Targeted Nutritional Intervention FAQ:
Q: What is Targeted Nutritional Intervention?
A: Please see our articles, œWhat is Targeted Nutritional Intervention (TNI) for Down Syndrome? and "Rebuttal to Dr. Leshin's & Quackwatch's article on Nutritional Supplements."
Q: What does "TNI" stand for?
A: Targeted Nutritional Intervention
Q: Is it worth it to spend so much money on these special vitamins?
A: Absolutely!! One of the main things we hear against these vitamins is that "they are expensive" & "I can't afford them." Most people in this day and age can afford these vitamins, if they were to re-evaluate where their money goes. Plus, if it is realized how important these are, they would most likely take a "top priority" on many shopping lists.
Q: If I can't afford these vitamins, what can I supplement my child with?
A: First, I would suggest contacting International Nutrition (Nutrivene), as they have/had scholarship funds to help individuals buy the vitamins. They also may have other ways of helping you out. If you can't afford the vitamins, International Nutrition has helped in this area before. You can also supplement with various other vitamins and nutrients that you can get by themselves, if need be. If this is an option you would like to try, contact us and maybe we can help you figure out an individual program within your budget.
Q: Is a regular multi-vitamin sufficient to give?
A: Nope, not at all. In the very near future, we will have a comparison chart showing the difference between a regular multi-vitamin and NuTriVene-D, Lord willing. A big concern with some of them is that they have Iron in them. You do not want to give extra iron (to anyone, let alone those with Down Syndrome), because it aids in the SOD (Superoxide Dismutase) process and creates more cell death and damage (see this link for more info - Iron, Free Radicals & Oxidative Injury). They also do not have all the amino acids & anti-oxidants that they need to help counteract the extra oxidative stress they are under and other issues. More details to come soon, Lord willing.
Q: What if I don't see any results from the vitamins, should I keep giving it?
A: Yes, definently. Don't be looking for results that you will see from the vitamins. TNI *is*, whether you visually see it or not, doing things in the body of a person with Down Syndrome. Due to their extra 21st chromosome, they have an extra gene dosage of certain genes that are on the 21st chromosome, thus creating metabolic imbalances and biochemical problems (in simple terms). These vitamins are there for that reason - to help counteract some of those imbalances and problems that *are* going on inside of a Down Syndrome body.
Q: Have there been double-blind placebo studies done on TNI?
A: There is one that was done in the UK for the past few years, and the results should be out this month (May '06). There have been a few other studies done on TNI as well, most/all of them were not double-blind placebo studies. Click here for the studies that have been done (we'll have this info up soon, Lord willing, but for the time being you can check them out here and here)
Q: My child cannot tolerate Nutrivene-D very well. What could that be & what can I do?
A: It depends on how and what he cannot tolerate. If your child seems to be spitting up more than usual, or if he has some issues with his stools (loose stools/diarrhea), there is a customized formula that Nutrivene sells that has less Vitamin C & no enzymes in it. Contact International Nutrition (Nutrivene), for any problems regarding these kind of issues.
There is another issue that about 10% of all people (Down Syndrome or not) struggle with and that is not being able to handle methyl agents. Some of the things to look for with this are hyperactivity and stimming. Again, custom formulas can be made by International Nutrition.
Q: Are there several kinds of TNI?
Q: Which kind of TNI do you recommend? Which one is the best?
Q: I am in the UK, can I still buy Nutrivene-D? Or, are there any European brands of TNI?
A: Yes, you can order Nutrivene-D from International Nutrition, as they also have a european distributor. There is also a European brand of TNI that is available only for those in the UK. It is called Euro TNS. Here's some links for information about it -
Q: I don't see any facts, other than anecdotal evidence, how do we know these really are what they say they are?
A: There have been numerous studies about the different processes that are going on inside a body of a person with Down Syndrome to show that supplementation would benefit someone with Down Syndrome. To see information on this, please click here.
Q: Has there been research done on these vitamins?
A: Yes, there has been. Please see this page for more info.
Q: Do you do blood tests regularly to check their levels of certain things?
A: Yes, absolutely. It is recommended for those with Down Syndrome to get blood work done regularly to check CBC, thyroid, etc. With giving the vitamins, you just add a few more things onto that blood work lab sheet. In this way more or less of certain vitamins and/or amino acids can be adjusted.
Q: I hear these are just "mega-vitamins", is that true?
A: No, it is not true. Yes, some of these ingredients may be in a higher dose than you'd give a person without Down Syndrome. But that is because a person with Down Syndrome has different metabolic imbalances and biochemical problems than a person without Down Syndrome. It seems as though it should be pretty easy to understand that someone with Down Syndrome is going to have different metabolic and biochemical problems because they have an extra chromosome. And, on that extra chromosome are 225 genes - some of which are over expressed. For more regarding how genes are overexpressed, please see our aritcle that covers alot of that here.
Q: Are there any side-effects to these vitamins?
A: No, for the most part. You need to monitor blood levels of certain things to make sure you are not giving too much and to make sure they are getting enough. If they are deficient in certain things, that can cause problems right there. It can also cause problems if they are too high in some things - but most of the time that is not the case. Most of the time, the opposite is the case - they are deficient in nutrients.
Q: When should I start giving these?
A: As soon as possible!! The sooner you can start giving Nutrivene, the better! The sooner you give them, the less damage is done to the brain and other systems in a Down Syndrome body.
Q: How do I know what dosage to give?
A: Nutrivene gives the dosage on the bottle and it also comes with a paper with the proper dosage. You can see how much your child will get at this link - Riverbend's Dosage Calculator.
Q: Are there message boards specifically for these vitamins?
A: Yes, there are. See our link page for these links. They are the only 4 message boards we have linked to on our site.
Q: What vitamins,that International Nutrition sells, should people with Down Syndrome take?
A: Trisomy 21 Research Foundation recommended protocol (as of July 2010) is:
- NuTriVene-D (or AD - adult formula) Daily Supplement
- NuTriVene-D Daily Enzyme
- NuTriVene-D NightTime Formula
- DHA/EPA Product
- Probiotic Product
- Piracetam and/or Cholinesterase Inhibitor Dru* Aricept or Exelon
- Vitamin D
Not all individuals will be able to take the Daily Enzyme, as anyone with reflux should not take it. NuTriVene-D Daily Supplement & NightTime Formula, we highly recommend if at all possible. DHA/EPA is also very important to give.
A:The microencapsulated powder is still a powder, but it has some kind of encapsulation around the granules of the vitamins, which makes it so that it does not taste that bad. This is the way to go for anyone who cannot swallow. This cannot be given being mixed with liquid. This has to be mixed with any other kind of food. The powder does not taste good at all, if you can, go with the microencapsulated powder. The powder, though, can be mixed with liquids. So, it would be ideal for an infant or someone who is only able to drink/eat liquid. For any and all who can swallow, the capsules are the way to go!
Q: How can we give the vitamins (the powder and/or microencapsulated powder)? What can we mix them in to be able to give them?
A: You can give the powder in either a sauce, fruit spread or the likes or in a drink of some kind. The microencapsulated kind can be given in a sauce, fruit spread or the likes. We mix the microencapsulated powder in with fruit spreads (Trader Joes & Crofters sells some really good ones). We also mix it in different sauces at times (Trader Joes sells some very good sauces that are a mix - example, apple & apricot sauce, appleÂ & raspberry sauce, etc). The fruit spreads is what we have found to work best to mix the microencapsulated powder in. We recently have found that a caramel creme frosting works great! The recipe can be seen at allrecipes.com.