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klem Super Member
Joined: 01 Aug 2004
     
Last Visit: 16 Sep 2010 Posts: 2030 Location: Gadsden, AL
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Posted: January 29 2006, 10:11 PM Post subject:
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Please, please, nobody think I'm trying to indoctrinate you all regarding my use of Nutrivene with Drake. You all know I don't have a dog in that race (regarding sales of the stuff, etc.) it's just something we do and my opinion about it stops here in my home....but I have made an interesting observation.
Some of you may have read before that Drake stopped his projectile vomiting within days of beginning the regimen. He would vomit after every single bottle until he was two months old and we started the Nutrivene. I never knew if it was purely coincidental or not.
Well, we didn't get it ordered in time and tomorrow will be his 4th day without any supplements and for the past TWO days he has vomited at least twice per day. He's not sick, just vomiting after milk. Coincidence??? I have no idea. I have to add that he is not resting as well the past two nights either. He's been waking up from naps crying also, like his tummy is hurting or something.
I guess I don't have a real point, just think that it is very interesting. Wanted to hear from any of you other users...have you ever stopped for a short period of time and noticed a change??? I know Helen mentioned a change when Matt came off of his study. Whataya think?
_________________ Kelley, Chris's wife
mom of Taylor 14, Daulton 11, Cameron 9 & Drake 6 (DS)
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Helen Super Moderator
Joined: 07 Sep 2003
      
Last Visit: 19 Sep 2010 Posts: 8079 Location: Nottingham, UK
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Posted: January 30 2006, 7:34 AM Post subject:
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I reckon it could be related, though it would take a while for all the nutrients to come out of his body, I would have thought.
With Matt, it wasn't an immediate thing I noticed, but as the time's gone on, I can really see the difference. And it's so frustrating. And now they;ve told me the results of his study won't be out until April.
So I'm going to look into the Nutrivene, or somewhere where I can replicate the same stuff Matt was on in the same doses. I've spent the last few days going into healht food shops to find something similar, and am failing badly.
Is Nutrivene in a tablet, powder or liquid? I can't get Matt to take anything liquid though he's fine with the other 2.
With Drake, it could just be he's coming down with something, and has a tummy bug. That could explain why he's not sleeping so well, being sick, etc. If Matt is ill, at least until a couple of months ago, he'd be sick after milk. It makes you all phlegmy at the best of times and if you're not feeling 100% it's pretty vomit-inducing!
Hope he's feeling happier soon.
In conclusion, with some of these things, I guess we may never know!
_________________ Helen
Mum to ...
Rachael Kinza (25/07/01), Matthew Isaac - DS & Autism - (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous kids!
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klem Super Member
Joined: 01 Aug 2004
     
Last Visit: 16 Sep 2010 Posts: 2030 Location: Gadsden, AL
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Posted: January 30 2006, 1:23 PM Post subject:
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You may be right, Helen. Drake kept us up ALL night last night as I couldn't get medicine down him to save my life. I gave up for fear he would aspirate. His nose is so junky he couldn't breath at all and I finally laid him on the bed beside me and inclined him on my pillow. He finally got a bit of sleep then, afraid I didn't though...
Nutrivene comes in a powder. It may come in tablets for adults, too, but I'm not sure. We put the powder in his chocolate milk and he takes it without notice. There is a different powder that is the same thing and it's called "micro-encapsulated" and the taste is supposed to be a bit better and you can mix that kind into food. You can go to the website and correspond with them and they can help you find what will be best for Matt. I don't have it handy, but if you can't find it, let me know.
_________________ Kelley, Chris's wife
mom of Taylor 14, Daulton 11, Cameron 9 & Drake 6 (DS)
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Tom Administrator
Joined: 22 Jun 2000
         
Last Visit: 20 Sep 2010 Posts: 4937 Location: Plainview, NY
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Posted: January 30 2006, 1:52 PM Post subject:
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Most of the vitamins are water soluble so they don't remain in the system very long. That is one of the reasons they are relatively safe... it is hard to get too much because you urinate the extra out. You might try a normal children's multivitamin when you can't get hold of the nutrivene.
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Helen Super Moderator
Joined: 07 Sep 2003
      
