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 Treatment offers Ray of hope.

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Amarlismum
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PostSubject: Treatment offers Ray of hope.   Mon 8 Dec 2008 - 7:27

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CoralJ
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PostSubject: Re: Treatment offers Ray of hope.   Mon 8 Dec 2008 - 11:54

Very interesting reading and I viewed the Changing A Mind video trailer. If the claims of improvement are accurate and going to be sustained I suppose I'd be an idiot not to try it. Unfortunately I struggle with such ideas and how positive they really are either because of being conservative or skeptical within myself. Has anyone used any of the protocol components
ginko biloba
prozac
ADHD meds-Focalin XR
phosphatidylcholine
body bio oil
Folinic Acid/B12
Coral
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Amarlismum
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PostSubject: Re: Treatment offers Ray of hope.   Mon 8 Dec 2008 - 12:55

No we havnt tried any of those components and unless there was excellent evidence that they worked i dont think i would be open to the idea of using ADHD meds or the prozac, not for just Ds.
We do use a TNI here and im curious about the research into the Ginko Biloba.
I googled the Dr's name and came up with this link.
http://www.changingmindsfoundation.com/
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CoralJ
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PostSubject: Re: Treatment offers Ray of hope.   Mon 8 Dec 2008 - 19:05

Hi Robyn excuse my ignorance but what is a TNI? I agree with your statement about the need for evidence ie scientific research with follow up over time, not just individuals stories. I would think about using the B12 and ginko biloba and a bio oil (I presume it's something like a fish oil and would check) if I was happy that there were no bad side effects from these. I think with the huge amount of info on the internet nowadays it pays to be cautious about what I believe. There really is something out there to support every persons point of view on different subjects no matter how opposite they are and lots of the research is ancient and or dodgy that some people use to support their views. That link was where I got the protocol drugs from.
Coral


Last edited by CoralJ on Mon 8 Dec 2008 - 19:07; edited 1 time in total (Reason for editing : add last sentence)
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Aden's mummy
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PostSubject: Re: Treatment offers Ray of hope.   Mon 8 Dec 2008 - 21:17

I went onto the changing minds link and seen that girl with blonde hair. She is the one that they claim her looks changed after having some vitamins lol I just closed the link then. I read a heap of threads over on Down syn and remembered her face so knew it wasnít something I would be interested in.
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Amarlismum
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PostSubject: Re: Treatment offers Ray of hope.   Tue 9 Dec 2008 - 8:20

Quote :
Hi Robyn excuse my ignorance but what is a TNI?
Targeted Nutritional Intervention. Basically Coral its a vitamin suppliment that is designed for kids with Ds. We use MSB+ by Nutrichem in the US but there is actually one we will be changing to made in Australia called Nutri 21. A few others on here have used it too. Im not using these vitamins for any miracle to happen but they have kept Amarli's immune system working at 100% and so far (touchwood) she hasnt even had a cold.

Quote :
She is the one that they claim her looks changed after having some vitamins lol

Dont know what girl you looked at but the one you are referring too doesnt have anything to do with the Changing minds and was taking the TNI Nutrivene. She's actually not a little girl anymore she is about 24yrs old. It was actually her mum that helped discover the vitamins etc that were lacking in children with Ds. She did go on to make some ridicules claims about her features but like ive said before im using these vitamins to keep Amarli healthy i give my other kids vitamins when they need them, whats the difference?
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CoralJ
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PostSubject: Re: Treatment offers Ray of hope.   Tue 9 Dec 2008 - 17:58

Quote :
Targeted Nutritional Intervention. Basically Coral its a vitamin suppliment that is designed for kids with Ds. We use MSB+ by Nutrichem in the US but there is actually one we will be changing to made in Australia called Nutri 21.
Have you got any further info I can look up on Nutri 21? I googled it but only got where to buy it from Qld. I might change to something like this rather than just a multi vitamin. Thanks, Coral
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PostSubject: Re: Treatment offers Ray of hope.   Wed 10 Dec 2008 - 3:57

Hi Coral, we used Nutri21 for Andy also, for several years. Like Robyn, it was purely for health purposes, and it made a massive difference to his immune system. I am actually wanting to start him on it again now as his diet is not all that crash hot these days! and snotty noses are a regular occurance.

We were perscribed it by a naturopath, Robert Claridge, and it turned Andys health around, from being on anti biotics virutally monthly to spending the next several years antibiotic free. No exaggeration there. We also took him of dairy at that stage and switched to soy milk products. That also helped to reduce the amount of mucus he produced. He would still get a cold, but it would clear itself within days, much like the rest of us can do.

I will have a look in my filing cupboard, I did have a massive paper about the Nutri 21 with very detailed information about what is in it and how it has been developed to target the weaknesses in the immune system of people who have DS.

Quote :
She did go on to make some ridicules claims about her features but like ive said before im using these vitamins to keep Amarli healthy i give my other kids vitamins when they need them, whats the difference?
I would have to say I agree with this wholeheartedly. For me it is simply about making Andy as healthy as he can be, just the same as I do for my other kids Smile
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Jules
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PostSubject: Re: Treatment offers Ray of hope.   Wed 10 Dec 2008 - 8:41

Where can you get it from, this Nutri 21?
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PostSubject: Re: Treatment offers Ray of hope.   Wed 10 Dec 2008 - 11:53

Jules, you generally have to order it through a naturopath. My sister has a friend who is a registered one, but not practising at the moment, and I just asked Rach this morning if we can see if she can order it for me. So if anyone else is interested, we might be able to get some through her.
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Jules
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PostSubject: Re: Treatment offers Ray of hope.   Wed 10 Dec 2008 - 13:00

Is it liquid?
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missyflower
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PostSubject: Re: Treatment offers Ray of hope.   Wed 10 Dec 2008 - 14:42

Hey Ladies. I had to order it through Our Health shop in our suburb called Go Vita, Springwood Qld, maybe try a google search on Go Vita to see if you have a store near you. If you do find a Go Vita Store, they could maybe phone our shop to ask them where they ordered it for me. Its Dr Vera's Nutri-21 formulation. Its in a powder form, its a bit pricy as in 100g for $67 but it will last for ages, as I only put 1/8 of a teaspoon in her cereal daily.

