Saturday, December 11, 2010

Abilify Report

These past few weeks have been a very interesting ride.

Regular readers will recall that Joy began a trend of increasing "acts of ow" starting last summer. Injury-attempts were directed both at herself and others, peers and adults -- and the number of incidents simply sky-rocketed with our rocky transition to kindergarten. Most alarming were the bites to staff and to us -- nasty painful injuries (the bites to herself were unsettling too, but her self-bites were at least somewhat less extreme). I've still got bite-marks dating back to September. But we've been concerned to keep everyone safe, Joy and her peers and staff and sister and everyone all around.

So we began to explore whether medication was a potential tool to get Joy to a better place. Lots of kids with autism are on meds, even if it's maybe not talked about as much as other interventions! As things go, we managed to move relatively quickly -- got a psych referral from Joy's primary care doctor toward the end of September, took Joy to the psychiatrist mid-October and wound up with a recommendation to try Abilify, considered and blogged my reflections on Abilify and e-mailed the psychiatrist with questions, had him get Joy's neurologist to sign off, got a pre-authorization for our insurance to cover the medication -- and started at a 1mg ramp-up dose, half the smallest pill, on the evening of November 8. We were to go up to 2mg in 5 days; the clinical trials had gone up to 10mg and 15mg doses.

The decision to start Abilify was one that we actually ended up having to re-decide several times. The thing was, after the psychiatrist appointment, the outwardly-directed "ows" had begun to fade away, and the self-directed "ows" had dropped too. As the numbers declined, the question repeatedly arose: do we still need to do this? and the discussion continued.

JoyDad and I had different impulses in this could-go-either-way debate. It's a tricky thing when parents disagree about treatment. (See a recent excellent essay by Lynn on The Thinking Person's Guide to Autism blog. JoyDad and I are fortunate to be on the same page much more often than not.) In the end, we decided that since the injurious stuff was still happening, though at the lower level, we'd go ahead with what felt like the more pro-active approach.

The very next day at school after she took that first half-pill, Joy had a noticeably rougher day. And the next, and the next. The self-directed "ow" numbers shot back up, she was unhappy, she was drowsy, she took unusual naps, she got constipated, she was hungry and more intense around food issues. When things were still problematic several days later, we got permission to not bump up the dose. When things were still problematic a few days after that, we began to ask, "How long do we need to go to give this a fair trial?" The psychiatrist advised us to try switching the dose to the morning, which seemed to help with the tiredness but didn't change much of anything else. Our follow-up psychiatrist appointment came around on December 2, at which point we sought and received dispensation to halt the Abilify. We plan to make another stab at the drug-free approach (well, OK, she's still on powerful anti-epileptics), and so far Joy does seem to be in a better mood and the "ow" numbers have dropped somewhat.

The weeks on Abilify were frustrating, but not really crisis-feeling. The incident-data patterns were more spiky than consistent, with a couple of pretty darn good days among the rougher ones -- and our (data-free) Thanksgiving trip went better than expected. Still, why push ahead with a drug when it's not clearly helping, seems to be making things worse, and is definitely side-effecting?

The incident data after the quit-point hasn't been spectacular, but it's at least somewhat better. Things feel noticeably better to us though. Last Saturday morning we had the best weekly grocery-shopping trip in recent memory. The therapy-sessions since then have been unusually good. The mood in general has been improved. And the side-effects have faded.

Though Abilify didn't do what we hoped it would, I'm glad we tried it. If we had chosen otherwise, we'd still be in the position of making the to-start-or-not-to-start decision over and over again, every time things started getting rougher.

I'd mentioned in the previous Abilify post that the hair-pulling self-injury was getting worse to the point that Joy's hair was getting thin again. It's been a different situation than when we last encountered hair-pulling, a year and a half ago. Last time was all about the stimmy; this time, it's overwhelmingly about the frustration. I was beginning to worry that we might need to go the buzz-cut route once more, which would feel like an even bigger deal now that she's in school. Before going that far, however, I pulled out the trusty shears on Sunday and inflicted a boyishly-short layered cut, the most ambitious I've ever tried. I think that practice is making progress for my untutored beautician techniques:

Joy's latest haircut
(updated) Photo credit: Rose

And, guess who else is making progress. Here's the latest week's worth of self-hairpull counts from school, starting Thursday 12/2:
28, 22, [haircut here], 8, 5, 0, 2, 6


Anonymous said...

That last data set warmed this ol' researcher's heart! Thanks!

Saying it again, I love how you explain, JM.

I am truly happy for you and JD - being certain of your decision to trial the med. Relieves you the decision and affirms your decision to stop. Heh. 'Dispensation' indeed!

Happy for Joy, too. Barbara

Lynn said...

Starting any kind of meds can be maddening like that. It's so hard to know how long to stick it out. We always tend to be on things of the "gets worse before it gets better" variety, but somehow we only get the worse part. Sounds like you stuck it out long enough to know that it wasn't going to work. Thanks for the link to the TPGA post!

She looks like a little Mia Farrow from the back with that haircut...good job JoyMama!

Professor Mother said...

I've always said that a good haircut has the ability to lift my spirits- and apparently it does for Joy as well! Sorry about the Abilify mess... but now you know. It's always good to know.

Anonymous said...

it's comforting to know when others have tried a drug and can say, it just didn't work or wasn't worth it. i remember when rhema was on a med that supposedly would change our lives. it was a nightmare. a week or two into the trial i cried mercy, and we stopped it. at the time, i actually felt a little guilt that it didn't work for us! now i have a much better perspective.

joy's hair is beautiful any way you cut it. =)
the data set at the end put a smile on my face. xo

Pie Maker said...

Cute photo of Joy's new 'do! I too am a home haircutter, I haven't had the guts to subject a professional to Pie's sensory issues. Also I agree with Barbara, you always explain things so well. Thank you as always for sharing your perspective!

Anonymous said...

We've been on the same road. It helps to read how others make their choices and to hear about the outcomes (for better or worse). I'm always thankful that there are few decisions that are truly permanent. We get to make choices, as you have here and as we did, and then decide differently if things don't turn out as we hope. That to me is freeing.

Joy's haircut is darling. You've got skill!