him on medication. I tore the prescription up and threw it away. The next morning we went to University of Chicago and the neurologist discussed several options with us, one of which was medication. Yes, she was aware of the ketogenic diet and several of her patients were on it, but Tommy didn't fit much of the criteria for it. Yes, chiropractic adjustments were certainly a good compliment, but probably not going to be a cure. Yes, she understood that I had reservations about putting my 15 month old who had never even been on antibiotics on anti-seizure medication, but she also stressed that he was a child who had three seizures in one week and we needed to be concerned. She was also willing to wait and see, so we left it at that. Then he continued to have seizures and seizure activity, so we had to be realistic. We had to make a choice and we chose to medicate our child.

Here's why I didn't share: when Tommy had his first seizure, the ambulance was just barely out of the driveway when Shane stepped outside with Luke. He went outside with Luke for two reasons. One, to calm Luke down. Two, because there was a crowd of neighbors outside wondering what happened. After explaining what happened, one neighbor said, "Oh, a seizure? Do you vaccinate?" Keep in mind that we just thought our child was going to die and already, someone was passing judgment on why she thought it happened, already giving an armchair diagnosis, when what she should've said was, "How scary, I hope everything is okay."--and honestly, I'm used to that kind of judgment on the internet, but at the end of my DRIVEWAY? To this day, it still bothers me, deeply (and for the record, judgy neighbor lady, vaccines have nothing to do with his epilepsy). Shane brushed it off, but I'm glad that he's the one who handled that comment, because I don't know how I would've reacted. And so, my heart has been too fragile to hear that you (the broad general sweeping blog reading world, hi) would or would not have chosen to medicate your child. Maybe you would. Maybe you wouldn't. I don't know if I would choose to put another child on seizure medication, because I would have to base it on that child. All I know is that this is what we chose to do with Tommy. Two years later, I am certain that we made the right choice. Seizure medicine DOES NOT work for all children. Or all adults. But it worked for Tommy. Tommy went from having several seizures a week to one a month. Then to one every three a month. Then to, by the grace of God, none in OVER A YEAR. There are truly no words that I can use to describe how this feels, this grace to have the kid who gets better.

Still, there's something unsettling in that he's been on seizure medication for longer than he's not been on it. Twice a day since he was 15 months old. It's part of our routine. It tastes like cherries, so he loves it, but it isn't easy to give your child a medication that on the side of the bottle says: "Call the doctor if you experience any unexplained sadness." Also not easy: uncontrolled seizures. Our neurologist has known from the moment that we started him on medication that our eventual goal was to wean him off of it. When we made that difficult decision the first thing I said was, "How long will he need to be on it?" When we made that year mark, we sat through his appointment with held breath, then she smiled at us and said, "We can talk about weaning him off now."

So, here we are. We could've done it in October, but our neurologist was nervous about doing it around the holidays in case we couldn't get ahold of her due to traveling. I was nervous about doing it while he was off schedule with sleep, so we all made the decision to wait, because what was a few more months in the grand scheme of things? This is what it comes down to... this is when we find out if our child has outgrown epilepsy or if he's just really compatible with the medication. When we saw her today, she said that she worries about pushing him into another seizure, but more than that, she doesn't like having a kid on medication when he possibly doesn't need to be. I don't know if this makes sense to anyone, because I've just outlined all the reasons why we medicated him and why I was fine with that, only to turn around and say that we're taking him off the medication. Because I have to know if he can be unmedicated and if he's outgrown it. If he has another seizure, we'll put him back on the medication and simply be thankful that it works so well for him.
It's scary knowing that we could be opening him up to another seizure, after so long without... but somehow, it's scarier not knowing.
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