Increased Use of Antipsychotics in Children (and Young Children) Criticized

More than 389,000 children and teenagers were treated with Risperdal—an atypical antipsychotic—last year. And, 240,000 of them were 12 years old or younger, the November 18th New York Times reports. A panel of federal drug experts stated that medications like Risperdal are ” being used far too cavalierly in children” and that “federal drug regulators must do more to warn doctors of their substantial risks.”

Risperdal has been approved for treating irritability in autistic children. The New York Times notes that “in many cases, the drug was prescribed to treat attention deficit disorders,” for which it has not been approved for:

The meeting on Tuesday was scheduled to be a routine review of the pediatric safety of Risperdal and Zyprexa, popular antipsychotic medicines made, respectively, by Johnson & Johnson and Eli Lilly & Company. Food and Drug Administration officials proposed that the committee endorse the agency’s routine monitoring of the safety of the medicines in children and support its previous efforts to highlight the drugs’ risks.

But committee members unanimously rejected the agency’s proposals, saying that far more needed to be done to discourage the medicines’ growing use in children, particularly to treat conditions for which the medicines have not been approved.

“The data show there is a substantial amount of prescribing for attention deficit disorder, and I wonder if we have given enough weight to the adverse-event profile of the drug in light of this,” Dr. Daniel Notterman, a senior health policy analyst at Princeton University and a panel member, said when speaking about Risperdal.

The side effects of Risperdal are serious and include substantial weight gain, metabolic disorders, tardive dyskinesia and dystonia.

My son’s among those 389,000 children, and among those 240,000 children aged 12 and younger, who are taking Risperdal. He’s been taking Risperdal since the spring of 2004, at a time when his self-injurious behavior—head-banging—-was severe and he was on the verge of being removed from a public school special education classroom to an out-of-district placement. This is a more detailed account of what Charlie’s experience on Risperdal has been. The most difficult side effect has been the substantial increase in his appetite and the resulting wet gain; we’ve sought to address this by watching Charlie’s diet (and minimizing junk food, in particular) and by making sure he gets a lot of exercise.

I really didn’t want to put Charlie on medication. And truly, it’s not the “answer” in and of itself for addressing aggressive or “problem behaviors.” Even as he wrote the first prescription for Risperdal for Charlie, our pediatric neurologist told us sternly that Charlie also had to have behavior therapy; that we had to keep his education in mind first.

Charlie was 7 1/2 when he started taking Risperdal — since then, mostly via this post, I’ve heard of younger and younger children being prescribed Risperdal. The federal panel’s concern seems very much justified. The New York Times notes a few more reasons why, including the rise of the diagnosis of bipolar disorder in children; however:

The leading advocate for the bipolar diagnosis is Dr. Joseph Biederman, a child psychiatrist at Harvard University whose work is under a cloud after a Congressional investigation revealed that he had failed to report to his university at least $1.4 million in outside income from the makers of antipsychotic medicines.

In the past year, Risperdal prescriptions to patients 17 and younger increased 10 percent, while prescriptions among adults declined 5 percent. Most of the pediatric prescriptions were written by psychiatrists.

From 1993 through the first three months of 2008, 1,207 children given Risperdal suffered serious problems, including 31 who died. Among the deaths was a 9-year-old with attention deficit problems who suffered a fatal stroke 12 days after starting therapy with Risperdal.

At least 11 of the deaths were children whose treatment with Risperdal was unapproved by the F.D.A. Once the agency approves a medicine for a particular condition, doctors are free to prescribe it for other problems.

Panel members said they had for years been concerned about the effects of Risperdal and similar medicines, but F.D.A. officials said no studies had been done to test the drugs’ long-term safety.

No studies done to test the drugs’ long-term safety: It’s a phrase that keeps ringing in my ears; in any parents’ ears. Charlie can’t tell us how he feels taking the medications so it’s up to us and Charlie’s teachers to watch and observe, to adjust and alter. And to know that, medications can help, but they’re just on part of the picture, and a part that needs to be kept under very careful scrutiny.

