Medication Update

Tenex is a teeny tiny round pill.
It is very difficult to cut it into a quarter dose.

My last post was about starting medication with Moe. I was not expecting any miracles, of course, but was anxiously anticipating some improved sleep. I hoped that the result would be a decrease in negative behaviors, anxiety and dysregulation.

We started him on Tenex, orignally developed as a blood pressure medication but commonly used for kids with ADHD and autism. The first week went well. Moe fell asleep fairly late, between 9-9:30, but was much less agitated while falling asleep. He slept consistently through the night, and woke around 7:00. This is not enough sleep for a six year old, but at least it seemed to be uninterrupted sleep.

We started with 0.25 mg then increased to 0.5mg (a half pill) before bed. We were worried about how we would give Moe the pill, but it is so small that we just put it on a small spoonful of yogurt or pudding and he swallowed it no problem. Since the first week went well, we added a 0.25mg daytime dose as well. This proved to be too much for Moe, and he was very sleepy during the day. He also started waking up at night.

We decided to add the 0.25mg to his nighttime dose, so he would be taking 0.75mg at night. We didn't see much difference in sleep. What we did see, with increasing intensity, was a dramatic uptick in aggressive behaviors. Moe was not himself. He was scratching and biting with no clear antecedent. At one point when I was in the kitchen, he ran at me from the back and bit me. Fortunately, he only got the back of my shirt. It was scary, and I owe a huge amount of gratitude to Moe's ABA team, who scheduled extra sessions to provide additional support. (And apologies to the amazing M who was met with tears of my own as I opened the door earlier this week.)

Moe can't tell us exactly how he was feeling, but it was clear he wasn't happy. Was he feeling dizzy, one of the possible side effects of the drug? Was he overly tired? Upset stomach? We don't know. What we do know is there was a clear correlation with the increase in the med with the increase in behaviors. On the advice of our psychiatrist, we reduced the medication back to 0.5mg two nights ago. The following day was much better, though not great. Last night, we took him off medication entirely. He didn't fall asleep, and we gave him melatonin, but the result was about the same: about 9.5 hours of sleep.

He had a great first part of the morning today, but has since been very dysregulated, with lots of tears. But he's been much less aggressive, and his behavior is more consistent with overtired Moe, than feeling really crappy and pissed off at the world Moe.

So now we have a decision to make. We could do nothing and go back to the status quo, which wasn't great but was at least a known quantity. We could try the next medication on the list, Intuniv. This is the same drug (guanfacine) as Tenex, but in a once-a-day slow release dose. Or we could switch to a new drug, likely Clonidine, which has some various dosing options.

This is how these things go, I am told: trial and error until we find the right thing. I am grateful that we are working with a responsive and knowledgable psychiatrist who has returned my calls every single day. I will keep the blog posted with how things continue to progress.