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How Science Screwed My Kids
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When a major study said kids with ADHD could benefit from drugs, we gave my son Ritalin. Then he became manic and delusional—and now the study’s researchers say they might have been wrong all along.
Jason raced around from dawn to midnight, bouncing from one activity to another, throwing prolonged tantrums at the slightest frustration. The day he picked up a butcher’s knife and threatened to hurt himself was the day my husband and I decided to call the pediatrician.
“Not normal,” she said. “Take him to a child psychiatrist.” We did, and the psychiatrist mistakenly concluded that there was nothing wrong that five or six family-therapy sessions couldn’t fix.
It took more than 20 medication trials, a dozen hospitalizations, and four full-time special schools before Jason learned to manage his emotions and regulate his behavior.
The tantrums became more frequent and longer. They could be triggered by the oddest things, like an uncomfortable sock, or a request to polish off a math assignment by adding 8 plus 9. A brilliant athlete, after a hat trick on the soccer field that made every boy in town want to be his best friend, Jason would come home and start hurling furniture at us. We found new child psychiatrists and added a psychologist. “Let’s rule out ADHD,” they advised, and prescribed Ritalin.
Six years younger than Jason, our daughter Rebecca was darling and well-behaved. Her private-school classmates were reading Dr. Seuss in kindergarten. But late in the first grade, Rebecca still couldn’t decode Green Eggs and Ham. If you taught her to read a new word, she would find it unrecognizable three minutes later. Her mirror writing was exquisite and unintended: MOM UOY EVOL I.
Rebecca liked to stare dreamily into space, make giant balls from rubber bands, and repetitively sharpen her pencil collection. The pressure of first-grade homework made her throw fits. Yet adults delighted in her poised, emotionally insightful conversation. We took Rebecca to a neuropsychologist, who, after three days of testing, diagnosed superior intelligence, dyslexia, and ADHD. Once again, our psychiatrist prescribed Ritalin. She assured us that prescription stimulates—Ritalin, Concerta, Adderall—can help variably attentive children like Rebecca focus, much as they help some overactive children like Jason calm down.
It was perhaps no accident that my family first confronted the “to Ritalin or not to Ritalin” question in 1999. That was the very year pediatric psychiatry went giddy with excitement over the initial findings of the National Institute of Mental Health Multimodal Treatment Study of Children with ADHD, better known as the MTA.
The MTA was a study to listen to. It was an ambitious, multiyear longitudinal study of 579 children diagnosed with ADHD, conducted by a team of first-class researchers and funded by the federal government. It came at a time when doctors were being criticized for blindly prescribing powerful adult psych meds to children on a trial-and-error basis. And its preliminary results, published less than one year into the study, gave big-city psychiatrists and educated parents the confidence to use stimulants to address children’s behavior. The MTA’s seminal 1999 finding was that children diagnosed with ADHD fared better with medication or with a combination of medication and therapy, than with therapy and community care alone.
So, in 1999 and again in 2005, I did what I thought I really ought to do for my bright, talented kids who upended family life and underachieved in school. On the promise and gospel of the MTA, I gave them Ritalin.
Jason took a low, starter dose of the drug for about a week. He quickly catapulted from merely hyperactive and tantrum-prone to manic and delusional. To end the mania, doctors prescribed toxic cocktails of anticonvulsants, antidepressants, and antipsychotics. We later learned that one of the risks of giving stimulants to children is that the medications may unmask an undiagnosed mood disorder. This is what seems to have happened to Jason, who was diagnosed with bipolar disorder based on his symptoms and reaction to Ritalin. It took more than 20 medication trials, a dozen hospitalizations, and four full-time special schools before Jason learned to manage his emotions and regulate his behavior.
Nevertheless, my husband and I were so convinced by the MTA study’s “proven” benefits of stimulants—and the uniqueness of each child—that we gave Ritalin to our daughter, even after our son’s experience with the drug had been a disaster. Rebecca got cranky on the first trial of stimulants and showed no improvement in school, so we took her off Ritalin after about a month. But she did a better job paying attention in school and received higher standardized-test scores when we gave her a different stimulant called Concerta a few years later. The stimulants also seemed to make her less anxious and less emotionally volatile.
