When you get the diagnosis of Down syndrome (DS) for your baby, you are also handed a laundry list of medical issues that are co-morbid with Down syndrome. In addition to the medical issues your baby needs immediate attention for, you are asked to monitor for more; frozen grimace for infantile spasms, regular blood-work to check for thyroid and leukemia, and half-a-dozen specialist appointments. Babies with DS meet their developmental milestones on a slower timeline than typical, and the wait for the first step and the first word can be long and excruciating for the parents. You connect with other parents raising kids with DS, compare notes on progress, exercises to do, toys to buy, anything to help your child. Once a few kids of the same age as your kid start acquiring new skills that you have been working on for months with your kid, anxiety hits a new high, and you start wondering, what am I missing? Then someone mentions supplements that they are giving their child, and you jump at it.

As a parent of a toddler with Down syndrome, I got to that point when my son was about 6 months old, and started reading up on supplements. I spent many weeks and months looking at all available data and parent testimonials, but I could not find any unequivocal and concrete evidence to show that supplements work. I found tons of research articles on the topic, but they fall into two broad categories: studies in early stages where the drugs have only been tested on laboratory animals and poorly designed studies that do not meet accepted standards for testing efficacy in humans, such as controlled clinical trials. While there is some early and exciting understanding of bodies and brains of individuals with Down syndrome, the science is just not there yet to find a way to mitigate the various effects of Down syndrome on individuals.

Many mainstream pediatricians and DS clinics refuse to prescribe any supplements for individuals with Down syndrome. National Down Syndrome Society (NDSS) also published a position statement on supplements that says “The administration of vitamin therapies (e.g. the vitamin/mineral/amino acid/hormone/enzyme combination) has not been shown to be of benefit in a controlled clinical trial; the rationale advanced for these therapies is unproven; and the previous use of these therapies has not produced any scientifically validated, significant results. Moreover, the long-term effects of chronic administration of many of the ingredients in these preparations are unknown.”[i]

All of this information is widely known and available, but parents still believe that using supplements can help their little one. They learn the art of supplementation from secret Facebook groups and blogs, and those who can afford to, consult naturopaths to guide them. The most popular supplements are multivitamins that are “specially formulated for kids with DS”. If the medical community considers use of multivitamins for healthy kids unnecessary[ii], why would kids with DS benefit from vitamin megadoses (up to thousand times the recommended amounts)?[iii] Some naturopaths prescribe thyroid meds to kids whose thyroid test results are normal as per the pediatrician and endocrinologist. Taking thyroid meds when not clinically indicated can put undue pressure on the heart, and also result in loss of bone density.[iv] Some supplements may not unsafe, but are likely just an expensive placebo.

All children develop and learn new skills as they grow; it is a basic law of nature. Their brains and bodies are constantly growing and developing, but each new skill seems to appear suddenly, and out of nowhere. When you give supplements, your child is still going to continue his/her natural development, but now the supplements get credit for them, and you are one more parent touting the success of supplements.

When you get down to the specifics of what it is the supplement will help with, supplement makers and promoters make no promises. They cannot, because the data is not there (and also because FDA would come after them for making unsubstantiated claims). Given all this, why are so many parents going against mainstream medical advice and chasing after the pseudoscience of supplements?

The devotion to supplements stems from fear, of Down syndrome, and our kid’s uncertain future. It is an attempt to control the uncontrollable. But what is it that we are controlling with supplements, what is the problem we are trying to solve? Is it our emotional issues that we are trying to resolve or is it truly our kids that we are helping? People with Down syndrome deserve access to drugs and supplements that have been proven safe (at a minimum) and effective (ideally) in clinical trials, just like everyone else.

[i] http://www.ndss.org/About-NDSS/Media-Kit/Position-Papers/Vitamin-Therapy-Position-Statement/

[ii] http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/expert-answers/multivitamins/faq-20058310

[iii] https://nobsaboutds.wordpress.com/2017/03/02/a-no-jargon-rebuttal-to-nutrivene/

[iv] http://www.health.harvard.edu/blog/for-borderline-underactive-thyroid-drug-therapy-isnt-always-necessary-201310096740

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Sruthi Muralidharan is a happy mom to a mischievous toddler who has Down Syndrome, and was accidentally named after Texas.  She loves science, and followed her passion for it all the way to a PhD.

She is a research engineer in a semiconductor company by the day. On weekends, she runs a project called “Stitch a dream” with local quilters to supply weighted blankets to local kids that need them.