One of the tricky questions about Down syndrome

And by that I mean:  supplements.

Recently a new mom to a baby with DS wrote me and was wondering if the thoughts I shared in my book about supplements, such as Nutrivene-D and others, were the same.  

A lot of things have happened since I first was thinking about the subject of supplements, when Avery was just a baby.  Some things had me leaning toward trying it; others had me shying away from the idea.   The most recent example is Avery’s heart surgery.  On the one hand, I believe he came through it so well and recovered so quickly because he was strong and in good health.  To date, we have not given Avery anything more than a children’s multivitamin. If he hadn’t been healthy, I’m sure I would be looking for ways to boost his immune system, and that might include a special vitamin regimen. 

But on the other hand, there is the fact of the surgery itself.  I was glad Avery’s system was clear, and that there was no risk of any complications from any megadoses of vitamins or any herbal supplements that needed to be accounted for.  In this instance, it was one less thing to worry about.

I think the decision of what to feed and how to feed your baby is a very personal one–and I continue to think of supplements as a corollary to feeding choices. 

I also want to remember not just the trisomy, but the other 46 chromosomes in each baby, which makes our children similar, but also very unique.  So there might not be a one-size-fits all answer, here.

I hope other parents will share their thoughts and experiences in the comments?  It’s been a while since I’ve done much research, and I’m not as up-to-date as I’d like to be.   Because this is a topic where parents are really on the front lines, I want to ask you all, the best experts:  what advice would you give new parents about supplements?

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About jennifergg

I am a daughter, sister, wife, and mother to three sons. I am a cookie-baker, storyteller, kisser-of-boo-boos, and an advocate for children with disabilities. Pinwheels is my blog about life as the mother of a boy with Down syndrome. I also have a website at www.jennifergrafgroneberg.com
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29 Responses to One of the tricky questions about Down syndrome

  1. cate says:

    Hey Jennifer. I wrote a post about this a while ago, so I’ll just leave the link, if that’s okay. It is such a tough subject.

    http://i-dont-know-what-to-say.blogspot.com/2009/05/extra-extra.html

  2. I believe supplements are important for any diet but I am not a supporter of Nutrivene-D and the like. Joseph was born with no heart defect and his typical twin was born healthy as well. My boys take a children’s mulitvitamin and I am thinking of adding some Omega-3 soon. Joseph has always been quite healthy and I am grateful for that. I believe each parent needs to make this decision after schooling themselves well in the subject. Personally, I don’t buy into the Nutrivene regimen but many parents do. Joseph recently had his yearly IFSP and is doing fantastic. He is showing no cognitive or social delay at this time (he is 25 months old) and his vocabulary is bustling in growth. He currently signs about 10 things and verbalizes 30+ words. He is bright and catches on quickly. All children are different and develop in their own time. Do your research, work with your child and make the most informed decision you can. Best wishes.

  3. Angela says:

    To be quite honest, I’ve never really given it much thought. I agree with what Cate’s blogpost said–if it were something that could *really* help, it would have been recommended (or even mentioned) to us by B’s pediatrician, ST, PT, geneticist, cardiologist, and/or EI coordinator. He’s doing just fine without anything, so until we hear differently, we’ll stick with whole milk, fruits, and veggies. Oh, and Cheerios. :)

  4. Missy says:

    I’m still totally undecided about the whole issue. I heard a pediatrician from Cincinnati Children’s talk about it, and he basically said that until there is some evidence based research that says these things are helpful, he won’t be giving them to his child. The risks are just too great.

    He mentioned that there is a broad continuum of risk on some of the suppliments in some of the cocktails, with Ginko being on the more well tested on typical people vs. things like prozac that make some pathway changes that haven’t been looked at over the long term in our kids.

    I’ve often told my hubby that we are going to have some tough choices I think as science moves along in the future of what risk vs. reward for our little one will be when it comes to some treatments.

