Autisms drug problem part-2
Lauren Gravitz
Poison pills:
As a pre-teen, Ben had many struggles typical of a child with autism: social anxiety, difficulty fitting in with his peers, mild depression, fits of intense anger, and a tendency to be both inattentive and disruptive in class. When he was 12, a school assessment found that he had sensory processing issues and dysgraphia difficulty with handwriting but not autism. At his mothers request, his doctor tried an antidepressant. It didnt help. It did, however, give him headaches. So did the next antidepressant, and the one after that. The side effects werent worth it, so Ben got a reprieve, at least for a little while.
Two years later, when he was 16 and having a particularly difficult time in school and at home, his mother insisted he try medication again. Their new family doctor prescribed an antidepressant that had just been introduced, an SSRI called citalopram (Celexa), with instructions that Ben and his mother follow up with a specialist. But life that year was too chaotic for a follow-up, and Ben stayed on citalopram.
Over the next year, school got progressively worse. Ben was increasingly bullied by his peers and increasingly more likely to respond with aggression, so his mother finally took him to a therapist. The therapist diagnosed Ben with bipolar disorder and sent him to a psychiatrist with directions to add valproic acid (Depakote) to the medication mix. Ben recalls that the psychiatrist asked a few questions, then simply handed him a scrip for the two drugs the therapist had requested. Bens autism remained unrecognized.
When new symptoms
pop up, the
temptation to switch
medications can be hard
to resist,
especially because
a complex
prescription history can condition
families to look to drugs first. But sometimes the solution is far simpler
Thats when things changed pretty dramatically, Ben says. He gained 50 pounds. He couldnt focus during class. He got in shouting matches at school and at home, and his anxiety spiked. My behavior got much more aggressive and erratic, he says. Hed wake up, terrified, in the middle of the night and just pace in circles around the room. I dont think it would have escalated as much as it did if I hadnt been medicated, he says. He got into wrestling matches with his father. Id be broken down and sobbing and desperate, and punch a hole in the wall.
Five medications and five clinicians later, Ben was still lethargic, irritable, angry and having a difficult time focusing.
Nailing down the right drug combination is particularly difficult when theres little to no continuity of care. In Bens case, not only was he misdiagnosed, but his family moved twice. On top of that, his therapist and prescribing psychiatrist werent communicating about his diagnosis and treatment. In other cases, people may not have access to doctors with expertise in autism. Some people switch doctors in the hopes of finding one with an approach they like, or when their insurance coverage changes. They may see one physician who provides a 30-day prescription along with instructions to find a clinician to manage their care. But they may then move on to another doctor who provides a different drug with similar instructions. The medications add up because there is no centralized person, says Shafali Jeste, a pediatric neurologist at the University of California, Los Angeles. I see it in Los Angeles all the time.
Prescription numbers can balloon as children pass through adolescence and into adulthood.
People get on the medications and tend to stay on [them] for long periods of time without ever really attempting to determine whether its still needed, says David Posey, a psychiatrist in Indianapolis, Indiana. The standard recommendation is to reassess drugs yearly, to evaluate whether a lower dose might work but that can be difficult to do, he says. Families are reluctant to take away a medication thats been really helpful.
Jeste says that people often arrive in her clinic with a long list of medications. But with no electronic health records or a complete medical history, she and her colleagues are left trying to guess why each medication was prescribed, what it was originally intended to do, and whether its helping. Then, working one drug at a time, they gradually lower the dosages. Ben wasnt lucky enough to find that kind of clinician. By his final year of high school, he was falling asleep in class and felt so debilitated that he dropped out. At the same time, my parents are getting divorced, Ben says, recalling that period. Theres all this chaos happening, and I lose all my supports, I lose all my routine, and I start living out of my car.
He began smoking marijuana, which he says provided him with an amped-up effect in combination with the SSRI. But in some ways it also helped him function. It was more effective than the medications at helping me be more social, he says. Ben says marijuana helped him finally recognize the rise-and-fall pattern of drugs effects, and that his psychiatric medications were affecting his moods similarly, albeit more slowly. I got the idea that maybe some of the cycles I was feeling on a regular basis coincided with the way I was taking my prescribed medications, he says.
At 21, he decided to wean himself off all drugs, both prescription and recreational. Later that year, he was diagnosed with autism. Now, when he feels the anger rise in him, he says, he steps back and breathes. No more holes in the wall. He runs six days a week, which helps him feel calm, focused and clear-headed. His autism may have prompted his initial moodiness and aggression, but he says it was the medications that sent him into a tailspin.
The remedy:
Taking multiple prescriptions isnt always a bad thing. For children whose lives are severely disrupted, or who pose a danger to themselves or others, they may be the only solution.
Phoenix was one of those children. He was a little tornado, his mother says. One day in early 2007, his daycare called his mother to pick him up early because he was being disruptive, knocking over chairs and tables for no discernable reason. He ran away twice that afternoon once letting himself out of the car on the way home, and later climbing out his bedroom window. A police patrol found him on the median strip of a busy four-lane thoroughfare, where he had crossed two lanes of traffic. He was just 4.
Phoenixs mother Sally says he was a complicated little guy from the start. When his moods swung toward anger, he would lash out and try to hurt his older brother, who also has autism. He had ungodly strength, she says. In order to keep both boys safe, she knew she had to help him get his anger under control.