Because of the early findings of the MTA study, my family has spent the past decade on an often frightening odyssey of stimulants like Ritalin and Concerta. Which is why last week’s news from the ongoing MTA study was alarming. The study’s researchers have now announced that, in the long term, drugs don’t work a lick better for treating ADHD than behavioral therapy and the usual community supports. And there are accusations that the researchers sought to suppress these conclusions so as not to be embarrassed by the more drug-positive results they released in 1999.
Published online this month in the Journal of the American Academy of Child and Adolescent Psychiatry, the latest data crunching from the MTA shows no long-term benefits to children of stimulant therapy after eight years. A 24-month MTA follow-up study had demonstrated some medication benefits, but neither a 36-month MTA follow-up nor the recently published eight-year follow-up showed significant advantages to medication-inclusive interventions over medication-exclusive interventions. Even with meds, the study’s new findings indicate, children with ADHD are more likely than other children to develop into adolescents with problems like delinquency (27.1 percent vs. 7.4 percent) and substance abuse (17.4 percent vs. 7.8 percent).
It’s enough to make you crazy. Once considered proof-positive of the benefits of medication, the MTA study now offers grounds for doubt about medication for ADHD. If it’s long-term benefits families are looking for, science is no longer clearly on the side of using drugs like Ritalin, Concerta, or Adderall.
Now that the proven long-term benefits of traditional ADHD drugs are nil, parents have to aggressively reassess the risks of giving their children medications for their short-term advantages. Many families are prepared to deal with mild side effects like dry mouth, diminished appetite, and benign heart palpitations. But ADHD medications are believed to have more permanent effects as well, stunting some children’s growth and making other children sick.
Should parents who have medicated their children based on the results of federally funded research be angry about the latest findings? My husband and I find we are not angry. Some MTA researchers (accused of being “anti-medication”) are charging colleagues (accused of being “pro-medication”) with having knowingly understated evidence that stimulant medications do little good after two years of treatment. Yet I don’t see any clear evidence of significant misconduct in reporting research findings. The real story here seems to be one about clinicians and consumers eagerly latching onto the early results of an incomplete multiyear study.
Of course, Big Pharma was only too happy to latch onto the early results as well. It’s hard to overlook the fact that after the 1999 MTA results were reported, the drug companies went hog wild, mass-distributing copies of the federally funded study to physicians nationwide, hoping to expand the market for stimulants. It worked: The ADHD drug market, which now includes both stimulant and non-stimulant preparations for children and adults, is expected to reach $3.3 billion in annual sales by 2010.
The relationship between drug companies and child psychiatry had parents fuming even before last week’s MTA announcement. A leading child psychiatrist and ADHD researcher, Harvard’s Dr. Joseph Biederman, has published studies purporting to show that aggressive intervention in children with ADHD can “prevent” substance abuse, and that taking ADHD medication does not lead to illegal drug abuse. But should parents be willing to rely on Biederman’s research? The doctor has yet to explain how a supposedly objective and independent scientist could promise Johnson & Johnson in a PowerPoint presentation that his "planned studies of [its] medicines in children would yield results benefiting the company." One of the most influential child psychiatrists in the world, Beiderman is under investigation for violating federal law by concealing $1.6 million in payments and grants from drug companies. I do get angry about Biederman since, backed by drug-company dollars, he has pushed the use of antipsychotic medication in children. Based on his research, Jason was prescribed medications that made him eat compulsively, drool, and slur his speech, while putting him at risk of a non-reversible neurological tic disorder known as tardive dyskinesia.
It remains to be seen if the MTA study will reshape child psychiatry. Children have not been well served by the recent emphasis of drug therapies over other interventions. Most psychiatrists manage medications and leave behavioral therapy to others. With managed care in full swing, insurance companies are not eager to pay for time-consuming, $200-an-hour behavioral talk therapy. Parents sold on the idea of medication-only interventions were relieved of the need to miss work and take kids out of school for frequent and humiliating family-therapy sessions. But if therapy works as well as medications and with fewer side effects, parents may need to rethink priorities. My own faith in medications has been tested, and I am more skeptical and cautious than I was a decade ago. Rebecca still takes stimulants, but Jason, I am happy to report, is thriving medication-free.
