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Could it possibly be the vitamins?


 
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Amy
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PostPosted: July 31 2007, 8:04 AM    Post subject:
Could it possibly be the vitamins?
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Yesterday I left OT crying....happy tears. Austin has therapy every other Monday. We do all three...PT, ST, and OT. Diane has been Austin's OT for about 2 1/2 years. She always tries to say something positive about his progress. But, lately she hasn't been able to say much.

Well Monday, Austin started with Aquatherapy. We had stopped the aquatherapy because of his ears but with the AAI diagnosis, we started back up again... water is safer ! (lol)
He was like a different kid in the water. His PT Debbie commented on how 'focused' he was and he followed direction with only VERBAL commands. He was SINGING while he was swimming. Normally Austin kinda 'checks' in with whats happening around him. Usually he's looking at his surroundings and looks at the therapist out of the corner of his eye. Today he was giving her eye to eye contact. I was gone during speech so I didn't hear from her. THen he went to OT. She called me in the last few minutes and just went on for several minutes with praise after praise.

Quote:
"I've never seen him so focused. I'm so excited and encouraged. He put the puzzle together while my back was turned... then I gave him crayons and ASKED him to draw a circle and he did without me showing him an example!! Then I told him to draw up and down and HE DID without me showing him how. Then she said with picture cards he correctly identified 7 out of 10. I asked him to take off his shoes...he signed shoes and then took them off. Then I asked him to take off his socks... he did and when I asked him to take off his shirt... he grabbed it and looked at me like... You've got to be kidding. He stayed on target and focused the whole session."


Anyway, she said even more...but I was crying at that point. She did say he signed 'same' to her when he saw the colored cups she uses for color recognition (he has to put the colored bears in the 'same' color cups) before she told him what they were for.

I don't know if it was the vitamins MSB+ (he's been on them about 2 weeks) the aquatherapy or the fact his nose isn't running which is a miracle in itself. But he is a different kid. Like a switch has been flipped.

Could it be a cognitive jump and coincidental with the vitamins or a combination of no runny nose, and the aquatherapy? I don't know...but I do know I'm not stopping the vitamins.

amy

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PostPosted: July 31 2007, 10:53 AM    Post subject:
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Amy,

I probably missed a post somewhere, but what vitamins is Austin on? I keep reading these posts about how well everyone's kids are doing on supplements and I want John to do well too, but I'm not sure his oncologist would OK the supplements. In some ways I feel like my hands are tied when it comes to this kind of stuff. Some of his chemo is known to cause cognitive problems in some kids and I wish I had something that could HELP him rather than just hurting him. Ugggghhhh. (OK, pity party over.)

Way to go Austin! It's so fun to watch them make leaps in development. With my other kids I would sort of notice when they were doing something new but it never felt as amazing as when John reaches a new milestone.

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Amy
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PostPosted: July 31 2007, 10:59 AM    Post subject:
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Ann, he's on MSB+ They will give you a free sample. (Its 4 bottles actually). Why don't you call and order the sample. Then take the content list into a chemo doc and ask!!!
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PostPosted: July 31 2007, 11:53 AM    Post subject:
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Peter was on Nutrivene when he was a baby. Shortly after he started the vitamins he had a huge boost in development. He started sitting up more and he seemed like he got stronger. Austin sounds like he is doing great.
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PostPosted: July 31 2007, 12:45 PM    Post subject:
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Wow, that's awesome!!! Way to go Austin!!

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PostPosted: August 01 2007, 2:43 PM    Post subject:
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WTG Austin, that is so awesome, Amy I know you were so excited! Cooper has been on MSB+ for about 2 months and I to have seen quite a difference! I am soo happy for you!

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PostPosted: August 01 2007, 3:30 PM    Post subject:
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It always makes you wonder, doesn't it? Kayla's recently re-started MSB+, plus hippotherapy, a gluten free diet and I've been putting flax seed in her muffins for Omega 3. She's taken a HUGE step in development (I'll post about it when I get caught up). Don't know what's responsible or if it's just a coincidence, but I'm happy about it!

