What if I’m wrong?

Since we’re on the subject of Down syndrome, I might as well add my two cents on a touchy subject among many parents raising a child with Down syndrome.

Supplements.  Yes or no?

Maybe I should preface these words, because had I read this post when Charlie was a baby it would have sent me into a tizzy.  My intention isn’t to make you worried about the future.  Love your sweet baby and take one thing at a time.  However we are a bit farther into this journey and this information too is valuable.

For the last few weeks I’ve started to doubt myself.  You see, *I* chose this path for Charlie.  Sure Alex, our doctors and therapists all gave their input.  But, I’m the one who did the research, talked with other families, made the phone calls and chose our plan.

Our *plan* included physical, occupational and speed therapies as needed for the first three years.  Medical care under our pediatrician instead of a Down syndrome specialist.  A good healthy diet that began with a year of breastfeeding.  Following the basic Down syndrome health recommendations and guidelines – blood tests as needed, vision screenings, hearing screenings, etc.  A loving environment of family and friends.  Setting high, yet realistic expectations.  You get the idea.

Basically, our ultimate goal was to ensure that Charlie was the best little Charlie he could be.

Yet suddenly I began to doubt our decisions.  What if I’m wrong?

I’ll cut to the chase.

Up until this point we haven’t done any supplements for Charlie beyond half a Flintstone multi-vitamin, some gummy omega-3’s and probiotics.  Early on we said no to the popular Down syndrome specific supplement programs. {Nutrivine D, Changing Minds protocol etc.}  Fast forward 3 1/2 years and I’m researching supplements.

Why now? Charlie is by all means a happy, healthy and thriving little boy but we’ve reached a standstill with speech. Charlie signs up a storm, completely understands and responds when we speak to him, he just can’t seem to get the words out on his own.  I remind myself this is his developmental pattern – he reaches a handful of milestones and plateaus for a while. We’ve just been on this plateau for a while and it’s magnified as William learns a handful of new words each day.  {Yes, it looks like Henry is in for some conversation competition…}

Naturally I took my worries to the internet.  I spent the week slowly drowning in endless studies, blogs and books.  Half of which I barely understand, yet, what little information I glean is that I’ve failed Charlie this far.  That our high expectations, loving family environment, schooling and therapy choices aren’t enough.  That by not giving our son supplements we have done more harm than good.  The wind was knocked out of my sails.

When we made the decision not give Charlie supplements I had a whole list ‘o reasons.  I was skeptical because many of the supplements and vitamins were proprietary formulas that were exclusively sold by one company only, and for top-dollar.  No way were we falling for that scam.  And besides if there was a *magic* bullet to help children with Down syndrome wouldn’t that at least make the news?  Or at least be something that the national Down syndrome organizations recommend?  And let’s be realistic – you can’t cure Down syndrome.  It’s written into their genes.

But now I see the other side of the coin.  Let’s be honest, there isn’t much research money spent on Down syndrome.  And what little information gleaned is typically the result of some Alzheimer’s related research on mice with trisomy 21.  Yet the results of these studies are intriguing if you dig deep enough.  They reveal little bits and pieces of information about Down syndrome – how the brain operates differently, but with the help of some supplements can be re-wired.  Most of this information is gathered and dissected by a group of warrior moms on a quest to help unlock some of the mysteries of their children with Down syndrome.

As parents we have been left to blaze this trail alone.

Each camp clearly wants the best for their children.

Which one is right?  I don’t know.  Is there a middle ground?

Do you have any experience with Down syndrome specific supplements and vitamins?  I’ve spoken directly with some families who have children on the protocol and have experienced amazing results.  Yet I’m still not sold.

I’d love to hear any input you may have on this subject.

***While I’ve been on a research and study binge this week, Charlie has had an explosion of words.  Ironic, no?***

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16 thoughts on “What if I’m wrong?

  1. Curious what everyone has to say. I also looked at supplements and spoke with her developmental pediatrician (also a mom of a girl with down syndrome). She doesn’t use them for various reasons. I am still not sold on them.

