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Post by Jessie on Jan 12, 2005 17:30:48 GMT -5
Hi Everyone,
This is probably a topic that has been talked to death . . . but I couldn't find anything use the search tool, so I thought I would throw it out there.
What is the opinion/experience with using Nutrivene-D or Piracetum?
I did find an old post of Chris', I think, that said "if it helped then more people would be raving about it". I kind of have to agree there, but I'm fairly new to the DS community, so I don't know what people think about it.
Based on a few websites I found, the medical community doesn't put too much stock into Piracetum, particularly for DS children.
Jason takes regular vitamins very well and eats a well-balanced diet (with of course the required dosage of McD french fries!), so would either of these supplements do anything for him as far as stimulating brain cells or whatever they claim to do?
Opinions please!!!
Thanks.
Jessie
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Post by Debi on Jan 13, 2005 19:54:44 GMT -5
This is just my humble opinion but I do think if Piracetum worked as advertised EVERYONE would take it I mean we could all stand to be smarter right?? ;D(Well I know I certainly could). I know another Mom as well as myself who has a daughter in our area who is about the same age as my Gabe. Both of us have looked and looked and looked at some of the supplements and do not think putting our kids on them would have helped at all. Also a person who I respect has noted that looking at the amounts of supplements offered raises real questions as to how well they would be absorbed by any child. Having said that and having read at lots of boards I do know parents who think Hap Caps and Nutrivine are the way to go. I personally again humble opinion time think a multi vit. is the best way to go.
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Post by Staci on Jan 14, 2005 23:40:08 GMT -5
I have asked this to the many "professionals" that are in Aidan's life and they all agree...that an over the counter vitamin will do just as good as the Nutrivene-D. They have said that, while it won't hurt him...it would just be a waste of money...that he'd be peeing all that money away, cuz that is what he'd be doing with all of those extra nutrients and vitamins that he did NOT need in his body...just getting rid of them LOL. I have no clue about the Piracetum, though. I am leary about putting my guy on either due to what I've read and learned about both. Just my opinion, though!
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Post by Kristen on Jan 24, 2005 13:41:35 GMT -5
a little late to this but...We used supplements adn all they did was turn him orange. He has been healthier and continuing on in his development with the same strengths and the same weaknesses since he was on them.
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Post by MatureMomG on Jan 24, 2005 19:18:05 GMT -5
I have been wondering again about this same topic lately. I am MUCH more interested in hearing what the real experts (YOU moms and dads) ;D have to say, than what the "traditional" experts (the medical folks) have to say. What have YOU seen when you tried it? How long did you try it for? Are you still doing it? Why or why not? And Staci, why would you be "leary" of putting your son on this? Are there "hazards" associated with this I may not have heard about? Thanks all. Yours in Christ, Kathy
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Post by meghans_mom on Jan 25, 2005 7:34:07 GMT -5
Kathy - If I can jump in and tell you why I would be leary of these supplements. the drug/supplements is not tested....not FDA approved, outside of what 'testing' or results the people w/ the supplements have gotten from trying it on patients. What I mean is, there were no formal clinical trials. Some of the doses of vitamins/minerals in these combinations are extremely high. When you're talking about water soluble vitamins (C) it may not be a problems...with things like Vitamin A, at a very high dose - they can cause toxicities. Also high doses of certain B vitamins can cause things like nerve damage. This is usually reversible once it is discontinued but depending on the nature/extent it may not be. I am also leary of the high doses of certain minerals in these products - some of them are thought to have an association w/ alzheimer's and personally I wouldn't expose my daughter to them at such doses. Excess minerals can settle in tissue and cause damage. My caveat being I have not heard of these things happening....I do not know whether or not they have. I think, in theory, these supplements sound wonderful...in practice, I don't like the idea. Just because something is 'natural' doesn't mean it is safe. Heck, just because something is FDA approved doesn't mean it is safe -- just look at the recent drug recalls. As a pharmacist one of my big interests has always been supplements, minerals, natural products....I really looked carefully at these - especially the HapCaps which impressed me the most. Who wouldn't want to give their child every possible advantage? But when I really looked at them and read all the literature I could find-I decided they were not right, or possibly un-safe for my daughter. anyways - that's my 2 cents, or possibly 3 cents :-) laurie
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Post by MatureMomG on Jan 25, 2005 9:38:18 GMT -5
Thanks laurie, definitely something to consider. Yours in Christ, Kathy
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Post by Kristen on Jan 25, 2005 14:33:25 GMT -5
Kathy (and anyone else!)
Just noticed I didn't mention it, but Carter was on those hap caps from 8 weeks old. He was on them until just after he turned 1. We also did the recommended flaxseed oil and soemthing else that I forget the name that was nothing but a very expensive little bottle of liquid that did nothing IMO that you get at the health food store.
Anyhow, what I so now is really work on giving him a high antioxidant diet. He drinks wild blueberry juice (hlaf that, splash of apple and then water is really good and not too strong) and red grape juice. I try to give him soy cheese and chickenless soy nuggest a few times a week instead of regular. Whole grain bread, let him dip in kethcup - that kind of thing. I did a google search of high antioxidant foods and got the top 10 list if you are interested. Laurie will correct me if I am wrong, but antioxidants is what the vitamins are trying to provide - to gobble up the free radicals made by the extra protien being synthesized of the extra arm of the 21st chromo.
Instead of never feeling really "right" aobut the vitamins, I give him a regular miltivitamin and I watch the diet as closely as I can and he seems to do well! You can OD on A,D,E and K vitamin pills or powder a lot sooner than you can drink too much blueberry juice! It's pretty easy and if nothing else, a healthful way of eating!