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PostPosted: August 01 2007, 6:26 PM    Post subject:
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WTG Austin!!! I don't know what is the cause, but either way it is awesome- don't change a thing.

Ann- When we were looking at chemo for Carson, Dr. L wanted us to continue with the NVD but with an altered formula because of something that would interfere. I was told at St. Judes that we couldn't stay on it, but Dr. L wanted me to do it and not tell them. I could not have done that and thankfully we didn't have to decide. I have a feeling that they would not let you use anything they don't know about. Maybe you can check it out once the chemo is over and see if it works for John. I will be ready to do the happy dance with you and your family when this stupid chemo is all over with.

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PostPosted: August 02 2007, 6:58 AM    Post subject:
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Sounds like an amazing day. Who knows if it was the vitamins, but sounds like Austin's really coming on. Well done little man


I want to start Matt on MSB, but Andy isn't happy about it. Sad

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PostPosted: August 02 2007, 10:04 AM    Post subject:
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helandy.cop wrote:
I want to start Matt on MSB, but Andy isn't happy about it. Sad


What is he unhappy about? Even if they do nothing they are simply water-soluble vitamins. They will make Matt's urine look radioactive but other than that they can't hurt him.

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PostPosted: August 02 2007, 10:20 AM    Post subject:
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He's worried about high doses of vitamins, especially after that study Matt was on, which basically said that kids with DS dont' seem to be able to absorb vitamins the same way other people do. Even though the vitamins were present in the blood and urine, they said the body wasn't able to process them the way other kids did, due to the oxidative stress, or something?

And the study basically showed that the high doses of Vits Matt was on did absolutely nothing to help. And the fact it was done with 160 kids, with 4 different groups on 4 different mixes of vitamins, minerals, all or nothing and that there was no difference, whatsoever, within the groups, then it would appear the vitamins made no difference.

But I'm not really sure why he's not happy to try MSB. It's meant Andy's wary of 'pumping Matt full of chemicals' now. And I respect that, I guess. And, maybe, there's an element of not wanting to get our hopes up ....?

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Amy
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PostPosted: August 03 2007, 6:54 AM    Post subject:
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Helen... the sample is free. Even if the study said the vitamins can't help... it also said the vitamins don't HURT!!! Use the sample... and just see if you see a difference.
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PostPosted: August 03 2007, 8:21 AM    Post subject:
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I was convinced the vitamins would do nothing. Where we are seeing the changes is the areas of autism, not Down syndrome. I didn't read the study so I can't comment on it, but the fact that children have trouble absorbing vitamins is a reason to give larger doses!

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PostPosted: August 03 2007, 8:31 AM    Post subject:
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Larkin is a different kid in water as well. We are now moving toward full PT in the pool at our local hospital.

She doesn't take vitamins but according to her doc's it's because the water gives her a sense of where her body is in space. So she is able to move and feel her body.

Does that make sense?

As far as vitamins go....Larkin was taking the full dosages and when the seizures began they checked all metabolic levels. They have continued to check them and there never has been a change. The vitamins were not affecting her levels at all. So I am a hard sell.

