Wednesday, December 28, 2011

Vitamin Therapy for People with Down syndrome: What’s All the Controversy About?

Since Levi was born, I have been researching what actions I can take to maximize his potential. There is a lot of controversy over using vitamin therapy for people with Down syndrome. It is a polarizing topic. Parents are either strongly in favor or strongly against it. Some parents have made extravagant claims about supplements even taking away the facial characteristics associated with Down syndrome. Others say that vitamin therapy for children with Down syndrome is a waste.

Just like with other topics, when I search for information, I like to learn all I can, synthesize my findings, and use the beneficial information that works for me. I try to sift out the crazy and keep the good when it comes to controversial topics such as this one because it is hard to find any information that is balanced. At the bottom of this post, I have put a few links to websites that I have found especially interesting. There is a LOT of information out there.

I am currently reading “Down syndrome and Vitamin Therapy” by Kent MacLeod. My path to this book started with a recommendation from a visitor at our church. Her son is 16 years old, has Down syndrome, autism, and such serious eye problems that he has a service dog. The mother recommended a supplement that she gives to her son. She said he very rarely gets sick and has seen a big difference in him since he has been taking it. I checked it out online and ordered the same for Levi. (The dosage changes with a person’s age in case you’re wondering why I ‘d give him the same supplement as a 16 year old.) Kent MacLeod is the one who formulated the supplement.

In his book, he states that the extra chromosome in Down syndrome is similar to a factory worker who works twice as fast on the assembly line than the other workers. The result is too much of some materials and too little of others. The entire process is affected. Research shows that there are enzymes in the 21st chromosome that are overly active in people with Down syndrome. Children with Down syndrome also have inadequate levels of zinc, selenium, vitamin A, and vitamin D. Supplements can supply people with the nutrients they are missing or cannot get from food. They can also give people nutrients the body should make on its own but cannot because “essential cofactors are missing.” Children with Down syndrome have altered levels of nutrients and excessive illnesses, and I, as a parent, want to do what I can to improve my child’s health. I have read about people constantly doing blood tests on their children and intricately giving supplements to keep vitamin and nutrient levels in check. I personally wouldn’t want to put myself or my child through such a rigorous process., and have no idea what that would cost. But I do believe in the nutritional benefits of supplements. Just as I took prenatal vitamins to give my body what it needed during pregnancy, I think Levi can benefit from getting certain vitamins and minerals that he needs. The pediatrician just recommended probiotics to help with Levi’s extreme gas pains, and, of course, I will be getting some for him once I decide which ones are best.

Kent MacLeod says, “Treat the problem, not the Down syndrome.” That’s important advice. Chronic bowel problems can be helped with digestive enzymes. It doesn’t matter if the bowel problems are the result of Down syndrome or not. Digestive enzymes can help either way, so why would we keep these benefits away from our children just because they have Down syndrome and digestive problems are expected? The same goes for memory problems, excessive ear infections, and the propensity to get leukemia and Alzheimer’s.

The supplement Levi is on is called MSB Plus. It isn’t cheap (about $100 for a year’s worth for his dosage), but neither is the gas it takes to get him to the doctor’s office all the time for repeated infections. (By the way, “Down syndrome and Vitamin Therapy” has a whole chapter devoted to antibiotics and infections. The information is well worth reading if you are like me and have had your child on antibiotics over and over again for infections.) And I would pay about any price to make sure Levi has clear, understandable speech. This, in part, comes from good hearing, which he will not have if he experiences excessive ear infections.

MSB Plus is just a powder that gets mixed into any drink. It comes in different flavors, and Levi doesn’t mind taking it at all. One tiny little scoop a day is all it takes. He used to be constipated all the time and would have a hard, uncomfortable-to-pass bowel movement only every 3-7 days. He has a soft bowel movement every day now. He has been taking MSB Plus for about two months and the bowel movements changed within a week. His energy has improved, and I have had several people (who didn't know we have started something new) comment on Levi looking healthier and being less lethargic.

This is my personal journey I am sharing in hopes of answering some questions for others and to give some insight to family and friends about part of our journey.
Some Articles Showing Both Sides of The Controversy (all of which are pretty extreme to one side or the other):

Down Syndrome: The Nutritional Treatment of Dr. Henry Turkel, M.D.

Multi-Nutrient Formulas and Other Substances as Therapies for Down Syndrome: An Overview (The authors are against vitamin therapy)

Nutritional Supplements for Down Syndrome: A Highly Questionable Approach
A rebuttal to the above article

An Interview with Dixie Lawrence


Jenny said...

Excellent post April!

I have also noticed that people are either for this or dead set against it.
I don't understand why a person would be strongly against it though...One Mom I know said its like this: We have our children do PT, OT, SP and so on to help improve their lives and their abilities and development...And Vitamin Therapy would be the exact same thing...Its simply another method of helping our child.

It is something each parent would need to look into for themselves...Thanks for adding the links to the articles!

Laura said...

I just started Ben on a vitamin from Nutrivene 2 weeks ago. He is currently taking half the dose and I'm to build up to 1/4 tsp a day. That isn't very much. Over the next few weeks I'll be adding in a couple more supplements. I'm taking notes and I hope it will make Ben healthier. I worry more about all the scary health problems that come with Ds more than the cognitive delays. Since he's been taking it, he's now reaching for me and babbling a lot more. I'll never know if it was the vitamin or if it was just Ben's time to do those things but I feel good knowing that I'm trying my best to help Ben!

lovemy3 said...

I know a lot of people who are 100% and then the ones that 100% against. We had Hailey on Nutrivene. We ran out and I'm seeing if I notice a difference with her one them vs just on poly-vi-sol. I was definitely for them before but she has done so much in the week she has been off of I'm not sure sure. Why does it all have to be so hard :-)

April Vernon said...

Thank you all for your comments. I'd love updates on the things you are trying and what you learn from your own experiences along the way.

Karrie said...

Thank you so much for posting what you are doing April! I have been very curious about the supplements. Everytime I have asked a doctor about it, they are definately very much against it. I would love to do anything that is going to help Madi......I am going to get that book you mentioned and read up on it.

Keep us posted on what differences you notice in Levi!

Runningmama said...

Thank you so much for this, I have been so confused and on the fence about all the info out there on this topic, but I think I will take your advice and do some reading and add some supplements to Emily's diet, she too has a hard, painful poop every 3 days and when she gets a cold, it is always much more severe than my other kiddos. Thanks again!

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