“Concerning” supplement trends among Down syndrome children, study notes

03 Jul 2018 --- Research published in The Journal of Pediatrics has found that nearly half of parents of children with downs syndrome – who participated in the study – give or have given supplements to their children in an effort to improve their health outcomes. However, this information was routinely withheld from clinicians, prompting the study’s author to advise parents to proceed with caution.

“I suspected parents were giving these supplements and may be reluctant to share the information,” says Dr.Amy Feldman Lewanda, a Medical Geneticist at Children’s National Health System and the study author. “My goal with the survey was to determine the prevalence of this type of supplementation in an anonymous setting so that parents feel comfortable sharing the information.”

The study detected that out of the parents who actively supplement, 19 percent withhold this information from their clinician for a variety of reasons. These ranged from viewing the supplements as unimportant medical information to disclose to feeling that the pediatrician may not be knowledgeable about the alternative treatment of supplementation.

“What I tell my own patients is these supplements are not approved by any organization,” she says. “But I know that some parents still feel it's in their child's best interest to take them. Regardless of the practice, pediatricians need to know about all supplement use, which can interfere with medications or surgeries – and cause excessive bleeding.”

The survey included 1,167 responses from parents of down-syndrome children.

The most popular supplement was found to be antioxidants, with nearly a quarter of respondents stating that they had given their child either curcumin, a byproduct of turmeric or epigallocatechin-3-gallate (ECGC), the polyphenol compound in green tea. Coming in at second place, and accounting for nearly 19 percent of parents, were vitamins and multivitamins, with B vitamins being the most popular in this group. The third most administered supplement was proprietary products or combination supplements, such as Nutrivene-D or HAP-CAPS (High Achievement Potential Capsules).

“Proceed with caution”
Dr. Lewanda assures that she does not want the study to portray all supplements as “bad,” but she does reiterate her warning of proceeding with caution to parents.

Vitamin A, for example, can become dangerous if you have too much as you can develop a condition called pseudotumor cerebri, which might feel like a brain tumor, Dr. Lewanda explains. “It's not [a brain tumor], but you can have double vision, vomiting and headaches. Young children and infants can't report what's going on and that's concerning.”

The study further notes potential concerns over consuming hyper-concentrated forms of fat-soluble vitamins, including vitamin E and vitamin K, which stay in the body until the vitamins are used. One particular supplement, Speak, provides 5,000 percent of the recommended daily value limits of vitamin E. Fat-soluble vitamins and/or herbal supplements can pose unknown health risks – including liver damage.

Chemical analyses of herbal supplements have found some contain anabolic steroids or pharmaceuticals that aren't listed in the ingredients. Hepatoxicity has been cited among 60 herbs, herbal drugs and herbal supplements. The problem, Dr. Lewanda notes, is that these products aren't regulated, like pharmaceuticals are, and similarly, they aren't thoroughly tested for their safety and efficacy.

To spark conversations about supplement use, Dr. Lewanda and the study authors reference the American Academy of Pediatric guidelines for the use of complementary and alternative medicine in pediatrics, which includes a toolkit to help pediatricians discuss this subject with patients.

“This survey gives pediatricians an idea of what's happening online, in parent support groups and outside of the doctor's office,” concludes Dr. Lewanda.