Last Visit: 19 Sep 2010 Posts: 8079 Location: Nottingham, UK
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Posted: January 30 2006, 5:49 PM Post subject:
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Thanks guys!
I had a look on the website, and asked them to tell me exactly what was in the powder, because I wanted to replicate what Matt was on before. And they told me they can make me up a powder containing just what he had before, if I wished - which is really cool.
Si I'm exploring that at the moment - that's if it's not too expensive. Oh well, I guess that's what Matt's disability benefit is for!!!
Hope Drake's feeling a bit better
_________________ Helen
Mum to ...
Rachael Kinza (25/07/01), Matthew Isaac - DS & Autism - (14/06/03) and Hannah Cerys (14/06/05) - my gorgeous kids!
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lilpayton Super Member
Joined: 08 Jan 2006
   
Last Visit: 20 Sep 2010 Posts: 6070 Location: DC Metro Area
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Posted: February 01 2006, 6:18 PM Post subject:
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How do you know what dosage to give them?
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klem Super Member
Joined: 01 Aug 2004
     
Last Visit: 16 Sep 2010 Posts: 2030 Location: Gadsden, AL
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Posted: February 01 2006, 6:51 PM Post subject:
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They come with a dosage chart, it may be printed on the side of the bottle, but it tells you how much to give at what intervals during the day based on the weight of your child. Drake takes between 3 and 4 scoopfuls per day. It's basically 3 and 3/4 scoop fulls per day for his weight and I divide it into three doses.
_________________ Kelley, Chris's wife
mom of Taylor 14, Daulton 11, Cameron 9 & Drake 6 (DS)
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Jenna Super Member
Joined: 02 Feb 2006
   
Last Visit: 10 Jun 2010 Posts: 1669 Location: Texas
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Posted: February 08 2006, 3:12 PM Post subject:
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[blue]This is an interesting thread. I have been wondering about these supplements. What was the deciding factor for starting them. Lana is doing well, but if there's something out there to help her even more I want to know about it.
Also, about the throwing up... have you considered giving him lactose free milk? He may be lactose intolerant which could cause him to throw up and/or have diarrhea. Both my kids are lactose intolerant and once we switched all the tummy problems vanished, including waking up in the middle of the night. It's been great to discover lactose free milk... lol[/blue]
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HiCourt Super Member
Joined: 18 Jul 2000
         
Last Visit: 05 Jan 2009 Posts: 1207 Location: Shreveport, La
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Posted: February 08 2006, 4:22 PM Post subject:
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I was going to ask the same thing....See if the formula contains lactase....because if it does....that would explain the sudden throwing up when he stopped taking it, if it is not related to a virus.
2 of mine were lactose intolerant. Good Luck,
_________________ Jennifer, mother of Miss Courtney (14, ds), Nicolas (13, gifted, ADHD), Austin (9, ADHD), and Gerritt (6, gifted), Pediatric/Med-surg Nurse
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Kokie Senior Member
Joined: 04 Jul 2005
    
Last Visit: 31 Dec 1969 Posts: 164 Location: California
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Posted: February 16 2006, 6:31 PM Post subject:
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My brother also had major spitting up issues before we started giving him the Nutrivene-D vitamins. Within 1 week after we started giving it (and when we mastered how to get it down him - since was 8 mths old and we didn't have the microencapsulated kind), his spitting up STOPPED to pretty much nothing. It was amazing!! I do not believe it was coincidence, in his case either. There were soooooooo many things that changed with my brother very quickly after we started giving him the vitamins . . . everyone noticed it . . . it was so cool.
If anyone wants info about the vitamins please do not hesitate to email or PM me and I will give you alot of info (we have done tons of research), but I won't post it on this forum, as to not start a big issue  . My email is hoppinherdofhares@direcway.com
Also, please, I just want to add one quick thing in here - any over the counter, regular multivitamin is not good for down syndrome people. Again, I have info that I can email to anyone interested.
Qadoshyah
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lilpayton Super Member
Joined: 08 Jan 2006
   
Last Visit: 20 Sep 2010 Posts: 6070 Location: DC Metro Area
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Posted: February 21 2006, 9:33 AM Post subject:
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I have posted a few times about Nutrivene, trying to learn more. I am obviously interested in it, but scared too. I asked our geneticist about it and she didn't seem real into it. She kept saying something about the vitamins that it contains that are not water soluble and get stored, rather than excreted...possibly causing excess of that, or those, vitamins. Any info on this?
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Carson's Mom Super Member
Joined: 16 Dec 2005
   