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    • David N. Andrews M. Ed. (Distinction)

      this post exemplifies exactly why i think that medicine should get out (and stay the fuck out) or the autism field.

      essentially, it has nothing to offer but risk.

    • Cristina

      Giving a antipsych to a child who already has a neurological disorder just can’t be good.

    • My Autism Insights

      So glad you posted this. I’ve been avoiding going back to Gus’s specialist because he wanted to put Gus on either Risperdal or Abilfy since the Strattera did not work, and he felt stimulants would also not be a good option to deal with Gus’s ADHD symptoms. When I mention it to teachers or counselors, the response is, “Lots of kids are on these medications with no problems.” Boggles my mind, especially since the drugs are not meant to treat ADHD.

    • Catana

      I can understand the use of antipsychotics in extreme cases like Charlie’s, but I wonder if the continued use masks developmental changes that would make it unnecessary any longer, or at least make cutting it down feasible. Is there any way to monitor for this? Surely, there’s been neurological maturation in four and a half years that might have modified the original problem?

    • Niksmom

      You are familiar with Nik’s history of reactions to medications (and he’s not yet 5); granted, they were for seizures. None the less, I think there’s a tremendous danger in doctors simply medicating (and with drugs not approved for use in young children or for off-label use) without taking the time and energy to really esplore whether there is some underlying physiological cause for behaviors which could be addressed through something far less risky —sensory integration work, education and behavior supports, etc.

      In our case, several docs wanted to put Nik on Risperdal to help manage the restlessness, the head banging, the apparent headaches and hyperactivity; nearly all of that was actually *caused* by his seizure meds.

      I think too many doctors discount the possibilities that young children can have very serious side effects from even the most widely accepted uses of any and all meds which affect the central nervous system.

    • caroline L.

      There is a connection between epilepsy a.k.a. seizure disorders, and ADHD, pervasive development disorders, bi-polar, etc.

      epilepsy can never be ruled out, in our experience.

      I hope that the medical community will explore this connection more.

      Having said that, better treatments need to be developed.

    • Laura

      A neurologist we saw earlier in the year when my daughter was not quite 3.5 years old, suggested several different anti-psychotic drugs to address the anxiety my daughter was experiencing supposedly causing her to fall ill with dehydration, vomiting, fevers, etc. due to her autism.

      He left the decision, after giving us very little information on the drugs, up to us.

      We decided to wait, as her behavior, while challenging and frustrating and puzzling didn’t seem to warrant drugs at this point. It just didn’t seem like the answer when we hadn’t yet had all the answers or therapies tried.

      We know now that she has a mitochondrial disease that was/is causing all the medical challenges that the stress from autism and other factors created. Giving her these drugs wouldn’t have done anything to help her, and quite likely might have done quite a bit to harm her.

      I don’t believe the drugs are bad in and of themselves, but I do think each situation needs to be carefully weighed to see if the medication is warranted. I can’t help but think it’s the first solution medical doctors lean toward when dealing with behavioral challenges or differences and that seems terribly wrong or lazy. Or both.

    • Marla

      Niks mom raises a very good point. It can be very difficult to tell what is from what.

      At the same time I am very thankful for seroquel, the med. m was switched too when Risperdal stopped working for aggressive behaviors. Without that med. I don’t think she would be living very well and it would probably me impossible for me to care for her.

    • Regan

      “The Medicated Child”
      Frontline, PBS
      January 8, 2008

      Right sidebar of the site:
      “Medicating Kids”
      2001 report on ADHD

      FWIW, from what I know about the research, medications in themselves are not meant to be the end all and be all, and that more parsimonious environmental and behavioral approaches, applied correctly, should be tried first, and if pharmacologic intervention is appropriate and necessary as determined by assessment, that those types of supports still be paired with pharmacologic intervention. See Russell Barkley, Stephen Ray Flora, Johnny Matson, etc.