    I also wanted to mention that while I was nursing my child, I personally took a multi-vitamin and a Coq10 suppliment. That is one that has been tested in a clinical environment on a population of people with DS, and the results were somewhat promising. I haven’t started her on it yet, but probably will soon. And I still feed her Baby food with DHA in it.

  5. Kim Ayres says:

    To be honest, unless there are compelling reasons otherwise, a normal healthy diet is the best thing for any child, DS or not.

    Playing with extra vitamins and the like are no substitute for proper healthy food. And if the diet is good anyway, the amount of difference the supplements will make will only be minimal.

    They are not superdrugs and they are not going to “cure” our children of DS. In many ways I feel they offer a false hope that, in the worst cases, can even delay parents from accepting their child as s/he is rather than who they wish s/he was.

    And as most of these supplements have not been given the big and repeated clinical trials necessary to truly establish their effectiveness, it just means we are experimenting with our own children.

    Odd – when I started writing this comment, I wasn’t aware how strongly I felt about the subject, but I can feel it all coming to the fore now :)

  6. Amelie says:

    there is an interesting article in down syndrome online regarding this issue: http://www.down-syndrome.org/statements/2106/

    that might help.

    best wishes,
    amelie

  7. Lianna says:

    When pregnant with Gabriel, my husband & I thought we would definitely try the vitamin therapy.

    Then, once Gabe was born, and our lives were taken over with other “therapies” and heart surgery, we didn’t really think about it.

    Then as we saw Gabe grow into toddlerhood, and we read more about inconclusive study results, we became wary. Was this necessary? Or warranted?

    Now, at four years of age, we have followup with a dietician, who recommends a certain multivitamin (Sisu), a daily iron supplement and one brazil nut (for selenium) per day. We do this every day only because of Gabe’s bloodwork.

    And that would be my suggestion to anyone venturing into the vitamin therapy arena — get your facts straight about your INDIVIDUAL child. From Gabe’s blood results, we now know that he needs extra minerals because of poor absorbtion. We are comfortable with this…to overdose him on a series of minerals is not something we are comfortable doing. I’d rather try to get a good diet into him than another supplement. BUT this is my own personal opinion.

  8. sasha says:

    I do think it is a personal choice about vitamins. Since I work in the field of holistic health and nutrition I obviously believe in supplements and food to treat the body. I have read about Nutrivene-D and the Canadian counter part Nutra Chem. I think the doses are quite high and I would not feel comfortable giving them to either of my children. However,, on that note I am interested in components of these supplements such as antioxidants, probiotics and digestive enzymes. Interestingly enough, most pedi’s and hospitals will not support the above on a child with ds or a child without ds. It’s the nature of the business. Most holistic doctors will support them..so it depends on who does your childs care and if you are lucky enough to find a doctor that dabbles in both traditional and holistic meds. I definately am looking at giving my son some of these products and I will pick and choose what I feel is right. It is the same thing that I did for my daughter. She was given fish oils, probiotics, vitamins and other natural products. So why should my son with ds not get some of the same? Today our foods are not as high in nutrition and not as healthy as they were decades ago. So supplements tend to be an “insurance” so to speak to help the body stay healthy. The only concern I have now is that I won’t be giving my son tons of herbals without guidance due to his heart concerns. I find this to be such an interesting topic escpecially since most doctors are against vitamins but use thousands of other chemicals for our children. Makes you wonder?

  9. jennifergg says:

    Thanks, everyone, for sharing your perspectives, which all seem very thoughtful and reasonable to me.

    xo

  10. ds.mama says:

    I am so on again off again about this subject. We are currently doing a one month “off again” trial to see if anything seems different.

