Slightly polished rough draft from a few days ago.

Leelo's first ten days on Abilify have been rough. Its sole benefit has been soporific -- we watch in disbelief as Leelo gets so sleepy that he puts himself to bed, earlier than usual (i.e., at his actual bedtime). Seymour pointed out that this drug may be completely altering Leelo's perception of the world, and we need to give him time to adjust to how the world now seems to him.

Aggression/self-injury. I don't think these incidents have increased in frequency, but they have increased in intensity. When he loses it and goes after someone, he *really* goes after them. There's no bluff or intermediate tapping; he goes for the full-out assault, for instance getting a bead on Mali from across two rooms, going after her much faster than I can catch him, and cornering her. This includes him slapping his own head on both sides when he's frustrated, usually because he's been asking me to eat all day long every day. When I say no, it's not time right now, or try to redirect, her starts smacking his head so hard that he has bruises on his cheeks.

Those bruises have never happened before, and it is unbearable to witness. This has nothing to do with me getting him to eat apples -- he does that voluntarily and it seems to have fit into his routine seamlessly. I demonstrated how good he is at eating apples (veggie booty reinforcers after each bite, but still) to Therapist R, who came for two hours this afternoon [Friday 11/28] to save my sleep-deprived butt after Leelo woke up at 4:14, and Supervisor E, who dropped by for an hour to meet with me and discuss how things are going with Leelo's home routine, eating, behavior, visual supports, etc.

I have to consider that even though Abilify has the potential to increase his appetite, he is also out of school and mostly just with me right now -- and as much as I am trying to keep him entertained and busy all day long, he is a difficult boy to keep busy and entertain all day long. There are gaps. And he doesn't like the gaps, so I think he immediately thinks to fill them with something he likes to do and is good at: eating.

Dr. R, his new psychiatrist, says it sounds like the Abilify is wearing off by morning, and we could put him on 5 mg 2x day -- but it makes him so groggy I don't think it would be good for him to be at school in that state. And we would like to see him have one completely routine week on the Abilify, a week without colds or holidays or birthday parties or sisters and dads going away for several days. Let's see how he does for at least one routine week and then start considering tweaking, adding in Claritin, etc.

Seems to be back on his game in terms of focusing. For the last two weeks he had a really hard time focusing and even getting his own underwear on independently. But he also had a cold. This week his cold is gone and he is getting himself fully dressed down to his socks, independently and frequently without any prompting other than me leaving the clothes out where he can find them.

His language is good, seems to be increasing. I don't think this is solely the Abilify as according to his daily record he started using this kind of language a few days before we started grinding up antipsychotics and putting them in the peanut butter of his dinner sandwich. He may just be going through a language spurt as he has in the past. But is very cute and he has been incredibly engaged and social. Examples:

  • "Want to go outside with Godfather M"
  • "Hi, Supervisor M!" (unprompted)
  • "Hi, Therapist R!" (unprompted)
  • "Want to kiss Elizabeff, want a kiss, Elizabeff"
  • (pointing at my friend Roo whose name he didn't yet know): "Jump with me" [on the trampoline],
  • "Want to go play outside"
  • "Bring the green straw"
  • "Want to play outside with Merlin" (who was over for Thanksgiving)
  • "Want to jump [on the trampoline] with Ki"
When Ki (beloved friend from Iron Gate Nursery School) came over, Leelo ran over to get the wiggle cars so they could ride them together. Was very social with her all night.

Nice to see some niceness amidst the grueling grind, but the lack of sleep is killing me. Doesn't seem to matter if I push his dosage time back, if it's at 5:30 or at 7:15. Goes to bed by 9 PM and is up around 5:30, sometimes as early as 4:15, sometimes gets up for a spell in the middle of the night. Regardless he seems to be sleeping for no longer than eight hours every night. With no school and zero to minimal respite and Seymour away for several days, having him sleep the same amount of hours as I'm supposed to is killing me. Especially since Jennyalice and I published Can I Sit With You? just two days ago, which means I've not had enough sleep for most of the week already due to my work day usually starting around 9:30 PM.

Not a whole lot going on to convince me that medicating Leelo was the right idea, but I'll give it another week.

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  1. it's so hard to start medicating... We've been doing it awhile now, without luck finding the right med/combo... Once you find that balance though, everyone will be happier. We've just given up on Risperdal and are starting Clonodine tonight... It's scary starting something new.

    Good luck with the Abilify. Give it a fair trial, as much as that sucks.

  2. It is hard. Really, really hard to find the right medication with the most benefits and least amount of side effects. I am so sorry this is difficult and I don't have the added distress of a younger child in the mix, that is the part that would kill me.

  3. Medicating is heartwrenching. We just had a med adjustment- Jaysen's on Risperdal. The Risperdal has been great, except he's really gained a lot of weight on it. His doc is wanting to switch him to Abilify, so I'm glad to read your experiences with it. I'm with Amber- starting a new med is scary, once you finally get used to one. Please keep updating on the pros and cons! :)

  4. This is my first time to your blog so I am just learning about your little one. M is on medications. It was a long long trial and error road before we found a right combo for her. We tried all of the ADHD medications and the only one that she was ever able to tolerate was Strattera. Abilify, Concerta, Ritalin and the list goes on...they all made her very very aggressive and self abusive. Strattera does not have that affect. It was only after going to the Cleveland Clinic and being highly encouraged to try Strattera that we did.
    We have had the best luck for aggressive behavior from Lamictal and Seroquel. Those two medications have changed her life for the better.

    Medications are a tough and personal choice. I took a lot of abuse from family and friends when we began using medication for M. I don't regret it though. Without her medications she would not be where she is today.

    Hang in there.


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