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PostPosted: August 03 2007, 12:54 PM    Post subject:
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I'am really ticked of with the DSA. In their annual report the chairman states the study they did (that Matt was part of) settles the debate once and for all that vit's and min's have no place in DS. Hogwash!!!!!!!!!!!!!!
This is not a clinical research based statement but an of the cuff remark by the chairman.
What annoys me even more that after just one study, using a bog standard recommended dose of a few vit's and min's and monitoring effects. What where they going to find? I'll tell you 'Jack shit difference'.
Do the parents who have typical kids on a multi vit, suddenly find their kids become super clever, race ahead with their development, grow taller, become more beautiful, develop wings and fly NO!!!!!!!!!!!!!!!!!!.
Kids with DS have a differences at a cellar level, they also have problems absorbing the nutrients and vits/mins from food. If you have problems absorbing the stuff in food that helps us stay health, you feel ill, if you feel rough you under perform. When you get a diet and a high dose of vits etc that is absorbed you feel and stay healthy and you perform better.
We need a study that measures long term the effect of the many different vits and minerals that are in Nutrivene and MSB plus. Which is nothing like the above UK study.
The oxidative stress is caused by kids with DS having the extra 21 chromosome which produces extra hydrogen peroxide. The enzyme the body produces to counter act this, is found on another chromosome (of which there are only 2 copys) and unfortunately it cannot cope with the extra hydrogen peroxide, it is this that the researchers at dsrf in uk suggested long term may build up and contributes to the damage at a cellar level.
I give Dominic's his vits at an higher level to add absorption and the aim to hopefully counteract any potential damage and help him remain healthy.
Why are we daily told to eat a balanced diet with anti-oxidant's etc in and then tell folks with kids with DS (many of who have gastric problems, poor absorbtion, food fads etc) not to give them vits. Hog wash. Just had to vent, now i'm off to pop my flax seed cap and multi vit quick. Wink

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PostPosted: August 04 2007, 8:44 AM    Post subject:
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I really want to give them a try but its over my head so much ( I'm not good at reading long reports and with big long words Rolling Eyes )

I think I need to get my head round it all, as anything that will help the autism I really want to try ( that is harder to cope with than DS )

my only worry I guess is them saying the long term effect as Hannah's health has always been good ( she doesn't suffer hardly at all perhaps once a year with a cold ) She never has runny noses or chesty coughs.

plus its soooo expensive. I'm not working and now Hannah has been awarded low rate mobility ( which we are going to appeal ) which makes a difference in what she gets a month ( I would have been using her DLA to pay for it )

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PostPosted: August 05 2007, 9:40 PM    Post subject:
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We have never done the vitamins, and my reasoning was because there is NO proof they work. But recently I was questioning my decision cause I have been feeling like I was in the minority and maybe I should try it, etc..etc.. At the conference this weekend I made it a point to ask every doctor there if they recommend the vitamins like Nutrivene or MSB + to there children or patients. Everyone said NO. They said they totally recommend a daily vitamin with antioxidants in them like centrum or flintstones and a balanced diet. They said that if you do use the big vitamin supplements like NTD or MSB+ to be very careful because the people that are selling these vitamins are making ALOT of money off of them and just because someone says it works doesn't mean it does. And some of these compounds have very high doses of vitamins in them which CAN be harmful, particularly Vitamin A, it can cause liver damage and that IS a fact. So I feel much better with my decision to avoid the vitamin supplements at this time, if one day they find they do work, great, but until then the flintstones will work for us.

I have to edit to say that I know you weren't asking for my opinion on this but I just felt the need to post the info. I got at the conference incase there were other parents out there on the fence on this issue like I was. I certainly don't want to rain on any ones parade! Wink

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PostPosted: August 09 2007, 10:12 PM    Post subject:
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yeah amy!! iam so excited for austin!!!! i will say, that mayson stays sooo healthy as well and i attribute the vitamins to part of that!! she is doing well over all too. i love msb+~

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PostPosted: August 11 2007, 7:38 PM    Post subject:
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That is such great news Amy. I hope you keep hearing those brags!

You guys have me convinced to give this a try. We have also been among the skeptics but have decided to see if it makes a difference for Wil.

We ordered our samples a couple days ago.

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PostPosted: August 11 2007, 11:40 PM    Post subject:
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Well.. Thursday is his sedated MRI andCT scan. So while he's out we are have a thyroid screen, complete CBC and an iron panel run... so I'll have answers about his bloodwork...if the vitamins are throwing it out of whack...

It concerns me that a doctor would off the cuff in a flyby discussion dismiss all vitamins without looking at the ingredients... at the levels of vitamins and at the research. But then they only receive part of one class in one semester about nutrition in med school... so I don't know why I"m surprised.

