Done with It

We have reached our limit on seizure interventions. For now. There was a moment in our last hospital stay where Lydia was crying inconsolably at 2am, wearing blood-stained bandages on her neck and waiting for the nurse to bring her oxycodone, and I thought to myself – this is it. We’re done. No more surgeries, no more drugs with their crazy side-effects. Done. It takes some people years to try as many things as we have in the space of ten months. Part of this is due to Lydia’s high daily seizure count. You can see right away the difference in a hundred seizures versus forty. In all this time, with all the drugs, her best results have been coming off of one of the drugs that she was on the longest, Topomax. There’s nothing anywhere that suggests Topomax will cause a rise in seizures and no neurologist seemed concerned when I brought it up, but there it is. She started Topomax the day after her MRI last July, was having over a hundred seizures in January and February, and then came back down to an average of fifty a day since she was fully weaned a week ago. Last Thursday I clocked 32 seizures for the day. I rub my eyes and read that again. It is the best day she’s had in months.

Honestly I don’t know if it was the Topomax causing the spike. According to my notes it times up more closely with our vitamin B6 trial. But that sounds really crazy to blame a vitamin for the spike. Anyway, no matter, we’re taking a break from it all. Going to wean her from all the stuff that isn’t working. There’s a statistic that I keep coming back to from Nationwide Children’s Hospital:

The first seizure medication chosen has about 60% chance of controlling seizures. If that medication fails, the chance of seizure control drops to 10%. If two medications fail, then there’s only a 1-2% chance of controlling seizures.

So we have to accept this – our daughter has seizures that can’t be stopped. For now. We haven’t tried every drug so maybe we will come back to the medication project at another time. I’m not sure if the neurologists will be supportive of this break. There’s not much else they can do but offer and manage medications. Though I suppose they’ll have the VNS to tinker with next.

My upcoming projects will be related to establishing a therapy routine and picking up the pursuit of a diagnosis.

And so we keep on.