    I posted about supplements a while back and I hope to get to a couple other posts on similar topics I have floating around in my head soon.

    http://downsyndromenewmama.blogspot.com/2009/05/supplements-should-we.html

  11. Paulette says:

    Our 12 year old daughter Faith has taken Nutrivene D since she was 10 months old. She is very healthy and does well in school. I see this vitamin as specific to Down syndrome, just as I take a vitamin for women over 40 and my husband takes a men’s vitamin. With all the extra genetic material how could there not be different vitamin needs than the general public?
    We added gingko biloba to her regimen about 2 years ago. I can’t say I’ve seen huge improvements with it, but I also take it and I really notice a clarity of mind with it. Why not give her that advantage?
    My opinion on the SAD (Standard American Diet) is that we can’t get all the nutrients we need without resorting to growing our own food, so the vitamins seem very necessary to me.
    BTW, there is NO danger in taking Nutrivene D and it is NOT mega doses of vitamins. For more information http://www.nutrivene.com/view_item.php?ProductID=39& You can call and talk to them about it, find out the amounts of vitamins included.
    For someone who posted here about taking an iron supplement, that could be dangerous for a child with Ds unless an iron deficiency has been diagnosed.

  12. Rosalie Newell-Wagner says:

    Before deciding to go with a specific vitamin supplement for children and adults with DS, I’d highly recommend reading Dr. Kent MacLeod’s book “Down Syndrome and Vitamin Therapy”. His supplements (MSB Plus) from NutriChem in Ottawa, Ontario, Canada are not mega dosages of vitamins, and the MSB Plus products have been around since the early 1980′s.

  13. jennifergg says:

    While I so appreciate comments from those in support of supplements such as Nutrivene-D, I think most parents will understand that these supplements include dosages past the regular recommendations, which for simplicity’s sake I’ve chosen to term megadoses.

    Also, Dr. MacLeod’s book is referenced in my book as a work supported by the industry that concurs with his findings, regarding Nutrivene-D.

    Again, thanks for the dialog, when we are speaking to each other as one parent to another.

    xo

  14. Qadoshyah says:

    We’ve used Nutrivene-D with my brother, Osiyyah, since he was 8 months old. It’s made a HUGE difference for him. I’ve done quite a bit of research on this subject over the past 4 years.

    The doses in Nutrivene are certainly higher than *most* multivitamin supplements. But, one thing that does comes to mind is something that a nutrition professor from UC Berkley said regarding the RDA (Recommended Daily Allowance) – - The RDA is based on the general population that doesn’t have any disease, doesn’t have an extra chromosome, doesn’t have a nutritional deficiency etc. So, while the RDA is a good general guideline on many things, there is leeway on some things. You can go higher on some things, when you have researched enough, know it is safe and know that it is necessary to go above the RDA in this instance. One thing as an example of that would be Zinc. Osiyyah ( 4 1/2 yrs old) takes about 35 or mgs of zinc/day. That is WAY more than the RDA, but if we didn’t do that, then he would be deficient in zinc (we know via lab work). Zinc deficiency is one of the more common “problems” associated with T21, and in our case it happens to be the case.

    With giving just a regular multivitamin, there are certain supplements that should not be given to kids with DS because they have the possibility of causing problems in the long run. Like Iron for example. It’s a touchy issue in both the general population and those with DS. Too much is really bad (deposits in the brain & increasing oxidative stress), but not enough is really bad too (interferes with growth, thyroid, etc). Typically we can get a good amount of iron in a good diet. So, if there is a good diet in place, then no iron supplementation should be given. Routine labwork would be important to be sure the iron levels aren’t too high or too low.

    Whether changes are seen by giving Nutrivene/MSB Plus is not the biggest thing. What the hope is on are the potential benefits this has in the long run for our kids.

    I hope I don’t come across wrong, just giving some information that I hope will be helpful :).

