Kim, no apology needed for me or many others here i'm sure. you have every right to be excited about it and to share it. i, too, agree with Tom's advice. hope that Kairi is doing better - not crying/hurting as much from surgery. aj

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Momma to Janna Macie (CAVCanal/Mitral Valve Repair-T21-02/02/05)
Wife to Joseph (TOF & still thriving)



"Where there is charity and wisdom, there is neither fear nor ignorance." St. Francis of Assisi

"God has not always answered my prayers. If He had, I would have married the wrong man several times." Ruth Bell Graham

Don't worry...this is and O-L-D debate. Honestly, it hasn't changed one tiny bit in Angela's 9 years! Like politics, it's often viewed as a "taboo topic".

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~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 29, Noah 27, Tyler 26, Bryon 26, Angela 19 (DS), Axel 14 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 10 (DS adopted from Serbia 12/2011, AAI non-fusion), Abel 12 (DS adopted from Serbia 4/2013) Audrey 10 (DS, adopted from Serbia 3/2014) Do you think our next is a boy or girl?

-giggle giggle-
Ok... We are all in high school, and Tom is the principal. He wears button shirts, and intimidates all the kids. (teehee and i dont even know him) Jeff is the guidance counselor.... The kind that has a wastebasket full of letters and such. (and maybe a shot glass in his desk drawer) His door is usually locked, though... Because he's out in the parking lot... lol
Then there's Leah, she's like the class president, nice to everybody, but focused. (Id probably copy her homework) Then Amy... who is nice to eveyone... Student council type. THEN there is me and Kelley.... Suspended for smoking in the bathroom.... Or something to that effect.
It's so funny. And Jeff.... You are right. I think it is fear. For all of us, all points of views. That's all right, though.

People don't think sometimes. I know I don't. For whatever reasons, the whole debate and this forum is always compared to family. Isn't it always family that drives us nuts yet binds us together in the universe? Hmmm???
There's always two sides to a family, though. Grandma who is rich and buys you expensive gifts, and then there's the aunt and uncle....The ones who come over and don't flush your toilet, and then cook up your pet pot bellied pig....

Did that make sense? ROFL (it did to me, told ya' i was weird)

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Amanda, wife to Tim- Admitted STL Cardinals NUT!!! World Champs!

Elizabeth Cameron 3/11/99
Caleb Mark 8/29/01
Emily Robin 10/22/02
Timothy Luke 3/09/05

Hi. I tried nutrivene when Peter was a baby and all of a sudden he started sitting up. Who knows if it was coincidence. I had to stop giving it to him because of the cost. When he was a baby I read an article about Chris Burke. His mother said she gave him a multi vitamin just like his siblings. That is all Peter gets now. It is so much cheaper. Peter doctor told us when he was a baby to hold off on the supplements until after his heart surgery and then later on if we want to try it then go ahead if nothing else he would be a very healthy kid. To this day, he is the healthiest in the house.

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Maryellen
mom to
Becca 1/25/97
Peter 1/21/98 DS
Phillip 9/26/00
http://i10.photobucket.com/albums/a145/mamatarling/DSCN1750.jpg
http://i10.photobucket.com/albums/a145/mamatarling/DSCN1819.jpg

I'm not sure either. I know that taking B vitamins makes ME feel more energetic. So would TNI give Daniel a boost? But then I worry a bit about the "snake oil" side of the TNI because of the large cost (I am a skeptic - about EVERYTHING - at heart). Then, just yesterday Daniel and I were out by ourselves at Walmart shopping and he was sitting in the cart and his head was turning this way and that way and he was so interested in looking at everything and so alert and engaged! It was so different for him to respond so much to his surroundings that I noticed it right away. Daniel's other milestones have often been "all of a sudden" like that too. So then I wonder, if I had started him on TNI last week, I would assume it was the TNI helping him. A comprehensive double blind study would be nice. Just rambling and flip-flopping here.

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~~Bayley~~
Elijah - 22, Gracie - 20, Anna Joy - 18, Rose - 15, Zeke - 13, Daniel (5/11/04 - DS)

Callum started really taking off with his walking in the last couple of days, if I'd have started him on a supplement that I'd be thinking that it was that. This product has been around for a while, a double blind study should have been done by now, I'm a sceptic until that happens but they sure know how to tug at parents heart strings (and purses).

