A misophonia update, or I medicated my kid today

(Actually last week, but who's counting? Oh, right. We are. Very carefully.)

We liked this doctor. We had seen him before, years ago, when another doctor told us H might be bipolar. This doctor didn't think she was, and we agreed, and then he dropped our insurance plan and that was that until he showed up on our insurance plan again years later (read: now), just when we were thinking that things with C might need to be kicked up a bit (or A LOT), treatment-wise.

So. We were sitting there in his office, C and P and I, only C wasn't hearing anything because he had his fingers in his ears, because P was talking. He can't risk hearing P talk, you see, because P talking is one of his triggers. H breathing is another one of his triggers, but H wasn't there. Normally C would have ear buds in, listening to music on his phone, but he had broken his phone two days before in a violent misophonia rage during his second-to-last day of summer school, when someone near him was chewing gum.

(That was a bad day, a day when the summer school principal, who is C's vice principal during the regular school year and one of his "safe" people at school who knows what's going on with him, tried to call all of the emergency numbers she had for C but wasn't able to reach any of us. Fortunately I got her message just moments later and was able to rescue C and set measures in place for the next day, his last day of summer school, and that was fraught with angst on all our parts but it worked out okay, only his phone still was broken.)

So P was talking and I was talking and C had his ears plugged tight but mostly the doctor was talking. He had consulted some colleagues on C's case, had thoroughly examined the diagnostic results and our family history and C's symptoms and C's own personal history, and we talked about electrical activity and temporal lobes and people with autism spectrum disorders having rage responses to stimuli, and then he told us there were three different classes of medications that have shown a lot of success in treating stuff like this.

Three. Different. Classes.

Oh, you guys. I wanted to cry. I didn't realize how much hope had completely deserted me until I felt it spark up again. I felt exactly the way I felt when we were told C had Asperger Syndrome: this is a real thing. It has a name. Doctors know about it. And they know how to treat it.

So the doctor told us about the three classes of medications. He told us the one he'd like to start with, and he told us the exact medicine within that class that he'd like to start with, and he told us why (high efficacy, low risk of side effects), and then he stepped back a bit. He told us that he felt confident recommending this course of action, this medication, but that it was entirely up to us. Did we want more diagnostics first? Did we want to wait a bit, do some research on our own on this particular medication?

P and I looked at each other, and we looked at our son, our boy who is almost a man, who was coiled tighter than any spring with his thumbs jammed into his ears, afraid to even look at us because then he'd just KNOW the sounds we were making and then he'd be off in a blind rage, screaming and throwing things and punching walls.

And we both had the same answer: a year ago? Yes. We would want more tests. We would want to research all this before making a decision.

But now? Today? After watching C self-destruct before our eyes for the past year-plus? After all the reasons you've told us why this makes sense for our individual kid? Write the prescription. We'll start it tonight.

I know that whenever a parent announces that she's decided to medicate her child, it opens up a giant can of worms. All sorts of well-meaning people feel qualified to sit in judgement, to lament how many kids are medicated these days, to rail against a society that makes it okay and even desirable to numb oneself out, to render oneself compliant and complacent. So I'm bracing for that, and while I do not at all feel the need to justify P's and my (and C's, because his input was essential) decision to anyone, I'm not sure I can adequately express the degree to which this was NOT a hasty decision. It was an easy decision to make in the end, but it's one we've been going back and forth on for literally YEARS. Since before the misophonia. Since before the Asperger and Tourette diagnoses. If anything, one might argue that we waited too long to medicate him, that he suffered while we dithered. That wouldn't be entirely accurate either, but I can see where someone who didn't know the intimate details of the past 16 years of our lives might think that.

In the end, for me, I had to reach a point where I knew beyond the shadow of a doubt that I was 100% making this decision FOR C. Not for me, to make him easier to parent or to keep my heart from breaking on a daily basis. Not for his teachers and school administrators, to make him easier to handle and less of a disruption in the classroom. Not for the people who don't know us and see him flip out and wonder what's "wrong" with him. For C, because he is miserable. Because he is emotionally broken. Because he has been through so much in his life, and maybe this ONE THING can be fixed, or made easier for HIM to deal with. When I asked him how he felt about trying meds -- and this was before we even knew there WERE meds that could actually help, but I asked him again after Thursday's appointment -- his exact words were, "I will try ANYTHING. Anything to make this stop."

And so that's where we are. The drug we're trying is Trileptal (generic name: oxcarbazepine), an anticonvulsant medication that's most often used to treat epilepsy. C does not have seizures as far as we know, but his EEG shows electrical activity in the brain that is consistent with a seizure type of disorder. (I have no idea whether that's true of all misophonics; it would be interesting to know.) He started on Thursday with a VERY low dose and we are very slowly stepping that up over a period of weeks until we get to the target dose for his body weight. So far he hasn't had any side effects; neither have we seen any improvement with his misophonia. We're continuing with both neurotherapy and with the neurotransmitter support supplement that C takes (a combination of l-theanine, GABA and 5-HTP) so that we can isolate any effect, positive or negative, of the Trileptal. And soon we'll likely be adding cognitive behavioral therapy back into the mix.

If this doesn't work, there are other things we can try, and that is so exciting to me. Because it wouldn't be exaggerating to say that these past few months, I have been in despair. I've been wondering if C will actually be able to make it through high school. I've been wondering if he'll end up dead or in jail. I've been crossing things off the mental list I had prepared for his future: Live in a dorm at college? Scratch that. He could never have a roommate. Live at home but go to regular college classes? Hmm, maybe not. College students chew gum and eat in class. Look what happened in summer school last week. Live at home and do some sort of distance learning program? Maybe, but can he actually get a degree that will help him make a living? For that matter: Have an actual job where he has to work with other people? Who knows?

Maybe, JUST MAYBE, someday soon I can erase those scratch marks and start adding things back to the list.

As for the biggies: Have a conversation with his father? Be in the same room with his sister? Take a car or plane trip with the rest of the family? Eat at the same table as us for holiday dinners or even just daily meals?

I'm not ready to think about those yet. But now I can hope.