I was just Wondering if you AWESOME mothers could give me some Pros and cons of TNI?

thanks muchly

This is just my opinion and it really is a personal decision. It's controversial in the Ds community so there are lots of opinions both ways.
I'll make this a Pros and Con 101 type of thing

I'll start with the cons:
No real "proof" that it does anything. A double-blind study has never been preformed on any of the TNI formulations. The "success" stories you hear are antedotal.
It's expensive and not covered by insurance.
Most pediatricians are not supportive.
Sometimes kids will refuse to take it (like my daughter). NVD tastes horrible, MSB is flavored.
Some kids have adverse reactions to some ingredients
It may help, but it is in no way a magic pill. The makers promise more than will deliver. So take it all with a grain of salt.


Pros:
The formulations address many issues that bodies with T21 encounter ie. oxidative stress, nutrient malabsorbtion, growth, sleep etc.
In our personal case there have not been any adverse side affects
There are many kids/and adults who have been doing it for years with no side affects and seem to be doing great

There are other supplements that many people take too in addition or besides the TNI formulas like omega-3s, ginko biloba and various others. Some parents research it on their own and do their own "cocktails". You really have to research if you are thinking of going this way. I always say start small. There is a Yahoo group called DS-TNI which you can join and find out more too. You'll hear for sure that Nutravene makes a special prenatal to get you started before your baby is even born

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Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

So Form What I've been reading it really does no more then daily Vitamins?

Im not sure If Im comfortable with playing around on my baby!! by all means If I was taking it and Had no side effects I might use it on her, Right now Im so unsure

Jessica,

I strongly believe TNI is the reason AJ is doing so well cognitively. In the last two years, there have been two occasions when we have had to take a break from his daily TNI. Both times his EI people, while being completely unaware of any TNI issues, documented observing him regress in his skills. We have seen how well AJ does when he takes the TNI regularly....and we have seen how he does when he does not. I know in my heart this is not hurting him, but is helping him! Since learning AJ takes TNI, his EI people are now recommending it to their other clients.

Last week during his EI appointment, his teacher was raving about his progress. I asked her to estimate AJ's cognitive age. He is now 20 months, but is ranking at 21 months cognitively. Of course he does have delays physically, but he is one smart little boy!

Feel free to write with any concerns.

Ibby

Each item in the formulations has a reason relating to Ds as to why it's in there. And it is more than vitamins. Things like enzymes, amnio acids, tumeric, blueberry extract to name a few. It's not a unique thing to people with Ds. There are supplement formulations out there for people with autism, other metabolic issues, cancer you name it.

I think if you are already comfortable with supplementing and alternative medicines (disclaimer: my family is) then it is not so scary of a leap to find safe and practical supplements for your child with Ds. Most of my friends locally with kids with Ds or autism do supplements whether it's a premade formula or one they have come up with with their homeopathic dr. , pediatrician or nutritionist. Like some just give omega-3's, or they may give a couple things if their child needs immunity or digestive help.

But always remember to do what feels right in your comfort zone and again it's great to ask a lot of questions!

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Liz - Mom to Walker (3/24/02), Eliza (Ds) (5/6/05), Alden Jane and Noah Henry (5/2/08 )

Kayla's been on MSB+ since she was 3 months old. I treat it more like a targeted multivitamin than expecting any big improvements. And Kayla is NOT particularly "high functioning" even being on TNI since 3 months old, partly because she was also diagnosed with autism.

So, when you hear great stories about TNI, it could be that the child would have been that way anyway, there's no "proof" that it is the TNI. But we still keep her on MSB+ anyway.

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Ecki



MomMom of Kayla (Ds/Autism 4/5/04) and Laurie (PDD-NOS 7/12/01)

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i am up fo trying anything that will make my babies life easier, the only real issue im having is, being a first time mom, will I be looking for "reactions" to this, Too hard? if that makes any sense

I only found out about TNI through a co worker of peters, and the more I think about it, the more I want to ask my GP and OB about...Hmm...

thanks for the help, This is getting interesting

My Amarli has been on msb+ since she was 2 and a half months old. I cant really tell you if there has been a big change as i dont know what she would of been like without them (she's only 4mths). What i can tell you is that she she has been rolling since she was 3mths and at the moment is trying very hard to sit up by herself. My ped didnt see any reason not to try them but you must remember im in Australia and not many people use TNI here. I'm basically using them to keep her immune system up. She will be having bloods taken at 6mths to check her thyriod so i will also check her vitamin levels etc. Even though it will be expensive for me as we have to order them from US(right now we are using free samples) i will be continuing them as what i did notice was that she was way more alert after only taking them for a few days, we have also had no reactions to them. Good luck with your baby i'm sure you will do whatever you feel comfortable with when she gets here.

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ROBYN mum to 5 girls & 1 boy:
KRISTEN (15.6.83)
KIAYA (16.9.86)
RUSSELL (22.7.89)
KOEBII (5.6.93)
MUNDINARRA (23.4.98)
AMARLI Ds(24.10.07)

"From little things, big things grow"

Justin has be on Nutrivene since about 1 week old and I think he is doing great. While I have no way of knowing if he would be different, I do know he has been extremely healthy. He barely gets colds and if he does gets over them quickly. He has never even been on antibiotics.

