Nutrivene???

[Cbean]

I have been hearing from some of my friends who are newbie moms of kiddies with DS like me who are interested in ?Nutrivene?, a nutritional supplement. Wondering about it myself now and figured who better to ask than my pals here at Uno.

So, anyone have any info or experience with them they can share?

[ValerieC]

Hey ya Cbean,

I've had Alethea on Nutrivene without the Piracetam since Dec. I chose the aspect of the vitamin therapy only because I had an issue with the drug not being FDA approved as well as putting my daughter on a drug without specific testing.

Some have issues with the vitamin therapy because of the lack double blind studies (I think that is the correct vocabulary). I know that too much of certain vitamins and minerals are not good for anyone in high doses.

I studied and sought counsel from friends of mine, spoke to my doctor and decided to go ahead and try it.

My decision was based on the fact that no one I had read about regretted trying Nutrivene for their child. There weren't any horrible side affects, no testimonies about the awful things that happened to their child. I called Nutrivene and spoke to them. They were extremely friendly and what I felt upfront and honest. I had asked why people had taken their children off of Nutrivene and there were various answers from my child turned orange, to expense, to no change, etc. Ask them! Alethea is not orange by the way. LOL

I also began to understand that Alethea's make up is different than mine. Her extra chromosone doesn't allow her body to function to the best of it's ability and so maybe these extra antioxidants will help her to do just that.

So, because I couldn't find any negative "wish I hadn't done that!" testimonies, we decided to give it a try. Outside of my family, no one knew we were trying something new.

Within 2 weeks, I had various friends and acquaintances ask what was so different about Alethea. She began to have an increase in physical and mental energy. Like a light bulb was being turned on.

I do not regret starting the therapy and will continue the therapy for as long as we feel it is beneficial for her.

It's very controversial. You need to do what you feel is right. Research, ask, and if you pray, then pray about it.

We did it because it was right for us!

Valerie C

[CC]

After many hours of reading up on this we chose not to do it. My thinking is, if it truly was a GREAT thing EVERYONE would be doing it. Chris is 12 and 1/2 and when he was born this was the so called "in thing" and I have yet to see any proof that Nutrivene makes any difference except for the pocket book of the people that sell it.

Just my opinion here

[paulinemjc48]

I agree with you 100% Christie .
Pauline

[ashleysmom]

I chose not to do it to and look how wonderful Ashley done without it. However she does take vitamins that the Dr. perscribes for her with extra iron and flouride.

[meghans_mom]

Christine - I looked long and hard at Nutrivene and other supplements like it...I particularly liked Dr Warner's HapCaps. But after much research, I decided that any supplement like these were not right for Meghan. Because supplements are not regulated and some of them are in such high doses, who knows what the long term effects would be. And I feel some of these companies claims are outrageous. I mean to say that a child's "DS features" lessened or went away? Sorry, but I don't think that happens.
I still wonder if it's something we should have done or atleast tried - but I think Meghan does fine without them.
Best of luck with your decision...I think it is a difficult one. laurie

[wrblack]

Cbean,
If you haven't done so already, you might want to visit Dr. Leshin's site, www.ds-health.com/ , and read some of the articles in the Controversies in DS section, near the bottom of the home page. Those in the left column are: Minerals/Vitamins
Amino Acid Profiles
Piracetam
Transcript of CBS' news show: "48 Hours: Hype or Hope?" And you might want to read Dr. Leshin's article at www.quackwatch.org/01QuackeryRelatedTopics/down.html
Several years ago, the mere mention of Nutrivene or TNI would almost guarantee a flame war over on the old Down-syn listserv. Some people had very strong feelings on both the pro and con sides of this issue.
You might also like to know, if you don't already, that there is a Yahoo group devoted to TNI, groups.yahoo.com/group/DSTNI/ Think the group is actually set up and operated by Dixie Lawrence.
Nutritional supplements as an intervention for Ds did not start with Dixie Lawrence and Nutrivene. It dates back to at least the 60's and Dr. Turkel.
As for our personal choices, we knew about Nutrivene, saw some of their promotional material, have good friends whose kids with Ds get Nutrivene, think most opted out on the Piracetam, but we decided not to try this. Still have a small piece of my brain that wonders if some TNI could have been beneficial to Charlie, but it's a very small piece. Charlie got PolyViSol with Iron as an infant, just as Robert does now. Maybe soon Robert will move on to join Charlie in getting a crushed up Flintstone in his oatmeal each morning.
Mine own humble opinion is that Aricept looks much more promising than Piracetam. And research like that being done by our Adopt a Mouse folks is much more promising for finding safe and efficacious treatment for some of the effects of Ds.
Oh, you might also like to know that there is a Canadian flavor of TNI, believe slightly less expensive than Nutrivene, called NutriChem.
HTH, Bob

