epilepsy seizure ketogenic pediatric

Asking The Big Man For A Reason

Most nights, I ask God why this is happening to my son.

We went in for our three-month checkup for the ketogenic diet and also saw our neurologist. The good news is that the diet is helping. The bad news is that his EEG looks worse than it did last time. The good news is that the neurologist thinks it’s because the medicine he was toxic on and that we weaned him off was helping with his seizures but there is another medicine we can try. The bad news is that we’re adding yet another medicine, and that the new medicine has some really scary side effects, especially if it is introduced too quickly.

We knew this was coming. Our neurologist has been mentioning the new medicine for weeks now. We had hoped that, as we weaned off the other medicine, that the diet would have done more. But as his nighttime seizures increased, we slowly started to accept that the diet and the medicine that he was still on wasn’t doing enough. In the end, we opted to give him the new medicine, and his first dose was last night.

My wife is out of town, so it was just me and my son. After I triple checked the literature to check how much to give him, I cut the pill, placed it on the counter, and watched him place it, along with his other pills, in to his mouth, grab the water, and swallow the lot.

We won’t know whether the medicine will work or not for at least weeks, and he won’t be up to the target dose for months. That is, unless the side effects kick in, which would mean we have another set of problems to worry about. But maybe this will be the first medicine out of the 7 we have tried that he won’t have an adverse reaction to.

God and I have a…complicated…relationship. We haven’t always seen eye to eye. Like my biological father, God and I hadn’t really talked in years and I rarely (if ever) talk about either of them. Unlike my biological father, though, He and I started talking again when my son was born. I thanked Him. I thanked Him for blessing me with a healthy baby boy. I thanked Him for my family. I thanked Him for my life.

I still thank Him. What is happening to my son is a terrible thing. Like many parents, if I could take this burden from my son and bear every seizure instead of him, I would. Unfortunately, it doesn’t work that way.

But even as I question the reason that this is happening, even as I wonder why this is part of His plan, and even though I wonder how He do this to a child, even though He may never answer, I still thank Him for the gift that is my son.

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