*this part is sarcastic ..sorry. *

If it's 'natural' it must be a hoax... only artificial drugs created by drug companies (who only make drugs out of the goodness of their hearts and not to MAKE MONEY off of people's illnesses or desperation...) can be of any use or treat medical conditions.


By the way, you know how they treat blood disorders like hemophilia... with vitamin K. When a dog eats rat poison .... and its a Warfarin(causes internal bleeding because the blood is unable to coagulate )... the vet will give it liquid vitamin K . Vitamins are used to treat medical conditions...improve health and replace deficiencies in diet. see wikipedia about the rat poison if you are want.

http://en.wikipedia.org/wiki/Warfarin


If you are really interested in this vitamin treatment.. order the sample, take the insert with the ingredient list to your physician and let them READ IT ... order the blood work and see if your child is any more alert or verbal.

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PostPosted: August 12 2007, 12:32 AM    Post subject:
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Alyssa,

I do understand your point and what you are saying here. But there are so many things in my life that I live by faith alone. Before you think I'm a nut case, let me explain. My husband is a chiropractor/acupuncturist. I think if you asked each of those doctors at the conference if either of those was a good idea for anyone, there would not be many, if any, positive responses. But I KNOW both of these can be very helpful. I don't need anyone telling me they are. I HAVE SEEN IT, and I BELIEVE.

Many of the choices I have made for myself and my family may not seem mainstream to others, and that is okay. They are what I KNOW, WHAT I BELIEVE!! I'm not looking for verification from anyone else.

When AJ was born in Omaha, I asked two different pediatricians about the ingredient list in Nutrivene. At that point I was not familiar with MSB. My question to them was this, "If I am willing to take the financial risk here, is there any medical reason why my baby should not have this?" They both answered there was not. They both expressed what they have learned....they are leery of alternative things, worried that whoever is marketing this is only in it for the money and does not really have our children's best interest at heart. But like I explained to them, if I am willing to take the financial risk, do they have a problem with the product, and the answer was no.

I have seen how AJ improves dramatically when he is taking either MSB or Nutrivene on a regular basis. I have seen and our EI team has documented how he has actually regressed when he is not taking them. These improvements and regressions were documented by the team before they even knew he was taking anything!! It was my own little study and I BELIEVE!! Will there ever be a study done to prove and formally backup my belief. I don't know....but that doesn't change how I feel. There are some things I just know in my heart.

I am not here to say that everyone needs to put their children on one of these products. If you don't want to give Macy a product like this, of course that is your prerogative. I just want to say what has worked well for us.

I guess after being married to a chiropractor for the last 20 years, I am a little sensitive when a medical doctor categorically dismisses an alternative approach as bad.

Sorry if this seems a bit direct or tense. It's not your fault you touched upon a sore topic with me!! Rolling Eyes I just felt it was the right thing to do to respond with my viewpoint. I know your motivation was the same!!

Ibby

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PostPosted: August 12 2007, 7:01 PM    Post subject:
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All I was doing was relaying the information I got at the conference by the doctors who were there. Isn't that what were supposed to do? As I said in my first post they DO recommend vitamins (they are obviously needed for growth and development I don't need to Wiki that) but they cautioned parents who were giving there children the "mega" vitamins because too much of certain vitamins is not good. If you google it you will find that, here is one of many links:

http://www.mayoclinic.com/health/drug-information/DR202595

They were just being honest and stating facts.
Sorry I/they stuck a chord with you Ibby- love you!

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PostPosted: August 12 2007, 7:41 PM    Post subject:
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iluvmacy wrote:
And some of these compounds have very high doses of vitamins in them which CAN be harmful, particularly Vitamin A, it can cause liver damage and that IS a fact.
I don't know about other supplements but MSB+ has 750IU of Vitamin A which is about 15% of the recommended daily dose. You'll get more Vitamin A in a Centrum.

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PostPosted: August 12 2007, 7:45 PM    Post subject:
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haha hey tom you were reading my mind!! i was just checking that out and going to post it!

