Mom with son with Down syndrome

Pediasure, Nutrivene, Juice Plus, green tea extract… manufacturers and parents tout dramatic differences when these alternative therapies are used in children with Down syndrome.

How to make the right decision for your child

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."

Read more about parenting a child with Down syndrome

The link between Alzheimer's disease and Down syndrome
Divorce: Does "Down syndrome advantage" exist?
I have Down syndrome and run my own business

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Comments

Comments on "Alternative therapies for kids with Down syndrome"

Simone January 13, 2014 | 4:06 PM

Tamara, Andi IS highly intelligent, helpful, gives her time freely to others, and most importantly - she is NICE! You are missing out. Big time. And so is your child. :(

Tamara December 30, 2013 | 10:31 AM

Just because a "conventional" doctor doesn't agree with you doesn't mean their expertise in Down syndrome is less than yours. Just because I don't agree with giving my son unproven therapies doesn't mean I'm not intelligent or have no courage. These conversations only create division in the DS community. Personally, after sixteen years of reading these types of comments, I'm sick and tired of the arrogance and nastiness of the pro-supplement community. I made an informed decision. I don't agree with you. The science isn't solid enough for me. If it is for you, then go for it; but stop disrespecting other people's decisions by acting like you're so courageous or more intelligent than the rest of us. You're not.

Rob from Scotland December 30, 2013 | 5:49 AM

Q: What do you call an alternative therapy that works? A: A medicine! There are NO proven therapies that work with all children or adults with DS, so buyer beware! And speaking as the father of a 19 year old, very healthy, young man with DS, who has never seen the inside of a hospital, skis, and sails, I am very glad that we never tried any of these 'miracle cures' - just plenty of fresh air, healthy food, and exercise !

Lynn Lugibihl December 28, 2013 | 6:33 AM

While it is true, all children should benefit from research when it is available, it is just as true that all children should benefit from responsible responses to their biochemical needs evidenced by labs. The extra chromosome necessarily alters the "normal" balance of biological pathways and "chemistry" in a child. Each child is different. Enters in the difficulty of relying only on researched based modalities. One size does not fit all-especially with a child with DS. Research and it's guidance can offer enlightened opinions, but observations and periodic serum and urine analysis can offer valuable guidance as well. Expert advice can enhance the safety angle for any of these supplement approaches. I will say, to some degree, the cost of energy, time and money weighed against other quality of life factors is always an issue and not necessarily an easy one. May we be wise.

Lianne Spears December 27, 2013 | 7:47 PM

Well, I think you made one really good point. Seek out a Down syndrome specialist! I challenge you to find a specialist in DS who Ignores the biochemical imbalances that present in Trisomy 21, or the thyroid issues, or the gut health issues, the list goes on. And if you have found a "specialist" who ignores these issues, then they are not a Down syndrome specialist. Ask your support docs the last piece of medical research they read and understood regarding Trisomy 21, and there lies your answer. So maybe before you air your laundry, check the science. It's there.

Mary Beth December 27, 2013 | 10:21 AM

I don't know where we would be today with my son if we didn't try alternative therapies and vitamins and supplements. I've seen a huge difference in him! It does cost quite a bit and it is a lot of work but it's worth it. I want to do everything I possibly can to help him NOW and not wait. I consult with two doctors who order his blood tests, tell me where he is lacking and which vitamins to buy. I'm so grateful for the brilliant people in my life who have advised us and introduced us to other forms of therapy rather than just letting that extra chromosome have it's way in my son's body. That extra chromosome is active and this is the best way we know to combat it.

Marilyn December 27, 2013 | 10:07 AM

Wow! Way to discourage parents from trying things that just might help their child! I have three girls who all happen to have Down Syndrome. We have used various alternative therapies and treatments with them over the years. Some we loved, some we discarded. But to discourage families from trying things, simply because the established medical community hasn't given it the golden seal of approval? How incredibly irresponsible! Traditional medicine does not have all the answers, and never will, because they can't think outside their narrow boxes. So what good does it do my girls, right now, to wait and see IF any of these approaches will ever be formally approved of by them? Try whatever you feel might be of help! Go with your parental instincts, making the best decisions you can for your child. Don't wait for people who might NEVER catch up and accept things we already KNOW have benefit for our kids.

Kati December 27, 2013 | 7:44 AM

Every scientific proof has once been a hypothesis and unproven. As if all of us parents who use supplements were so extremely stupid we continue using some therapies or methods not working and use our money on that. Just on contrary. I think it requires intelligence and courage to thing outside the box. Thank God we have persons who do.

Rosalie Newell-Wagner December 24, 2013 | 9:51 AM

Parents do need to look at alternative as well as traditional therapies for their children with Down syndrome. To sit back and wait for the research may mean many years of developmental delays in our children. Some children with Down syndrome seem to develop along wonderfully, however, there are those who do not and with additional, careful supplemental support improvements in lives are being made. Many parents are educating themselves so they can learn and know which options and treatments might be best for their children.

Lynette December 23, 2013 | 3:51 PM

Let me start by letting you know I do not have a child with Down Syndrome. I do, however, have 3 wonderful healthy children. And guess what? I give them supplements. And feed them organically. They get chiropractic treatments and craniosacral therapy. I do everything I can for them. If I were to follow mainstream medicine my daughter would be on steroids for allergies. We declined and treated her naturally. Her allergies are gone. My son? He would have once been on antibiotics when all he had was earwax. EARWAX! Following mainstream medicine isn't always your best bet. If I were to ever have a child with an extra chromosome you better believe I would do everything possible to give them the best life possible. The moms like the one mentioned above with the "laundry list" of supplements should be given credit. Everyone has the option of raising their child in whatever way they choose. If only we lived in a world where you could do so without people passing judgement. I don't think these parents are falling victim to marketing ploys any more than the rest of us. And who cares if they are? It's their money, they can spend it however they please. No judgement from me.

Heather December 22, 2013 | 11:50 AM

Links aren't showing properly... www. medmaps. org. :) None in my area, sadly, but perhaps it'll help someone else.

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