Dr. Rebecca Carey admits to being a little embarrassed about what her son, Mark, eats every day. Hamburger patties for breakfast, or bacon. A pack of raisins and a cookie for lunch; a turkey and cheese sandwich “if I’m lucky,” says Carey, but it usually comes back home. His favorite dinner is fish cakes and pasta, but all vegetables remain firmly untouched.
It’s the kind of diet — low in fruits and vegetables, high in carbs — that a doctor like herself might caution against. But it’s also low in milk, sugar, and artificial food additives — all things Carey believes worsen 10-year-old Mark’s attention deficit hyperactivity disorder, or ADHD, symptoms. Twice a day, in the morning at their home in Newburgh, Ind., and from the school nurse at lunch, he takes a vitamin and mineral supplement, which helps make up for the lack of veggies.
It’s been six months on this diet, which Carey researched herself and tested out on Mark, and in that time he has transitioned off his ADHD medication. It wasn’t all smooth sailing; there were fights in the candy section of the grocery store, and Carey struggled to find quick, high-protein breakfasts. “But honestly, I would never go back,” she said.
Carey is not the only one who’s trying this approach. Medication and therapy remain the most effective treatments for ADHD. But driven by concerns about the short- and long-term side effects of psychiatric medications on children, some parents are looking for ways to keep their kids on lower doses of the drugs, or to quit the drugs entirely.
So amid a lot of confusing and contradictory information on the internet, and a big nutrition knowledge gap in the medical system, parents at their wits’ end are mapping out their own treatment plans through trial and error over the dinner table.
Medication and side effects
As of 2011, the latest data from the Centers for Disease Control and Prevention show, at least 6.4 million children in the US had been diagnosed with ADHD. Only about 6 percent are taking medication for the condition. The vast majority, then, are doing something else — perhaps counseling, or other forms of treatment, or nothing at all.
The most common types of drug used for ADHD are methylphenidate and amphetamine, both stimulants that work on the central nervous system, sold under brand names Ritalin and Adderall. These drugs are considered the most effective ADHD treatment. Less is known, however, about the drugs’ long-term effects. Common side effects include loss of appetite, trouble sleeping, and anxiousness.
Those side effects became a problem for Mark soon after he was first diagnosed with ADHD in kindergarten. At home, he’d always been a sensitive, irritable child, but in the classroom he started having “freak-outs,” said Carey: throwing things, hiding under his desk, biting other students. Carey’s pediatrician put Mark through a behavioral test, found he measured high on the ADHD spectrum, and prescribed him behavioral therapy and Concerta, another common brand of methylphenidate.
Carey was uncomfortable with the medication from the beginning. It became a constant fight to get Mark to eat; he shedded weight, and couldn’t fall asleep at night. Carey had a “gnawing feeling” that he’d have to always be on the drug. And it wasn’t helping his symptoms — instead, he seemed to be getting worse. After a year, his psychiatrist thought he was showing signs of bipolar disorder, and prescribed medication for that.
“I just felt in my heart of hearts there had to be a better way,” said Carey. As a physician specializing in gastrointestinal disease, Carey had seen diet do tremendous things for her own patients. Mark’s diagnoses got her thinking about nutrition’s role in the brain, and she started to chart her own course of research and experimentation.
Weighing pros and cons
Dietary interventions tend to be relatively low-risk — but the evidence base for most of them, in terms of improving ADHD symptoms, is still small.
To try to balance those factors against one another, a group of specialists in child and adolescent psychiatry at Ohio State University in 2011 devised what they call the SECS vs. RUDE test. Looking at the scientific literature surrounding 15 different dietary or nutritional interventions, they asked: Are they Safe, Easy, Cheap, and Sensible; or Risky, Unrealistic, Difficult, and Expensive?
“SECS doesn’t need as much evidence for someone to try it on an individual basis,” said Dr. L. Eugene Arnold, a physician at Ohio State’s medical center who specializes in childhood ADHD and autism and who coauthored the 2011 study. “You want more evidence before you invest a lot of money or undertake something risky.”
Delaying “standard treatment” — medication and behavioral therapy — in favor of alternative approaches can be risky if it means symptoms go untreated, wrote Arnold and coauthors in their review. If a treatment doesn’t work, there is also the loss of family resources, including time and money, to consider.
Some of the things their analysis found that fall under the SECS category are fatty acid supplements, specifically omega-3 supplements, which seem to improve ADHD symptoms.
Arnold and coauthors looked at five randomized, placebo-controlled, double-blind trials (the gold standard of clinical research) that tested combinations of fatty acids on ADHD symptoms, in both children and adults. Four had a statistically significant positive effect on symptoms.
Omega-3 fatty acids, said Arnold, show “small but significant benefits,” and as long as these supplements are low in mercury, it makes sense to try.