[jeannette]

Hello Guys,

Haven't posted in awhile. Been a bit busy lately. I just wanted to say that MeKyah is on Nutravene daily supplement(multi-vitamin) since June 04 and DHA since Dec 04 (nutrients found in breast milk). My husband did his research and is a firm believer that the multi-vitamins in the stores does not provide all that is needed for our kids. We would never give her the drug Piracetam or any other drugs that TNI provides only the vitamins. We are not trying to change her appearance. We are concentrating on her health and development. I think the vitamins are a reason why she has not been sick since birth. She had pulmonary hypertention in the lungs at birth and was hospitalized for 1 1/2 months. Long story short, they had given up on her after 2 weeks. She's had some nasal congestion way back but that's it. She has not had any ear infections, and no reactions to her shots. I think God every day.

She'll be 19 months on 6/12 and her development is coming alone fairly well. She only know one sign which is 'more' but she can say stop(when I say 'no', she says 'stop' and then I say 'you stop' and she say "I stop"), she says bye bye, hi, oh, oh(o, o) and of course da da, ma ma. She is beginning to memic gestures and words, if I say good girl, she'll say do dirl, or I say good job, she'll say do dob, she's beginning to point using her index finger. She usually use the middle finger. If I ask her how does she wash her hands, she will do it or if I ask her were is her nose or mouth, occational, she'll point at her owns but most of the time she'll reach for mine but the point is she understands the question. If I ask her to give me something she's holding, she'll hand it to me.

She's been cruising everything she pulls up on since 12 months. She started talking steps at 18 months and is taking more and more by the day. Her balance is really improving. Her PT says she'll be walking anytime now. She can climb the stairs pretty good now. Of course we're behind her as when she stops she don't know how to get down yet and will stop and start rolling. She uses the honey bear straw for drinking, no more sippy cups.

This may not be much to some of you guys but we think its a heck of a lot. Her development could be getting better just because of her age but we would never know for sure.

I've talked to parents that felt it was just a waste of money and other's feel it really makes a difference. So I suggest you do all the research you can decide decide from there.

Jeannette

[PaigesMom]

CBean ~

I like others did all of the research on the different nutritional supplements myself after Paige was born - within 6-9 months thereafter anyway. We even had the owner of International Nutrition - marketed as Nutrivene D come to our DS group and give a presentation for one of the monthly educational topics. He is a very nice guy and his daughter with DS is doing great - but most people *I* know, decided against it, for various reasons, mostly concerning the high doses of vitamins which no one knows the long term effects of at this point - and there may be none, who knows. Additionally, it is easy to give while the kids are babies, but apparently tastes extremely gross and as the kids got older, was harder and harder to disguise. I know only a very few (maybe 3) who chose to try it and they ended up quitting by age 2, and could never say whether or not they thought it helped.

Regarding developmental milestones. I usually dont talk to much about them. Paige did not and does not currently take vitamin supplements, including regular Flinstones, or any store brand. She walked at 14 months, rolled over both ways by 4 months, sat up unassisted by 7 months, crawled (this was actually her biggest gross motor delay) at 11 months. She knew about 30 signs and used words and 1-2 word combos by age 2. She just turned 5 a week ago, she knows all of her colors, recognizes her letters, counts to 10 consistently, can completely self dress correctly (and is demanding about doing it, lol) and she speaks in 5-7 word sentences. Most of the time intelligibly, of course there are times she is unintelligible, mostly when she is going to fast.

She does, however, have diagnosed ADHD Impulsive disorder which is medicated, and I am told all of the time to give her Omega fatty acids and something else, which I cant remember right now. I might try that.

I do think it is up to you and a very personal decision. You can call International Nutrition and they will give you a free personal consultation.

Good luck....Debbie

PS. Regarding pruney feet/dry skin/bleeding cracks --- yes, yes and yes, she does have skin issues. I have tried some of the things you mentioned, and have also tried Amlactin per the dermatologists recommendation. I have found nothing to *really* help her. I just found something called EMU OIL, and I am getting ready to try that. Have you heard of that??

[jeannette]

Good luck in your decision, Cbean.

Paiges Mom........sounds like Paige is doing really great!!! Excellent job!!!! Yes, nutraveine is strong but MeKyah still eats it in oatmeal, yogart, apple sause, mashed potato, basically anything that's mushed and will also take it in her juice, so far anyway. We don't give her the full recommended dosage. We'll continue to give it to her as long as she will take it.

Jeannette