ORIGINAL www.jpeds.

com • THE JOURNAL OF PEDIATRICS

ARTICLES
Patterns of Dietary Supplement Use in Children with Down Syndrome
Amy Feldman Lewanda, MD, Margo Faust Gallegos, CGC, and Marshall Summar, MD

Objective To determine the frequency of dietary supplement use for children with Down syndrome, and to obtain
additional descriptive data regarding the age of initial treatment, cost, perceived benefits, and disclosure of use to
the pediatrician.
Study design An anonymous questionnaire in English and Spanish was created for parents of children under
age 18 years with Down syndrome. Surveys were completed in our clinic, or accessed on a number of Down syndrome-
related websites.
Results A total of 1167 responses were completed and analyzed. Forty nine percent of responders currently/
previously gave their child supplement(s). The average child received 3 supplements (ranging from 1-18). Al-
though Nutrivene, curcumin, and green tea extract were most common, over 150 different products were reported.
Supplementation began most often in infancy, generally between age 4 and 6 months. Average cost was $90.53/
month. Overall, 87% of users noted improvement, mainly in speech, immunity, and attention; 17% reported side-
effects, predominantly gastrointestinal disturbance. Lack of improvement and cost were the main reasons for
discontinuation. Most parents learned of supplements through a parent group or friend. In almost 20%, the pedia-
trician was unaware of the supplement use.
Conclusions Almost one-half of parents surveyed administer or have administered supplement(s) to their chil-
dren with Down syndrome. Many of the supplements have concerning ingredient profiles and are given to children
too young to articulate potential ill effects. Providers need to be aware of these products and question families about
their use. (J Pediatr 2018;201:100-5).

D
ietary supplements are commonly used in both children and adults to promote health and wellness. A study which
evaluated data from 2003 to 2006 showed that pediatric supplement use in various conditions ranged from 26% to
43% depending on age, but did not assess use in infants.1
Dietary supplements are also used in children with Down syndrome, often with the specific hope of improving intelligence
or function. Dietary “treatment” for Down syndrome was first proposed in the 1940s when Henry Turkel created a supple-
ment containing almost 50 ingredients and reported improvements in his patients’ intelligence and appearance.2 One ingre-
dient was thyroxine, which in fact may have benefited those with hypothyroidism. Since that time, a number of others have
used various combinations of vitamins, minerals, antioxidants, and other ingredients to try to improve the intelligence of af-
fected children. Some have reported not only a functional improvement, but physical changes in the children being treated,
including the development of a typical nose bridge and reduction of epicanthal folds.3,4 Nutrivene-D (International Nutrition,
Inc, Middle River, Maryland) is a multi-ingredient formula featured on television in 1995 and again in 1997 in stories regard-
ing Dixie Tafoya and the formula she created for her adopted daughter with Down syndrome.5,6 She expanded on Turkel’s formula
and added the drug piracetam (Pure Nootropics, Albuquerque, New Mexico). None of these products, however, have been proven
to be effective.5,7,8 Policy statements by patient advocacy groups and professional organizations have clearly declined to support
supplement use for individuals with Down syndrome because of the lack of proven benefit and safety.9,10
Over time, the number of products touted to improve health and intellectual function has continued to increase. These prod-
ucts contain hundreds of substances, alone or in combination, including antioxidants, herbs, vitamins, minerals, essential oils,
enzymes, and animal/plant products. As nutritional supplements are typically not prescribed by physicians, it is difficult to as-
certain the frequency of their use. When asked only what medications their child takes, parents may not report supplements.
This study was, thus, designed to learn more about the overall frequency of supplement use, the types of supplements that are
being used, and the frequency at which families disclose the supplement use to their primary care provider.

Methods
A survey was created in English and Spanish on SurveyMonkey.com to ask parents
about their awareness and use of nutritional supplements for children with Down
From the Children’s National Rare Disease Institute,
Children’s National Health System, Washington, DC
The authors declare no conflicts of interest.
Portions of this study were presented as an abstract at
the Down Syndrome Medical Interest Group (DSMIG),
July 20-23, 2017, Sacramento, California.

ECGC Epigallocatechin-3-gallate 0022-3476/$ - see front matter. © 2018 Elsevier Inc. All rights
DV Daily value reserved.
https://doi.org10.1016/j.jpeds.2018.05.022

