Misunderstanding and Clarification

Last Friday we were in Chicago seeing Dr. Nangia, Micah's epileptologist. It was an uneventful driving trip, but with more traffic coming home than we have experienced recently (bad timing, I guess). As for our consultation, we didn't make any decisions, but heard about some possible future treatment options. We have seen a significant reduction of seizures on the keto diet, but he's still having 20+ drop seizures every day. We increased his ratio May 6 to the highest ratio that is permissible. We have not yet seen any reduction in seizure count, but we continue to hope for a change in the next few weeks.

There are a few treatment options that our doctor wants to try next, but both of the next two options have scary side effect possibilities. We have tried the "first line" treatments, which have not worked as we had hoped. We will continue with the diet, but will also try and get more complete control with medication or other treatments. So pretty much anywhere we go from here will have more risks. These are difficult and frightening decisions we are facing, weighing risks and benefits, relying on our doctor's knowledge and the statistics in addition to prayer and listening to our gut instincts.

There was a major misunderstanding with our doctor for part of the visit. We both heard her say that 20-30% of people who take felbamate, the next drug she recommends we try, DIE. WHAT!?! Who would take that risk? Why on earth was she recommending something so dangerous? The FDA approved something so dangerous?? David and I both asked questions trying to figure out if that is really what she meant. Several times. "Have you ever had a child on this medicine die?", "Are you sure that 20-30% of people on this drug die from side effects?", etc.

She kept insisting that there is a serious side effect, aplastic anemia, that causes these deaths. We said, of course, absolutely not! We don't care how many seizures he has, we're not going to take that kind of chance with our baby. When she finally left to go get something for us, we decided we had to ask yet again, if what we had heard was what she meant to say.

Now, you've probably guessed that it WAS NOT what she meant to say. Here's the real scoop. Statistically, 2 out of 10,000 people who take this medication, felbamate, develop this terrible side affect, aplastic anemia. And of those, 20-30% will die. It's not insignificant, but it is not anywhere near the risk we thought it was. She knew what she meant to say, and I think because of this she kind of blocked out what our questions were actually getting at. I should say that we really, really like this doctor, and this doesn't change that. It was just a disturbing 30 minutes until we got the misunderstanding straightened out.

And our notion of what risk there actually is is kind of skewed now. It almost feels like no risk at all at this point, even though we would have to sign a waiver giving permission for Micah to be on this medicine. The statistical risk of dying from this complication is about 1/1000th of 1%. As a parent you never want to have to make these kinds of decisions, putting your child at risk. We can't ignore the possibility, but what we're dealing with now with Micah's seizures is not easy, either.

In spite of the scare, though, we came away from this last appointment feeling hopeful. We are not nearly at the end of the line of treatment. Even if these two proposed drugs do not work, there are other options. We will keep trying to get control of these seizures so that Micah's life (and ours!) can be as normal as possible. We pray for the day when the helmet can be retired for good.