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Naomi
Mum to Callum (DS) 3/03 and Kieran 8/04
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We did try Nutrivene for Ellie for about 3 months, but it really gave her the runs, so I took her to my herbalist gal we see and she tested Ellie for Vitamins. Another vitamin was better for her needs and she has since been regular. My naturopath said nutrivene vitamins looked like they had the right vitamin amounts for kids with Downs. But like I said Ellies body was telling us something else. she is never sick, but she also takes some immune booster items too as well as Zinc. If you want to know about the specific things she takes, just private email me.
If I could figure out how to post photos of my Ellie, I sure would love to share her mug shots!
jenene

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Wife to Ty 1995
mommie to
Ben 4/10/00
Claire 12/11/01
Ellie 7/15/03 ds

Does anyone know what "too high" means regarding iron in reference to "our kids"? I've been giving my daughter (gasp - just shoot me now for being such a provincial ignoramus) Flintstones-type vitamins, just 1/2 a day because I happen to fear over-supplementation and she's not four years old or over, hence the 1/2 tablet a day, and now someone has gotten me thinking about the "cheap iron."

I've never given her iron-containing formula or formula at all, nor those infant vitamin drops, nor the iron-fortified cereal (causes constipation around here.) I did give her a small amount of zinc for a short time in conjunction with the half-Flintstones because I was worried that her thyroid might have been headed in the wrong direction (it turned out fine.)

As far as I saw at her last blood workups, her iron was right in the middle of the target range. What does "too high" mean in terms of blood hemoglobin or whatever measure is used?

Seems that this vitamin business is a divisive issue with DS issues. Just as a cochlear implant is a divisive issue with the deaf and Deaf community.

A cochlear implant is a technological advancement that allows a deaf person to "hear" again, not in the same sense of hearing as a hearing person does, but folks can talk on the phone with a cochlear and listen to the radio etc. It works with most, doesnt work for some. Opponents of the cochlear implant believe one should be proud to be deaf and stay deaf, and not "try to be hearing" as I was accused of.

Only thing that remains to be seen is if the vitamin actually works. Given the placebo effect, it may, or it may not.

Personally, I try not to take vitamins unless I am sick, take Vit C, small doses of echinacea, LOTS of garlic. I generally keep my body free of any unnatural chemicals and let it monitor itself naturally.

But there are other people who take hordes of vitamins every day, they knock back whole cups with each meal. More power to them. Maybe they need to, maybe they feel they are better off with the vitamins than without.

Point is - its a personal belief, a personal choice. Do it if you wanna, dont if you dont wanna. Simple as that. We decided not to give our child the vitamin because we want to see what she can do on her own.

Damned if you do, Damned if you dont, just respect each others right to vitamins!

Hi
I'am mum to Dominic 19 months and Elliott 11 years.
Dominic's been on Nutrivene D since he was 13 weeks old, also omega 3 and 6. He's amazing, don't know if it's the supplements or not, but I would'nt change a thing.
He's been pulling up and standing and walking around his cot from 7 1/2 months, walking independantly since 17 months, he has a cute/wicked personality and is up to as much mischief as he can get away with and heath wise doing the same as my other son did at the same age.
Has a small PDA but it's fine. He got chicken pox at 5 months. Aged 1 started local nursery 4 days per week, when I went back to work. Picking up the usual coughs and colds from every one at nursery, which tends to stay with him bit longer than the other kids, but he bounces back pretty quick.
Recently doctor gave him iron supplements, to boost his immune system, which un nerved me alittle because of the Fenton effect. But when he's teething (which seems to have gone on forever) he has loose stools and would't eat much until teeth through, also he hates meat. So I think he was right that his iron is low and thats why his colds last longer, (also his dad and brother has Asthma, so I have a feeling he has it too).
There lots of stuff about TNI on the net, the Canadian version has Iron in it, I choose Nutrivene because it does'nt and appeared to be the one most used by parents. Theres also a European version. I'll find the web sites I researched and post them, then its up to you. The Down's syndrome Association and Down's Syndrome research foundation in UK are just collating data on a trial of Vit supplements and folic acid that will be reported on in the New Year, so that should be interesting.
Best wishes and happy days to you all and your familys
Maxine

[Edited by waith on 10-06-2005 at 02:27 PM]

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Maxine UK. Mum to Elliott 20 and Dominic 10 DS.

I live in Nashville and heard about Dr. Leichtman through family in PA. I have taken my 3 year old to see Leichtman twice when he had his clinic in KY. (They say that you can submit the paperwork to your insurance and it should pay, though I haven't done it myself.)
Dr. L was very helpful to us on our first visit because I was very worried about Joey. He had AVSD, serious reflux, weight gain issues, as well as serious constipation and was tested for Hirschprungs disease. I've had a hard time with traditional medicine and their ideas of cures- prescription drugs, or nothing! Leichtman gave me some dietary recommendations, and of course he hammered on the supplements (at the time it put me off a little) but I finally have started Joey on them. I can't report anything significant at this point, but I'm very optimistic!
But back to Leichtman, go to him with specific questions. He will chart your child and do a similar kind of testing that therapists do, but he has given me some pretty good pieces of information each time we've seen him. Worth 300 bucks, hard to say, but any pearl of wisdom is a pearl for me! He has been working with kids on Nutrivene and doing brain scans with significant results. The paper has not been published yet, but I look forward to hearing more. I am also making a push to have him come to Nashville and hope that happens within the year. There's not a lot of alternative medicine here, and the primary source of EVERYTHING we had in early intervention has been Vanderbilt. Great in some respects, not so much in others.