    Qadoshyah
    Author ~ Down Syndrome: What You CAN Do
    http://www.gotdownsyndrome.net/Book/whatyoucandobook.html

  15. helen ash says:

    to understand the role of nutrivene d is to understand what a metobolic disease is. nutrivene d is a metobolic correction program. it is there to balance errors from the additional genes which are not present in non ds children. a good diet makes a happy household, but there are feeding difficulties in some households and to rely on a good diet can be impossible.
    i do not see nutrivene d as a medicene or vitamins. i see it as a gradual correction program to enhance (not cure) the health ( not ability) of the child. my son has accepted it from 6 months old, he is now 4 still on it. we love it because we have tried it. those who do not love it actually probably have never tried it.
    again, enhances health within to minimise associated poorer health with ds and not the cognitive ability or speech of a ds child.
    walking and speech and understanding of the child comes from early intervention and a lot of love. try nutrivene with all of that and you are likely to find a larger ds child as growth. my son has very large ears, eyes, long arms and a big head. the errors of the excess genes are assisted to correction by nutrivene d.

  16. Rosalie Newell-Wagner says:

    You mentioned that Dr. MacLeod’s book is already referenced in your book as a work supported by the industry that concurs with his findings, regarding Nutrivene-D. Sorry but I don’t understand what you are saying ? Dr. MacLeod’s book is referencing MSB Plus and his labs and “Wellness Hospital” in Ottawa. Can you explain what you referenced in your book, please ?

    I appreciate the discussion as my 4 year old daughter just started MSB Plus a few months ago, and as well, I’m working on more aspects of the “Vitamin Supplement” issue shortly. If you would rather email me off this blog, please feel free to do so. My personal blog is http://www.whitneyandmore.blogspot.com

    Regards,

    Rosalie

  17. jennifergg says:

    Hi Rosalie,

    My book discusses these issues in some depth in Chapter 9. I trace the beginnings of Targeted Nutritional Intervention (TNI) with Henry Turkel in the 1940s, through Ruth Harrel’s work and more recently, the work of Dixie Lawrence Tafoya.

    Tafoya is one of the original creators of an early version of MSB which was marketed through Nutri-Chem. She left that company and began a new one in the US, which sells Nutrivene-D.

    Dr. MacLeod is and has been affiliated with these products on the development side. What I meant in my earlier comment (and I apologize, it really wasn’t stated very clearly) is that his book is not a blind study, or an unbiased account that many of us parents would like to see. Rather, it’s a tool used to promote MSB products, which he clearly truly believes in.

    For those of you who don’t know it, here’s the link to his book:

    I actually agree with everything that has been said in these comments: I think it’s possible to be presented with the exact same facts and have different people come away from them with differing conclusions.

    This is what I wrote in my book:

    “My three books [the ones I'd been reading to learn more about Down syndrome, by Cunningham, Pueschel, and Stray-Gundersen] reach the same conclusions about TNI–there is an effect caused by the trisomy, but what it is, exactly, is unknown. Each chromosome carries genetic information for hundreds of thousands of biochemicals; our bodies consist of millions of controlled, orderly chemical reactions. Introducing additional biochemicals, with the hopes of mitigating others, is a guessing game, at this point. More research needs to be done.”

    Clearly, some parents are comfortable with trying to mitigate the affects of the trisomy, while others are not.

  18. Rosalie Newell-Wagner says:

    Thank you Jennifer. If Dixie Lawrence was the creator of MSB Plus, can you explain where does everyone think Dr. MacLeod was already in his development of the product before Dixie came along ?

    On page X of Dr. MacLeod’s book it states this:
    “Their research (Dr. Marie Peeters-Ney & Dr. Jerome Lejeune) on amino acid deficiencies in the genetic disorder linked to certain genes on the 21st chromosome, combined with the positive benefits reported by the parents whose children had been taking our MSB supplement for 10 years, convinced me to work with Dixie on a customized formua for her daugher that incorporated Lejeune’s and Peeter-Ney’ research”.

    It appears to me that more credit should be given to Dr. MacLeod and his prior work. Also, it appears she needed him to help her, from the way I’m looking at this. He had the lab and the ability to put the formula together. Please believe me I have nothing against Dixie, but I find it hard to understand the negative slant to Dr. MacLeod’s work that seems to take place within some of the DS community.