100

syndrome (Appendix; available at www.jpeds.com). The only
inclusion criterion was having a child under age 18 years di-
agnosed with Down syndrome. The survey was anonymous
and was declared exempt from requiring approval by our In-
stitutional Review Board. Some parents took the survey on a
tablet device in our clinic; others accessed the survey online.
Direct links were provided on the websites of the National
Down Syndrome Society, National Down Syndrome Con-
gress, DS-Connect, and the Down Syndrome Association of
Northern Virginia. Permission was given to parents who asked
to share the link on various Facebook pages to encourage
participation.
After choosing their preferred language and confirming that
they have a child under age 18 years with Down syndrome,
participants were asked to select 1 of the following responses:
(1) I currently use supplements for my child with Down syn-
drome; (2) I am not currently using the supplements, but have
used them in the past; (3) I have never used supplements, al-
though I have heard about them; or (4) I have never heard of
nutritional supplements for Down syndrome. Those that se-
lected option 4 were asked their race/ethnicity and thanked for
their participation; no additional questions were asked. Each
of the other 3 responses led participants to a different subsurvey
based on this answer. Therefore, not all participants were asked
the same number of questions.
Responses did not identify from which source (clinic, DS-
Connect, National Down Syndrome Society, etc) the survey was
accessed. However, it was most likely that more than one-
half of our responses came via DS-Connect, the Down syn-
drome registry launched by the National Institutes of Health
as a research tool. This is because our total number of respon-
dents more than doubled after being made available to DS-
Connect users. Participants who did not complete the question
regarding supplement use were disqualified from data analysis.
Results
We received over 1200 responses; 1167 were considered com-
plete for analysis. Although the majority of respondents were
from the US, some respondents lived in Brazil, Poland, England,
and the European Union. 98% were English speaking; 2% of
participants completed our Spanish survey. The vast major-
ity (82.5%) listed their race/ethnicity as Caucasian; a much
smaller percentage identified as African American or Asian
(4.5% each), Hispanic or Middle Eastern (3% each), mixed eth-
nicity (0.75%), Native American (0.5%), or other (1%). The
respondents’ children ranged in age from infancy (4.2%) to
older children (12-17 years of age; 25%). There was an almost
even distribution of about 15% for age groups 13-35 months,
3-4 years, 5-6 years, and 7-9 years; 9% were age 10-12 years.
Approximately one-third (37.9%) of parents reported that
they currently use dietary supplements for their child with
Down syndrome. Another 11.6% have used them in the past.
Those that had heard of these supplements but have not used
them accounted for 33.6% of our sample, and 17.0% were not
aware of these supplements at all.
Volume 201 • October 2018
Supplements Used
A tremendous variety of supplements were reported. Many are
brand-name combinations of multiple ingredients, making clas-
sification into discrete categories more difficult. A number of
supplements listed by parents are actually prescribed medi-
cations. Others could not be classified because no product by
that name could be found, or were nonspecific (“various ho-
meopathy” or “others based on labs”). Others listed nutri-
tional formulas or laxatives. Some of the more unusual
supplements included camel milk, bee pollen, royal jelly, and
hemp oil. A full list of products reported is shown in Table I
(available at www.jpeds.com), along with definitions of some
less familiar product categories.11-13
On average, children received a combination of 3.3 differ-
ent supplements, with a range of 1-18. The single most com-
monly used supplement (13.6%) was Nutrivene-D. Nutrivene-D
is actually a product line, including Daily Supplement, Daily
Enzyme, NightTime Formula, and Polyphenol Support. Those
who reported Nutrivene-D use may have been using 1 or more
of those products. Curcumin, produced from the turmeric plant
and reported to have antioxidant and anti-inflammatory prop-
erties, was next most common at 9.6%. Green tea extract, or
its active ingredient epigallocatechin-3-gallate (ECGC) was cited
by 8.7%.
If categories of supplements are considered, the most popular
group would be antioxidants (25.8%). This is not surprising,
as that category contains both curcumin and green tea extract/
ECGC. The second most common group was vitamins, ac-
counting for 18.9%. This included both single and
multivitamins. When a single vitamin was noted, the B vitamin
family was most frequent, especially the folate/folic acid/
folinic acid forms of B9. Third most common were the various
combination or proprietary products at 15.8%. These in-
cluded Nutrivene-D and High Achievement Potential Cap-
sules (Warner House, Inc, Tucson, Arizona). Supplementation
with fats/fatty acids accounted for 10.8%. This group in-
cluded fish oil, as well as the omega 3, 6, and 9 fatty acids.
Timing of Supplementation
Parents were asked at what age they began giving nutritional
supplements to their children. There was a wide range of
answers (Figure), with some women taking the supplements
themselves while pregnant with a fetus prenatally diagnosed
with Down syndrome. Others took the supplements them-
selves, providing them to their child through breast milk. Of
those parents who gave supplements, 28.4% began before their
child’s first birthday. After infancy, the second most common
age was 12-23 months, when 17.5% began supplementation.
There was a drop-off after 4 years of age. Of those parents who
chose to try dietary supplements, two-thirds (66.5%) had done
so by that time.
Cost
Although 1 parent reported spending $3000/month, all others
reported spending between $15 and $400 monthly. (Amounts
stated in foreign currency were converted to American [US]
dollars). On average, parents spent $90.53/month on their chil-
101
THE JOURNAL OF PEDIATRICS • www.jpeds.com
Figure. Age at which parents began giving dietary supple-
ments to their child with Down syndrome.
dren’s supplements. If purchased consistently, this would total
$1086.36/year. Cost was the second most common reason why
families discontinued their use.
Results of Supplementation
The majority of parents whose children currently took supple-
ments (87.3%) believed they had seen improvement. However,
in parents who stopped supplementation, only 38.8% re-
ported improvements during the time they were used. Areas
they believed that improved most often were speech, immune
function (fewer illnesses), attention/focus, and cognitive ability.
A smaller number cited improvements in gross motor skills,
overall health, energy, and sleep.
We also asked parents about side-effects of the supple-
ments. The most common side-effect reported was gastroin-
testinal disturbance. Others were reported at a much lower
frequency, including hyperactivity, agitation, aggression, sleep-
lessness, and “autistic” or self-stimulatory behaviors. Side-
effects that were reported rarely included bone pain, tooth
grinding, emotional distress, and pruritus. However, side-
effects were not the main reason that parents decided to stop.
The most common reasons parents gave when ending the use
of supplements were the lack of improvement and the cost.
Where Parents Heard about Supplements
Parents learned about nutritional supplements from mul-
tiple sources, and many listed more than one. As expected, most
learned about supplements from someone other than the child’s
physician. The most common source was a parent support
group (49.8%), followed by a friend (28.6%). Newspapers/
media were cited in 22%. The physician was listed as the source
of information in 19.5%, and other providers such as thera-
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Volume 201
pists in 11.8%. Only 1.2% reported that they learned of supple-
ments from information mailed to their home.
Provider Awareness
Overall, 81% of respondents reported that they had in-
formed the pediatrician, but 19% had not. Of those who did
not inform their pediatrician, the most common reason given
was that he/she did not specifically ask if the child was taking
them (32.6%). Almost as many (25.0%) believed that the doctor
would not approve, so chose to withhold this information. One
parent reported “I strongly believe these supplements being
beneficial to my child. Unfortunately, most doctors do not. I
will give them regardless of their approval, so I feel there is
no need to give the information.” Fifteen percent believed the
supplements did not need to be reported, as they are not pre-
scribed medications. A smaller subset believed their pediatri-
cian was not knowledgeable about supplements (8.7%), or that
he/she had specifically discouraged or dismissed the parent
when they had wanted to discuss using them (6.5%). Just over
3% reported that the pediatrician was not interested in whether
their child was taking supplements. The remainder of the par-
ticipants had not had the opportunity to discuss the topic with
the doctor (7.6%), or listed other reasons (1%).
Discussion
We found that almost one-half of pediatric patients with Down
syndrome whose parents responded to our survey use or used
nutritional supplement(s). More surprising was the ex-
tremely young age at which these supplements are being given.
The vast array of supplements used includes many with un-
reliable strengths, uncertain ingredients, or megadoses of fat
soluble vitamins. This can lead to adverse effects in infants and
children too young to report their symptoms. Older children
with Down syndrome may also find it difficult to verbalize
physical complaints because of speech and/or intellectual delays.
The search for an effective supplement for individuals with
Down syndrome began over 75 years ago with large doses of
conventional vitamins. The array of products now available is
vast. In addition to vitamins and minerals, there are herbs, fruit/
vegetable powders, essential oils, fatty acids, amino acids, and
antioxidants. These products are sometimes described as
nutraceuticals. The term “nutraceutical,” coined in 1989 by Dr
Stephen DeFelice, combines “nutrition” and “pharmaceuti-
cal” to describe a “food (or part of a food) that provides medical
or health benefits, including the prevention and/or treat-
ment of a disease.”14
The literature is mixed on the benefit of supplements
(Table II).15-19 Although the majority of parents who used
supplements reported subjective benefits, there are also po-
tential problems with supplement use. The names of some
products are colorful and potentially misleading. Products such
as Brain Sustain (Xymogen, Orlando, Florida), Restore (Biomic
Sciences LLC, Charlottesville, Virginia), and Speak (Lifetrients,
Lake Bluff, Illinois) seem to imply a direct benefit on the brain,
or restoration of abilities that may be lacking in the target popu-
lation. Many supplements provide vitamins in a dosage that
Lewanda, Gallegos, and Summar
October 2018 ORIGINAL ARTICLES

