Thursday, June 17, 2010

What Now

At some point yesterday, we decided to give Collin a regular dose of clonazepam every 4 hours for 24 hours to try to break his seizing cycle. Interestingly and unfortunately, it didn't have the effect we had hoped. Rather than knocking him out and stopping his seizures all together, Collin has continued to seize sporadically and is still having trouble falling asleep despite being very groggy and lethargic.

He started off this morning with 6 huge dirty diapers, which makes us think that this seizure trigger might have been digestive in nature, but even if that's the case it doesn't mean that the seizures will stop now. It seems like Collin's pattern is that once the seizures get going, they have a hard time stopping even when the trigger is long gone.

So the question now is what to do in the meanwhile. Do we continue dosing him with clonazepam and hope that the desired effect will kick in at some point? Do we abandon clonazepam and let his body work things out on its own (since we've seen in the past that it can...eventually)? Do we stop clonazepam, watch the seizures and only use the med for clusters? Do we talk to the neuro about other options? That one always makes me very nervous because it always feels like they are very anxious to 'start' a new med, which we're not interested in at this point. We're still thinking along the lines of 'rescue meds' - used only during spells of seizures rather than daily.

We are going to hang tight at our current ratio on the ketogenic diet, although I am going to experiment with a different fat source. We had been using ghee (clarified butter), but it is solid at room temperature (like coconut oil, which we tried in the past), so it separates out and never fully reincorporates, which isn't good for a blenderized diet that has to be very precise in its ratio of ingredients. For now, we found a good cream that isn't ultra pasteurized or homogenized and we'll use that as we investigate other options. Hopefully, his ketones will come back up in the meanwhile.

One of the things I hate so much about seizures disorders - and I actually remember thinking this the very first day I realized that Collin probably had Infantile Spasms - is that there are no good options. There are no even remotely easy decisions. For example, Collin has already stopped crying with these seizures. Is that the effect of all of the medicine or of the seizures themselves? Do we take him off of the clonazepam to see, risking more seizures, which may be the actual cause in the first place? We are constantly talking ourselves in circles trying to find the best of countless unsatisfactory options.


  1. For most of my life I've been under the delusion that there are definite answers to medical questions and that doctors have them. You have taught me that a patient (or a patient's parents) has to be proactive and educate him/herself. I can't imagine making the complex decisions you two are making, but on that note, I am in awe of your reasoning and knowledge base as you make your way through the murky water of seizures.

  2. My head is spinning just reading that. I do know this. I have complete faith in you and Kyle to tackle this.