Drugged

Dravet is a very complex disorder. Things are constantly changing, especially in the first 5 years or so of life. Cole is a true testament to, "Never Get Comfortable".

We had a great honeymoon with Depakote. You may recall my love letter. His long seizures were less frequent, they were shorter. He seemed to be able to handle overstimulation better and started exploring the world outside of our four walls. There were still plenty of seizures, but most of them were small. Then the small seizures increased to the point that I had to use extra medication to stop the clusters. Almost every day. So we decreased the dose and added Topamax. We changed things around, lowering the dose twice and things seemed to even out again where I was only using extra rescue meds a couple of times a week instead of every day. That lasted for a week or so and the myoclonics were back, with a vengeance. It seemed that he couldn't even go 5 full minutes without some sort of seizure activity. So we changed things again, and they got worse...not better. So we doubled one med and they got just plain awful. Cole was only having 45 seconds to a minute of respite in between clusters and he also started having a lot of myoclonic eye flutters, something he has only had a handful of times in his life so far.

SO-what do we do? More meds=more seizures. Less meds=more seizures. We can't go back on the diet or he will stop eating completely. Neurofeedback didn't work. Homeopathy didn't work. SPIO and other special equipment is not enough. Is it time for stiripentol already? I'm not sure what to do since we have tried Plan A, B and C. Is it time for Plan D so soon?

To stop the cycling, today we gave him a loading dose of clonazepam, "To throw water on the fire". We've done this with other meds before, but never with a benzodiazepine. The doctor reassured me that it would make him very tired and told me to make sure he got a good nap. We've used clonazepam before as a rescue drug (0.25 mg) and I knew it worked well for Cole to stop small seizures. So, with a quadruple dose in his system (basically 4 pills equaling 1 mg), plus 3 other seizure medications, he should be knocked out cold, right? Um, no...if you recall, my son has the nickname "Mini Hulk". He can withstand incredibly high doses of medication and has a very high pain threshold. Remember when I won the Mother of The Year Award when I broke his foot during therapy? Yeah, high tolerance for pain and drugs is an understatement. I actually chuckled when I read the new protocol this morning.

Instead of sleeping, like a regular person would if they had this amount of benzos in them would, he is a total chatterbox. Right now, he is alternating between talking like a pirate, singing Old MacDonald, and having conversations with inanimate objects. You can totally tell he is drugged, especially if you know him. Yet, hardly a seizure since the big dose. Oh, it is such a balance. Seizures or being strung out? All in the day of the life of Cole.