Table II. A sample of studies that have investigated dietary supplementation for Down syndrome
Substances tested Treatment group What was tested Results Comments Authors Year
15
Piracetam (used in Children with Down Cognitive function No improvement High rate of adverse Lobaugh et al 2001
Alzheimer disease, syndrome effects (aggression,
stroke, dyslexia) violence, agitation,
irritability, sexual
arousal, poor sleep
and decreased
appetite).
Resveratrol and ECGC Mouse model of Down Tissue samples Restoration of No clinical in vivo Valenti et a,16 2016
syndrome mitochondrial effects tested.
biogenesis
Vitamins C and E Children and teenagers Blood samples Decreased oxidative No clinical or in vivo Parisotto et al17 2014
with Down syndrome stress effects tested.
Antioxidants (selenium, Infants with Down Developmental No clinical or Ellis et al18 2008
zinc, vitamins A, C, syndrome under assessment, statistically
and E) with and age 7 mo at time of communication significant effects.
without folinic acid enrollment assessment, and
tests of blood and
urine
Cognitive training with Adults with Down Multiple behavioral, Improvement in visual No effect on 13/ de la Torre et al19 2016
or without ECGC syndrome cognitive, and recognition memory, 15 skills on
functional measures inhibitory control and neuropsychological
adaptive behavior battery and 8/
9 adaptive skills
tested.