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PostPosted: August 12 2007, 8:02 PM    Post subject:
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I guess the problem comes in "the facts". It is assumed that we have not done our homework prior to placing our children on NTV-D or MSB. I assure you I have, as have many on here have as well, done my homework prior to giving Carson any drug or vitamin. What you are relaying are Dr.'s opinions and we all get to have one. If I listened to all of the "opinions" out there and believed them, I would have expected Carson to be dead- that was the "opinion" I got from 2 Dr.s. I will say this - there are cancer treatments out there that are not FDA approved but they somehow work. There are Dr.'s that will tell you they don't, but I personally KNOW people that have gone to other countries for medicine and treatments that are alive today because they did. There is no evidence that it doesn't work because there can be no "apples and apples" test - you don't know what they would have been able to do or be. Our children have blood tests to assure there is no harm. I guess my opinion is - I don't care what others chose to do- we will continue on until we believe that we should make changes. I guess since I only give my opinion if asked I assume everyone will be that way. In this instance I would be careful of giving "facts", when the only "fact" here is that God is the only one that KNOWS. And the getting rich part is interesting, since I would imagine every single Dr. that you are referring to is not getting by on welfare and food stamps, but instead is making a nice healthy living as most are in the health care industry. JMHO

Kayla

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PostPosted: August 12 2007, 10:14 PM    Post subject:
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Carson's mom wrote:
Quote:
It is assumed that we have not done our homework prior to placing our children on NTV-D or MSB


Not true, never said that.

Carson's mom wrote:
Quote:
there are cancer treatments out there that are not FDA approved but they somehow work. There are Dr.'s that will tell you they don't, but I personally KNOW people that have gone to other countries for medicine and treatments that are alive today because they did.


I agree

Carson's mom wrote:
Quote:
And the getting rich part is interesting, since I would imagine every single Dr. that you are referring to is not getting by on welfare and food stamps, but instead is making a nice healthy living as most are in the health care industry


Of course there not living off Welfare..there doctors, they went to school.. everyone knows you make a nice living if you are a doctor

Carson's mom wrote:
Quote:
I guess since I only give my opinion if asked


Carson's mom wrote:
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JMHO


Confused

Once again, I was just relaying the information I was given, I'm not a doctor and i'm not telling anyone that they shouldn't, to each there own, you obviously believe they work and that is GREAT, I'm not trying to change your mind or anyone else's, and I don't want to start an argument on this, I posted the info because I thought maybe there were other parents who were in the same boat as me, and there was.

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Amy
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PostPosted: August 21 2007, 6:56 AM    Post subject:
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While Austin was sedated for his CT and MRI, we had a series of blood work.... CBC, thyroid, and Iron panel. Everything came back completely normal. Austin's been on vitamins for about a month now. I'll ask the ped to do the CBC again in 6 months just to make sure.
amy

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CameronsMom
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PostPosted: August 21 2007, 1:31 PM    Post subject:
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I just read this post/replies and am wondering what is the difference between NVD and MSB+? Cameron has been on NVD, DHA and night-time since his OHS at 3 mos. and I contribute a lot of his well-being and great progress to being on it. Is MSB+ similar to NVD?
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Tom
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PostPosted: August 21 2007, 2:33 PM    Post subject:
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CameronsMom wrote:
I just read this post/replies and am wondering what is the difference between NVD and MSB+? Cameron has been on NVD, DHA and night-time since his OHS at 3 mos. and I contribute a lot of his well-being and great progress to being on it. Is MSB+ similar to NVD?


They are very similar.

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PostPosted: August 22 2007, 8:14 PM    Post subject:
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Wil started his msb+ last Friday. I will wait to share my observations, I have seen some differences in him. The cynic in me is saying, "no, this couldn't possibly be due to adding the vitamin." We'll see.

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PostPosted: September 19 2007, 10:58 AM    Post subject:
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Austin's AWESOME!

