Autism and Never-Ending Medication Fine-Tuning

We're still fine-tuning Leo's meds.

It's been two years since Leo started taking Risperdal to help manage his aggressive and self-injurious behavior. It works, for the most part. He no longer destroys furniture or terrorizes his sisters with his outbursts, nor does he injure himself or others. (He still has the occasional frustration-based outburst that, in hindsight, usually could have been prevented.) The drug doesn't make him any less alert or present. And it seems to stabilize his sleep patterns.

Unfortunately, putting our sweet, giggly boy on a black box antipsychotic has not helped another disruptive feature of his autism: repetitive and compulsive behaviors. Right now, Leo needs to stomp, spin, get repeatedly up and down from chairs or toilets, open and close doors, swallow air & burp it back up. He can't not engage in these behaviors. I realize that stimming can serve a legitimate function, or be a coping skill -- but in Leo's case the behaviors seem more compulsive than self-soothing, and are interfering with his ability to focus and learn both at home and at school.

Behavioral approaches have not worked, nor have blocking (how do you block a burp?) so we experimented with increasing his Risperdal dosage under the guidance of his autism/meds specialist doctor. The large dose didn't help his behaviors at all, and in fact seemed to bring out new ones like head rolling and arching, made existing compulsions more pronounced, stoked his already-ravenous appetite, and led to extreme enuresis. Not good. Not what we were aiming for.

So, we rolled Leo's Risperdal back to the very lowest dose -- the dose he'd started with in January 2009, and which we'd increased in the interim due to his being a growing boy. After a few weeks at that new dosage, we added a very low dose of the anti-anxiety med Zoloft, at half-dose for one week to see if he got hit with side effects. He didn't, so started giving him a full (but still extremely low) dose.

It's been three weeks, and I'm not really seeing any dramatic benefits, but Zoloft generally takes a month to kick in, so it's still early. And we have to be careful about perceiving meds-associated changes in a changeable boy who is constantly cycling and testing skills, as well as steadily growing and maturing (yet another reason why keeping a daily record is something I recommend -- data data data).

But here's what is different since Zoloft: mumbling, whispering, and ventriloquist-style talking through his teeth. He can be coaxed or prompted out of it, though. We are also seeing different language -- longer sentences, asking for songs and stories he's not asked for in years (have you ever tried to play The Lonely Goatherd on a pennywhistle? It's hard!), spontaneous declarations, associations (after singing Laurie Berkner's Goodnight, which refers to animals and the sounds they make but never associates them outright,  Leo listed all the animals in the song by the sound they made "Owl says 'hoo hoo,'" etc.)  He's experimenting with jumping with two feet at at time -- up stairs, in and out of the car. But, again, we're not sure if these changes are because of Zoloft. Might just be Leo rejecting stasis while embracing routine, as is his creed.

This semi-controlled med flailing is one of the hardest parts of Leo's kind of autism. He doesn't have a specific condition know to react to a specific meds, so we are stuck using trial-and-error, and damn have we had some errors. Overall, though, I believe we are headed in the right direction -- whether Zoloft is the right drug or not, I think his compulsions are rooted in anxiety.

And funky compulsions or no, Leo is in a good space at the moment. He is happy, he's affectionate, he loves hanging out with us, playing games, interacting, singing, hiking, goofing around with his new iPad 2 taking pictures of himself or with his sisters. It's spring and it's sunny and our annual Pool Opening is coming soon, he can just tell. He has much to be grateful for, as do we.

But Leo deserves more, he deserves ease, he deserves to be comfortable in his own skin. So we'll keep fiddling until we get his meds right. And wrestling with our own anxiety, all the while.

Medication Sea Change

I took Leelo in for a fasting blood draw this morning. By "fasting blood draw" I mean our boy went twelve straight hours without food -- a real challenge for a kid who wants to eat the moment he awakes, cries real tears if that wish is not fulfilled, and who has recently resumed early waking.

I was nervous. Which is the short version of, "By 7 PM last night, I had developed constant chest pain, as is not uncommon with an impending panic attack."

Thankfully, our boy was brave, and the blood draw swift and smooth.