far exceeds that recommended by the Food and Drug Admin-
istration. The amount of vitamin E provided by the daily rec-
ommended dose of Speak is 5000% of the daily value (DV)
for children under age 4 years, and 1670% of DV for those age
4 years and older. The amount of vitamin K is 2880% of the
DV for those over age 4 years (no value is available for younger
children).20 As both vitamins are fat soluble, amounts not used
would be stored in the body with uncertain long-term con-
sequences. In addition, unsubstantiated promises of benefit or
treatment has resulted in a number of manufacturers receiv-
ing attention from the Federal Trade Commission21-24 or
warning letters from the Food and Drug Administration.25-31
An international group of healthcare professionals, scien-
tists, and support organizations have published a warning to
parents regarding the lack of proof for some claims and the
concern that such treatment may in fact be dangerous.32
Concerns have also been raised regarding the safety of herbal
supplements, which are frequently perceived as natural and safe.
However, they are not subjected to the safety monitoring and
strict approval process which apply to pharmaceuticals. Users
may not consider that formulations may change without notice,
sourcing of the ingredients may vary, and there may be sig-
nificant variations between lots of the same supplement.33
The principal safety concern for herbal supplements is liver
damage, and hepatotoxicity has been reported with at least 60
herbs, herbal drugs, and herbal supplements.33,34 Many factors
influence the safety of herbal products. Substances that may
be safe in their natural form may perform differently in high
concentrations. Other factors include the use of the correct plant
and plant part (leaf, stem, root) in which the herb resides (and
not a plant that is merely similar in appearance), and the ad-
dition of unlisted adulterants. The Drug-Induced Liver Injury
Network investigated cases of liver injury from 2003 to 2015.
Patterns of Dietary Supplement Use in Children with Down Syndrome
Chemical analysis of herbal supplements taken by patients
showed that some contained anabolic steroids or pharmaceu-
ticals not listed in the ingredients.35 Contrary to regulations,
some products do not provide a label with an ingredient list.33
Particular attention has been focused on green tea.36 After
caffeine, theophylline, and theobromine, polyphenols are the
major bioactive ingredient. The polyphenols include cat-
echins, of which ECGC has the strongest antioxidant poten-
tial. ECGC has been found to be cytotoxic to hepatocytes.
Hepatic injury from green tea alone has a longer latency, better
outcome, and shorter recovery time. Hepatic injury from green
tea-based herbal supplements with multiple ingredients,
however, occurred faster and with more serious consequences.
Some individuals required liver transplantation. Recovery time
was also considerably longer.
Green tea is used by almost 10% of our respondents who
use supplements. Nutrivene Polyphenol Support previously con-
tained green tea/ECGC, which was removed because of “concern
that if taken with the Nutrivene Daily Supplement, it could
interrupt folate metabolism.” However, Nutrivene Green Tea
is offered as a separate product which “may be taken 2-4 hours
from the Nutrivene-D Daily Supplement.”37
Curcumin was the second most popular supplement named
in our survey and is generally touted for its neuroprotective
effects. However, curcumin/tumeric also inhibits platelet func-
tion, potentially increasing bleeding time.38 This is also a risk
with green tea /EGCG,39,40 as well as piracetam,41 and querce-
tin,39 which were each used by a smaller percentage of our fami-
lies. These compounds may increase the risk of bleeding, and
their use may not have been disclosed to their healthcare
provider.
Limitations of our study include that it was designed with
broad questions in mind and could not easily address spe-
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THE JOURNAL OF PEDIATRICS • www.jpeds.com
cific benefits/drawbacks of individual supplements. As most
children were taking more than 1 supplement, the effect of any
single product could not be accurately assessed. The racial/
ethnic categories used are not identical to those used by the
National Institutes of Health and US Census. However, our re-
spondents were able to use the “other” option to self-identify
as either Middle Eastern or mixed race/ethnicity, which are not
available choices in the National Institutes of Health catego-
ries. All data were self- reported. Therefore, reports of im-
provement were subjective and not based on any testing of
health or development. Our respondents were a sample of con-
venience and that may have introduced selection bias, with
parents who strongly support supplement being more likely
to participate in our survey. However, a significant percent-
age of responders (slightly more than 50%) reported that they
do not use supplements for their child. There may have been
some recall bias if parents provided information about past
supplement use. The majority of our respondents were ob-
tained through DS-Connect. This could also be a source of bias,
as participation in the registry is voluntary and not population-
based. It is possible that more than 1 parent of a child could
have taken the online survey. The SurveyMonkey tool only
allows for 1 response from a single Internet Protocol address,
so parents would have either had to delete the cookie from the
browser history, or use more than 1 computer. Although the
first question asked the participant to confirm that they had
a child under age 18 years with Down syndrome, we cannot
exclude the possibility that respondents without a child without
Down syndrome (eg, a representative from the supplement in-
dustry) answered the anonymous survey. Future studies would
be helpful to evaluate the benefits of particular products, and
to objectively quantify both developmental progress and health
measures.
Almost 20% of parents who give their child nutritional
supplements have not informed their pediatrician. The main
reason reported was because the pediatrician never specifi-
cally asked about supplement use. A simple way to improve
healthcare for these children would be to inquire about medi-
cations and supplements at each visit. Some parents were re-
luctant to discuss the topic with the doctor because they believed
the doctor was uninformed about supplements for children
with Down syndrome. Others felt that the doctor would dis-
approve of supplement use, or dismiss the question entirely.
Consequently, pediatricians and other healthcare providers may
be missing important information necessary for providing
optimal healthcare. Furthermore, discussing complementary
or alternative treatments with parents is recommended in the
most recent American Academy of Pediatrics guidelines for
Down syndrome.42 Suggestions on how to discuss the use of
supplements and other nontraditional treatments are re-
viewed by the American Academy of Pediatrics Task Force on
Complementary and Alternative Medicine.43
To serve and care optimally for these children, providers must
become more knowledgeable about nutritional supplements
for Down syndrome and be willing to ask about and discuss
their use with parents. As more than one-third of parents sur-
veyed currently use supplements, it is likely that providers are
104
Volume 201
caring for patients who use them and the parent may not have
shared this information with their healthcare provider. This
is a significant concern given the potential hazards of these gen-
erally unregulated supplements, including overdoses of fat-
soluble vitamins, alteration of coagulation, and hepatotoxicity.
Especially concerning is the young age at which some
children are given supplementation. Very young infants or chil-
dren are not able to verbalize physical complaints, and older
ones may have difficulties in doing so because of speech and/
or intellectual delays. To provide best care to children with
Down syndrome, primary care providers need to be proac-
tive and ask about supplement use at each visit. ■
We thank the National Down Syndrome Society, DS-Connect: The Down
syndrome registry, Dr Kishore Vellody from the National Down Syn-
drome Congress, and Heather A. Trammell from the Down Syndrome
Association of Northern Virginia for making our survey available on
their websites. We also thank Laura Abate of the Himmelfarb Library
at George Washington University for research assistance.
Submitted for publication Feb 4, 2018; last revision received Apr 25, 2018;
accepted May 15, 2018
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iceci/enforcementactions/warningletters/2014/ucm556884.htm Ac-
cessed December 31, 2017.
31. U.S. Food and Drug Administration. Warning letter. http://wayback.archive
-it.org/7993/20170112201650/http://www.fda.gov/ICECI/Enforcement
Actions/WarningLetters/2006/ucm076095.htm. Accessed December 31,
2017.
32. The use of Ginkgo, Prozac and Focalin as a ‘treatment’ for Down syn-
drome. Downs Syndr Res Pract 2009;12:170-1.
33. de Boer YS, Sherker AH. Herbal and dietary supplement-induced liver
injury. Clin Liver Dis 2017;21:135-49.
34. Teschke R, Wolff A, Frenzel C, Schulze J, Eickhoff A. Herbal hepatotox-
icity: a tabular compilation of reported cases. Liver Int 2012;32:1543-
56.
35. Frieden J. Unlabeled ingredients in ‘herbal’ supplements seen causing liver
injury. Medpage Today. https://www.medpagetoday.com/MeetingCoverage/
AASLD. Accessed October 25, 2017.
36. Mazzanti G, Di Sotto A, Vitalone A. Hepatotoxicity of green tea: an update.
Arch Toxicol 2015;89:1175-91.
37. International Nutrition, Inc. Nutrivene polyphenol support formula.
http://Nutrivene.com/view_item.php?id=101. Accessed November 15, 2017.
38. Dong HP, Yang RC, Chunag I-C, Huang L-J, Li H-T, Chen H-L, et al. In-
hibitory effect of hexahydrocurcumin on human platelet aggregation. Nat
Prod Commun 2012;7:883-4.
39. Fuentes E, Palomo I. Relationship between Platelet PPARs, cAMP levels,
and P-selectin expression: antiplatelet activity of natural products. Evid
Based Complement Alternat Med 2013;2013:861786.
40. McEwen BJ. The influence of herbal medicine on platelet function and
coagulation: a narrative review. Semin Thromb Hemost 2015;41:300-
14.
41. Evers S, Grotemeyer KH. Piracetam and platelets—a review of labora-
tory and clinical data. Pharmacopsychiatry 1999;32(Suppl 1):44-8.
42. Bull MJ, Saul HM, Braddock HR, Epps GM, Gruen JR, Perrin JM, et al.
Clinical Report- Health supervision for children with Down syndrome.
Pediatrics 2011;128:393-406.
43. Kemper KJ, Vohra S, Walls R. The use of complementary and alterna-
tive medicine in pediatrics. Pediatrics 2008;122:1374-86.
105
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Down syndrome Nutritional Supplement Study