Grace Poole is a pseudonym.
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"We later learned that one of the risks of giving stimulants to children is that the medications may unmask an undiagnosed mood disorder..."
how was Ritalin a disaster with your son? If it unmasked a hidden bipolar disorder--that's a good thing. Now that you know about it you can treat it. If it CAUSED a bipolar disorder--that's another issue. But according to you, it unmasked it allowed you to treat it while he was still young. Sounds like a success story. Accordingly I don't understand how the chance of Ritalin uncovering one of hidden behavioral disorders in children is a risk...sounds like benefit. Catch the problem while they are young.
Let's see, it's NIMH's fault, it's the psychiatrists' fault, it's big pharm's fault. Maybe you have an eensy-weensy bit of responsibility? Not all your fault, but some?
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What I wonder is what's going to become of all the kids in poverty who have been put on Ritalin and other drugs to address ADHD when they turn 18 and suddenly can't get their medication paid for? Many, if not most, of these kids have not been taught strategies for coping or controlling their behavior without meds.
There is something wrong with us as a nation that we expect -- and accept -- that for every problem there is a pill that will resolve it.
I don't trust these types of drugs for my children. That is because it is a simple manner of understanding how clinical trials work. How could they possibly know the long term effects of these drugs? They would have to wait until all the test subjects grew up. This would postpone any drugs for children as only applicable during the next generation. That's not what happens, so I'm not surprised to see it stunts growth/etc as an afterthought.
I'm fascinated by the daughter's case because nothing described in the story sounded that out of the ordinary. Many kids don't start learning to read until at least the first grade. Some kids enter kindergarten already reading because of how their parents or preschool structured their early development, or in some case the natural cycle of their individual development. But primary school educators will tell you it all equalizes out over time, that the early readers often don't comprehend what they are reading very well and that late readers usually catch up and reach their individual potentials within a few years.
Similarly, I am curious how a neurologist could diagnose dyslexia in a 6-year-old. Again, it is very common for some kids to reverse letters and words well beyond 6. Our oldest son didn't stop getting letters backwards until the end of the 3rd grade. We inquired about dyslexia annually with his pediatrician and teachers (especially since I only found out in college that I had had previously undiagnosed dyslexia) and repeatedly were assured they see reversals all the time in kids his age and not to worry. Sure enough it went away on its own. One of our other kids had the kind of mood swings and attention issued described of the daughter too, and it also corrected itself with time and patience but no medication or specialists.
The parent in the story sounds diligent and appropriately concerned so this is not specifically directed at her, but I wonder how much of the popularity of medicated "fixes" stems from parents inappropriate need to perceive their kids judged as normal or exceptional at too early an age. There is a reason that grades in primary school don't count in judging latter achievement. Kids at that age develop at radically different rates and sequences. It is impossible and inappropriate to compare them to their peers at this age and any number of development deficiencies are actually normal and would work themselves out. A lot of studies have demonstrated the most effective approach is just to expose your kids to lots of stimulus and let them develop their own way at their own pace and that the best intervention for developmental issues is patience.
I applaud the writer's courage for sharing her family's story. My nephew has recently been diagnosed with ADHD. Once we called them hyperactive. Before that - precocious? I'm not convinced that we shouldn't just call them 'little boys.' My brother and sister-in-law refused the drug treatment - and I thing that's best, at this point. Drugs should be a LAST resort with children, in my opinion. Behavioral and (often overlooked) nutritional therapies should be tried first.
There was a big study in Europe that indicated that removing artificial flavors and colors and preservatives was helpful for kids with ADHD. The Feingold diet is pretty effective, but no one pays for expensive clinical trials.
Actually, jbjnyc, you should check the facts. These issues have been studied.
Limited benefit has been found for some children with the Feingold diet. We've known that for a long time. And we've also known that it isn't a "cure" for most children with ADHD. Do you have a child with ADHD (actual ADHD and not behavior induced by food additives, which too many children consume at too high a level)? Try it yourself.
And that European study showed that artificial colors induced hyperactivity in some children. That's NOT the same thing as these additives causing ADHD.