It did take a about 3 weeks before the formula arrived in store. Admittedly, I was only giving it to Tori every now and then, but she's been a bit sick in the last few weeks, so now I'm being a bit more religious with giving it to her daily now.
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Amarlismum
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PostSubject: Re: Treatment offers Ray of hope.   Wed 10 Dec 2008 - 15:09

You can also order it online but only if you have a Qld address to send it to. If you dont then you have to get a Naturopath to order it for you and im not sure whether they would also charge you for a consult as well.
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kspeer78
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PostSubject: Re: Treatment offers Ray of hope.   Wed 10 Dec 2008 - 15:38

The online ordering that I use is www.thexton.com.au but as Robyn says it has to be mailed to a QLD address. But I am sure that any of us Qlder's would be happy to help if necessary!!
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Aden's mummy
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PostSubject: Re: Treatment offers Ray of hope.   Thu 11 Dec 2008 - 6:52

Yeah Iím not sure why but the link I went to, I was looking around and that little gril / adult pitcher was on their. I just think the mum is well strange to make these claimsÖ
Iím all for vitaminsÖ to help when there are things lacking. I think itís great if there is an area that can be targeted in our kids, that is lacking in a particular vitamin/s. Itís true for everyone that we all would be lacking in one or another an that many people cant absorb one or anther. Iím thinking of looking into something for myself as well as the kids. Hope we can all feel a bit betterÖ
Iíll have a look at the links thanks for putting them up.
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Di
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PostSubject: Re: Treatment offers Ray of hope.   Thu 11 Dec 2008 - 12:57

Hey can anyone tell me more about ginkgo? And zinc? And iron? I think they are often the things that kids tend to be low on or benefit from having extra of (along with Omega 3 oils??). Anyways, just wondering if I or anyone else went down the route of just getting extra vitamins for Bella and our other kids, how would we determine the right dosage so it was just that little bit extra??? (ie no chance of any harm but useful)
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CoralJ
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PostSubject: Re: Treatment offers Ray of hope.   Thu 11 Dec 2008 - 18:50

Hi Di, I know a few of us were talking about it recently but I'll mention again that some people including myself use an over the counter multi vitamin for children from the chemist or some are at the supermarket. I use Pentavite with iron and it is a liquid. you can also get it as chewable tablets but Patrick likes the liquid so I'll stick with that. it has dose per kg's and because it's especially for children that is accurate and you won't give too much. I give this because of the added iron because Patrick does not eat a lot of meat. Iron occurs naturally in our bodies and helps carry oxygen in our blood ( I hope that's fairly accurate for a quick physiology lesson) and people get it mostly from green leafy veges and meats. I think zinc occurs naturally in peoples bodies too but only in small amounts and don't know what for. Best thing to do would be look up a site of recommended daily intake of vitamins and minerals I think and it should explain what each does too. Ginko biloba is a plant extract that people use for particular properties that it has but it does not occur naturally in humans. Here is a link to info on it, see further down link page for uses and side effects
http://en.wikipedia.org/wiki/Ginkgo_biloba.
Re taking different supplements etc, the least controversial and most agreed upon would be to use a multi vitamin and omega 3s (I forget what they do except that they are good fats). I need to go have a lesson on nutrition etc.
Also I suggest looking up side effects of any supplements that you take because even vitamins can have side effects. I was going to use Vit E capsules to get the liquid out and use topically on Patrick's lips but the RDI for children is tiny compared to the dose that was in the capsules and I read about side effects of too much Vit E so decided not to do it.
I hope that's not too much info, Coral
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PostSubject: Re: Treatment offers Ray of hope.   Thu 11 Dec 2008 - 19:37

As far as I know Di, the multi-vitamins can't do any harm as any excess vitamins will be urinated out. Of course only take the prescribed amount. It is only the vitamins with fat-soluble properties that you have to be careful of as those vitamins are stored in fat cells and can cause probs if you overdose on them.
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caspearson
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PostSubject: Re: Treatment offers Ray of hope.   Thu 11 Dec 2008 - 22:25

I heard Vit A is one that you need to be careful you don't overdose on. That's one of the ones that they recommend you watch for if pregnant and using moisturiser, to make sure your moisturiser doesn't have Vit A in it!? I have heard recently about Vit A from the dietician also.

That was so interesting Robyn, thanks for posting it. I'm always interested to hear the latest and greatest, but as a 'conservative adherent', I'll be waiting for the research to give me peace of mind. I know Ginkgo Biloba is some wonder drug and I did read something recently (in the last 6mths) about it but I haven't looked into it enough and/or been convinced I need to take it or give it to my kids.

The main thing with vitamins is that they will only be of benefit if you're not getting them in your diet. I know from the past, I tend to be low in Zinc (good for healthy skin & nails I believe?) and could well be just something we don't eat enough of.

Would be interesting to wait and see if there's any negative outcomes of this protocol.

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