Welcome to our study!

* 1. What is your preferred language?

English

Spanish

Appendix. (Continues)

105.e1 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

Down syndrome Nutritional Supplement Study

Welcome to our study!

This questionnaire is about the use of dietary and nutritional supplements specifically for Down
syndrome. We are NOT asking about the use of typical pediatric multivitamins that are commonly
used for children. The nutritional products that are the focus of this survey are currently NOT
recommended for patients with Down syndrome, but we are aware that some parents do decide to
use them for their children. We would like to learn how commonly these products are used and if
parents have noted any improvement, or any side effects from them. Your answers are completely
confidential and we appreciate your participation.

By clicking “next” you are consenting to participate in this study.

Appendix. Continues.

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Down syndrome Nutritional Supplement Study

Welcome to our study!

* 2. How old is your child with Down syndrome?

0-12 months

13-35 months

3-4 years (not yet 5)

5-6 years (not yet 7)

7-9 years (not yet 10)

10-11 years (not yet 12)

over 12 years

I do not have a child with Down syndrome

* 3. Which statement is correct regarding your use of any supplement or productspecifically to treat your
child’s Down syndrome?

I currently use supplements for my child with Down syndrome

I am not currently using the supplements but have used them in the past

I have never used supplements, although I have heard about them

I have never heard of nutritional supplements for Down syndrome

Appendix. Continues.

105.e3 Lewanda, Gallegos, and Summar

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Down syndrome Nutritional Supplement Study

Bienvenidos a nuestro studio!

Este cuestionario se refiere al uso de suplementos alimenticios y nutricionales específicamente

para el síndrome de Down. NO le preguntamos acerca del uso de los preparados multivitamínicos
pediátricos típicos que se utilizan normalmente para los niños. Los productos nutricionales en los
cuales se centra la presente encuesta actualmente NO se recomiendan para los pacientes que
padecen síndrome de Down, pero tenemos conocimiento de que algunos padres deciden usarlos
para sus hijos. Queremos saber cuán habitual es el uso de estos productos y si los padres han
observado alguna mejoría o algún efecto secundario como consecuencia de su uso. Sus
respuestas son absolutamente confidenciales y agradecemos su participación.

Al hacer clic en “siguiente”, usted da su consentimiento para participar en este studio.

Appendix. Continues.

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Down syndrome Nutritional Supplement Study

Bienvenidos a nuestro studio!

* 4. ¿Cuántos años tiene su hijo que padece síndrome de Down?

0-12 meses

13-35 meses

3-4 años (no cumplió aún 5 años)

5-6 años (no cumplió aún 7 años)

7-9 años (no cumplió aún 10 años)

10-11 años (no cumplió aún 12 años)

más de 12 años

No tengo un hijo/a con síndrome de Down.

* 5. ¿Qué declaración es correcta con respecto al uso de cualquier suplemento o productopara tratar
específicamente el síndrome de Down que padece su hijo?

Actualmente uso suplementos para el síndrome de Down de mi hijo.

Actualmente no uso los suplementos, pero los utilicé en el pasado

No usé nunca ningún suplemento, aunque he oído hablar de ellos.

Nunca oí hablar de los suplementos nutricionales para el síndrome de Down.

Appendix. Continues.

105.e5 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

Down syndrome Nutritional Supplement Study

If you are currently using Down syndrome supplements:

6. If you CURRENTLY use Down syndrome supplements, which do you use? Please mark all that apply.

carnitine

curcumin

folic acid

ginko biloba

green tea extract

HAP Caps

MSB Plus

New Downs dietary supplement(s)

NuTriVene

piracitam

Speak (fish oil with Vitamins E and K)

Other (please specify)

7. How old was your child when you began using these products?

8. Have you noticed an improvement?

Yes

No

Appendix. Continues.

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9. If yes, what has improved?

10. Have you noticed any side effects?

Yes

No

11. If yes, what side effects have you seen?

12. Where did you hear about these products?

through a friend

through information mailed directly to me

through newspaper or other media

through a parent support group

through my physician

through another provider (therapist, educator, etc)

13. How much do you spend per month on supplements?

14. Does your pediatrician know that you use these products?

Yes

No

Appendix. Continues.

105.e7 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

15. If no, why not?

They did not ask

I didn’t think he/she would approve

I didn’t think he/she needed to know because it is not a prescribed medicine

Other (please specify)

16. Does your Genetics doctor know that you use these products?

Yes

No

17. If no, why not?

They did not ask

I didn’t think he/she would approve

I didn’t think he/she needed to know because it is not a prescribed medicine

My child does not see a genetics specialist

Other (please specify)

18. Do you or your child’s other parent use any nutritional supplements (not prescribed by your doctor) for
yourself?

Yes

No

Appendix. Continues.

