I’ve been commenting for several days about the recently published study on supplementation with antioxidants and folinic acid for children with Down syndrome. Here are posts one, two, and three, all commenting on the same study.
The researchers concluded their report with this warning:
Parents who choose to give supplements to their children need to weigh their hope of unproved benefits against potential adverse effects from high dose, prolonged supplementation.
I’m going to stifle my comments on “high dose” for at least another day. That deserves a post by itself. For today I want to look at the danger of long term negative outcomes of supplementation.
My daughter Mary (15) has been taking Nutrivene-D for 12 years. Mine is not a very large study, but I do have some results. I have seen side effects, and I’m afraid these might not be reversible. Here are a few of the most worrisome.
People don’t realize that she has Down Syndrome. Many times I have heard from someone that they were surprised that she has DS. Common refrain: “I just thought she had a speech impediment.” Because of this problem, people misjudge her, and expect more highly of her than they should.
Independence. This is a huge negative side effect. Mary has this idea that she should be able to walk out to the store like her older brother and younger sister do. She knows the way. She has the money. She knows how to act in a store. Why shouldn’t she be able to do this simple thing without supervision? Managing her would be much simpler if she weren’t insisting on independence.
Self-awareness. Mary is keenly aware whenever she is different from others. She realizes when she doesn’t understand what they are talking about or when she doesn’t “get it.” So she fakes it. She laughs loudly when others laugh, just so that no one knows that she didn’t understand the joke. She realizes when people don’t understand her speech and it embarrasses her. She realizes when she is treated differently and it frustrates her. If she hadn’t been on Nutrivene all these years, she would probably be blissfully unaware of her differentness, and just enjoy being herself. But now, she knows what cognitive abilities are “out there” and she knows that she doesn’t have them.
Mom feels like a meany and ogre. This is coming, I know it. Mary is counting the days until she turns 16, because she expects me to teach her to drive! I’m going to have a huge guilt trip if I refuse. There is no way I will ever be comfortable letting that girl behind a wheel. Parenting shouldn’t be so complicated. Without Nutrivene, I wouldn’t have to face this issue. Mary would be blissfully unaware that I was denying her. But now if I don’t let her drive, I’m the mean mom.
There are other results, but these are the ones at the top of my head.
When I was considering using Nutrivene, back 12 years ago, I didn’t know what the possible complications of long term supplementation were. But I did know what the complications of untreated Trisomy 21 were. That information was stressed to me as the “reality of Down syndrome” and I was expected to accept it:
Inevitable retardation
Dull
Tongue protruding
Inability to carry on a conversation
Frequent sickness
Sluggish
Early Alzheimer’s
Early death
You see, I knew what untreated DS was going to look like. It was stressed to me that this was the 100% probability of how Mary was going to turn out. As an alternative I saw a possibility of slowing or stopping some of that negative progression. That is why I chose the risk of Nutrivene.
Parents today have the same choice. You know the literature. You know what untreated DS is supposed to look like. If you are not sure, go to a group home or other home where you can spend time with DS adults who were untreated all their lives. Get to know the people. Get some recent statistics on the average age of death for someone with DS. It is early. Premature. Not a full life. It is possible that you can interrupt some of the negative prognosis. Maybe you can extend health and make a longer life possible. You get to make the risk/benefit decision.
Filed under: Health, Positive attitude, TNI, home life, medical | Tagged: Down Syndrome, Nutrivene, supplements, TNI
[...] UPDATE: Waste of Cash! part 3 is here. Part 4 on long term negative outcomes is here, [...]
I have a question for you…..
How do you get Nutrivene into a baby who refuses to take it?
At the moment my 6 month old (4 month corrected) daughter is still on an NG tube, so we are just putting it down that, but her dr wants us to try and get her off the tube over the next month. This raises the issue of how will we get her to take her medicine?
We have been trying to get her to take it by giving it to her in a syringe, a few mls at a time, but she succeedes in spitting it up with such force, that our furniture now has specks of orange everywhere!!
She is on the powder, mixed with Piracetam, EPO’s and Probiotic. We mix it all with a little water. We used to mix it with EBM, but it would clog in the tube.
Any advice?????
Thanks
Carolyn
Carolyn,
I’d suggest joining either the ES email list http://einstein-syndrome.com/join/ or DSTNI at yahoogroups. Both have archives full of ideas for feeding the vitamins to your child. Here are a few off the top of my head. Keep it cold. Cold has less taste. Squirt it to the back of the mouth next to the cheek, to bypass most of the tongue. Keep using the tube for the vitamins while your baby learns to eat good tasting foods by mouth. Make the vits the last thing to go by mouth. There are many more ideas that have been suggested on both those lists.
First of all – thank you for such a fantastic website – I have been spending my afternoon looking through all the great info you’ve got here!
We just started our little man (5.5 yrs old) on thyroid meds – so I’m going to ask his Endo to make sure we can start him on Nutrivene-D along with his Levothyroxine (and if I can put him back on Gingko as well – we used to do this but stopped for no good reason at all).
Anyway, my question to you is do you do the Nutrivene “Program” with your daughter or just Nutrivene?
Along with that – we use melatonin religiously with our son – it really helps get him to sleep at night but we might not need that with the Tryptophan in their night formula (or will we?)
Thank you for your kind words about this site.
You may find that after your son is on Nutrivene-D for awhile that he needs a lower dose of Levothyroxine. Nutrivene-D supplies nutrients which support thyroid function. See Thyroid Case Histories for some stories of how thyroid hormone and vitamins work together.
I recommend that you begin with the Nutrivene-D complete program. If you follow their directions, you will begin by slowly phasing in the various components. After you are on the full program you can begin to individualize it for your son, based on your testing or his reactions.
And, yes, you may well find that the Tryptophan in the night-time formula satisfies the same need as the melatonin you are giving. Plus, the night-time formula promotes growth.
My daugther is 10, is it to late to try the vitamins?
The short answer is no, it is not too late. Not at all.
Hi Miriam,
my son with DS is 4 months (3 corrected) old. I have recently come across TNI through the Changing Minds Foundation and your site. At the moment I am still in the process of researching TNI further but am wondering what would be the minimum age for administering Nutrivene and Ginkgo Biloba? Should I start now with the baby as young as he is?? I can’t seem to find any articles which states the minimum age or recommended starting time. Are there any known possible side effects from these on babies? And I’m also getting confused as to which Nutrivene I should be looking at!
Thank you for your “contribution” to my research through this site, and I hope you could help me further by answering some/all of my questions!
Lisa.
[Lisa, many, many parents have started Nutrivene-D at birth, and some even prenatally. It is dosed by weight, so your son would get only the amount his little body needs. The damage from the extra chromosome is happening now, so your interventions should begin as soon as possible. You should call International Nutrition (www.nutrivene.com and find a phone number there) and talk to them about the recommended protocol for DS. Nutrivene-D Daily Supplement is the main product you want, but there is a complete recommended protocol. -Miriam]