    Personally, I think the problem with the lack of more specific research in the area of Vitamin Therapy has alot to do with the ongoing negative reactions by some parents who refuse to even consider supplementation. If so many refuse, then how do we convince those with the mega-bucks to get involved with the research your looking for. It seems to me that Dr. MacLeod has the ability and facilities to help get some research happening.

    As a supplier of Juice Plus+ products that my own medical doctor got me started on 10 years ago, I can tell you that for some people no amount of double-blind research that turns out to show the positive benefits of such products necessarily convinces those people. And don’t get me wrong, I’m not promoting JP+ to you or your audience . . . this is my observation of many years.

    Regards,

    Rosalie

  19. pixiemama says:

    Ok, totally out of left field here, as a mother of four and not a mother of a kiddo with DS. But my FAVORITE supplement, which costs me no less than an arm but is worth its weight in GOLD is Transfer Factor – which is bovine colostrum – an amazing immune supplement for kiddos. My kiddos with special needs seem far more prone to whatever is going around the block, and this is my big go-to supplement. We also do a chewable acidophilus and multi, but we are not big on over supplementing.

    love.

  20. starrlife says:

    Well, alot of feelings and thoughts here. I certainly explored some of the supplements. Working with pharmaceuticals, mood, chemistry changing meds all of the time I am wary. I know many people see vitamins as different somehow, more “natural” but they are not necessarily and can be extremely dangerous.
    Personally, I tend to work more on acceptance of people as they are, of course living a balanced life with good nutrition, reasonable supplementation and exercise, intellectual stimulation. I see it akin to excessive flash cards- I want my daughter to have a happy life not a project of a life where she always has to be something she is not. That doesn’t mean that I don’t offer her a bit of extra support to reach for her next step/ achievement but it does mean I don’t pressure her to do something she isn’t indicating readiness for.
    How would one know if there was improvement with these programs- measuring something against what standard, a projection? How many times have I despaired of a milestone only to have my daughter reach out and attain it in her own time?
    I once saw a show on plastic surgery for a child of 9 with DS to ” make the child look more like his family” and it made me want to throw up….. and then I cried.
    I’m not comparing that to the vitamins though- each parent has to figure out what is best for their child.

  21. Jennifer says:

    I have Nutrivene in my kitchen cupboard but I haven’t used it yet. I’m a bit nervous about it for some reason. What I have used are probiotics and B-12 (only because we are raising Joaquin to be vegan). I have made a special effort to give Joaquin the best nutrition using only organic fruits, veggies, grains and legumes. We also regularly use ground flax seeds, olive oil, canola oil and coconut oils as well. It is tempting to want to use the vitamins to cover my bases with Joaquin but I’m still very carefully considering it. I know that having DS may change this but I read a blog with excellent nutritional advice and she recently covered the topic of supplements. It makes you wonder….

    http://beandiet.blogspot.com/2009/08/healthy-fear-of-vitamins.html

    Such a controversial topic and of course we all need to come to our own conclusions and do what we feel is best for our families. I love the conversation Jennifer, it’s all good “food” for thought :)!!

  22. Rosalie Newell-Wagner says:

    Hi Jennifer: I took a quick look at the blog you mentioned and the study this lady is discussing. The makers of Juice Plus+ products have been saying this for a long time, not to give vitamin supplements in isolation. My doctor who uses JP+ extensively in her practice only recommends single supplements when required. The concept behind JP+ is that all phytonutrients work in synergy and there are thousands of them. I’ve been supplementing my daugther’s vegan and organic diet for these last 3.5 years with JP+, however, it’s still not enough. Something is missing ! What impressed me in Dr. MacLeod’s work was what he says on page 18 “As we look at specifi nutrients and their roles, it’s important to remember the law of nutritional synergy. A healthy body requires a mix of all nutrients present because they do not work in isolation.”

    My daughter for the last two winters has had ongoing runny nose for 3 -4 months, so it will be very interesting to see if the same will happen this winter now that she is on MSB Plus. She has been otherwise very healthly.