I'll have Drake on some TNI for the rest of his life. I use NTD and MSB, not together of course, just if I'm out of NTD, I've used the MSB samples. He's been on it since 2 or 3 mos old. I just can't say enough about it. Every single time, and I mean EVERY single time I've been out for a couple of days, he's come down with a MAJOR illness. Coincidence the first 3 or 4 times, I thought, then the puzzle came together. He's NEVER had the chronic runny nose I was assured he'd have, VERY FEW ear infections-- I was assured he'd have them chronically. No constipation issues since early on -- I think since a year old... give or take some months.

I'm so glad these vitamins are helping so many children. To see some parents who were so skeptical but are now seeing the benefits, makes me so much more confident about what I've always attributed to the vitamins.
Happy, happy, happy.

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EliasMom
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PostPosted: September 19 2007, 7:15 PM    Post subject:
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Alyssa I understand you completely! because I was the same until I knew MSB+ gave free samples, since I don't have the extra money to buy something that wont ensure me will work!

when Elias was newborn his pediatrician told us we should give him vitamins to help him growth healthy, the first 4 months we gave them a typical multivitamin, but then we changed pediatrician and he didn't tell us nothing, then when reflux was gone Elias lost so much weight and didn't growth much so my FIL told us to give him again the multivitamin, we did and helped to give him the streng he needed.

well, Elias has been taking MSB+ for two weeks, and I haven't notice a big change, only that he has a tremendous amount of energy, i can understand some words, he counts 1-2-3, folds more the legs. i didn't told part of the family,therapist or friends about this to see if they saw any change as some of here mentioned, and none have said anything new, they keep telling he's doing good,learning,having good attention etc

i guess the main vitamins our kids can have is love,patience,perseverance , motivation etc... and a bonus are this kind of therapies that doesn't hurt to try (ie. hypo-therapy,vitamins,dolphins)

at the end i have faith that everything Elias will do, will be only because of God's grace

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PostPosted: September 28 2007, 1:59 PM    Post subject:
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Just catching up on the TNI threads. First off, AMY, I think it is awesome what you are seeing with Austin! I love it.

Alyssa...I have yet to have a doctor (other than Dr. Leichtman, of course) recommend these vitamins to me. Why, because they is no double-blinded study. Same argument many people on this board had awhile back, before they gave the vitamins a chance. Wink But...WHY is there no double-blinded study? Because takes A LOT of money and nobody sees that as profitable to them, because it focuses in on the DS community, which is not enough people for them to think that the money is worth the study. Now I'll use my favorite phrase of Stephanie's ... SPIT. LOL.

And with regard to the vitamin A levels, I have been told by Dr. L (who reviews a ton of bloodwork on all his patients that are on NTD) that he has yet to see a patient with a toxic level of Vitamin A. Nonetheless, that is why it is important to have regular bloodwork done while on the vitamins, but we have had no issues yet with Vit A levels, nor do I know anyone that has. Smile

Someone else asked if there is a difference between MSB+ and NTD. There are tiny differences. Some don't like a couple of the ingredients that are in MSB+ and I have heard that there are some levels that are not what they think is high enough in MSB+. I dunno. We have been on NTD from the get go and have decided to stick with that. We got our free MSB+ samples, but my gut told me to stick with the NTD, so I did. Smile

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PJ's Mommy
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PostPosted: October 19 2007, 9:10 PM    Post subject:
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where do I go to get the free samples, and what age is appropriate to start?

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Tom
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PostPosted: October 19 2007, 9:20 PM    Post subject:
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Kat-in-Tn wrote:
where do I go to get the free samples, and what age is appropriate to start?


For MSB+, the toll free number is 1-888-384-7855. You can start at any age, just follow the recommended dosage. Follow Ecki's advice below on when to start.

Not sure about Nutrivene.

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Last edited by Tom on October 19 2007, 10:03 PM; edited 1 time in total
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PostPosted: October 19 2007, 9:36 PM    Post subject:
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They told us not to start MSB+ until at least 3 months of age.

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