Last Visit: 24 Sep 2008 Posts: 4978 Location: Louisiana
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Posted: February 21 2006, 10:28 AM Post subject:
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For every article that you read regarding the pros of supplements there is another one saying they are worthless. I haven't seen much saying that they are bad for them. I know that Carson is almost 5 months and doing great. Our OT is excited about his progress and he is very nearly crawling(I have got to get his armgs going or he is going to have rug burns on his face). I have had him on Nutrivene D for about 6 weeks. The way I see it, if it could help and doesn't hurt them so what if I am wasting my money. I just don't want to get down the road and wish I had tried. I think I paid $78 for the dosage for Carson that will last at least a couple of months.
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Kokie Senior Member
Joined: 04 Jul 2005
    
Last Visit: 31 Dec 1969 Posts: 164 Location: California
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Posted: February 21 2006, 1:25 PM Post subject:
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lilpayton - I sent you an email with a bunch of info on the vits  .
The vits certainly cannot hurt and just like Carson's mom, we don't want to not give them because there are no double blind studies on them and then 20 years from now they have done a study and it shows that they do work (even though there are other kinds of studies that show they would work!) and then we couldn't do much about it.
Qadoshyah
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lilpayton Super Member
Joined: 08 Jan 2006
   
Last Visit: 20 Sep 2010 Posts: 6070 Location: DC Metro Area
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Posted: February 21 2006, 6:19 PM Post subject:
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I guess the only bad thing my geneticist was saying was that some of the vitamins in it can build up and be potentially harmful. I'm not sure???
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mary c Super Member
Joined: 06 Jan 2005
    
Last Visit: 20 Sep 2010 Posts: 3426 Location: Westchester County, New York
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Posted: February 21 2006, 6:42 PM Post subject:
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We went to see a nutritionist who specializes in kids with special needs because we were considering this. She told us that it contained several fat soluable vitamins at high dosages. Unlike the water soluable vitamins, these fat soluable ones can build up in the body, particularly in the liver. She said that if we wanted to put Anna on it we should plan on monthly blood tests to see if there was damage to the liver. Don't know if this is accurate, but we decided to skip the vitamins--and she is doing very well without them.
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Kokie Senior Member
Joined: 04 Jul 2005
    
Last Visit: 31 Dec 1969 Posts: 164 Location: California
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Posted: February 21 2006, 11:48 PM Post subject:
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lilpayton - I sent you an email earlier with alot of info about the vits, let me know if you got it or not  .
Qadoshyah
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Kokie Senior Member
Joined: 04 Jul 2005
    
Last Visit: 31 Dec 1969 Posts: 164 Location: California
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Posted: February 22 2006, 12:17 AM Post subject:
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Also, yes you do do frequent testing to make sure there is nothing being overdosed, or if they are deficient in something.
Qadoshyah
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Magdalena Senior Member
Joined: 16 Nov 2006
  
Last Visit: 26 Jan 2010 Posts: 105 Location: London,UK
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Posted: May 09 2007, 3:58 AM Post subject:
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Does anyone know if Nutrivene D helps with stomach reflux?
_________________ Mom to Nel 20.06.03 and Kai 28.11.05 (DS)
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lilpayton Super Member
Joined: 08 Jan 2006
   
Last Visit: 20 Sep 2010 Posts: 6070 Location: DC Metro Area
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Posted: May 09 2007, 7:45 AM Post subject:
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I haven't heard anything about it helping with reflux, and I know that the enzymes make reflux worse.
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waith Super Member
Joined: 15 Apr 2004
     
Last Visit: 11 Aug 2010 Posts: 2465 Location: Manchester UK
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Posted: May 09 2007, 3:41 PM Post subject:
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Helen
Dominic was on Nutrivene D from 13 weeks old up to about 6 months ago. He was becoming a bit hyper and had some very loose nappies so I stopped it to see if it was that.
He's still the same so it was'nt the Nutrivene just the terrible twos lol. I'am going to start him back on it. What I've noticed is its a lot cheaper to buy in the states in comparsion with their supplier in Uk. They post it out here the same day and you get it delivered the next day usually.
You could get some delivered whilst your over there in the states has the pound is doing good againest the dollar and save some money.
Maxine
_________________ Maxine UK. Mum to Elliott 16 and Dominic 6 DS.
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