Posted by: autismland | January 15, 2007

Trial, Error, Adjustment (#573)

Since last Saturday, we have been giving Charlie half as much of one of his medications, Zoloft, after our visit with Charlie’s pediatric neurologist. Charlie has been taking Zoloft in varying dosages since February of 2004, since he also takes Risperdal. The doctor had first recommended the Zoloft because we had often observed Charlie showing signs of anxiety (tense shoulders, making certain worried sounds, moaning) before he head-banged. Charlie has been taking Risperdal since the spring of 2005 and—coupled with the right kind of educational program—-this has helped to get the head-banging under control.
Giving these medications to a child, and a child with very little language—and, in particular, without the language to say “My head hurts” or “I have a stomachache”—has always seemed a risky business to me. Jim and I have to observe everything Charlie does and write it down and explain it all carefully to the doctor; the doctor had once asked us to videotape Charlie when he was in the middle of what we wondered was a seizure, but (as the doctor acknowledged), it was not very easy to get the camcorder out at those moments (this is meant to be an understatement). Since starting his current in-district public school program last June, Charlie has been doing well, making small but solid strides in his academics, learning to write words beside his name (Charlie’s very long journey to learn to write his ABC’s is the subject for a post unto itself), liking school and being generally peaceful-easy feeling.

On the basis of all this, we thought it worthwhile to see if we might decrease Charlie’s Zoloft dosage with a view to taking him off it completely.

Charlie woke up smiling this morning, went “up-stairs!” and opened the refrigerator. “Chock-lett!” I explained that it was rather early for dessert and suggested some bread, which Charlie quickly ate. “Chock-lett.” “How ’bout an orange?”

Scream, bang.

An attempt to give Charlie an orange when he had calmed down resulted in a flying orange and “No orange! No orange!” We tried to start Charlie on a puzzle, which he swiped away after a few minutes.

Screaming and banging.

Charlie started to work the puzzle a second time around and gagged down a few pieces of orange (I took it—looks like we’ll be finishing the oranges) before retiring to a chair with the chocolate and a spoon.

Jim and I added up a few things: Charlie’s almost meltdown on Wednesday when he and I got stuck in rush hour traffic and he said “SQUISHY BALL” over, over, and over. The alarmed—verging on frantic—look in Charlie’s eyes for the past few days whenever we have not been home and he said “squishy ball”: He has been very worried about where it is when we are not home. Charlie’s teacher noting that, on Tuesday and Thursday, he had flop-down-bang-on-the-back moments of a minute over wanting to do a certain puzzle. And, this past week, I recalled Charlie’s worried insistence on eating certain foods—the chocolate pudding, various sauces in jars which he calls “hummus.”

We remembered, the original reason we started Charlie on Zoloft was for his anxiety. We decided to give him the dosage (which is not a large one) that he has been on for over a year.

So how did the rest of our Sunday go, and how much can be attributed to a half-pill more of medication? how much to Charlie, now that he is getting older, pulling himself out of a tantrum, a “behavior squall” and are forgotten? how much to something else? to a combination of numerous factors? (This last gets my vote.)

Charlie led Jim through the streets of our town on a quick bike ride before his piano lesson at which (this is a real quote) his piano teacher said “I’m just flabbergasted” when Charlie played the C and D notes with his left pinky and ring finger with complete ease. For the first time, Charlie went to the teacher’s suitcase of supplies, said “open” and looked through several toys (including a mini-massager with a flashing light and a set of metal blocks). While I was talking to his teacher, he ran back down the stairs and told me (also for the first time—Charlie has a hard time knowing when to say “upstairs” or “downstairs”) “Mom up.” And this evening, while looking at a show of beach photos on Jim’s computer as Jim and I talked and laughed over another weekend in Autismland, Charlie (as always listening in, regardless of what his face might suggest) suddenly said,

“Wise up!”

I don’t think I can one-up Charlie on that.


  1. I weaned my boy off Paxil about 1 1/2 years ago. It’s also an SSRI. I would recommend very, very, very slow stepping down, especially the last and lowest dosage. I saw some immediate changes (not so great) but they passed, and he’s doing better than ever. I, also, have peace of mind.

  2. “the doctor had once asked us to videotape Charlie when he was in the middle of what we wondered was a seizure”

    It’s hard to differentiate between a violent seizure and, an autistic meltdown, or a violent bipolar mood swing. I’m not a doctor of course, but I would think Charlie is probably not having seizures and his episodes are more related to meltdowns, especially since he doesn’t seem to have had a history of seizures, but I could be wrong.

