Re: Best practice with Glutathione

[Guest guest]

I use Kirkman's Everyday's w/o A so she is getting far less or none of some things and a lot more of others. As for the glut, Kirkmans is 180mg per gram. The recommended dose of glut in NVD for her age/wght is 120 mg. So yes.. she is getting more since I typically rub on more then the tiny gram, When sick quite a bit more as I give it three times a day if real sick, twice if just a bit sick. I really dosed her up prior to and after the MMR. I was looking for transdermal vs oral and came up with this article which I found to be very clear and easy to read. Also makes me want to slather the stuff on a couple of my OTHER kids too!!! http://www.cfsresearch.org/cfs/research/treatment/15.pdf They too recommend testing plasma cysteine levels if supplementing glut, but then they are using massive

amounts to treat chronic fatigue syndrome. I wonder if the higher amounts of cysteine in DS is the result of less of the other components to finish the process since cysteine is the first chemical used by the whole process. It also mentions that when first using it, things could get worse before they get better as the body detoxes. VERY interesting article, very relevant to DS and best of all! Easy to understand. :-) What I mean by it working well for her is I think it has helped her immune system. For the first time ever her glands swelled with an illness. That's new! And VERY normal. :-) Even if she eats a lot of illegals and would get constipated , the glut will make her produce a very healthy looking, and as Priscilla mentioned, smelling stool with out any other aides. Seems if I over do it, she gets diarrhea. So I think I have a built in safe guard? But I can be

sure of anything . ;-) All I know is she has improved so much on SCD and taking her off the NVD and slowly adding things back in using Kirkman's SCD legal stuff and loading her up on antioxidents. Müller <mueller-winter@...> wrote: With all of this talk about glut. I've lost track of the pros andcons. Should I give some in addition to NVD? What aboutoverdoing it? Carol, what do you mean with it working so well for yourdaughter? She's not on NVD, right? So you're probably not giving

hertoo much?--- In Down Syndrome Treatment , Carol in IL< . Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS. My problem is not how I look. It's how you see me.

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

Which Antioxidants do you use? Did you notice an immediate improvement when you took her off the NTVd? Just curious if others have had similar experiences. We had to cut WAY back on NTV because it caused red cheeks in Olivia. We cut back to about 1/3 the dose and she does fine. Just wondering if others have reactions and are not certain the NTV may be dosed too high.

We did not notice any change with the SCD, but have seem improvement taking Gluten out of her diet. She is less bloated and less emotional when we keep her off of wheat and sugar. We do some treats, but overall she eats tons of veggies and some fruits. She ate her greens off her plate at a local eatery and the waiter could not believe it! He was about to take her plate away and she grabbed it back because she wanted to eat the greens that they use to "decorate" a child's plate! Too funny.

Joan

I use Kirkman's Everyday's w/o A so she is getting far less or none of some things and a lot more of others. As for the glut, Kirkmans is 180mg per gram.

The recommended dose of glut in NVD for her age/wght is 120 mg. So yes.. she is getting more since I typically rub on more then the tiny gram, When sick quite a bit more as I give it three times a day if real sick, twice if just a bit sick. I really dosed her up prior to and after the MMR.

I was looking for transdermal vs oral and came up with this article which I found to be very clear and easy to read. Also makes me want to slather the stuff on a couple of my OTHER kids too!!!

http://www.cfsresearch.org/cfs/research/treatment/15.pdf

They too recommend testing plasma cysteine levels if supplementing glut, but then they are using massive amounts to treat chronic fatigue syndrome. I wonder if the higher amounts of cysteine in DS is the result of less of the other components to finish the process since cysteine is the first chemical used by the whole process.

It also mentions that when first using it, things could get worse before they get better as the body detoxes. VERY interesting article, very relevant to DS and best of all! Easy to understand. :-)

What I mean by it working well for her is I think it has helped her immune system. For the first time ever her glands swelled with an illness. That's new! And VERY normal. :-) Even if she eats a lot of illegals and would get constipated , the glut will make her produce a very healthy looking, and as Priscilla mentioned, smelling stool with out any other aides. Seems if I over do it, she gets diarrhea. So I think I have a built in safe guard?