    Just “food for thought”.

    Best regards,

  23. Shelley says:

    Wow – I never realised just how passionate people could get about these things. I know a number of mums who give their kids with ds a particular supplement – can’t recall which one. It makes me wonder if I am being a ‘bad mother’ by not investigating these things further – but overall I guess I agree with Kim. I am lucky in that Hannah eats a good balanced and varied diet and has an active and healthy lifestyle.
    I have enough things in my day to do – many of which relate to Hannah – her medical concerns, her speech development, her social skills, her literacy development and the LONG overdue appointment with the orthotics guy still to do – so I think – yay to those pioneers who take the time and have the inclination to try out these things and give us anecdotal evidence on their effects. Yay too to those who wait for more significant evidence of effect – and who look at who is making claims and what interests they might be serving – for whatever motivations – this too is something we need to understand to be able to reach a decision about which we are comfortable.

    So a worthy discussion to be had thanks Jennifer!

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  26. Jan says:

    When my now 21 year old daughter was 7-8 years old(1995-6), I contacted Dixie Lawrence after I saw her on National TV speaking about Nutri-Chem’s customized formula for her DS daughter. Dixie referred me to Nutri-Chem.

    After my daughter took a customized formula of MSB Plus (formulated by Nutri-Chem), she stopped experiencing constant chronic sinus infections after 3 months on the formula. (She has had only 1 sinus infection since!) She got improved progress reports from her teacher as well.

    I took her off MSB Plus after 3-4 years because she couldn’t tolerate the “vitamin smell & taste” of the powdered formula.

    I felt she got the immune boost she needed from MSB Plus! I know that she would not have received the same effect at that time from OTC vitamins because of the simple fact of Nutri-Chem’s customized formula for her individual deficiencies.

    Now, I try to make sure she eats heathy meals & snacks and give her OTC liquid supplements.

  27. Osiyyah ( 4 1/2 yrs old) takes about 35 or mgs of zinc/day. That is WAY more than the RDA, but if we didn’t do that, then he would be deficient in zinc (we know via lab work). Zinc deficiency is one of the more common “problems” associated with T21, and in our case it happens to be the case.

  28. Rosalie says:

    We had full bloodwork done for our 5 year old daughter in May, 2010 with NutriChem in Ottawa and as a result of this testing started a customized vitamin formula and amino acid formula and a few other things as recommended by Kent MacLeod. We were giving the standard MSB Plus formula from June, 2009 to mid July, 2010. Most of the vitamin doses doubled and quite a few quadrupled in the customized formula over the standard one. The Zinc dosage is 25 mg per day of Zinc-HVP-Chelate. We are alreading seeing excellent results and are still working our way up to the full dosages. The blood testing we had done was the BCB through NutriChem and plan to have this done yearly where the formulas will with adjusted based on the blood results.

  29. Hello Jennifer – Just found your blog here and my son with trisomy-21 is now 17. When he was 4 he started to have chronic sinus infections and I did not want to go the route of tubes, antibiotics and inhalers. I searched through many natural remedies including acupuncture, diet changes, and homeopathy – each helped some but none got rid of them.

    Then I was so lucky to spot a continuing ed class run by a local psychotherapist about using therapeutic grade essential oils for health. I started working on my son, who was now 7, and in three months his four years of infections were gone! I mean gone – totally gone! I learned to do Raindrop Technique an application of oils on the feet and spine with oils that are highly antiviral & immune enhancing. My little man has been so healthy ever since – rarely get’s colds, which would previously go to bronchitis, and if he starts to get something I have tools that help his body overcome whatever he is fighting.

    Oils also clean out neuro-receptors which make for better cellular communication and I believe the reason that Alex has a very high function ability – although he still could use help with math :).

    Please check my website because I have a lot of resources and love to work with people of all abilities!

    Warmly,

    Maria G. Turchi

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