The makers of Nutrivene also sell a prenatal formula for you to take especially formulated for mothers carrying a baby with DS. Here's the link

http://www.nutrivene.com/view_item.php?ProductID=9&

Join the yahoo group mentioned above and ask more questions if you have them.

I know there is alot to research and consider. I haven't answered any of your other posts but have seen them. Welcome!!!!!!!!!!!!!!

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Carol
Blessed Mom to Kaitlyn 6/92, Andrew 4/95, Aimee 2/98, Hannah 3/01, Stephen 2/03 and Justin DS 12/05

Elias was on a multivitamin when he was baby, and then we just stoped.
then on past septemeber we tried MSB+ with no difference.
we are back to multivitamins, mostly for healthy reasons, althought Elias has always been pretty healthy.
some friends just recomedn me two different natusit stuff, that i will try.. to see if i can see any difference.

i guess it doesn't hurt to try.

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Ali (25) , wife to Felipe since nov 2004 & mom to Elias (Feb 21 2005)

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Blog about Elias' life mihijoelias.blogspot.com

I know I'm posting late here, but hopefully it will help someone else...

We used Nutrivene with Cassie for about four months. We thought that with her celiac disease, she may be missing out on some core nutrients. And we were wondering if maybe some behavior type issues were nutrient related, after doing some research (especially about Omega 3's).

We stopped them when she was diagnosed with epilepsy, because the doctor that prescribed the supplements never did a formal nutrient check on her, which raised a red flag the more we thought about it - how could a doctor prescribe additional nutrients if he's not sure a patient has deficiencies? When we found out that there was a correlation between ginkgo and epilepsy (whether minor or not), we stopped the supplements.

We kept her on the DHA but removed the ginkgo and replace the Nutrivene with a general multi vitamin. And we've seen no difference whatsoever in behavior or in cognitition (she's a smart kid anyway - it's hard to judge that). The only change we've noticed is that she isn't gaining nearly as much - in the time she was on the supplements, she gained about ten pounds! That could have been a coincidence because it was over the summer and her eating/activity schedule was so different, or it could have been the supplements. We also noticed that if we stopped the DHA for a while, her behavior and constipation was worse.

Good luck with your decision. I know what you're going through. You want to do every single thing you can to give your child everything he needs, but at the same time don't want to do anything that could hurt her. I wish you the best!

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Susan
Mom to Cassie
(11/10/98 DS, Partial Complex Seizures, Celiac Disease)

nobody liked it at all! No matter the flavor~!

But I have been using it with Devon! I have seen a marked increase in his behavior and any cognition skills he had all of our visits...... but that also could be just that he is used to us know and that he is getting consistent discipline, fresh air, exercise and I am making him take care of some of his own needs and such (except today at the buddy walk where it all went to hell!)

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Jane
mom to
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Adrian Elliott (7/04/03)
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Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie


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Carson has been on NV-D since he was 3 months old. I have no idea if it helps or not currently, but I give it to him hoping that it will be useful in the long-term to reduce the cognitive decline that can happen later in life. For us it is cheap, there have been no adverse side affects and we aren't willing to take the risk that it could have worked and we didn't try it. There are people that feel very strongly one way or the other. I am not among those - I only have one child and this is a very personal decision. I will tell you though- go with your instincts and don't let others feelings impact your decision.

Kayla

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,
,


Callan 7, Kenna 5, Carson 2
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Mikey has been on MSB+ for a couple of years. Michel always seems to notice when I forget to give it to him. He seems to be off in his behavior (more aggressive, less cooperative, less interested in school) when he doesn't get it.

_________________
Tom

Dad to Beth (17) and Mikey (13 - Ds and PDD-NOS)
My Blog - Random Thinking
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We tried MSB+ with Callum about a year ago, and noticed no difference except that his tummy seemed to get upset.

There was a clinical trial done in the UK based on giving some vitamins and antioxidants and the result was that there was no difference in cognition between the children on the supplement on those not http://www.bmj.com/cgi/content/full/bmj.39465.544028.AEv2?q=rss_home which concluded that

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Naomi
Mum to Callum (DS) 3/03 and Kieran 8/04
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naomid wrote:

There was a clinical trial done in the UK based on giving some vitamins and antioxidants and the result was that there was no difference in cognition between the children on the supplement on those not

We haven't seen any difference in cognition. It seems to only effect his behavior.

_________________
Tom

Dad to Beth (17) and Mikey (13 - Ds and PDD-NOS)
My Blog - Random Thinking
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naomid wrote:

We tried MSB+ with Callum about a year ago, and noticed no difference except that his tummy seemed to get upset.

We have tried both with ME and this is always our problem. So, we do just a multivitamin. I love wholistic approaches though, and wish I could have continued with either one. We will keep re thinking this as she grows, but not worth the tummy upset for now. Di

I don't have strong feelings about TNI, however we do use it (Nutrivene D, etc..). Erin has been as healthy as my other six children, which is my primary motivation for using it. That, and the hope that it may slow the progression or lessen the rate of Alzheimer's that is prevalent with our kids when they become adults.

Just a note regarding that study... I honestly didn't follow it or read into it much at all, but I do know that on another TNI forum that I am on, many were saying that the study was not very useful right from the get-go because the amounts of the antioxidants being used were so small compared to what is actually in TNI. So the study was not comparing apples to apples at all.

Kris

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Erin - 3/01/07