5.02.2011

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.

11 comments:

  1. Our son has been on Risperdal for 2 years also. We just increased the dosage to try and manage his aggressive outburst especially towards his younger brothers and like you I have noticed a huge increased in repetitive behaviours but until now I hadn't made the connection. We are currently trialling him on Strattera so if may be worth us lowering his Risperdal dosage.
    Thanks for posting this. It has been really helpful to read about another family on a similar journey :)

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  2. We've had luck with Abilify for the aggression, but that's just us. I hope things even out and you can get the tics to taper off.

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  3. When Bobby was that age, Risperdal replaced his Zoloft and augmented the Ritalin and Clonidine. Getting the right mix to help him was tremendously difficult. I hope that the Zoloft helps Leo be comfortable in his own skin. ((()))

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  4. This post brought tears to my eyes just now. I'm new to your blog, but grateful a friend pointed me to you. I just got home from taking my dear Olivia (who is 4) to the doctor for medication tweekage. She's also on Risperdal, but we recently downed her dosage. She drools a LOT when the dose is too high, as well as stims a ton.

    I've had so much backlash from those I know, in real life & online, for medicating my child (who also does not sleep if not medicated). You comment, "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." touched my heart. It is just how I feel about medicating my own child.

    Lots of love to you & your family on your journey. Thanks for blogging. :)

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  5. Anonymous9:18 PM

    For whatever it is worth, we have had great luck with Luvox helping with OCD behaviors. I actually thought to myself awhile ago, "Hey he looks pretty good, maybe he really isn't so OCD". Took him off the Luvox. Put him right back on. (This is in addition to him being on the somewhat low dose of 5ml of Abilify.) They really do two different things, at least for my little man. Good luck.

    Raquel

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  6. Nicole, keep us updated, please -- we've not had experience with Strattera, though we considered it after a very unpleasant run with Focalin four years ago.

    Flannery, I so wish we knew why similar drugs like Abilify and Risperidal work on some of our kids and not others. Abilify was a nightmare for Leo, even though we knew many people for whose kids it had been a success.

    Kim, thanks for letting me know what your family has tried -- it's scarily reassuring to know there are so many options, and truly reassuring to know that you are on a similar path. Knowledge-sharing ftw!

    Sarah, I am so sorry anyone has ever made you feel bad about decisions you wish you never had to make for your girl. If you didn't click my first link, it goes to my rant about pediatric medication judgmentalists:

    http://www.squidalicious.com/2010/03/schoolhouse-rotten-kids-meds-myths.html

    I also highly recommend Jennifer Byde Myers's "When Medication Is the Right Choice"

    http://thinkingautismguide.blogspot.com/2011/02/when-medication-is-right-choice.html

    @Raquel, Luvox is on our radar, I'm glad it works for your guy. Thanks for telling us exactly how you know.

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  7. We had ours on Risperdal from age 6 to 8.5. Worked well for the anxiety and aggressive behaviours. Then it rebounded and created them. So, the Dr upped it and we had wetting - school and bed and other side effect.

    The child psych he sent us too told us that children should not be on meds longer than 6 to 12mths. Then they need to be withdrawn for a minimum of 2 weeks, 4 would be better. He was certain we would discover a very hyper child.

    Turns out, he's meds free. Yes, he still has anxiety. Yes, he still has his claustrophobia. He's 11.5yrs old now and I'm not convinced we'll survive puberty without meds.

    But for today.... he can cope. We very nearly put him on meds last spring but during the summer he settled down... but we watched, and had their been a problem we would have been at the Ped's ASAP.

    Truth is, I'd recommend removing the meds first. Before adding more.

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  8. Anonymous8:03 AM

    We are going to be trialing Intuniv this summer. Was supposed to last summer but was too scared. Also had not good experiences with Focalin. It is my belief that, in general, stimulants and our kids are not a good combination. Will let you know if I get up the courage to try it and what happens.

    Raquel

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  9. Anonymous5:11 PM

    Thank you for this blog entry....feeling the same way lately....our son is 18, almost 19, so we have been at this med thing for awhile, since he was about 9...started with Celexa.....just about 5 years ago, started with severe sibs....is now on Naltrexone for them, Luvox for OCD, Klonopin for anxiety, and Dilantin for seizures...had 2, same day, 3 years ago, and none since. You write so well, Shannon - thank you for putting into words so much of what I feel...and Sarah, please come on here, when you're feeling judged by others....take care, Deb, mom to Sean

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  10. Racquel - we attempted meds for the younger to help with the sensory. First was Adderall. 5mg, ok... 10mg... OMG... he stood at his swing in the playground and simply flicked his fingers in front of his face... thank goodness they were 12hr meds. The child psych returned my call ASAP - which I appreciated and we pulled it.

    Risperdal only had him waking up at 4am every day. The school claimed it worked... bull.... we pulled it too. All it did was turn my scrawny kid into a tubby one and still to this day, even though he doesn't eat anymore and has grown 6" his metabolism is still very slow. His new class does a proper sensory program and he's doing just fine.

    I think it depends 100% on the child and the meds. I was very disappointed... since he was having a lot of sensory issues at the time and his bro had had such good results when he was on meds... but it happens. I'm just glad his new class - verbal, LD, low behavioural, self-contained - a proper sensory program, has worked in it's place. Sometimes it really does depend on the Teacher.

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  11. After 1 week of taking strattera nothing has changed but you do have to build it up so hopefully as the weeks and dosage increase we will have some positive reports

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