Other interventions, however — like homeopathic and herbal treatments — were both uncertain and potentially risky, the analysis found.
A supplement with less evidence, but which still passes the SECS test, is the one that Mark Carey takes. Called EMPowerplus, the supplement contains 36 different vitamins and minerals, and is marketed to help with psychiatric disorders, including bipolar disorder, ADHD, and depression.
But only one of the studies done on the pill was placebo-controlled and double-blinded. It showed a reduction in ADHD symptoms in adults. More research is needed on EMPowerplus and similar broad-spectrum micronutrient supplements before conclusions about their effectiveness can be made, Arnold said.
Eliminating additives, foods
More difficult interventions tend to be the ones that eliminate whole classes of foods. Elimination diets involve taking foods out of the diet — one of the first iterations of which, for hyperactivity, was the Feingold Diet.
Developed back in the 1970s, the Feingold Diet focused on the link between artificial colors and flavorings and ADHD. Research since then has supported a link. A 2004 meta-analysis of only the gold standard of studies — double-blind and placebo controlled — concluded that artificial food colorings increase hyperactivity in kids with ADHD. And another 2004 study found that kids even without a hyperactive disorder experience behavioral effects of colorings. Preschoolers given a drink with artificial coloring were rated as more hyperactive by their parents than those given a naturally colored placebo. (The study was blinded, so parents didn’t know which their kids received.)
Lidy Pelsser, a researcher at the Netherlands ADHD research center, led a trial in 2009 in which 100 families of children with ADHD were recruited to take part in a five-week “few-foods” experiment. Half were instructed to keep their kids on a healthy diet, and half were instructed to give their children only “turkey, rice, some vegetables, and water — and that’s it,” said Pelsser. Of the 41 families who completed the few-foods diet, 32 responded positively, with 60 to 70 percent improvements on ADHD tests compared to when they’d started.
Pelsser described this approach not as a cure, but as a “diagnostic tool” that is going to have different results depending on the child. If there’s no improvement in behavior after five weeks, “the child is allowed to eat everything again and medication would be appropriate,” she said. If the child improves significantly, then the parents can start adding foods back in slowly and one at a time to figure out which may be triggers.
She warned that this approach is “aggravating.” It is low-risk, but also difficult for families.
When it works, it seems to work really well, said Pelsser, and families are increasingly willing to try. “What I see is more awareness in parents that they do not want to give their medication and they are desperately looking for other ways to help their child.”
A 2014 review estimated that a strict elimination diet may have a 10 to 30 percent chance of showing symptom improvements for ADHD.
Arnold also pointed out that these approaches don’t have to replace medication.
“We know that behavioral treatments tend to enhance the effects of medication, so that the patient can respond to a lower dose,” said Arnold. “There’s no reason to believe that wouldn’t work the same way with diet and nutrition.”
Parents helping parents
Although diet is widely promoted by doctors as an important lifestyle factor in managing ADHD, along with exercise, routine, and good sleep habits, the acceptance of diet and nutrition as an effective primary treatment is still very “grassroots” within the medical community, according to Dr. Anna Esparham, a Kansas-based pediatrician and member of the American Academy of Pediatrics’s integrative health unit.
Carey recalls a feeling of isolation. “I was so despondent about where Mark was and despondent about the treatment options for him that I felt like I couldn’t be the only one,” she said.
So in September 2016, she started a support group for other parents like her who felt like they were struggling outside the mainstream. The first meetings were held at her church — “I didn’t want it affiliated with anything, I just wanted to start it in the local community,” she said — but after six months the group had grown large enough and was taking up enough of Carey’s time that she needed help. She brought it to the medical director at St. Mary’s hospital, in Evansville, Ind., where Carey works, and now the hospital hosts the group, which draws about 30 people to its meetings.
Each week a different speaker comes to talk about topics that the parents indicated they were interested in in a poll at the beginning — things like vision therapy, curbing screen time, and a behavioral therapy called the “nurtured heart” approach.
Carey acknowledges that these things “might not be mainstream or have lots of randomized control trials behind them,” but she figured parents — including herself — deserved to have a place could openly discuss alternatives to the status quo.
Ideally, someday, that place could also be the doctor’s office. Esparham thinks a big part of the reason parents and providers don’t discuss diet interventions for ADHD is a general ignorance of nutrition in the medical field. “A lot of doctors do not know how to give nutritional advice because they didn’t get in school, in residency, in training,” said Esparham.
Pelsser, the Dutch researcher, thinks it might take more than just education — it might take a perspective shift as well. “In the Netherlands as well as the United States there is a lot of skepticism about the effect of food on ADHD, despite the research,” she said. “I think it’s difficult to accept that things could be different from what we have been thinking all the time. It takes courage to say, well, after all, we may be wrong.”