  2. Ugh! I’ve gone back and forth since Bennett was born and it’s all so confusing. A good blog friend of mine has her son on them (same age as Bennett) and she feels it’s really helping him but part of me if wondering if her son was going to be like that any way or if it’s the meds. And then it seems like so much to do and to give each and every day. It makes be stressed just thinking about it all. And do they have to be on these meds for the rest of their life? Yes, I think so. But I’m definitely going to be looking more into them as Bennett gets a little older. I just didn’t feel good about giving my little baby all these meds and my husband wasn’t on board with it either, no doctors pushed it, DS clinic was against it. I don’t know. Curious what other think.

  3. I have to say that your post brought tears to my eyes. It was as if I was reading something I would have written.
    Like you I felt I did everything right within my means for my son. Like you I choose not to use the supplements, more because of the cost than anything. Now at age 8 we are finding there are areas that are not developing correctly. From his fine motor to his eyes. I wonder would he not be having these issues if I tried some of the supplements? I wonder would he be talking now, and functioning higher?

    I don’t know if I have made the right choices for him or not. I wish I had a better answer for you. I think as parents we always tend to doubt ourselves, our judgement s when it comes to our children. It is normal.

    I still don’t think it is a miracle cure for our children. There is just to many mixed testimonies. I am all for Down syndrome research, and I think that is where our answers lay.

  4. I too am curious. I have not done supplements with Nicholas either, but now that he is 3 I am thinking about looking into it again. I did a little research when he was a baby and decided against doing it, primarily because he got sick with RSV and we were busy nursing him back to health. I know some families who have their children on supplements and praise them, but the majority of families I know do not use them. I’ll be sure to share whatever I find out as well!

  5. Libby, I have a 4yr old with DS and she is non verbal, she has a DX of apraxia as well. We have used fish oils and nutriiveda because they are over the counter and simple to incorporate. I don’t think any one thing will ever be the key, l think it is a combination of several things including nutrition, but it is so hard to pinpoint what is the cause of any improvement. So we go with what is doable, not outrageous or complicated, because life is already complicated why add to it. But each family has to decidewhat is doable for them. My point also is that there may be other issues such as apraxia that is not going to be solved by nutriveneD. It will be a combination. So those are my 2cents!!

  6. I know I’m far from an expert on DS, and I’m pretty anti-supplement besides (not even chewable vitamins or gummies in our house), but…..I still have something to say. Charlie is awesome. I think if you had him on supplements you might be attributing many of the things that make him wonderful and clever and skillful and charming and fabulous to the supplements – or at least giving them credit they really didn’t deserve. I think you’re doing an amazing job of raising all the boys thoughtfully and intentionally, IMHO.

  7. I’m glad to see that we weren’t the only ones struggling with these decisions. We tried giving her some supplements (folic acid, ginko) by grinding up the pills & putting them in some chocolate milk for breakfast. The chocolate was supposed to mask the taste. I think very little of it actually got to her. Lots of it seemed to stay stuck to the side of the sippy. And then we tried some fish oil. It tasted soooo bad! We had the kiddos finish the bottles (didn’t want to waste!) and I never ordered more.

    I think we all want to do everything we can to help our kiddos, no matter their diagnosis. And there don’t seem to be any easy answers!

  8. As everyone else, we struggled with that decision when our daughter was a baby and decided not to use supplements. Now Cate is 5 years old and most of the time I’m happy with that decision. In my lowly option part of the reason, outside the lack of official research, that it is so hard to find answers is the way that our kids tend to learn. Cate didn’t show any indication she would walk at 20 months she couldn’t even stand on her own, but at 21 months she stood up along then was cruising, and by 22 months she was walking. At 2 years old she used mostly signs to communicate, rarely babbling and probably not speaking more than 15 word, then at 30 months she started babbling constantly and by 3 years was use more words then we could count. Often the changes in her seem to happen overnight – just when we worry the most about a far missed milestone she just decides its time and gets there on her own. How would I possibly know if supplements were part of the reason if she was taking them because often it feels like something prompted the acceleration to reach a milestone? My gut tells me that nothing changes how my daughter learns & develops except therapy, practice and her will but there is no way to know for sure so I guess I’ll always wonder a little bit. Giving our kids all of our hearts & as much love as they can stand is the only thing I know for sure makes then what they are meant to be – and that is something I can tell Charlie gets an incredible amount of from his family. As hard as it is we just need to trust our instincts and our doctors then give ourselves a pat on the back instead of doubts.

