Pediasure, Nutrivene, Juice Plus, green tea extract… manufacturers and parents tout dramatic differences when these alternative therapies are used in children with Down syndrome.
Medical experts and parents share tips for spotting potential vs. propaganda.
Parents of kids with Down syndrome are a ripe audience for marketing ploys, and of course we’d do anything for our kids if we thought it would help. My 3-year-old son, Charlie, has Down syndrome, and for several years now I’ve lurked in various Down syndrome communities online and tried to weed through parents’ persuasive plugs for various supplemental treatments.
To date, we’ve taken a conservative approach, in as much as “Flintstones Gummies” and “conservative” belong in the same sentence. We’ve worked with speech, physical and occupational therapists but have never set foot down the path of homeopathic or supplemental “treatments.”
Advice from advocacy groups
National Down syndrome advocacy organizations and medical experts have maintained a steady perspective on the chatter. Don’t rely on anecdotal results, and look for empirical evidence from clinical trials.
The National Down Syndrome Society’s website provides tips for weighing the pros and cons of alternative therapies.
Tips for parents
Dr. Brian Skotko is co-director of the Down Syndrome Program at Massachusetts General Hospital and has dedicated his professional life to researching, caring for and advocating for individuals with Down syndrome. His personal motivation? His sister, Kristin, who has Down syndrome.
SheKnows asked how Mass General’s Down Syndrome Program approaches or responds to the topic of alternative therapies. Dr. Skotko shared the following tips.
“For all alternative medicines and treatments, I encourage parents to think carefully about the answers to the following questions:
- Has there been sufficient evidence documenting the efficacy of the treatment? The gold-standard research would be a ‘double-blind placebo controlled trial.’ I believe that people with Down syndrome deserve to benefit from quality research just like the rest of the population.
- Are there any known side effects? Sometimes, it’s important to ask if the treatment has been tested long enough to be able to assess where long-term side effects might be known.
- What are the costs? Expenses can take the form of time and/or money, and parents will need to balance how much time they invest in unproven therapies versus other opportunities or experiences.”
Do your homework
“At times, Down syndrome specialists offer advisories against some alternative therapies,” Dr. Skotko says. One example addresses the use of Ginkgo, Prozac and Focalin as a “treatment” for Down syndrome.
Calls for caution and research
Dr. Michael M. Harpold is chief science officer for the Down Syndrome Research and Treatment Foundation (DSRTF). He points out that “scientifically [and] medically acceptable evidence-based methodologies are essential” in identifying effective treatments. “That is a fundamental principle in DSRTF’s Research Strategy & Program,” Dr. Harpold said, adding that it’s impossible to determine a potential treatment’s efficacy “without … quality, evidence-based clinical trials [or] studies.”
“Individuals with Down syndrome deserve the same highest quality evidence-based research and clinical trials [and] studies as provided for others with any other disorder. This should be what all in the [Down syndrome] community should demand regarding any potential therapy, including such potential alternative therapies.”
Down syndrome “underfunded”
Dr. Skotko urges support for more research, as well. “In their hunt for information, parents might be frustrated that there is a lack of research being performed about Down syndrome. Down syndrome is an under-funded genetic condition, especially when compared to other more infrequently occurring conditions. Motivated parents can make a difference by participating in the charges set forth by DSRTF and RDS (Research Down Syndrome).”
One mom’s approach
Melissa Kline Skavlem blogs at Yo Mamma Mamma and is mom to a daughter with Down syndrome. Skavlem dedicated a 2010 post to creating a list of much-hyped alternative therapies for children with Down syndrome.
“I have looked at everything on the list, and made decisions on [my daughter’s] behalf in most cases not to do any of them, mostly because I can’t find enough evidence-based research that they work (and with some on the list I’ve heard for five years that the evidence-based research is coming “soon.”)
She revisited the idea later that year, compiling an eight-step protocol she uses before pursuing any alternative therapies.
A laundry list approach?
Other parents take decidedly different approaches. For example, Andi blogs at Down Syndrome: A Day to Day Guide. She has a 3-year-old son with Down syndrome whose list of supplemental therapies rivals a laundry list for a family of 12.
Dr. Skotko shares this reminder. “Parents will need to balance how much time they invest in unproven therapies versus other opportunities or experiences.
“Parents should ask themselves, ‘Am I spending enough time just being a mom and a dad, or am I super-focused on a particular therapy where I might be sacrificing quality family time?’
“Oftentimes, there is no one right answer, but I recommend that parents seek the input of their child’s pediatrician or Down syndrome specialist.”