But I can be sure of anything . ;-)

All I know is she has improved so much on SCD and taking her off the NVD and slowly adding things back in using Kirkman's SCD legal stuff and loading her up on antioxidents.

Müller <mueller-winter@...> wrote:

With all of this talk about glut. I've lost track of the pros and

cons. Should I give some in addition to NVD? What about

overdoing it? Carol, what do you mean with it working so well for your

daughter? She's not on NVD, right? So you're probably not giving her

too much?

--- In Down Syndrome Treatment , Carol in IL

<

..

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

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[Guest guest]

Thanks Carol, also for the link. Actually I know someone with CFS, so

I will pass it on to her as well. So little is known about

orthomoleculars over here!

:-)

> With all of this talk about glut. I've lost track of the

pros and

> cons. Should I give some in addition to NVD? What about

> overdoing it? Carol, what do you mean with it working so well for your

> daughter? She's not on NVD, right? So you're probably not giving her

> too much?

>

>

>

> --- In Down Syndrome Treatment , Carol in IL

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[Guest guest]

Have you tried custom formulas of NTV, Joan?? They do have several custom formulas for kids who react to the regular NTV. I'd ask Dr. L & or Caroline or Rob at INI about the issue your daughter had on the full does of NTV . . . they are all very helpful!

I would not at all take her off NTV (IMO!), since there are lots of things in the formula that are not in regular multi-vits - because of gene overexpressions, deficiencies, etc. We supplement more antioxidants than what is just in NTV. This is what we do (in regards to antioxidants outside of NTV):

Tart Cherry, Blueberry, Turmeric, Carnosine.

Qadoshyah

*Got Down Syndrome?

www.gotdownsyndrome.net

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of JoanElder@...Sent: Saturday, July 22, 2006 8:07 AMDown Syndrome Treatment Subject: Re: Best practice with Glutathione

Which Antioxidants do you use? Did you notice an immediate improvement when you took her off the NTVd? Just curious if others have had similar experiences. We had to cut WAY back on NTV because it caused red cheeks in Olivia. We cut back to about 1/3 the dose and she does fine. Just wondering if others have reactions and are not certain the NTV may be dosed too high. We did not notice any change with the SCD, but have seem improvement taking Gluten out of her diet. She is less bloated and less emotional when we keep her off of wheat and sugar. We do some treats, but overall she eats tons of veggies and some fruits. She ate her greens off her plate at a local eatery and the waiter could not believe it! He was about to take her plate away and she grabbed it back because she wanted to eat the greens that they use to "decorate" a child's plate! Too funny.

Joan

I use Kirkman's Everyday's w/o A so she is getting far less or none of some things and a lot more of others. As for the glut, Kirkmans is 180mg per gram.

The recommended dose of glut in NVD for her age/wght is 120 mg. So yes.. she is getting more since I typically rub on more then the tiny gram, When sick quite a bit more as I give it three times a day if real sick, twice if just a bit sick. I really dosed her up prior to and after the MMR.

I was looking for transdermal vs oral and came up with this article which I found to be very clear and easy to read. Also makes me want to slather the stuff on a couple of my OTHER kids too!!!

http://www.cfsresearch.org/cfs/research/treatment/15.pdf

They too recommend testing plasma cysteine levels if supplementing glut, but then they are using massive amounts to treat chronic fatigue syndrome. I wonder if the higher amounts of cysteine in DS is the result of less of the other components to finish the process since cysteine is the first chemical used by the whole process.

It also mentions that when first using it, things could get worse before they get better as the body detoxes. VERY interesting article, very relevant to DS and best of all! Easy to understand. :-)

What I mean by it working well for her is I think it has helped her immune system. For the first time ever her glands swelled with an illness. That's new! And VERY normal. :-) Even if she eats a lot of illegals and would get constipated , the glut will make her produce a very healthy looking, and as Priscilla mentioned, smelling stool with out any other aides. Seems if I over do it, she gets diarrhea. So I think I have a built in safe guard?

