Skip this post now, or forever hold your peace.
No, really, I am open to any comments or questions about the topic of TNI, but please be respectful. Be assured that our family really has considered all angles of this subject. I certainly respect that other families make different choices and I never push nutritional supplements on to other families. I am writing because I have been asked about vitamin supplementation, not because I want to influence others' decisions.
The short explanation as to why and how we came to the decision to supplement Hannah is that we knew that the parts of the typical TNI protocol that we would use were safe; there were no medical dangers involved. And, we could afford it. We had no reason not to try it. The mainstream medical approach to T21 has not come up with anything to address the metabolic issues caused by the triplicated chromosome. It's true that there have been no scientific studies to prove or disprove the efficacy of any TNI protocol. And there won't be any in the foreseeable future.
I can't say one way or another that all the vitamins and supplements we've put into Hannah have had any effect--I'm not able to do a double-blind study on my kid. When we started with supplementation we were not looking for visible or measurable changes in her. We were hoping that her neuronal pathways would be healthier down the road, that her immune system would function a little better, and that perhaps she'd have less risk for Alzheimer's. Maybe we're throwing money away. It's a risk we're willing to take. So far science hasn't decided that Down syndrome is interesting enough or worthwhile enough to spend big research dollars on anything other than prenatal diagnostic tests. There are small studies that reveal metabolic deficiencies and disruptions, but not many studies that look at solutions to these problems.
The long answer:
For starters, we view Down syndrome as a progressive disorder--the extra 21st chromosome doesn't just show up once and make our kids slow learners--the extra chromosome is actively overproducing certain proteins and enzymes (all with long scientific names like cystathionine β-synthase). It isn't going to stop until we can turn off some of the genes on the extra 21st chromosome (which isn't going to happen for quite a while). This abundance of excess gene products is an ongoing, compounding issue in our kids' bodies and brains. There are too many cooks in the kitchen and too many leftover waste products cycling in our children's brains and bodies. These excess products are interfering with the endocrine system (thyroid, diabetes), immune system (celiac), and produce other biochemical abnormalities (leukemia, neurological issues). This is well documented in scientific literature (for an example, see here).
For a layman's overview to understand all this, you might want to read this from the Einstein site. (BTW, there is a picture of Hannah, age 3, on this page--on the left, second one from the top--wearing a crown.)
When Hannah was a toddler, some months after her heart surgery, Dr. Jill James (University of Arkansas) started a research study measuring how well certain nutrients were absorbed by the Ds metabolism. The specific nutrients were folic acid, trimethylglycine (TMG) and...umm...something else I can't recall right now. We signed Hannah up as a participant. They took pre-test blood labs, and then we started with the supplements. She had her blood tested at 3 months and then at 6 months. She was followed by her pediatrician through it all. None of the nutrients were anything dangerous, but they were at a higher level than the RDA. This was because there was a previous study that indicated that the RDA for these nutrients was not sufficient for the Ds metabolism. The study was to determine how much did the average person with Ds need to reach the "normalized" level of the typical population.
At this time, we had been in the Down syndrome game for almost three years, and I had read as much as I could. Being very active in our local Ds community I also got to reflect on the results of mainstream approaches to Down syndrome. To be frank, the available therapeutic interventions just were not cutting it by my standards. It was clear that the medical establishment was not interested in looking for methods to ameliorate the expression of the extra chromosome. Nobody seemed to want to spend money on our kids to do any double-blind studies to determine whether or not anti-oxidants or zinc supplementation would make a difference. Without such a study, no doctor worth his or her malpractice insurance could possibly risk suggesting using nutritional supplementation. (Well, there are a few out there, but Hannah's never been seen by one of them.)
When the six-month study ended, we could have stopped right there. But we had no reason to stop. Hannah was already on a pretty good course cognitively (pre-TNI). She was talking in sentences, had a sight word vocabulary of about 200 words, and knew her letters, shapes and colors. Our focus for her was on speech and cognition, two aspects that were going to make or break her as an adult. We weren't expecting that doses of vitamins, antioxidants and essential fatty acids (EFA) would change much. We were skeptical of anecdotes about facial structure changes, or miraculous leaps in development. We were in it for the long run.
We started with the whole Nutrivene package: Daily Supplement (microencapsulated powder), Daily enzymes, and the Nighttime formula. At that time we also used Evening Primrose Oil for EFAs. We quickly determined that Hannah did not need the enzymes. We also noticed that Hannah did not sleep as well if she had the NightTime formula. (The Night time formula is primarily to promote growth and regular sleep patterns. Hannah was already in the 75 percentile for height on the regular growth charts, so we didn't need more growth). So we dropped those. Over the years there has been some tweaking of what we give her. We've always viewed vitamins as a non-negotiable thing. When she was little, they did taste bad. We'd mix the powder with cinnamon applesauce or pureed fruit to hide the flavor. When she was four years old she started taking capsules, which made everything much easier. She still prefers to take the capsules and tablets with spoonfuls of applesauce, usually two or three capsules at a time.