His doctor tried him on risperidone, then soon added added guanfacine and Adderall. But his aggression was still out of control. Sally says that every morning when she and her husband woke up, they would look at each other and say, I wonder what mood Phoenix is going to be in? And then, she says, Id get a knot in my stomach. It was clear that his medications needed adjusting, but dealing with that at home was more than his family could take. They admitted Phoenix to a hospital for the first time when he was 6.
By 2009, his doctors office had already switched psychiatrists twice. The new psychiatrist swapped Adderall out for lisdexamfetamine (Vyvanse). Then, when a blood test showed Phoenix was at an elevated risk for developing breasts a serious but rare side effect of risperidone known as gynecomastia the psychiatrist switched risperidone for quetiapine (Seroquel). It was a disaster, Sally says. Phoenix climbed out of bedroom windows, repeatedly stood up and walked out of his classroom, and attacked his brother unprovoked. None of the combinations eased his aggression or violent mood swings. One day, when he was 7, Phoenix threatened to kill his brother and his brothers friend because they wouldnt play with him. He threw a brick at them and chased them with a metal pipe.
The incident shook his family, and ended with another hospital admittance and new combinations of medications. His doctors replaced quetiapine with another antipsychotic, ziprasidone (Geodon), and kept him on valproic acid and guanfacine. Because Phoenixs brother, Mac, had been having success with the ADHD medication atomoxetine (Strattera), the hospital staff replaced lisdexamfetamine with atomoxetine.
Phoenix has been in and out of four different residential programs since then, has been hospitalized six times, and has tried a dozen or more medications, as many as four at a time.
The hospitalizations helped him wean off some medications and onto others that, at least temporarily, appeared to control his mood swings. But every time he left, the medication combinations slowly lost their potency, and he reverted to aggressive acts, mostly against his brother.
The first two residential programs were even less helpful. They created stability and structure: every day the same, every routine consistent and reliable. But the programs werent able to adjust his prescriptions as a hospital could. And when he came home, without the rigid routine of a live-in facility, he eventually started attacking his brother. I have holes in the bedroom doors from Phoenix trying to get to Mac, Sally says.
The second two programs were tailored to children with autism, and there Phoenix found the help he so badly needed. He was 12 when he started the third program and began taking a new antipsychotic most often prescribed for bipolar disorder, called olanzapine (Zyprexa).
And it was during the fourth residential program, when he was 13, that his doctors hit on what seemed to be a winning combination: olanzapine, valproic acid, guanfacine and atomoxetine. He was spending his weekends at home, but during the week he lived at a nearby residential facility where he could get the behavioral and community support he needed.
It was the first time he came home that, for a little bit of time, we really enjoyed his company; wed get glimpses of the real Phoenix in there, Sally says.
But a common side effect of Zyprexa is weight gain; the drug made Phoenix ravenous. On weekends when he was home, he could empty out my freezer at 3 in the morning, she says. Over the course of a year, the previously skinny child gained nearly 100 pounds. He looked like hed pop if you stuck a pin in him, says his mother.
Hed just be sitting there and his breathing would be labored. We had to get him off the Zyprexa. His doctor weaned him off Zyprexa and on to one antipsychotic that didnt work, and then another, quetiapine (Seroquel), that did.
Today Phoenix, 15, is on a four-drug cocktail and has remained stable for more than a year. His mood has remained stable, too. The aggression is gone, Sally says. His sense of humor has emerged, and he can sit still and watch a television program with his family or discuss something he sees on the news.
He has also developed a sense of empathy. Now, when a child at his school acts up in a way that he might have done in the past, he tells his brother, I owe you and Mom an apology, Sally says. Hes seen it through other peoples eyes, and its been a real eye-opener for him. For the most part, she says, hes happy. Out of the clear-blue sky, hell be in the kitchen and say, You know, Mom, I love you. Hed never said that in his life.
When new symptoms pop up, the temptation to switch medications can be hard to resist, especially because a complex prescription history can condition families to look to drugs first. But sometimes the solution is far simpler.
This past fall, Phoenix began falling asleep in class in the middle of the day. One of his earlier medications had had a similar effect making him so drowsy he once fell asleep in the middle of lunch at a busy restaurant so Sally was concerned. Was he falling asleep because he was crashing as a stimulant wore off? Or because a medication was suddenly causing a new side effect? The last thing she wanted to do was to tweak his finely tuned regimen.
Before taking him in for an assessment, she did a bit of sleuthing. I bought a Disney Circle, she says. Best $100 I ever spent in my life. The device monitors, and sets limits on, their home Wi-Fi network. It revealed that Phoenix had been getting up in the middle of the night and playing with electronics for hours. She set it to restrict overnight internet access and suddenly Phoenix was staying awake through school again.
Its not uncommon for kids to be on more than one medication. The question is: Is it people fumbling around to try a little of this and a little of that and see if it works or is it rational? asks Lawrence Scahill, director of clinical trials at the Marcus Autism Center of Emory University in Atlanta, Georgia. When medication decisions are made judiciously and each one has a clear target, drug combinations can have a clear benefit.
Under those circumstances, Scahill says, I would say that there is such a thing as rational polypharmacy.
Phoenixs path, as winding as it has been, has brought him to a good place. He is an example of how polypharmacy, when attempted with attention, care and persistence, can provide people with autism the opportunity to thrive.
But finding and maintaining the right treatment regimen is still up to each physician, each family, each individual.
This is an experiment thats going on, but its a completely uncontrolled experiment, Scahill says. Ben, Phoenix, Connor: Each of them confronted different challenges and had to figure his own way through, because prescribing is still very much an art, not a science. Clear rules will be a long time coming, if they arrive at all. (Concluded)
Source: Scientific American
