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.

Getting Away

Last weekend David and I had the privilege of a night away just the two of us. It has been a long time since that has happened and we needed it! Micah went to his grandparents' house for the night and we headed to Holland, Michigan to stay at our favorite hotel, CityFlats. It was nice (as any parent knows) to be responsible for only ourselves again for a brief time. Micah had a great time with Grandma Marg and Grandpa Jim. The weather was windy, but not rainy or too cold, so we were able to do some walking. Sunday morning we visited Mars Hill Bible Church in Grand Rapids, Michigan, where Rob Bell and now Shane Hipps are pastors. Quite the interesting place--we enjoyed our visit. It may warrant another post of its own sometime.

The preparation for being away from Micah, though, was intense. I had to prepare all his meals and snacks, label everything, and include some "emergency" food in case he wouldn't eat what we sent along. It took a long time! This is a complicated, very specific diet that he is on, so I didn't want my parents to have to deal with that this time.

We went through a phase this week where Micah was refusing to take his medicine. He has a very strong tongue and a convincing fake swallow! Even with a syringe he was able to spit it back out. So that was stressful. Not because we think his meds are doing much, but because it can be dangerous to suddenly stop seizure medicine. But nothing bad happened because of it, and the phase is over, thank goodness!

Micah's seizure numbers have been steady in the upper teens and low 20s for the past few weeks. We have one more increase in his diet that we can do, to 4.5:1. We are in the process of getting all his meal plans switched and approved by the dietitian. Once we do that, we'll just wait and see and hope for even better control. We saw a significant decrease in seizures with our last fat increase.

I'm used to the helmet now. He's been out in public with it and doesn't seem to mind the feel of it on his head. And every time I hear the thunk of the helmet hitting something during a seizure I am so grateful it is not his head. He has been saved from a few hard falls because of it, especially outside on the cement. It has given us some peace of mind. And yes, he does look like a cute jockey or a polo player as many of you have pointed out!

We head to Chicago next Friday to see the epileptologist at Children's Memorial. I imagine we will discuss what comes next, after this final increase. We do not expect it to lead to complete cessation, so we will need to think about future steps to gain more control.

As I said, it was so nice to get away. We were able to relax and let some of these worries go for a time. It was also wonderful to see Micah again on Sunday. We sure missed him!