But I can be sure of anything . ;-)

All I know is she has improved so much on SCD and taking her off the NVD and slowly adding things back in using Kirkman's SCD legal stuff and loading her up on antioxidents. Müller <mueller-winter@...> wrote:

With all of this talk about glut. I've lost track of the pros andcons. Should I give some in addition to NVD? What aboutoverdoing it? Carol, what do you mean with it working so well for yourdaughter? She's not on NVD, right? So you're probably not giving hertoo much?--- In Down Syndrome Treatment , Carol in IL<

..

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free.

[Guest guest]

In a message dated 7/23/06 8:29:40 PM, ktripp99@... writes:

Have you tried custom formulas of NTV, Joan??

Yes she is on a custom formula and has been for some time. She reacted to the Folinic and palmitate. So we have her on a formula with natural A and folate.

joan

[Guest guest]

Hi, Qadoshyah,

I want to thank you for sharing the information about tart cherries, blueberry, turmeric, and carnosine. also thanks for tart cherries website. not only for my son, but for some of my relatives... thanks again...

kk

-- RE: Best practice with Glutathione

Have you tried custom formulas of NTV, Joan?? They do have several custom formulas for kids who react to the regular NTV. I'd ask Dr. L & or Caroline or Rob at INI about the issue your daughter had on the full does of NTV . . . they are all very helpful!

I would not at all take her off NTV (IMO!), since there are lots of things in the formula that are not in regular multi-vits - because of gene overexpressions, deficiencies, etc. We supplement more antioxidants than what is just in NTV. This is what we do (in regards to antioxidants outside of NTV):

Tart Cherry, Blueberry, Turmeric, Carnosine.

Qadoshyah

*Got Down Syndrome?

www.gotdownsyndrome.net

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of JoanElder@...Sent: Saturday, July 22, 2006 8:07 AMDown Syndrome Treatment Subject: Re: Best practice with Glutathione

Which Antioxidants do you use? Did you notice an immediate improvement when you took her off the NTVd? Just curious if others have had similar experiences. We had to cut WAY back on NTV because it caused red cheeks in Olivia. We cut back to about 1/3 the dose and she does fine. Just wondering if others have reactions and are not certain the NTV may be dosed too high. We did not notice any change with the SCD, but have seem improvement taking Gluten out of her diet. She is less bloated and less emotional when we keep her off of wheat and sugar. We do some treats, but overall she eats tons of veggies and some fruits. She ate her greens off her plate at a local eatery and the waiter could not believe it! He was about to take her plate away and she grabbed it back because she wanted to eat the greens that they use to "decorate" a child's plate! Too funny.

Joan

I use Kirkman's Everyday's w/o A so she is getting far less or none of some things and a lot more of others. As for the glut, Kirkmans is 180mg per gram.

The recommended dose of glut in NVD for her age/wght is 120 mg. So yes. she is getting more since I typically rub on more then the tiny gram, When sick quite a bit more as I give it three times a day if real sick, twice if just a bit sick. I really dosed her up prior to and after the MMR.

I was looking for transdermal vs oral and came up with this article which I found to be very clear and easy to read. Also makes me want to slather the stuff on a couple of my OTHER kids too!!!

http://www.cfsresearch.org/cfs/research/treatment/15.pdf

They too recommend testing plasma cysteine levels if supplementing glut, but then they are using massive amounts to treat chronic fatigue syndrome. I wonder if the higher amounts of cysteine in DS is the result of less of the other components to finish the process since cysteine is the first chemical used by the whole process.

It also mentions that when first using it, things could get worse before they get better as the body detoxes. VERY interesting article, very relevant to DS and best of all! Easy to understand. :-)

What I mean by it working well for her is I think it has helped her immune system. For the first time ever her glands swelled with an illness. That's new! And VERY normal. :-) Even if she eats a lot of illegals and would get constipated , the glut will make her produce a very healthy looking, and as Priscilla mentioned, smelling stool with out any other aides. Seems if I over do it, she gets diarrhea. So I think I have a built in safe guard?