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* 19. What is your racial/ethnic background?

African American

Asian

Caucasian

Hispanic

Middle Eastern

Other (please specify)

Appendix. Continues.

105.e9 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

Down syndrome Nutritional Supplement Study

Actualmente uso suplementos para el síndrome de Down de mi hijo.

20. Si ACTUALMENTE usa suplementos para el síndrome de Down, ¿cuáles utiliza? Marque todos los
que correspondan.
Carnitina

Curcumina

Ácido fólico

Ginko biloba

Extracto de té verde

HAP Caps (cápsulas para elevar el rendimiento potencial)

MSB Plus

Suplementos alimenticios New Downs

NuTriVene

piracitam

Speak (aceite de pescado con vitaminas E y K)

Otros (especifique):

21. ¿Cuántos años tenía su hijo cuando usted comenzó a utilizar estos productos?

22. ¿Ha observado alguna mejoría?

Si

No

Appendix. Continues.

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23. En caso afirmativo, ¿qué ha mejorado?

24. ¿Ha notado algún efecto secundario?

Si

No

25. En caso afirmativo, ¿qué efectos secundarios ha observado?

26. ¿Cómo se enteró de estos productos?

A través de un amigo

A través de información que me enviaron directamente por correo postal

A través del periódico u otros medios de comunicación

A través de un grupo de apoyo para padres

A través de mi médico

A través de otro proveedor (terapeuta, instructor, etc.)

27. ¿Cuánto gasta en suplementos por mes?

28. ¿Su pediatra sabe que usted utiliza estos productos?

Si

No

Appendix. Continues.

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October 2018 ORIGINAL ARTICLES

29. ¿Por qué no?

No me preguntó.

Pensé que no lo aprobaría.

Pensé que no era necesario que lo supiera porque no es un medicamento recetado.

Otro motivo:

30. ¿Su médico genetista sabe que usted utiliza estos productos?

Si

No

31. ¿Por qué no?

No me preguntó.

Pensé que no lo aprobaría.

Pensé que no era necesario que lo supiera porque no es un medicamento recetado.

Mi hijo no ve a ningún genetista.

Otro motive:

32. ¿Usted o el otro progenitor de su hijo usan algún suplemento nutricional para ustedes (sin que lo haya
recetado el médico)?

Si

No

Appendix. Continues.

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* 33. ¿Cuál es su origen racial/étnico?

Afroamericano

Asiático

Caucásico

Hispano

Medio Oriente

Otro:

Appendix. Continues.

105.e13 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

Down syndrome Nutritional Supplement Study

If you have used these products in the past, but are not using them currently:

34. Which supplement(s) did you use? Please mark all that apply:

carnitine

curcumin

folic acid

ginko biloba

green tea extract

HAP Caps

MSB Plus

New Downs dietary supplement(s)

NuTriVene

piracitam

Speak (fish oil with Vitamins E and K)

Other (please specify)

35. How old was your child when you began using these products?

36. Did you notice any improvement?

Yes

No

Appendix. Continues.

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37. If yes, what has improved?

38. Did you notice any side effects?

Yes

No

39. If yes, what side effects have you seen?

40. Where did you hear about these products?

through a friend

through information mailed directly to me

through newspaper or other media

through a parent support group

through my physician

through another provider (therapist, educator, etc)

41. Does your pediatrician know that you use these products?

Yes

No

42. If no, why not?

They did not ask

I didn’t think he/she would approve

I didn’t think he/she needed to know because it is not a prescribed medicine

Other (please specify)

Appendix. Continues.

105.e15 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

43. Does your Genetics doctor know that you use these products?

Yes

No

44. If no, why not?

They did not ask

I didn’t think he/she would approve

I didn’t think he/she needed to know because it is not a prescribed medicine

My child does not see a genetics specialist

Other (please specify)

45. How long was your child treated with the supplements before you stopped using them?

46. Why did you stop using the supplements?

I was not seeing any improvement

I was seeing side effects that I did not like

The supplements were too expensive

I was advised to stop using them

Other (please specify)

47. Do you or your child’s other parent use any nutritional supplements (not prescribed by your doctor) for
yourself?

Yes

No

Appendix. Continues.

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* 48. What is your racial/ethnic background?

African American

Asian

Caucasian

Hispanic

Middle Eastern

Other (please specify)

Appendix. Continues.

105.e17 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

Down syndrome Nutritional Supplement Study

Si usó estos productos en el pasado, pero no lo hace actualmente:

49. ¿Qué suplementos utilizó? Marque todos los que correspondan:

Carnitina

Curcumina

Ácido fólico

Ginko biloba

Extracto de té verde

HAP Caps (cápsulas para elevar el rendimiento potencial)

MSB Plus

Suplementos alimenticios New Downs

NuTriVene

piracitam

Speak (aceite de pescado con vitaminas E y K)

Otros (especifique):

50. ¿Cuántos años tenía su hijo cuando usted comenzó a utilizar estos productos?

51. ¿Observó alguna mejoría?

Si

No

Appendix. Continues.

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52. En caso afirmativo, ¿qué mejoró?

53. ¿Notó algún efecto secundario?

Si

No

54. En caso afirmativo, ¿qué efectos secundarios observó?

55. ¿Cómo se enteró de estos productos?

A través de un amigo

A través de información que me enviaron directamente por correo postal

A través del periódico u otros medios de comunicación

A través de un grupo de apoyo para padres

A través de mi médico

A través de otro proveedor (terapeuta, instructor, etc.)

56. ¿Su pediatra sabía que usted utilizaba estos productos?

Si

No

57. ¿Por qué no?

No me preguntó.

Pensé que no lo aprobaría.

Pensé que no era necesario que lo supiera porque no es un medicamento recetado.

Otro motivo:

Appendix. Continues.

105.e19 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

58. ¿Su médico genetista sabe que usted utiliza estos productos?