FACTS MATTER.
Feingold. When his research was replicated, the findings wre interesting, as follows.
Instead of the food being the variable that changed the symptoms of the children it was a combination of the structure required to impose strict dietary requirements, and the increased attentiveness to the children.
Go figure.
And no, it neither cured nor attentuated their sumptoms two years later or ten.
I asked my father (a psychiatrist) to evaluate my young son for hyperactivity. My father said, "He is very active not hyperactive, there is a difference." Years later my son's 4th grade teacher told me he needed to be on medication because he fidgeted with his pencil during class.
"Is he banging it on the table?" I asked in confusion. "Well, no."
"Is he bothering the other children?" "Well, no."
"If you ask him a question about the subject you are teaching can he answer it?" "Well, yes."
I told her that she had better learn to live with it because I wasn't putting my son on medication because he "bugged" her.
How many kids were put on mind altering drugs because of idiots like her who just didn't like kids that fidgeted?
After all most parents don't have a psychiatrist in the family to rebut such foolishness. I noticed that the desire to drug kids faded as they got older and didn't have to be under constant supervision by an adult. Maybe we should just cut the kids some slack and sedate the babysitters.
By the way, my son is now an electrical engineer and engaged to be married in the fall. And he still fidgets.
Yes, well, I've known many arrogant psychiatrists who have ADHD or other brain disorders but don't know it -- and moreover, they would never acknowledge that their offspring have any such "flaws."
And somehow I suspect your are not accurately representing the teacher's perspective here.
Finally, having a college degree and being engaged to be married is not proof that your son still doesn't have ADHD -- if in fact he ever had it.
How many kids are put on medication because of teachers like that one?
VERY FEW. Read the research, dear, and you will find that in all but two small areas of the country (someplace in Utah and one county in Virginia, I think) AD/HD is under diagnosed and even more, it is undertreated.
Those are facts. What would cause a person such as yourself to make claims like yours that have no basis in fact? Is this what you learned in school? To call "facts" all the things you think are true?
BTW, I have a PhD in psychology and I have AD/HD. The two facts are unrelated. Oh, and I had to beg someone to prescribe medication for my child who was so desperate for self control she was trying to throw herself down the stairs at age 7 just to jar her brain loose from the knot it was in.
Those medications still work, too. When she takes them, which she does, because otherwise she would have no friends, according to her, and I have no doubt she is correct in that.
Try limiting sugar and no caffeine in your child's diet, you will be surprised.
My son has ADHD and is not taking a stimulant drug but does take Straterra. The difference in him is night and day. When he started school, we noticed that he really struggled with the basic skills he needed to master. And it wasn't really that so much as it was his manic behavior. He could not sit still, focus, remember or recall anything that he just did a minute sooner and he was easily side-tracked by the smallest slight or obstacle. Thankfully, with his medication and a herculean effort on our and his teacher's part, he has really turned things around for himself. It is wonderful to hear him say that he loves learning and that school is one of his favorite places.
We also started looking into diet changes, particularly food and color additives and organic choices. The research on the food angle has largely been suppressed (think about the impact to the food companies who develop and market foods for kids). I think if we look at this angle alone, we would see that ADD/ADHD really became an "epidemic" when processed and readily available foods became the main source of our food intake.
I grew up with ADD. I was a space cadet. Even today I have a hard time paying attention. I tried drug therapy to control it about six years ago, but all it did was drive my blood pressure up. My boss and my wife were forced to resort to the same treatment my mother used to control my ADD as a kid. What was it you ask? A quick smack to the back of the head and a hearty "Pay attention!" always does the trick.
I, too, had my child evaluated at my own personal expense, after several run-ins with teachers and principals. He was diagnosed ADHD and I was strongly advised to put him on medication. The psychiatrist I talked to said he would need meds for the rest of his life and that the meds would "calm him" in order to make the behavior therapies more effective.
I was also told that newer drugs have fewer side effects.
The evaluation was helpful in that it gave me a detailed profile of his strengths and weaknesses. I now have a better idea of the sorts of situations that cause him trouble and why. So this year, with the cooperation of his teacher, we re-worked some of her teaching methods and put him on an individual education plan. He's doing much, much better.