  9. Aww, just saw your post linked on someone’s page on fb (are you on fb, btw? lol). We have been in the supplement world since Payton was born. And my mind has moved around over the years. We started with Nutrivene, but have since stopped. The more I learned about nutrition and whole food vs. synthetic, the more I have moved away from Nutrivene. And the more I read about how our bodies don’t really know how to deal with synthetic, lab made vitamins, and how we just pee them out, and then how I put 2 and 2 together about the color of my girls’ urine when on Nutrivene … well yeah, that ended. LOL. Their urine is NASTY when on Nutrivene, so obviously the vitamins are being peed out, and what am I spending my money on? Sure, perhaps some teeny bit of it gets absorbed, but seriously.

    Anyway, we were all on Juice Plus all along. When I had my little epiphany regarding the above, and after I read all the research behind Juice Plus (which Nutrivene doesn’t have, and yes, I used to argue against that too), I just knew I had to share Juice Plus with others. So I do. :)

    If you want, I’m happy to chat with you more about all of this and more specifics. We also use Gingko (on and off), and Vitamin D3 (since there isn’t much in fruits and veggies), and Omegas. We use SpeechNutrients – the most important thing with Omegas is to make sure they are molecularly distilled, which most grocery store brands are not. :)

    Hope this helps!

  10. Wow! I’m glad you brought this up. I’ve been wondering about the supplements myself for my 4 year old son with DS. I’m anxious to read all the comments. What research I have read hasn’t convinced me that supplements are the answer and my pediatrican advised against it.

  11. here is what I know…we can’t every look back and feel we were reponsible for choosing something that might be the “wrong” decision…that is not of the Lord my friend, we continue to pray about things and let God lead…I also believe we can’t judge others if they chose a different path, I’m not so sure why we parents seem to have such hate for those that choose differently, not really effective when we should be joining together to help raise funds for research which is what we truly need. What a crime to hear the NIH say, “we never hear from DS parents, so we figure you don’t care about helping your kids..ouch..”

    Go Charlie!!!!

  12. I guess I seem to be in the same boat as you! Been looking/researching the supplement world for Down syndrome and I too have read many blogs and FB posts….I’m not exactly convinced that milestones and goals are being reached because of them. Sometimes I wonder if too much weight is put on these supplements…how are we really to know if “so-&-so’s” child is doing all of these fabulous things because of the supplements rather than it just simply being there time? All children develop at their own pace and some WILL do more than others because it’s in their make-up. Some children walk @ 18 months old or sooner…..Landon didn’t start until 23 months old…..is because another child was on supplements that he/she walked early? i’m not yet convinced. I truly believe that our children will do what they are capable of doing in their own time…..part of me feels like if I put Landon on supplements, then I don’t believe that statement to be 100% true!! I, like you, believe that if these supplements were the key….our pediatrician’s and Ds clinics would be pushing for them! I’m so happy that Landon is part of the Boston Children’s Hospital Down syndrome clinic, with some amazing Dr.’s & specialists….like you said….there is no cure….the best meds are love & faith!!!!

  13. The first thing I want to say is…Please don’t beat yourself up for what you have or haven’t done. Obviously, you do what you think is best for your child at the time. I don’t have experience with Down Sydrome, but my son is on the Autism Spectrum. My only advice to you would be to GO WITH YOUR GUT!! You CANNOT question your choices or you will drive yourself crazy! :)
    I find myself wondering—at what point do you just let your child be who they are…..I really struggle with that!

    PS..You have a beautiful family!

  14. So glad this was brought up and happy to be able to read what others are saying. Jacob is almost 22 months and I have wondered if supplements would be beneficial or not as well. Charlie and the rest of your family are adorable!

  15. My son is 14 years old. When he was an infant we did nutri d and stopped I think because it bothered his tummy. At 11 years old he regressed lost all skills, words signs no communication at all. Seemed to be at a 6 month old level. Was diagnosed with autism. We have had him in aba therapy speech 4 days a week ot ect, it took me 3 1/2 years to give the changing mind protocol a try he couldn’t get worst . We have our son back in 3 months on protocol! He is speaking in 3_5 word sentances reading sight words counting writing . Down syndrome is a regressive syndrome they will regress question is when at 11, 25, 45, 65 dont let our night mear become yours start cmf now.

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