Si

No

59. ¿Por qué no?

No me preguntó.

Pensé que no lo aprobaría.

Pensé que no era necesario que lo supiera porque no es un medicamento recetado.

Mi hijo no ve a ningún genetista.

Otro motive:

60. ¿Por cuánto tiempo recibió su hijo tratamiento con los suplementos antes de suspender su uso?

61. ¿Por qué dejó de usar los suplementos?

No veía ninguna mejoría.

Estaba notando efectos secundarios que no me gustaban.

Los suplementos eran muy costosos.

Me aconsejaron dejar de usarlos.

Otro motivo:

62. ¿Usted o el otro progenitor de su hijo usan algún suplemento nutricional para ustedes (sin que lo haya
recetado el médico)?

Si

No

Appendix. Continues.

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* 63. ¿Cuál es su origen racial/étnico?

Afroamericano

Asiático

Caucásico

Hispano

Medio Oriente

Otro:

Appendix. Continues.

105.e21 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

Down syndrome Nutritional Supplement Study

If you have heard about these supplements but have never used them:

64. Have you received any advertisements through mail or email for these products?

Yes

No

65. Do you or your child’s other parent use any nutritional supplements (not prescribed by your doctor) for
yourself?

Yes

No

66. Why did you decide against using these products?

they were too expensive

my doctor did not suggest using them

I was concerned about side effects

I do not feel they are helpful

Other (please explain)

Appendix. Continues.

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* 67. What is your racial/ethnic background?

African American

Asian

Caucasian

Hispanic

Middle Eastern

Other (please specify)

Appendix. Continues.

105.e23 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

Down syndrome Nutritional Supplement Study

Si ha oído hablar de estos suplementos, pero nunca los utilize:

68. ¿Ha recibido publicidad sobre estos productos por correo postal o vía correo electrónico?

Si

No

69. ¿Usted o el otro progenitor de su hijo usan algún suplemento nutricional para ustedes (sin que lo haya
recetado el médico)?

Si

No

70. ¿Por qué decidió no usar estos productos?

Eran muy costosos.

Mi médico no sugirió usarlos.

Me preocupaban los efectos secundarios.

No creo que sirvan.

Otro motivo (especifique):

Appendix. Continues.

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* 71. ¿Cuál es su origen racial/étnico?

Afroamericano

Asiático

Caucásico

Hispano

Medio Oriente

Otro:

Appendix. Continues.

105.e25 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

Down syndrome Nutritional Supplement Study

If you have never heard of nutritional supplements for children with Down syndrome:

* 72. What is your racial/ethnic background?

African American

Asian

Caucasian

Hispanic

Middle Eastern

Other (please specify)

Appendix. Continues.

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Down syndrome Nutritional Supplement Study

Si nunca oyó hablar de los suplementos nutricionales para niños con síndrome de Down

* 73. ¿Cuál es su origen racial/étnico?

Afroamericano

Asiático

Caucásico

Hispano

Medio Oriente

Otro:

Appendix. Continued.

105.e27 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

Table I. Supplements listed by parents that are or were previously given to their child with Down syndrome
Categories of
supplements Compounds Brands/manufacturers Number Total / %
Adaptogens* Ashwaganda 4
Brahmi 1
Dimethylglycine 2
Other Menstrual Regulator; Kshamika MD, Los Angeles, California 1
Rhodiola (arctic root/golden root) 1
9/0.6
Alternative foods Bee pollen 1
Camel milk 1
Colostrum 1
Goat's milk 1
Royal jelly 1
5/0.3
Amino acids “Custom blended” 1
Generic 2
“Peptide” 1
Creatine 1
Taurine 1
L-theanine 1
L-tryptophan 1
Tyrosine 1
9/ 0.6
Antioxidants Astaxanthin 1
Carnosine 4
Co-enzyme Q-10 18
MitoQ; MitoQ Limited, Auckland, New Zealand
NanoCell-Q; Aliso Viejo, California
Curcumin 143
Elderberry 5
Sambucol; Pharmacare/PAC Health, Toronto, Ontario, Canada
Glutathione 17
Green tea extract/EGCG 130
Lutein 1
Lycopene 8
N-acetyl-cysteine (NAC) 2
Polyphenols 9
Resveratrol 43
Trehalose 4
Zeanthin/zeaxanthin 1
386/25.8
Carnitine Carnitine 36
Carnitex; ZYMOGEN; Orlando, Florida
36/2.4
Combination Ambrotose; Mannatech, Coppell, Texas† 1
supplements
ANRC Essentials; Autism Research Center, Peoria, Arizona 1
Brain Sustain; XYMOGEN, Orlando, Florida 1
Changing Minds Protocol 1
Brain MEMORY; Douglas Labs, Pittsburgh, Pennsylvania 1
HAP CAPS; Warner House, Inc, Tucson, Arizona 2
MitoSpectra; MitoMedical, Teaneck, New Jersey 1
MSB Plus; Nutrichem, Ottawa, California 7
Nerium's EHT; Nerium International, LLC, Addison, Texas 1
New Down Syndrome Supplements 3
Nutrivene; International Nutrition, Middle River, Maryland 197
Nutrivene Polyphenols; International Nutrition, Middle River, Maryland 7
NutriVerus; Mannatech, Coppell, Texas 1
Pedi-Active; Natures Plus, Melville, New York‡ 1
Plexus Triplex Combo; Plexus Worldwide, Scottsdale, Arizona† 3
Plexus BioCleanse; Plexus Worldwide, Scottsdale, Arizona† 1
Plexus ProBio5; Plexus Worldwide, Scottsdale, Arizona† 1
Plexus Slim; Plexus Worldwide, Scottsdale, Arizona 1
Protandim; LifeVantage Corporation, Sandy, Utah† 1
ReStore; Biomic Sciences LLC, Charlottesville, Virginia 2
Vayarin; VAYA Pharma, Columbia, Maryland† 2
236/15.8
(continued)