I just started my 3 year old, Joey, on the vitamins within the past week, and have yet to give him the full dose because he notices the taste of it (it leaves a really yucky aftertaste!), but even at half-dosage his teachers are noticing a change in him. He is more verbal, more alert, and exhibiting more typical three-year-old behavior. I say, "this is good, right?!?!!" And it is BEAUTIFUL!! Coincidence? Perhaps.
One point I read in the thread was questioning the negatives of the supplements and all I've heard in Nashville is "high levels of vitamin A in our kids systems". When I asked Dr. Leichtman about that fear he said he had YET to have that happen with the hundreds or more children he has had on the vitamins. Keep on keeping on, I'm saying. I am focusing on the positive until I see a negative. I have started myself on fish oil. Joey is next. The price of the supplements is definitely a negative, but hopefully they, like many other things in the past, will become more affordable the more mainstream they become. Again hoping for positives!!
Tommi aka Joey's momma

Hi All,
I've read varios posts about this subject throughout the 2 1/2 years I've been on this site. Our PT gave us some info on it the other day and I've been reading the posts. I'm still a bit on the fence but I think that I may seriously give it a try. Thanks for all the info both pro and con.
terri

I've decided I want to try Nutrivene-D for Liam... how much? Where do I get it?

I can find places to order it online in different forms and amounts... which form? Which amount? There are several different formulations. Daily enzyme? Nighttime formula? Antioxidant formula? Daily supplement powder?

Thanks --

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Father of Liam (DS, '08 ) and Charles ('10).

Will wrote:

I've decided I want to try Nutrivene-D for Liam... how much? Where do I get it? I can find places to order it online in different forms and amounts... which form? Which amount? There are several different formulations. Daily enzyme? Nighttime formula? Antioxidant formula? Daily supplement powder? Thanks --

I suggest you ask your family doctor first, and if he or she has any sense, they will point out that there is not a single clinical trial or scrap of evidence that any of these supplements work, and that much evidence shows that they are counter-productive. But if you must ..... (sigh)

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There is a theory which states that if ever anyone discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable.
There is another theory which states that this has already happened.

We tried it briefly with Mikey and saw no changes. In fact, that was about the time Mikey started showing signs of autism so we ended it. I am not trying to say Nutrivene caused autism. I'm just saying we became concerned about other things and moved on.

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Tom

Dad to Beth ( 22 ) and Mikey (17 - Ds and PDD-NOS)
My Blog - Random Thinking
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We tried this but not for long enough to be able to give you any anecdotal information because Jacob was diagnosed with silent aspiration and is now nil by mouth. He gets all his nutrients through his PEG feed. Neither company could advise about supplementary vitamin feeding so we stopped it.
I do occasionally give Jacob fish oils and ginko biloba, when I remember, because both have small study research data to back up their claims - sorry I have no links but you could use google. I add these to his PEG feed because I guess the nil by mouth forumula has to be cost effective and could maybe benefit from supplementation, just like I give my regular children more oily fish, fruit etc than they might otherwise eat.
So, all I can suggest is doing a bit of research online and deciding for yourself. Some smaller research studies are worth looking at because no academic research unit can get a grant for a larger study until the smaller ones show something worth following, and it is still early days in terms of DS research - autism gets more funding!

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Rachel
Mum to Thomas 05, Luke 07, Jacob DS 09. Married to Stephen.

I usually just order directly from International Nutrition because it is a simple way to get that as well as a couple of other supps that we use.

http://www.nutrivene.com/product.php?id=20

I suggest trying the daily vitamin then slowly researching & adding the others. They are other supps you might want to look into also like fish oil & Longvida Curcumin.

You will likely also get more information & replies if you try asking the question on message boards that are more geared to non mainstream therapies/ TNI etc.

There is a link to the Unlimited Potential board in my siggy which is a good example. Are you on Facebook? there are several good groups there including Unlimited Potential, The Down syndrome action plan & Trisomy 21 Nutrition & Supplementation.

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Laura - proud mom to my 4 girls

http://downsyndromeupupupandaway.blogspot.com/

http://community.babycenter.com/groups/a6729133/unlimited_potential