The positive outcome was not entirely a matter of luck. We kept Leo up a bit late, so he was still asleep at 6 AM when I needed to wake him. I whisked the snuggly sleeping boy out of bed, onto the pot, into his clothes, and out to the car before he was truly awake, while Seymour sneakily put together a morning meds PB&J sandwich and slipped it into my purse.

We also arrived the moment the lab opened, so as to be first in line and avoid a waiting-fueled breakdown. Leelo didn't have time to get agitated, so he only tried to pull out the phlebotomy needle once, and it only took three of us to reassure him and help him stay still rather than the usual five of us to hold him down. By the time the last blood vial had been popped off his line, even the nurses were chanting, "First needle, then sandwich."

He sure enjoyed munching on that sandwich. And I enjoyed a peaceful and side-effect free morning with Leelo, even though he'd started his day off-routine with an empty stomach and a stab.

Part of his emerging ability to tolerate unpleasant scenarios is maturity -- his kind of autism means developmental delays, not developmental stasis -- but another part is the medication Risperdal, which Leelo has been taking for just over a year. And Risperdal is the reason his blood was being tested in the first place -- last month's non-fasting and therefore less reliable blood test indicated that his blood sugar and cholesterol levels are elevated, putting him at higher risk for diabetes and cardiac issues. If he shows the same elevated levels while fasting, then we may need to switch him to another medication.

I'm not thrilled, because we went through some fairly fiery hell to find Leelo the right medication, and I don't want to risk a repeat. But I'm also not surprised. Though a very low daily dose of Risperdal brought Leelo (and, so us, his family) almost an entire year of relative bliss, we're starting to realize that the drug's effectiveness is fading. He's slowly resuming the challenging sleep patterns of his first eight years, and he's starting to have less patience with adversity or the unexpected.

We know why the Risperdal is becoming less effective. He has grown a lot, gained a lot of weight over the past year, while his dosage has remained constant. But neither we nor his doctor want to raise his dosage, as it could skew his blood sugar level even further, it already makes him hungrier than usual, and we don't really want to find out what lies beyond "constantly, desperately ravenous."

What will our options be? Most other medications in Risperdal's class of antipsychotics have similar potential side effects. The best option so far seems to be Seroquel which usually brings more sedation and less weight gain, and is usually fairly effective in terms of stabilizing mood. Another occasional choice is Geodon. It's weight-neutral. But it can also change blood chemistry and electrocardiogram readings, so we'd have to do periodic EKGs -- not something Leelo would likely submit to.

Another option: sometimes when kids with autism have intense behaviors or stims, they are rooted in anxiety. The anti-anxiety drugs typically prescribed to kids like Leelo are SSRI meds like Zoloft or Prozac. Their side effects are usually not significant: sleep disturbances or increase, appetite increase, stomach upset, headache, and very occasionally they have the opposite of the intended effect.

They're worth considering, because Supervisor M thinks Leelo's lingering, cycling, currently escalating, and always present stim behaviors -- which at the moment include raspberry-style spitting, repetitive slapping of or stomping on hard surfaces such as car interiors or wooden floors, needing to slam the toilet seat several times after each potty drop, and spinning -- are actually an OCD or anxiety manifestation.

I have to admit, I'm bummed that we're having to consider switching Leelo's meds at all. He had such a great 2009, and I took none -- none! -- of it for granted, as his late-2008 Abilify-generated tantrums and violence were one of the worst periods our family has ever experienced. I am grateful to Risperdal every time I'm able to sit down with my son and watch even 15 minutes of a movie or video, if he also puts his head on my shoulder, and for the 90% certainty that he won't randomly turn around and punch me. Even though his behaviors are ramping up and his sleep is eroding, I'm still loathe to make any changes. What if it doesn't work? What if things get worse? What if, what if?

We won't know what path to take until we get the Leelo's blood test results back next week. But any interim input, opinions, experience, or citations are welcome.

Photo: Leelo at Hayes Green Playground

Disclaimer: Don't rely on me for medical advice, duh! Also, I know plenty of people whose kids had positive experiences with Abilify. Just not -- really not -- my son.