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For Families W/Down Syndrome

post #1 of 10
Thread Starter 
We've been doing research on targeted nutrition intervention for kids with Down Syndrome and have decided to start DS on NuTriVene-D. Has anyone else decided to use TNI therapy? Does anyone use NuTriVene-D? If you're out there, I'd really like to start a thread about it. What are your thoughts? TIA.
post #2 of 10
Thread Starter 
Just wondering if no one else is doing nutritional intervention or if you are and don't want to talk abou it or if you have really strong feelings about it and don't want to start a debate..... I really would just like to share thoughts with others who have thought about this.... no hidden agenda.
post #3 of 10
IlaBrook, this is a pretty small, low-traffic forum, so you may not get any posts right away. But I'm sure it isn't because people aren't interested.

I know there are one or two mamas here dealing with DS and I'm sure when they read this thread they will be able to give you some information.
post #4 of 10

I haven't found enough evidence to convince me to try it. We waiver back and forth on what to do. I would love to discuss this more. Our pediatrian who sees a lot of patients with Down syndrome said he doesn't see any benifit or think it is worth the money.

I think if we feed our daughter a well balanced diet and a wide variety of foods she will be doing well.

I don't know it is such a touchy subject. How do you know if it actually helped or your child just did well?
post #5 of 10
Thread Starter 
Our ped said pretty much the same thing. What finally convinced us was Dr. Schmidt's Healing Childhood Ear Infections. DS has chronic fluid on his ears... last winter he was on antibiotics constantly & got tubes in Jan. I decided this year to approach things a little differently & wholistically (I woke-up, in other words, & decided not to be so stupid!) : Anyway, Schmidt explained the 21st chromosone a little differently than I had heard it described before. He also pointed to research done by Trisomy 21 Research that talked about the importance of nutrition in combating the damage done by the extra chromosone. We decided that for $70 (more or less) a month, it wouldn't hurt to give it a try. At the same time, DS began receiving acupuncture treatments & receiving adjustments from a chiropractor. He will also begin to receive treatments from an osteopath in early Feb. We are trying everything we can to keep his ears clear without having to put him through surgery again. He goes back in for a hearing test later this week but just from observing him, I really think his hearing is improving and his vocabulary has definitely improved. But like you said.... who can tell what is causing his hearing to improve? It's hard to say. We're going seriously broke b/c of course, our insurance pays for none of this but it's just money, right? Anyway, that's probably way more than you wanted to know about our lives. Thanks for writing in... I would love to discuss it more, if you would like. Take care, Brook
post #6 of 10
Do you want to discuss more her or PM's?

We have been sort of tied up with Veronica's heart problems right now. She had a sedated echo yesterday and her mitral valve leakage has gotten worse since her repair.

No natural approaches for this one. The plan of attack is blood pressure reducing meds and wait to see how she does as she gets bigger.

I would love to see what you have been reading links etc. I know Dr Leschen(?) is against it as well and he has a son with Ds.

$70 a month would definately be too much for us right now. I know some people wait until the preschool years when you are more likely to notice a change. Veronica is only 9mo.

Just curious have you tried cutting out dairy? I know we are vegan and Veronica has had no problems. 2 stuffy noses so far but her ears are great. Just a thought.
post #7 of 10
Thread Starter 
I'm fine discussing it here or off-line... it doesn't matter to me!

I, finally, (about a month ago) bit the bullet and took DS off dairy which pretty much means we're all off dairy.... & let me tell you... I love my dairy! : I thought it was helping with the ears but we just had that hearing test today and no change in his hearing scores.... neither worse nor better. I feel so helpless right now. Back to the ENT on Monday just so he can tell me how much damage is being done to DS's development b/c DS can't hear. Like I don't know that already.... I just don't know what to do... once again. I'm going to read through Schmidt's book again this weekend and go from there.

We've only been on the supplements for two weeks now.... it takes a full three weeks to be on a full dosage. I don't know how long it will take or even if we'll even see any change. I just hate feeling helpless. I'll try to figure out how to include links here to one of the sites that has a lot of information about nutritional supplementation. DH just got home.... I'd love to talk more. Thanks for listening.... I'm having a really bad day.

post #8 of 10
Hi - I haven't been logging in for a while and just saw this topic. I've never heard of this. I wonder why, with everything I've read since DS was born?

Can you recommend some books I should read to start me off?

post #9 of 10
Oh, and Brook - I'm so sorry you're feeling blue. I can so relate to your frustratation and feelings of helplessness right now. I don't think there is anything wrong with we parents of special needs kids feeling angry at the world every now and then.

Sending you lots of supportive hugs
post #10 of 10
Thread Starter 
I'm a little short on time this morning but I wanted to respond before I forgot. : The link above that I posted to chrfath
didn't come up as a link but if you'll cut and paste it and then look on the left-hand side of the page there's a link to supplements & drugs. DS uses Nutrivene. The reason you don't hear much about it is b/c it is pretty controversial. The supplements tend to be expensive and some docs feel drug manufacturers are just taking us gullible parents looking for a quick fix for a ride. We went with that theory until recently when I read an excerpt from Dr. Schmidt's Healing Childhood Ear Infections in the section on Children with Down Syndrome. I know it is a major copy-right tabo but I think I will scan those pages in and email them to you and to chrfath. It explained the Trisomy 21 in a way I had never heard it discribed before (& believe me... I've read tons & tons of literature!). Anyway, it convinced us that even if it didn't help mitigate some of the effects of the extra chomosone that it wouldn't hurt either. We figure the extra cash is worth a shot in the dark. I'll try to take time later in the day to scan & email. If you want to pm me with your "other" email address I can send it to you there.
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