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Table I. Continued
Categories of
supplements Compounds Brands/manufacturers Number Total / %
Enzymes Nonspecified 3
Biopterin (coenzyme) 1
Digestive enzymes 6
PQQ (coenzyme) 14
24/1.6
Essential oils Nonspecified 2
Coconut oil (carrier oil) 3
Combination 2
DoTERRA Oil Protective blend; doTERRA International, Pleasant Grove, Utah†
Ning Xia Red and Essential Oils; Young Living Essential Oils, Lehi, Utah†
Ginger (oil?) 1
Hemp seed/CDB (cannabidiol) oil 3
Lemongrass 1
Wild oregano oil 1
13/0.9
Fats/fatty acids Essential fatty acids 3
Choline/phosphatidylcholine/DMAE Body Bio PC; BodyBio Inc, Millville, New Jersey 27
DHA 30
Fish oil (inc fermented cod liver oil) 56
Flax seed/flax seed oil (omega 3) 5
Gamma linoleic acid (inc evening primrose oil) 2
Lecithin (inc sunflower lecithin) 3
Omega 3 (DHA/EPA, ALA, krill oil) 23
Algae Omega; Nordic Naturals, Watsonville, California
Omega 6 2
Omega 9 (inc olive oil) 2
“Omegas” 6
Omega 3,6,9 1
Pro-EFA; Nordic Naturals, Watsonville, California
Phospholipid/phosphatidylserine 1
161/10.8
Formulas/nutrition 5
Ensure; Abbott Laboratories, Chicago, Illinois‡
Isagenix Protein Shake; Isagenix, Gilbert, Arizona
Pediasure; Abbott Laboratories, Chicago, Illinois
Peptamin, Jr; Nestle Health Science, Florham Park, New Jersey
5/0.3
Hormone related Melatonin 13
Thyroid support, porcine thyroid 2
Nature Thyroid; RLC Laboratories, Cave Creek, Arizona
15/1.0
Laxatives 2
Fruit-Eze; Fruit-Eze, Inc., Portland, Oregon
Prunelax; Garden House Laboratories, Miami, Florida
2/0.1
Methyl donors Trimethylglycine (Betaine) 4
4/0.3
Minerals Calcium 4
Chromium picolinate 3
Copper 1
Iodide 1
Iodine 4
Min-Tran; Standard Process, Palmyra, Wisconsin
Iron/lactoferrin 12
Ferrochel Iron Chelate; Albion Laboratories, Layton, Utah
Lithium 4
Magnesium (spray, cream, or oral) 30
NeuroMag; Life Extension, Ft Lauderdale, Florida
“Minerals” 1
Natrum phosphoricum 1
Nat Phos 6x; Unda; Harze, BE
Selenium 9
Zinc (oral or cream) 25
95/6.4
Nootropics§ Piracetam; Pure Nootropics, Albuqerque, New Mexico 19
Prevagen; Quincy Bioscience, Madison, Wisconsin‡ 1
20/1.3
(continued)

105.e29 Lewanda, Gallegos, and Summar

October 2018 ORIGINAL ARTICLES

Table I. Continued
Categories of
supplements Compounds Brands/manufacturers Number Total / %
Other plant/fruit Acai 1
products
Beet powder 1
Beta-glucan 3 (cell wall sugar) 3
Blueberry powder 8
Brown rice kernel RiSoTriene; Integris Global, Austin, Texas† 1
Cascara (from coffee cherries) 1
Chlorella (blue-green algae) 1
Combination product Juice Plus powder; Juice Plus+, Collierville, Tennessee 3
Garlic 2
Ginko biloba 46
Mango powder 21
Papaya powder/extract 8
Pulsatilla 1
Quercitine 2
Triphala 1
Vinpocetine 1
101/6.8
Prebiotics 2
2/0.1
Probiotics 67
67/4.5
Psychotropic Fluoxetine ¶ 2
drugs
Focalin XR; Novartic Phamaceuticals Corp., East Hanover, New Jersey¶ 1
Namenda; Allergan, Dublin, Ireland¶ 2
5/0.3
Vitamins Unspecified 4
Vitamin A 4
Vitamin B (unspecified) 17
B1 2
B3 (nicatinamide) 1
B6 1
B7 (biotin) 4
Hair, Skin, and Nails; Nature's Bounty, Bohemia, New York
B9 (folate) 11
Quatrefolic MTHFR; Gnosis S.P.A., Desio, (MB), Italy
Deplin l-methylfolate; Alfasigma S.P.A., Milan, Italy¶
(Folic acid) 37
(Folinic acid) 10
Leucovorin; Taj Phamaceuticals, India¶
B12 27
Vitamin C 34
Acerola C; Nature's Plus, Melville, New York
Vitamin D 34
D3 15
Vitamin E 13
Sun-E; NOW Foods, Bloomingdale, Illinois
Vitamin K 1
K2 3
Multivitamins 53
K-force (vitamins D3 and K2); Ortho Molecular Products, Woodstock, Illinois
Kids Complete + Fiber; SmartyPants, Inc., Marina Del Rey, California
Speak; (vitamins E and K); Nourish Life/lifetirents, Lake Bluff, Illinois
Vitamin/mineral blend 12
Centrum Vitamints; Pfizer, New York, New York
Vitaspectrum; Klaire Labs, Reno, Nevada
283/18.9
Unable to classify 17
17/1.1
Total 1495/99.9

HAP CAPS, High Achievement Potential Capsules.

*“Adaptogenic” herbs are believed “to increase the body's ability to resist the damaging effects of stress and promote or restore normal physiologic functioning.”.11
†Product has received a Warning Letter from the Food and Drug Administration.
‡Product has been investigated by the Federal Trade Commission.
§“Nootropic” agents claim to “improve the efficiency of the higher telencephalic functions of the brain involved in cognitive processes.”.12,13
¶Product is available by prescription.

Patterns of Dietary Supplement Use in Children with Down Syndrome 105.e30