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Post by kimnz on Feb 2, 2005 15:35:33 GMT -5
Hi,
it is wonderful to hear such excellent information both from regular Mum's (that's the nz way of spelling Mom) and the regular Mum's who are also professionals.
I am wondering (only WONDERING) if one (only one) of the reasons we may want to try out different therepies is not JUST because we want our children healthy and want to do the best for them but possibly because we are anxious to some extent about the "Down syndrome" componant of our children and want to try to dampen in down. I am not being very articulate I know. I hope I am not being too controversial and I apply the above to myself. Having said that I cherish and love my son the way he so I may sound a bit ironic.
It is not wrong to want to minimise the above but I am guessing that maybe we might do some of these things as our own defence mechanism to protect ourselves.
Having said that.... "yes" ....we have tried the vitamins and are still one them. We do not pay for them a relative does, they are very expensive to ship over to NZ. I have stints of giving them to Jordan and stints of abstinence. He has had them off and on since about 1 year old.
Something I have noticed (well I THINK I have noticed) when taking them:
Jordan appears to have more energy. His congnitive process MAY be a little quicker. When I take him off them initially he APPEARS to be a bit cranky and maybe not quite so much energy. I think I am a little scared having started them to take him off them completely....may be my own defence mechanism again. I like being open and up front, I just don't want to offend anyone.
I have not kept a diary.
I do agree that if you can give a diet high in antioxidents and a very healthy diet that this would be the very best thing. I have found that over here in NZ it is actually very expensive to live healthily (pardon the spelling, I can't find spell check on here).
I have a friend here and her daughter lives VERY healthily and she is almost 6 years old and has had hardly any infections at all....she of course also has Down sydnrome.
Kim nz
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Post by Kristen on Feb 4, 2005 13:15:18 GMT -5
Kim, I know what you are saying and GUILTY as charged! Carter was so small when we went to that doctor and it was all so new, we did whatever we could do to try to make it not affect him as badly. Didn't know any better and even if our heads knew, our hearts said you gotta try it!
Now, I give him antioxidants when I can because well, can't hurt, might help! Carter does make a different protien that i do (learned that later!) and it does make more amonia and free radicals and that can hurt anyone. Hell, if he wants blueberry or red grape juice vs. kool-aid, who am I to complain? I mean, he's 2, he's only gonna go along with it so much, KWIM? But it's good for him and ther eya go. Now I'm about health and prevention of possibly alzheimers which may or may not be a factor with the free rads. It's only smart to try to prevent further damage.
The vitamis did nothign for him. I only gave him the PM formula because the AM had a stimulant in it. He has never been a sit around kind of kid. He's got normal levels of energy and attention, so maybe in his case it was just not necessary? I don't know. everyone is different, Dx or not!
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Post by donnita on Feb 15, 2005 9:44:52 GMT -5
Kristin, please save me a google search, what are the top 10 high antioxidant foods?
Donnita
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Post by Renee' on Feb 15, 2005 19:22:57 GMT -5
We used those supplements with Lauren when she was younger. It was a waste of money. She threw up all the time. We just give her gummy vites now
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Post by caitlynjoy on Feb 25, 2005 12:18:21 GMT -5
Hi there, I'm fairly new to the board and just wanted to give my experience with nutrivene d. My Caitlyn Joy is now 4 and I started her on the nutrivene when she was under a year old and had her on it until about 2 years old. I have no idea if it's the vitamin or just Caitlyn but she never had an ear infection and was very healthy and she was even in day care at the time. She had the usual amount of colds but for the most part very healthy. She did have AVSD surgery when she was 2 mos. old and she is completely healed up and fine. Her cognitive skills are great and she is a very active child. She is curious and very personable, too. Now this is probably just Caitlyn's make-up and have nothing to do with the vitamins. She fortunately has good muscle tone and I think this plays a big part in her language skills and other activities. She talks in sentences now and I understand pretty much everything she says. Every once in a while she does speak in chinese and then end it with a word, this is when she's telling a big story . So I have no idea if these vitamins ever played a role in her development, I just know that Caitlyn is pretty high functioning for the most part and again that's probably just the way God made her. She just does flinstones now, however I'm very interested in all this anti oxidants talk, I've not been up on any of that and would like to learn more about it. I know I rambled there a little, my other daughter is home from school with a migrain and she sleeps a little and then the pain comes back so my thoughts may be a little scattered but I think the jist of it is there. ;D
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Post by momofrussell on Feb 25, 2005 17:21:28 GMT -5
The way I look at any vitamin is... if you are doing it for vitamin content only, then any multivitamin is good, any multivitamin... if you are giving a vitamin for things other then the attributes of the vitamin content... then I am leary. Eating good foods and/or taking a multi vitamin is good fuel for anyone's body and mind... but I don't take too much creed to anything said beyond that for vitamins. I say if you want to try the vitamins.. GO FOR IT! A.
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Post by justinsmom on Feb 26, 2005 11:30:09 GMT -5
I have to echo what everyone else has said. We never tried them for the same reasons. I also believe that if the Vitamin Supplements did what they say they did more drug companies would be jumping on the wagon to "cash in". Justin gets the good ole Flinstone chewable and he seems to be just fine . Justin hasn't really been sick since he was 2 and we then had his T/A and has only had one ear infection well actually a double one the day of his 1st hearing test . He does get the occassional cold but living in Michigan there's no way around that .
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