July 17, 2014

Still Blogging

It's been a while since I've blogged here, a couple of months, at least. But since I'll be attending the BlogHer conference in another week, I thought I should post something, so I can still call myself a blogger.

Life is chugging along. Moe had several very rough months. We saw a heightened aggression from him, coupled with some very frightening new self-injurious behaviors. Moe was not only biting himself, but he also started banging his head—hard. We thought it was related to some new molars, but the behaviors continued long after that was done. He gave himself a huge bump in the middle of his forehead. He put his head through the wall. We did everything we could to keep him safe, but when we would stop Moe from banging his head, he got mad and would turn his aggression on us, his nannies and his therapists. Behavioral interventions were not working.

So we made the very difficult decision to try a new medication. This is not a decision we took lightly, not only because medications can have serious side effects. Not only because Moe has such difficutly learning and communicating that we need to make sure he is as clear-headed as possible. But also because we've been here before. Last year, we tried Tenex (as well as the related drugs Clonidine and Intuniv). This was disastrous. Behaviors and sleep got worse. I didn't want to get burned again.

After several months of trying everything else we could think of, we started a new drug, Risperodone. I don't share this information lightly, as it is, in some sense, very personal information to share. But I share it because I have learned from others' experiences, and I hope others can learn from me.

So far, Moe is doing well on the drug. The biggest change is that he is falling asleep on his own, and staying asleep. We are no longer using melatonin, which seemed to make Moe really unhappy anyway. This, in and of itself, is an enormous benefit for the entire family. Jelly is also back to sleeping through the night. She, like Jeff and I, had become accustomed to 3am wake ups.
For the first month or so, behaviors dramatically improved: no more head banging, increased attention, less frustration and impulsivity. But it's not perfect. Moe seems upset many mornings, and the last week or so, we've seen some gradual increase in behaviors. We're taking data, and may increase the dose if necessary.

Most importantly, we found a doctor we like, who knows kids like Moe and wants to help. We are watching for the side effects, the most common of which is increased appetite leading to weight gain (and perhaps some link to increased blood sugar and diabetes). But so far, he's doing okay.
What else is going on? We finally decided on a kindergarten for Jelly and are excited about the start of the new year in just 5 weeks! I cleaned out the enormous amounts of clutter in her room (she saves everything), went on an Ikea shopping spree, and set up a new "big girl desk" area in her room, complete with pink chair, and many pink accessories, as well as an "Elsa blue" lamp. She's growing up so fast, and while each year with Moe seems hard-won, some days I feel I can hardly remember so much of Jelly's life.

I have a lot of things to say about a lot of things: Jelly's evolving relationship with Moe, life at a start-up in Silicon Valley, how we're doing with AAC (hint: we need a new approach), the intense feelings that come with living with a very aggressive child, the insantity of the Bay Area housing market. But this post has gone on too long already.

If you read this, thank you. If you'll be at BlogHer this year and want to meet up, send me an email to wantapeanutblog [at] gmail. I'll be at the special needs MiniCon as well.


  1. Love your posts. Always.

    Risperdal was truly a relief for our Moe-like daughter. We just stopped it after a couple years because it wasn't working its magic anymore ... And we never wanted it to be long-term anyway. Glad you're seeing some positive momentum.

    Anyway, just a hello. Have a great time at BlogHer (once a blogger always a blogger?) and perhaps one day I'll find a moment to revisit my own blog, as well. (I know it's here somewhere...)


  2. It's not an easy road and your walk is similar to ours. We also did Risperdone for a few years and then moved onto Zoloft. Good luck.


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