The first addition we made was a probiotic. Now, this is one thing that I DO HIGHLY recommend for our kids, and for the rest of us. It's the first line of defense against constipation. Probiotics are healthy bacteria that reside in the GI tract. Many times, due to antibiotics (which indiscriminately kills all bacteria, helpful or harmful), a child gets diarrhea, which is frequently followed by constipation. Low motility in the GI tract also contributes to constipation. A probiotic powder or capsule will replenish the colonies of healthy bacteria that do the work of digestion. (This is what Activia yogurt is all about.) Later, we changed from Evening Primrose Oil to an Omega 3/DHA combination. This decision was based on research about DHA (which is now found in baby formulas as a crucial element in brain development). We do not use Piracetam.
About 20 months ago we added ginkgo to Hannah's daily intake. Ginkgo is the first herb she's had, and it's the first thing that we've supplemented that actually surprised us with an obvious change. Language has always been one of Hannah's strengths, but we were amazed with her new awareness of conversations and her ability to express herself more maturely. We always use a low dose when starting a new supplement (additionally, I always try the supplements as well, before giving them to her, so I know how they taste (fish burp?) or make me feel). Our goal was to get to 180 mg/day. We had been giving her 120 mg in the morning, and then an additional 60 at night. We weren't seeing any difference until one day I was late in giving her the vitamins (it was after lunch), so I gave her all 180 mg at once. That night at dinner she said an amazing sentence, something like, "Chris, would you describe how the dogs in Hotel for Dogs managed to escape the police?" Since then I give her all 180 mg in the morning. More recently we have added another 60mg at night since she has grown considerably in the past year.
Hannah has various blood tests done annually:
CBC, Vitamin A, Selenium, Zinc, Ferritin, Iron, Homocysteine and a full Thyroid panel.
Here's the run-down of her current protocol:
Nutrivene-D, 12 capsules a day (dosage by weight)
2 probiotic capsules
500mg calcium with Vitamin D.
Her iron stores were low this year, so we are adding a small amount of iron to her diet (typically iron is not recommended in the Ds population as it contributes to oxidation and is difficult to excrete excess iron).
I'd like to point out that there is another protocol, one put out by the Changing Minds Foundation. We already were using some similar components of the CM regimen, but not all. I have done some reading about the use of Prozac and its potential for neurogenesis. I do not doubt the potential for it to be a valuable player, but at this time we are not going to pursue pharmaceuticals. I understand that the national Ds groups and other prominent Ds researchers have felt the need to discourage people from using the CM protocol to protect themselves legally, since the use of Prozac for neurogenesis would be an off-label use. I encourage everyone to do their own homework and decide for themselves what approaches they want to pursue for their child.
The last thing is that most doctors are recommending things like fish oil and antioxidants for the general population for optimal health. I see no argument against that usage, so why should we not use the same logic with the Down syndrome population? Our foods are becoming less and less nutritious, we are all at risk for deficiencies.
So there you have it. I'm happy to answer questions or clarify any points regarding Hannah's protocol, via comments or email.
Addendum: I have a follow-up post you can read here.
Thank you for explaining this, in English, for us. We are still trying to decide what to do about this. I know we can't give probiotics right now,as one of Christopher's problems is bacterial overgrowth -of all kinds. He is also not absorbing some things at all and others like a sponge. I think we are on the road to a long-term, individualized, carefully regimented diet for him. We hae already been told if we want him on "real food" that we have to grow organically and home process ALL of his food. Not a problem for most fruit and veggies, but my neighbors had issues with the dogs. I doubt they would be too thrilled with a goat or chickens in our yard. (I wouldn't mind.) LOL!
Thank you,thank you,thank you!This is an excellent post!Great info!
Thank you for all this valuable info. I am going to add a link from my supplements post to this post.
Very informative from a parent's point of view. I was turned off by the Einstein website a few months back (don't recall why now). I always wonder if we're doing enough for John MIchael nutritionally. I know the answer, but it's hard to change a stubborn woman (did I say that?) I've always been "afraid" of adding vitamins/herbs beyond a multi since I didn't know how much to give or whether it would be harmful in other areas. The fish oil and probiotics seem pretty important, even for me to take. I certainly could use a brain boost at this point in my life :-) Thanks for the post.
I will be honest and admit that I have attempted to research vitamins, suppliments, etc and all it does is confuse me more and more each time I try to read something new.
My question would be, when you walk into a health store(or where ever you buy this stuff), HOW do you know what to even look for????