      My oldest daughter’s experience with psychological pharmacology made her problems worse, my younger autistic daughter has never been on any such medications, although we were encouraged to do so preemptively; fortunately her issues were amenable to environmental intervention and growing up, my experience with such medication has been mixed.

      It is the off-label prescription, combinations of multiple prescriptions, and the unknown nature of the long term effects of use in pediatrics that make me feel cautious.

    • Kristina Chew, PhD

      Really, I’ve been shocked at the mention of giving Risperdal to young children—-3 years and who knows how young. It’s something of the “bandaid” approach”—-find some “magic” entity and give it to a child and “everything” will be fixed. It always surprises me that a practitioner would suggest a medication (or a nutritional supplement, for that matter) as the first way to address behavior issues, or not to emphasize that these have to be paired with teaching. And in especially in a young child.

    • Niksmom

      I quite agree with you, Kristina. We used to take Nik to someone who was reputed to be THE best pediatric neurologist in the state, some said the tri-state area. When Nik was 3 1/2, this doc wanted to put him on Risperdal b/c he said all of Nik’s awful behaviors (which we now know were side effects!) were “just what kids with autism do.” We left and never looked back. Yet, I wonder how many other desperate families didn’t ahve the courage to keep looking for alternatives and information and whose children now take medications they *may* not need to be taking and which can mask/dull so much.

      I do not deny that there are many people for whom medication *is* the answer; it just shouldn’t be the first and only one sought.

    • Regan

      Let me share a true story from the PT conference I attended recently–this was for an older student, but I felt illustrated why leaping to medication might not be the most appropriate solution or necessarily the first solution, even if it is a popular solution.
      A female student had incidents of tantrumming outbursts and self-injury. The first request by school personnel was to treat these by prescription of an anti-psychotic or another medication. A behavior modification plan was also considered. An FBA was done but, based on the immediate situation, was somewhat inconclusive. When the data was more closely examined on a day of the week/time basis, a day of the week rhythm was discovered, with the common factor turning out to be an afterschool trip to a particular program…where this student was being raped by a member of the staff on a weekly basis.

      Would medication or chemical restraint of the student have been the most useful solution?

      So this is kind of a sidebar, and probably an exceptional example, but I felt it was illustrative of the depth of examination that might be ethically necessary rather than necessarily assuming that the problem totally lies within the person or necessarily assuming that it is physiologically driven, even if that seems true from appearances. This is not discounting real issues such as seizures, which can cause damage and be potentially life-threatening if allowed to proceed unchecked.

      The caveat is to proceed with caution.

    • Regan

      When I was reading the Frontline site, one thing that I thought was interesting in the rise of bipolar diagnoses in young children is that at this time it is characterized as a particularly “American” phenomenon and that the rest of the world does not seem to demonstrate the same rates that the U.S. does.

      Various explanations were floated–the rest of the world is really at the same rates, but they need to catch up in diagnostic ability, that there is something particular to the US genetic melting pot that lends itself to bipolar syndrome in the populace, that it was being missed diagnostically in young children in the past, that the nature of bipolar syndrome itself is changing with a reduction in the number of diagnoses in older people and an increase in younger.

      I’m kind of wondering how these statistics and explanations are currently cutting across the different categories of the DSM-IV?

    • Kristina Chew, PhD

      still taking a deep breath after reading that true story.

      and an FBA and consideration of teaching needs to be the first thing considered—-not medication.

    • David N. Andrews M. Ed. (Distinction)

      Christina: Giving a antipsych to a child who already has a neurological disorder just can’t be good.

      Trust me, it isn’t.

    • Ed

      At the time when David was at his worst, they wanted to put him on welbutrin. I would not do it because while his behaviors were disruptive at times they never were dangerous. We had to find our own way.