I wanted to see how better he could do without the medication. He's improved to grade level work, although working with him is a challenge. It takes a village to teach my child in school and I applaud all of these professionals who find time in their busy day and overcrowded classrooms to focus on my child.
I think we'll see a rise in ADHD diagnoses as class sizes get bigger and teachers get more frazzled. Also, in the county where I live, there's a huge emphasis on pushing higher level reading and math skills on younger students. "At grade level" becomes meaningless when they keep raising the bar higher for younger kids.
The key here is to find out what sort of cognitive issues your child struggles with. Then, you can research effective coping mechanisms on your own. There are very effective focusing strategies that make teaching kids with executive function, time management, and logic challenges.
Don't blame your child. Don't transfer your feelings of embarrassment on to him or her. Get him or her thoroughly evaluated. Rule out depression/bipolar/etc... Rule out allergies, vitamin deficiences, poisoning, etc... Then seek out as many behavioral strategies as you can. Get the teachers to help you and do as much as you can at home.
I hope this strategy works for you. Just remember that once your child enters the real world, he might not enjoy a "village" full of people who will keep him on task, etc. Also remember that he might not be able to access his full brain power without medication. He might, as he gets older, get increasingly frustrated with all these people around him telling him what to do and just might wish he could do it himself.
Yes, and I am glad things are working out so well for your son right now. I wonder, though, if he had the chance to try medication that was effective and adjusted correctly, whether he would prefer to live his life with, or without, them.
The trouble with postings like all of these is that so many people report on their own experience, or that of someone they know, and then extrapolate to the erroneous conclusion that things must be that way for everybody else.
Get this: in all the years of my kid's education, not once did any school or teacher wish to be helpful. And when we politely mentioned some things that were troubling to her, they did not believe it, because she held herself together all day long. I was amazed that I could believe they saw what they saw; and that they could/would not believe I saw what I did.
In spite of the effectiveness of medication for her and unimaginably high intelligence, she worked at a pace about one-half that of her peers, many with far less raw material between their ears. Her teachers told her, "It shouldn't take so long."
So finally, we said, "So long," to school. Not everything is as it seems
Sorry to hear about your experience but I have a few suggestions to help kids with ADHD. I used to be a high school teacher and had many kids who were hyperactive.
First, kids aren't getting the daily exercise they need, so as a result they've pent up energy that reflects itself as ADHD in the States (in Europe ADHD is rarely diagnosed and hyperactivity is considered a normal condition of adolescence). So get your child to exercise for 45 minutes BEFORE class to help his/her concentration.
Secondly, research is suggesting that a small, oral (eaten) dose of cannabis can help ADHD. No, I'm not advocating getting children stoned: the dose should be slightly above the homeopathic level.
I had ADD in school but survived just fine: I became a dreamer and these days I'm grateful to have my own vision.
As a elementary school teacher who left the field due, in much part, to the demands of parents of children with special needs, I have to say I always advocated not putting a child on medication, but working with that child on an individual basis. Many parents wanted the quick fix, and further, went on to put the younger sibling on the same drug regimen to "help things along each morning" Swear to god, its true. I now work with College age students, and see the results of a life of medication. Not an encouraging situation.
The most insightful quote about medicating our children came from the Onion years ago:
:Ritalin Cures nNxt Picasso!"
I wish more people knew about BIOFEEDBACK. If it is done correctly, and some brands are better than others..it can help regulate brain waves and really help tremendously.
Good piece, but the writing falls off in the latter half.
This article makes me not one to have kids. Are you kidding me? The alternative to high-energy, disruptive children (i.e. me between the ages of 6 and 12) now are walking zombies that twitch and drool. This is f-ing sick.
Yes, I don't recommend you have them, either. Only certain people can love a child who eats dinner on the windowsill. And those droolers, well, not every parent is able to accept and love a child with seizures, or brain damage that causes them to not automatically keep their mouths closed. But if you are going to have kids? Be sure and take a lot of Folic Acid in pregnancy so your child has a spine without a hole in it.