How do you know what a child needs? Are you basing it on the child's age, or a particular skill area(like you mentioned speech, so are you looking for something that says it helps with speech?) or what? I went into a health store just to look and left after 5 monutes because there was so much stuff!
My other question would be:
Does Hannah have some type of medical issue that warrants all the blood work you mentioned?
My boys never have blood work done.
They don't have any underlying health issues, so we've never had a reason to do blood work. Why is Hannah's blood checked annually(if that's too personal of a question, feel free to ignore me!)?
This is something that intrigues me, but I'll freely admit that it's an area that is all way over my head. I want to make sure that my boys have what they need, but how in the world do I know what they need...without buying one of everything at GNC?????
Thanks so much for posting this! I feel like using supplements puts me "on the fringe". Nice to know I'm not alone. Some of the doctors we've encountered have the attitude that because Goldie has Ds we have to just accept that certain health issues come along with it. I refuse to believe that! Your kitchen counter looks a lot like ours! The probiotics are essential in our house for Goldie to have daily bm's.
It sure was nice of you to post the blood test list especially since I was getting ready to ask you for the complete list again!
Now I have copied and pasted it in a very safe place on my computer you know the one that is ready to go to puter heaven!
Yay! I'm a huge fan of supplementation and I couldn't agree more that we ALL need to be taking probiotics. We take them and so do the boys. I'm going to e-mail you--I have a question about calcium supplements. . .
Thank you for posting this Beth. I can't wait to have my husband read it. He's a lot more science minded than me and can make more sense of it. He's been skeptical about supplementation, but I agree with your viewpoint that if we can afford it and feel it MAY be helping and not hurting, then why not?
We're NDSers, too. We jsut added DHA to Stelly's regime.
Thanks so much for posting this! Bennett is still so young and my husband wants to wait until after his heart surgery before we look into this so I may be contacting you at a later date about this!
Thanks for the update. This is very useful. We've never used it but we may need to check into it. How we'd get it down him, not sure. He has been on pediasure since he was 1. Drinks it all the time. I've hated to go to straight milk because he's not a good eater and I thought this would get him a more complete nutritional diet. His ped asked why he was still on it. I"m like, WHY NOT? He doesnt have a weight problem. (Or at least he NOT overweight. More like very under weight) I'll check out the other things you've suggested.
Just wanted to say "Thank you" for this post again.I had been thinking about putting Ruby on Nutrivene and this post really helped me.I ordered the powdered Nutrivene today.Hopefuly Ruby will take it in her bottle or baby food ;) I will also be putting her on a probiotic.
Excellent post Beth! You remind me so much of another mom in my area who explained this to me too. She has a 12 year old who has DS. He was on Nutrivene but stopped it about 6 years ago. I can't remember why. But he's now on MSB or MSB Plus. Have you looked into that too? What are your thoughts on it? My friend also told me about probiotics. I've just started feeding Matthew Activia yogurt, in addition to his YoBaby. He has never been on orally ingested antibiotics, just ear drops after having tubes in and a liquid steroid to reduce swelling in his throat from a bad cold (not sure if that even affects the bacteria in the intestines). Please email me riahaag at gmail dot com. I'll wait til you get back from your NY trip. In the meantime, I'm going to try to read "Down Syndrome and Vitamin Therapy" by Ken MacLeod while I continue giving him his Polyvisol and Spectrum Essentials(brand) Omega-3/ DHA supplement. Thanks!
I'm so excited because I was able to get Nutrieve, at last! When I read about nutrieve on your blog, I wrote to them asking if they sell it in India. Unfortunately, they weren't. And, just by luck, the down syndrome center at my city have recently tied up with the nutrieve and they are getting it from the US and selling it here. (previously they had tie up for hap caps, which I gave Vignesh for a short while) Thanks for the post. If not, I would not have known the importance of this wonderful medicine.
Oh wait, I just noticed that the nutrieve that we got looks a little different from the one that I see in the photo here. Also, they said this was 'one-capsule-a-day' irrespective of the weight of the person. Now, I'm wondering if its the same or if it is some other product from the same company?
We had used Nutravene when Ellie was 2 (she is 7) and it gave her such bad diarrhea. I would love to try it again, any suggestions or comments on why the diarrhea? We just gave her the recommended for her weight.
Beth, I'm stopping in to link to this most excellent post! Thank you!
Great post -- very balanced and thoughtful. I am curious what your daughter's vitamin levels were before and after the 6 month study that she was in. Did the numbers change? Also, I assume you did a complete blood test before starting the Nutrivene -- have her vitamin/mineral/etc levels improved? Thanks for the info!
Where is Nutrivene? I can't find it on the web anymore. I used to buy it for my daughter with DS - now the website is gone. Can you help?
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