I didn't write this post earlier in the weekend because, frankly, it would have been too depressing for both of us. Collin was having more seizures than ever before on his first days of the ketogenic diet. We combed the internet and our own literature but couldn't find anything addressing this issue, so we called the neurologist in Cincinnati, as well as the keto dietician. Both said that we seemed to be doing everything right and just encouraged us to stick with it. I then contacted Collin's neurologist here in town, who agreed with the other two neurologists that we're seeing the normal ups and downs of Collin's seizures rather than an actual increase due to the diet and then gave us some parameters for increasing clonazepam while we tweak the diet.
But here's the thing. I don't believe any of this about his seizures not being related to the diet. He was on a pretty set pattern of 24-48 hours of seizures every two to four weeks, but just happened to start another cycle the night of his first full day on the diet and it just happened to last 6+ days instead of two? I don't think so. Think of the strain on his little body from going from breastmilk (supplemented with organic babyfood more recently) his whole life to a synthetic formula composed of 90% fat within 24 hours. Pair that with the resultant body chemistry change (which is the whole point, but still a big shock) and the accompanying constipation, nausea, and sleepiness that usually plague the first couple of weeks - it makes me want to seize just thinking about it. And as we have learned over and over, as tough as he ultimately is, Collin is a sensitive guy. He doesn't like change (can't imagine where he got that) and has to work hard at adapting.
So, I would be a dirty liar if I said that our initial experience with the diet has been a positive one. It was a rough, rough weekend. On top of the seizures, Collin was totally out of it a good portion of the day - like almost completely unresponsive - and when he was awake, he usually wasn't using his eyes or smiling. So, here's how it felt: things were going well with Collin - he was doing great with his NACD program and making improvements in interaction and skills - and we did this to try to make them even better, but instead made them worse. That's a sickening feeling.
BUT - and this is why I didn't post this weekend, when we were in the thick of things - I put together a chart to help me keep track of Collin's ketone levels and other diet information and realized that he's actually having about half as many seizures as he was late last week. I guess this would be more of a comfort if he hadn't had the spike in the first place, but it seems to me that it either means that a) the diet is starting to work, b) Collin is getting used to the diet, or c) both. I'm pulling for c.
The other good thing about this weekend is that it brought home to me once again the extent to which Kyle and I have learned to cope with hard things over the past year. When we felt that squeezing pressure of discouragement and anxiety Saturday, we packed ourselves up and went to the zoo. When Collin was still refusing to wake up by 4:30 on Sunday, we all went for a walk out in the sunshine. Both saved us. And even though this is another post for another time, those little redemptions are the moments I feel I can see God most clearly in this whole mess.