    • Regan

      Placebo Works Equally Well As Antipsychotics For Aggression In The Intellectually Disabled
      January 2008
      “A new UK study found that placebo was just as effective at treating aggressive challenging behaviour in intellectually disabled patients as antipsychotic drugs and the researchers recommended antipsychotics no longer be regarded as an acceptable routine treatment for this group…”

      A swallow does not make a summer, but findings such as this suggest that there might not be as much known about administration of antipsychotic drugs as is sometimes put forth, and that routine administration might not be best practice.

      Paper: Risperidone, haloperidol, and placebo in the treatment of aggressive challenging behaviour in patients with intellectual disability: a randomised controlled trial.”
      Peter Tyrer, Patricia C Oliver-Africano, Zed Ahmed, Nick Bouras, Sherva Cooray, Shoumitro Deb, Declan Murphy, Monica Hare, Michael Meade, Ben Reece, Kofi Kramo, Sabyasachi Bhaumik, David Harley, Adrienne Regan, David Thomas, Bharti Rao, Bernard North, Joseph Eliahoo, Shamshad Karatela, Anju Soni, Mike Crawford.
      The Lancet, Vol. 371, Issue 9606, 5 January 2008, Pages 57-63.

    • Regan

      Doctors Say Medication Is Overused in Dementia
      June 24, 2008 NYTimes
      Researchers estimate that about a third of all nursing home patients have been given antipsychotic drugs.
      The increases continue despite a drumbeat of bad publicity. A 2006 study of Alzheimer’s patients found that for most patients, antipsychotics provided no significant improvement over placebos in treating aggression and delusions…The agency
      [FDA] has not approved marketing of these drugs for older people with dementia, but they are commonly prescribed to these patients “off label…Nevertheless, many doctors say misuse of the drugs is widespread. “These antipsychotics can be overused and abused,” said Dr. Johnny Matson, a professor of psychology at Louisiana State University. “And there’s a lot of abuse going on in a lot of these places.”…

    • Tara

      I don’t know what to say. One one hand, it seems that antipsychotics are being given out as candy for whole range of suspicious and ‘off label’ uses. On the other hand, good chunk of the people who really and truly need them are either not treated properly or have trouble getting their medication covered by insurance.

      I know an elderly gentleman whose wife specifically requires injectable Risperdal treatment for her bipolar disorder due to a history of treatment non-compliance. He went to hell and back trying to get injectable form covered by insurance and they still owe around $15,000 since insurance company would not retroactively reimburse them for treatment she got before their approval.

    • Kristina Chew, PhD

      Judith Warner writes about the increased use of Risperdal and also about the revisions in the DSM-V in Tough Choices for Tough Children.

    • Ecki

      Well, my daughter is 4 and has recently started Risperdal. Actually, her doc wanted to start her a year ago at age 3. I should point out that she has NO “behaviors” so it wasn’t a necessity. But we did a whole year of ABA and we just can’t get her motivated or to pay attention or engage. And without those basic building blocks, she can’t LEARN. So, with much trepidation, we started. We have seen some improvement, while we hadn’t seen much after a year of intensive ABA. We’re still doing the ABA and the data shows a marked improvement when we started the Risperdal. I’m still debating if all the risk and side effects (like the nonstop eating!) is worth it. And the developmental pediatrician’s answer to the nonstop eating is to add a stimulant. Great, another drug. I’m very conflicted about the whole thing, but I can’t just let my kid go through life without the ability to learn anything. And we’ve tried just about every behavioral and educational intervention out there. She’s just “tough to reach and tough to teach”.

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    • anthony rhatigan

      Peter Breggin summed it up when he said that ….In a rational society these drugs(antipsychotics) would be outlawed. Peter Breggin is a reform psychiatrist who gives it to you straight and isn’t afraid to speak out against the prevailing madness in psychiatry today. In my view we have done well to rid ourselves of surgical lobotomies and the once prevalent practice of shock treatment but i would humbly suggest that “anti psychotics” should be the next to go. I”ve been drugged over many years for(in order) mild schizophrenia,schizophrenia,paranoid schizophrenia and now bipolar affective disorder. Wonder what’s next………Psychopath? Watch this space.