There is no one answer for any child or family. I get angry when people try to judge how my child has been treated for multiple physical and emotional problems. Starting with asthma, she also has been treated for central precocious puberty, growth disorders, cortisol deficiency, thyroid problems, essential tremors, obsessive-compulsive disorder, ADHD, and major depression. The mix of problems and treatments made it very difficult to pinpoint the ADHD. Do I wish she hadn't received some of the medications that were tried? Absolutely. However, We, the doctors and I, made the best decisions we could under the circumstances. Now as a teenager, my daughter is off all but a few medications and is entering college. Had she not received the aggressive treatment she did, she might not have lived, let alone be anything close to normal.
My point? We make the best decisions we can with the information we have available. Doctors can be wrong. Parents can be wrong. But that doesn't mean that we aren't doing what we can to help our children. Untreated asthma can result in death. Treated asthma can result in shorter stature. I'd prefer short stature over death, wouldn't you? A child who will not eat or drink because she is obsessed with the idea that food is poison will die. Medicating that child may not be the most popular idea, but letting kids kill themselves because they are afraid is even worse, don't you agree?
Please, please, please, understand that ONE SIZE DOES NOT FIT ALL. My daughter is on ADHD meds now. With them, she is able to function well. Without them, she dissolves into a hyper-focused computer-couch potato. I know it doesn't make sense to the common public, but her doctor and I know what is happening and see the difference when she can stop the over-stimmulation she gets from the computer. Does that mean computers are bad? No, it means my daughter doesn't have the common sense switch to distinguish between what is appropriate and what is too much without the medication.
Amen.
Citivas, I would truly be remarkable for a school to accommodate the learning differences in children. You must have been able to send your children to one of them. Lucky you.
The pseudonym, really, are you comparing your children to the mad women locked in the attic?
Good Lord, how can you people not know that giving your children mind-altering drugs that are prescribed by doctors citing obviously biased studies would be dangerous?
Since when is childhood a mental diagnosis?
The pharmacetical industry profits from creating anxiety and fear over made-up (or greatly exaggerated) problems and then making new drugs that have multiple dangerous side-effects to treat those non-problems. Yes, I know that they also create drugs that help people blah blah blah- but that part of the business is not where their profits come from.
Children do not need to be drugged for being children- their parents need to be chastised for not being parents.
Some of us are perfectly aware there are potential dangers inherent in any medical treatment. We are also aware there are guaranteed dangers in not making use of some medical treatments.
Who are you to dictate the medical treatment for medical problems? Think about Type 1 Diabetes. It is just an autoimmune disorder. Or seizures - those kids are just trying to get attention and the drugs they give them are powerful.
Yep. Sometimes it takes a powerful drug to stabilize a powerfully destabilized brain.
I keep wondering what it will take to stop the rabble from taking the moral high ground on things about which they have not troubled themselves to learn.
Each child is different. Each child needs a comprehensive medical evaluation by a pediatric physician. Each child needs a comprehensive behavior evaluation (checklist of daily behaviors) completed by the parent, educator, and physician. A decision is then made for the next course of action. If...and only if....a drug is needed to correct educational disruptive behaviors...then a short term, I reiterate, a short term trial on the lowest dose of drugs is given. The checklist evaluation is then given after about 2 weeks. If the drug (ritalin/straterra/etc) is effective, it will be immediately observable. Then the team should meet again and determine the next course of action. Maybe a slight increase in meds, maybe a complete different course of action ranging from behavioral control to psychiatric assistance. Using this procedure, I have witnessed absolute medical miracles in the classroom enabling the child to learn and behave. I have also seen children that would be inappropriate for medication. Evaluate, evaluate, evaluate.
cbeenthere, my kids attend public schools (and co-op community pre-schools), with State-average class sizes and resources and have typical HMO-based medical care. Absolutely nothing special, though granted certainly better than many (like the tens of millions of kids with no health care in this country). I don't think my comments require elite schools. Most kids (certainly not all) can adapt fine even if they are not getting special attention in class even if they are developing differently than the norm. And if the implication is you need to be wealthy to have my approach, I would argue it takes more financial resources to be able to send your child to half-a-dozen specialists for evaluation and put them on a cocktail of brand-name medicines than to attend public school and rely on a general practitioner HMO doctor as we have.
Thank you.
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