In the JournalsPerspective

Half of children with Down syndrome received supplements from parents

Photo of Amy Feldman Lewanda
Amy Feldman Lewanda

Nearly half of parents of children with Down syndrome reported giving or having given dietary supplements to their children to improve health and intellectual outcomes, according to a recently published study results in The Journal of Pediatrics.

“I suspected parents were taking these supplements and may be reluctant to share the information,” Amy Feldman Lewanda, MD, a medical geneticist at Children’s National Health System, said in a press release. “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.”

Lewanda and colleagues administered an anonymous survey in English and Spanish to parents of children aged 18 years or younger who were diagnosed with Down syndrome. They asked them about their awareness and use of nutritional supplements for their children.

The researchers analyzed 1,167 responses, which included 98% in English. Most respondents (82.5%) were white. Forty-nine percent of parents reported current (37.9%) or prior (11.6%) use of dietary supplements for their child. Another 33.6% of parents reported having heard of supplements but not using them, and 17% reported not being aware of the supplements.

The parents reported more than 150 different products, with the average child receiving three supplements (range, 1-18). Nutrivene-D (International Nutrition), was the most commonly used supplement (13.6%). Curcumin, produced by the turmeric plant, and green tea extract were also widely used (9.6% and 8.7%, respectively).

Supplements were most often given to children aged younger than 1 year (28.4%), whereas 17.5% of children began supplementation between the ages of 12 and 23 months. Two-thirds of parents who tried supplementation had done so by the time the child reached 4 years of age.

The supplements cost an average of $90.53 per month.

Most parents (87.3%) reported that they had seen improvement in their children who currently took supplements, whereas 38.3% of parents who had stopped supplementation reported improvements while the supplements were being used. Improvements were most often noted in speech, immune function, attention and focus and cognitive ability.

According to the researchers, 17% of parents reported side effects, with gastrointestinal disturbance being the most common.

The parents noted that lack of improvement and cost were the primary reasons for stopping the supplements.

Most parents learned about the supplements from a parents’ support group (49.8%), a friend (28.6%) or newspapers and media (22%).

Results of the survey also showed that 19% of parents had not disclosed their children’s supplement use to their pediatrician. The most common reason for not informing the pediatrician was that he or she did not ask if the child was taking supplements. A quarter of respondents reported that they believed the physician would not approve of the supplements.

Lewanda and colleagues noted that discussing supplements and other nontraditional treatments with parents is recommended by AAP.

“Health care providers who see children with Down syndrome need to ask parents whether their child is receiving any dietary supplements,” Lewanda told Infectious Diseases in Children. “This information may be critical in diagnosing health problems or in preventing significant health risks such as a child with congenital heart disease going for heart surgery while on supplements that affect platelet function, significantly affecting risk of bleeding.” by Bruce Thiel

Disclosures: The authors report no relevant financial disclosures.

Photo of Amy Feldman Lewanda
Amy Feldman Lewanda

Nearly half of parents of children with Down syndrome reported giving or having given dietary supplements to their children to improve health and intellectual outcomes, according to a recently published study results in The Journal of Pediatrics.

“I suspected parents were taking these supplements and may be reluctant to share the information,” Amy Feldman Lewanda, MD, a medical geneticist at Children’s National Health System, said in a press release. “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.”

Lewanda and colleagues administered an anonymous survey in English and Spanish to parents of children aged 18 years or younger who were diagnosed with Down syndrome. They asked them about their awareness and use of nutritional supplements for their children.

The researchers analyzed 1,167 responses, which included 98% in English. Most respondents (82.5%) were white. Forty-nine percent of parents reported current (37.9%) or prior (11.6%) use of dietary supplements for their child. Another 33.6% of parents reported having heard of supplements but not using them, and 17% reported not being aware of the supplements.

The parents reported more than 150 different products, with the average child receiving three supplements (range, 1-18). Nutrivene-D (International Nutrition), was the most commonly used supplement (13.6%). Curcumin, produced by the turmeric plant, and green tea extract were also widely used (9.6% and 8.7%, respectively).

Supplements were most often given to children aged younger than 1 year (28.4%), whereas 17.5% of children began supplementation between the ages of 12 and 23 months. Two-thirds of parents who tried supplementation had done so by the time the child reached 4 years of age.

The supplements cost an average of $90.53 per month.

Most parents (87.3%) reported that they had seen improvement in their children who currently took supplements, whereas 38.3% of parents who had stopped supplementation reported improvements while the supplements were being used. Improvements were most often noted in speech, immune function, attention and focus and cognitive ability.

According to the researchers, 17% of parents reported side effects, with gastrointestinal disturbance being the most common.

The parents noted that lack of improvement and cost were the primary reasons for stopping the supplements.

Most parents learned about the supplements from a parents’ support group (49.8%), a friend (28.6%) or newspapers and media (22%).

Results of the survey also showed that 19% of parents had not disclosed their children’s supplement use to their pediatrician. The most common reason for not informing the pediatrician was that he or she did not ask if the child was taking supplements. A quarter of respondents reported that they believed the physician would not approve of the supplements.

Lewanda and colleagues noted that discussing supplements and other nontraditional treatments with parents is recommended by AAP.

“Health care providers who see children with Down syndrome need to ask parents whether their child is receiving any dietary supplements,” Lewanda told Infectious Diseases in Children. “This information may be critical in diagnosing health problems or in preventing significant health risks such as a child with congenital heart disease going for heart surgery while on supplements that affect platelet function, significantly affecting risk of bleeding.” by Bruce Thiel

Disclosures: The authors report no relevant financial disclosures.

    Perspective
    Ankoor Shah

    Ankoor Shah

    I did not realize how prevalent supplements for Down syndrome are and how many different types are on the market. This study is a useful reminder to check in about practices parents use outside of our office to help improve their child’s health outcomes, not only for Down syndrome but other genetic conditions and chronic illnesses. Supplements are not regulated by the FDA and can have unknown risks. It is vital for the family to feel comfortable with the medical team to share that information.

    • Ankoor Shah, MD, MPH
    • General pediatrician, Children’s National Health System President, D.C. Chapter of the American Academy of Pediatrics

    Disclosures: Infectious Diseases in Children was unable to determine relevant financial disclosures at time of publication.