But I can be sure of anything . ;-)

All I know is she has improved so much on SCD and taking her off the NVD and slowly adding things back in using Kirkman's SCD legal stuff and loading her up on antioxidents. Müller <mueller-winter@...> wrote:

With all of this talk about glut. I've lost track of the pros andcons. Should I give some in addition to NVD? What aboutoverdoing it? Carol, what do you mean with it working so well for yourdaughter? She's not on NVD, right? So you're probably not giving hertoo much?--- In Down Syndrome Treatment , Carol in IL<

..

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

Check out AOL.com today. Breaking news, video search, pictures, email and IM. All on demand. Always Free.

[Guest guest]

I use C, E, zinc, tumeric and lots of fresh fruits, most of them raw. I also use a lot of fish oil as it has anti- inflamatory properties as well. You are using the same 'diet' we are now too. Still gluten free, very little sugar, only once in a while as a treat, rice flour in a baked treat on occasion , other wise we stick to SCD over all. Maybe her gut was not in as bad of shape as 's was ? is not the only one who didn't do well on NVD. Marrs sad her son was regressing on NVD, and she stopped as well. I know over the years a few people here and there have mentioned their kids seemed to improve OFF the NVD... so it's not for everyone. Go with your instincts. But if I were going to lower the dose, I think I would play around with other anti-oxidents to keep those levels up. That is one thing I have not played around with me too much. I

try to keep those levels up. I was so happy to read Q's post about grape juice's ability to keep antioxidents floating in the blood stream for a long time, diluted Welch's grape juice is ALL she drinks. :-) ( bottled not the frozen ) That is very kewl about her loving veggies. 's little friend eats loads of veggies and fermented ones to boot! She just shovels in all types of raw salsas and salads.... makes ME green with envy. ;-)JoanElder@... wrote: Which

Antioxidants do you use? Did you notice an immediate improvement when you took her off the NTVd? Just curious if others have had similar experiences. We had to cut WAY back on NTV because it caused red cheeks in Olivia. We cut back to about 1/3 the dose and she does fine. Just wondering if others have reactions and are not certain the NTV may be dosed too high. We did not notice any change with the SCD, but have seem improvement taking Gluten out of her diet. She is less bloated and less emotional when we keep her off of wheat and sugar. We do some treats, but overall she eats tons of veggies and some fruits. She ate her greens off her plate at a local eatery and the waiter could not believe it! He was about to take her plate away and she grabbed it back because she wanted to eat the greens that they use to "decorate" a child's plate! Too funny. Joan . Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS. My problem is not how I look. It's how you see me. __________________________________________________

[Guest guest]

hi, carol,

why is that that your kid and other kids seems to get better after off NVD vitamins? Is there an explanation for it? i am concerned what if the child with ds does not get what he or she needs after getting off NVD.

Hey, what is the answer??? lol

thanks, kk

-- Re: Best practice with Glutathione

I use C, E, zinc, tumeric and lots of fresh fruits, most of them raw.

I also use a lot of fish oil as it has anti- inflamatory properties as well.

You are using the same 'diet' we are now too. Still gluten free, very little sugar, only once in a while as a treat, rice flour in a baked treat on occasion , other wise we stick to SCD over all. Maybe her gut was not in as bad of shape as 's was ?

is not the only one who didn't do well on NVD. Marrs sad her son was regressing on NVD, and she stopped as well. I know over the years a few people here and there have mentioned their kids seemed to improve OFF the NVD... so it's not for everyone. Go with your instincts. But if I were going to lower the dose, I think I would play around with other anti-oxidents to keep those levels up. That is one thing I have not played around with me too much. I try to keep those levels up. I was so happy to read Q's post about grape juice's ability to keep antioxidents floating in the blood stream for a long time, diluted Welch's grape juice is ALL she drinks. :-) ( bottled not the frozen )

That is very kewl about her loving veggies. 's little friend eats loads of veggies and fermented ones to boot! She just shovels in all types of raw salsas and salads.... makes ME green with envy. ;-)JoanElder@... wrote:

Which Antioxidants do you use? Did you notice an immediate improvement when you took her off the NTVd? Just curious if others have had similar experiences. We had to cut WAY back on NTV because it caused red cheeks in Olivia. We cut back to about 1/3 the dose and she does fine. Just wondering if others have reactions and are not certain the NTV may be dosed too high. We did not notice any change with the SCD, but have seem improvement taking Gluten out of her diet. She is less bloated and less emotional when we keep her off of wheat and sugar. We do some treats, but overall she eats tons of veggies and some fruits. She ate her greens off her plate at a local eatery and the waiter could not believe it! He was about to take her plate away and she grabbed it back because she wanted to eat the greens that they use to "decorate" a child's plate! Too funny.

Joan

..

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

__________________________________________________

[Guest guest]

Also, could you definite what you mean by regressing on NVD? how old were your daughter and 's son when getting off NVD? Is there similiar age?

-- Re: Best practice with Glutathione

I use C, E, zinc, tumeric and lots of fresh fruits, most of them raw.

I also use a lot of fish oil as it has anti- inflamatory properties as well.

You are using the same 'diet' we are now too. Still gluten free, very little sugar, only once in a while as a treat, rice flour in a baked treat on occasion , other wise we stick to SCD over all. Maybe her gut was not in as bad of shape as 's was ?

is not the only one who didn't do well on NVD. Marrs sad her son was regressing on NVD, and she stopped as well. I know over the years a few people here and there have mentioned their kids seemed to improve OFF the NVD... so it's not for everyone. Go with your instincts. But if I were going to lower the dose, I think I would play around with other anti-oxidents to keep those levels up. That is one thing I have not played around with me too much. I try to keep those levels up. I was so happy to read Q's post about grape juice's ability to keep antioxidents floating in the blood stream for a long time, diluted Welch's grape juice is ALL she drinks. :-) ( bottled not the frozen )

That is very kewl about her loving veggies. 's little friend eats loads of veggies and fermented ones to boot! She just shovels in all types of raw salsas and salads.... makes ME green with envy. ;-)JoanElder@... wrote:

Which Antioxidants do you use? Did you notice an immediate improvement when you took her off the NTVd? Just curious if others have had similar experiences. We had to cut WAY back on NTV because it caused red cheeks in Olivia. We cut back to about 1/3 the dose and she does fine. Just wondering if others have reactions and are not certain the NTV may be dosed too high. We did not notice any change with the SCD, but have seem improvement taking Gluten out of her diet. She is less bloated and less emotional when we keep her off of wheat and sugar. We do some treats, but overall she eats tons of veggies and some fruits. She ate her greens off her plate at a local eatery and the waiter could not believe it! He was about to take her plate away and she grabbed it back because she wanted to eat the greens that they use to "decorate" a child's plate! Too funny.

Joan

..

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

__________________________________________________

[Guest guest]

You would have to ask exactly, but she implied cognitively and he is older then .... in 5 th grade, I think!! Anyone here on ES who could find the details ? She posted about this not too long ago... spring. She now uses Brain child supplements, I THINK!!! I looked at them but they were full of illegals so didn't retain the info. is very smart, in regular school with little help and doing great. Gets A's!!! His home page is not working right now....http://www.comwares.net/marrs/index.html I started on NVD when she was 8 weeks old and did notice improvement in her energy level right off along with alertness. She had lots of health issues - 2 open heart's, asthma, GERD, subglottal stenosis and auto-immune disorder that literally eats your genitals called lichen sclerosis..... I know I am forgetting something ;-) I try to anyway ;-) oh ya.. tubes in her ears

that are not causing a hearing loss. She developed all these complications while on NVD along with severe constipation. In desperation I took her off everything and put her on the SCD. The improvement was out of this world! Far above and beyond anything on NVD, and across the board! All major skill areas exploded. I tried adding the NVD back in and every time I did, she become very constipated and cranky along with just plain acting badly. Got the SCD legal form and still had problems. So just ditched the whole thing and went my own way. Now she has maintained and continues to improve in all areas. Including her homocystine levels.. smack in the middle of normal- oh yeah.. thyroid!!!! I did forget that one.. got worse on NVD and is now IMPROVING... reduced the dose and that dose is fine, just got the tests back. :-) Her MCV improved too!!! All after getting OFF NVD. And since you like comparing

