Why Doctors Should Ask About the Use of Supplements in Patients with Down Syndrome

July 3, 2018

My wife is a pediatrician and in better health than I am. She is physically fit and obsessively exercises, which is more than I would claim about myself. She begins her day in a routine way, which includes drinking a foul-smelling concoction of green tea, herbs, and spices that are said to have anti-inflammatory qualities. She uses it to wash down fist-full of supplements, which are without solid scientific evidence of extending life or delivering the specific health benefits for which she takes them.

I like to start my day with two cups of Peet’s Italian roast. While there’s growing literature about the health benefits of caffeine, I can tell you there’s an immediate payoff as once I drink this magical elixir which clears the haze of fog that has cradled me since leaving bed, restores the focal mechanism of my eyes, and the ability to speak returns.

I have suggested to my wife that, as a physician, she should take a more evidence-based approach to using supplements and understand whether there are any health risks in using them. She usually replies with a counter suggestion involving walking the dog or getting my laundry off the floor. The point is she sees little downside in doing so and that even if after I am once again able to speak, I’d be wise to hold off doing so until she heads off to work.

Nevertheless, it is with interest that I read a new study in the Journal of Pediatrics by researchers at Children’s National Rare Disease Institute that explored the use of dietary supplements in children with Down syndrome, a genetic condition that causes developmental delays and intellectual disabilities.

In the 1940s, the Michigan physician Henry Turkel sought to treat patients with Down syndrome with a mixture of nearly 50 ingredients including vitamins, minerals, and other substances he believed could counter the metabolic deficiencies these patients had.

The approach was controversial. The U.S. Food and Drug Administration stopped Turkel from distributing his therapy across state lines, but the state of Michigan allowed him to provide it to patients. Some parents reported benefits. Some parents complained of side effects. But others built on Turkel’s work and the practice of using a cocktail of dietary supplements including vitamins, minerals, hormones, antioxidants, and other ingredients to treat children with Down syndrome. The use of supplements has become a widespread practice in children with Down syndrome in the hopes of improving intelligence and function. Policy statements of patient advocacy groups and professional organizations, however, do not support supplement use for individuals with Down syndrome because of the lack of proven benefit and safety.

The researchers conducted a survey to determine how widespread the use of supplements for children with Down syndrome, the perceived impact, cost, and other issues relating to the use of supplements in these kids.

The survey found that nearly half of the 1,167 respondents (49 percent) have given or currently give dietary supplements to their children in the hope of improving health and development. On average, children receive three of the more than 150 supplements reported, with nearly 30 percent of users beginning supplementation before the child’s first birthday.

According to Amy Feldman Lewanda, a medical geneticist at Children’s National Rare Disease Institute and lead author on the study, one troubling trends was that nearly 20 percent of parents who report using dietary supplements do not inform their pediatrician. Many patients indicated that they didn’t inform pediatricians because they weren’t asked, but others said they expected the doctors to be unfamiliar with the use of supplements or disapprove of their use.

“While we know supplements are given by parents in hopes of improving developmental outcomes for children with Down syndrome, many of these supplements contain concerning ingredient profiles that can have adverse effects in infants and children that are too young to communicate their symptoms,” says Lewanda. “Additionally, these supplements have no proven safety or efficacy, so it’s important for families to consult with their pediatrician or primary care provider to help determine any risk, ill effects, or conflicts with existing treatment.”

For instance, in the case of at least 60 herbal supplements, there is concern about the potential for liver damage. A chemical analysis of herbal supplements used by patients showed some contained anabolic steroids or pharmaceuticals not included on the list of ingredients. Curcumin, which is believed to provide neuroprotective benefits, inhibits platelet function and can increase bleeding time. And a variety of fat soluble vitamins, which are stored in the body and have “uncertain long-term consequences,” are giving in doses that far exceed the amount recommended by the FDA. The researchers noted that one supplement provided 5,000 percent of the daily recommended dose of vitamin E for a child under the age of 4.

Parents who give their children with Down syndrome supplements by and large believe they provide benefits. About 87 percent feel they are effective. Those who stopped giving supplements to their kids point to a lack of efficacy and the cost—about $90 a month on average. Approximately 17 percent of respondents noted side-effects of supplement use, specifically gastrointestinal disturbances.

The study is not critical of parents using supplements to treat their children with Down syndrome. Instead, it is meant to alert pediatricians that this is a common practice among this patient population and that it’s important to ask parents about supplements they may give their children.

“This research gives pediatricians a bit of a wake-up call on what’s trending in the Down syndrome community and the dialogue taking place online, in parent support groups and outside of the doctor’s office,” says Marshall Summar, director of Children’s National Rare Disease Institute and co-author on the study. “The goal is for pediatricians and parents to work as a team in providing the best care possible for every child, so we hope this research provides physicians greater insight and encourages more open dialogue with patient families about supplement use.  Since many of these supplements have active ingredients, it is vitally important that the primary care provider be aware of them.”

I can say from experience that pediatricians can be stubborn, ill-informed about supplements, and difficult to deal with, particularly before I have my morning coffee. Nevertheless, patients would be wise to remember supplements can have ill-effects, interact with medications, and they should ask their doctor about their use, even if the doctor doesn’t ask.

July 3, 2018

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