    Speaking of seizures, Kassianne in her blog mentions that after she has a seizure she can’t speak for awhile. We’ve seen the same thing with Edith, only with her it is only sometimes.

    “So how did the rest of our Sunday go, and how much can be attributed to a half-pill more of medication?”

    I indadvertantly let the Risperdal that Edith Rose takes run out on a school night. That mean she went to school the next morning without her Risperdal dose. The difference without her medication was drastic. When I went to pick her up after school, her teacher reported that it had been a really bad day for Edith in school. She spent the whole day screaming and crying. I could tell. Her eyes were swollen and their were still tears in her eyes and on her cheeks. I watch the level of the medicines she has much more closely now!

  3. Oh boy, does this post resonate with me! We had tried to slowly increase Brendan’s zoloft to the dose his psychiatrist told us was necessary to help his OCD but this resulted in Brendan “revving-up” so much that he was practically psychotic. After bringing him back to his former dose (which he’d done well on for a year) we reduced it (again, slowly) with the intention of switching him to an SRI, but that caused noticeable, undesired behavioural changes as well (more meltdowns & head-banging). All of this fiddling has been done to try to get him off seroquel, which he’s been on for 2 1/2 years, has caused Brendan to have considerable weight-gain, & makes us worry about long-term side effects. He’s back on what we think of as a maintenance dose of zoloft, along with a lower dose of seroquel (the one good thing that resulted from all the fiddling) & also a small amount of klonapin & doing pretty well. Whew. The whole purpose of these meds is to relieve Brendan’s anxiety enough that he can have a childhood, rather than be in a constant state of anxiety (which was causing psychotic episodes before we tried medications). According to his psychiatrist, Brendan has a few too many things going on (autism & Tourettes on top of the OCD) for there to be a simple, one-drug solution to his anxiety, & he has extreme sensitivity to some of the drugs, so we don’t have as many to choose from. Sooo… I can really relate to your watching, documenting, wondering- even though Brendan is hyper-verbal, it’s not always easy for him to tell us how/what he’s feeling or if he senses any changes from the medicines, so how he responds is usually a matter of how his behaviour changes. Add to this that he’s a growing person, & it becomes nearly impossible to tease out the causes of various events & behaviours. Out of respect for Brendan we have to do our best to walk a line between giving him the best functioning possible without over-or-under-doing it meds-wise.

    It is comforting to read about other parents struggling with the same issues, particularly since there is sometimes suspicion of parents who are going the meds route. I can understand this, but also want it understood that many of us who are doing so are keeping respect for their child, rather than convenience or a desire to control, in the forefront of any decisions made. On one hand, the decision to use meds for Brendan’s anxiety was one of the hardest we’ve ever made, but on the other hand, it was not hard to do because he was in so much distress, which we’ve seen improve with the use of meds. My fondest hope is that he’ll outgrow the need for medicines & be able to handle his anxiety using cognitive skills, which he’s learning in sessions with his psychologist & developing as he matures.

  4. Thanks, Clay—we don’t think he is having seizures, though we wondered a year ago. I keep Charlie’s meds by my alarm clock so I don’t forget to give him to them…..Jamie, I’d still like to take Charlie off the SSRI’s or at least keep the dose as low as possible. We tried Paxil with Charlie and he did not do well on it—-glad to hear your son is okay without the meds now.

    Lisa, your accounts about Brendan and his medication have been invaluable to me—-I just feel like it’s one “try and see” after another. “Distress” is the right word for how Charlie has seemed on and off in the past few days, especially about that ball (which, because he’s been pulling at it so much, is ripped and looks more like a squishy green Pac Man) and his food. I do think Charlie is starting to learn how to, as you say, use his cognitive ability to cope and hope he’lls learn more as he grows, too.

  5. Sam is on Lexapro, which is an SSRI.

    We’re trying to avoid Risperdal.

    The one nice thing with the Lexapro is that once he was on it, after being extremely hyper for about 3 weeks, his sleeping schedule stabilized, so he can get a good night’s sleep and not be up half the night and fall asleep at school, which he had done some before then.

    (He’s also on Zyrtec for seasonal allergies. This being the Austin area, most of the year is allergy season for many people….)

  6. Charlie’s taken Zyrtex as the final step in doing away with some nasty bug, when over the counter medications had not worked. I was hoping not to have to start Charlie on Risperdal abd that’s why we started with the Zoloft, but things go to a point when we had to try the Risperdal, and it has helped, in Charlie’s case.

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