;-) I will tell you what can do at 6. :-) She can read. She can so simple addtion up to 6. Counts and knows one to one to 10, working on rote counting to 20! Some days she gets it... Dresses herself. Potty trained at 3. Speaks simple sentences of up to three words that we can understand... speaks really LONG sentences we can't always get. Have lost track of her sign vocab, signs with one hand now... does full sentences in sign. Knows tons of general info- such as caterpillars turn into butterflies., Eggs have birds or dinosaurs in them. Knows how to crack an egg too ;-) Stays in our yard 99% of the time. Can leave her alone in the house for short periods ( I am just outside, not gone) Answers when called. I could go on, but she tests our NORMAL in her basic skills and ABOVE normal on some academics. She knows how to use the phone too. Answers and gets it to the correct person on her own and, too bad for me... knows how to speed dial home from my cell, and also knows how to call her best friend!! eeks.... I hope no one shows her how to dial 911!!! :-O She is working on calling her big sister... can talk to her for up to 20mins and have a real conversation with her. She knows her addy, but you could only understand it if you knew it ahead of time as her articulation is awful. ;-) All this with out NVD. For her SCD was THE cure... so i guess I could imply that all kids who aren't using SCD are neglecting their child's health.... not to be a smart aleck, kk. But honestly, we just can NOT make such claims as all the kids are very different and it's very hurtful to parents who have not chosen supplements and does nothing to get information out there to say that. It just

turns them off, as well it should. Parents need information with out judgments. We have no right to make such judgments as there are no hard facts to prove us right anyway and just as much anecdotal evidence to prove us wrong as their is for us to be right. I have met some very smart kids/adults with DS who have never taken a single supplement. And some kids on supplements who are struggling with many different issues and did not notice a big improvement. For any positive evidence you have for it, there is just as much out there against it. We need studies. And I don't think that results are going to be that conclusive and honestly I think it's going to take a lot more then supplements to cure what ails our kids. We are all simply doing what works best for each of our own kids. And for the record- I *used* to

think the same as you. But now I have seen more and understand more... and of course from my own experience realize that I do not have all the answers for ALL kids and regret any guilt I may have heaped on other parents. "ktripp99@..." <ktripp99@...> wrote: Also, could you

definite what you mean by regressing on NVD? how old were your daughter and 's son when getting off NVD? Is there similiar age? -- Re: Best practice with Glutathione I use C, E, zinc, tumeric and lots of fresh fruits, most of them raw. I also use a lot of fish oil as it has anti- inflamatory

properties as well. You are using the same 'diet' we are now too. Still gluten free, very little sugar, only once in a while as a treat, rice flour in a baked treat on occasion , other wise we stick to SCD over all. Maybe her gut was not in as bad of shape as 's was ? is not the only one who didn't do well on NVD. Marrs sad her son was regressing on NVD, and she stopped as well. I know over the years a few people here and there have mentioned their kids seemed to improve OFF the NVD... so it's not for everyone. Go with your instincts. But if I were going to lower the dose, I think I would play around with other anti-oxidents to keep those levels up. That is one thing I have not played around with me too much. I try to keep those levels up. I was so happy to read Q's post about grape juice's ability to keep antioxidents floating in the blood

stream for a long time, diluted Welch's grape juice is ALL she drinks. :-) ( bottled not the frozen ) That is very kewl about her loving veggies. 's little friend eats loads of veggies and fermented ones to boot! She just shovels in all types of raw salsas and salads.... makes ME green with envy. ;-)JoanElder@... wrote: Which Antioxidants do you use? Did you notice an immediate improvement when you took her off the NTVd? Just curious if others have had similar experiences. We had to cut WAY back on NTV because it caused red cheeks in Olivia. We cut back to about 1/3 the dose and she does fine. Just wondering if others have reactions and are not certain the NTV may be dosed too high. We did not notice any change with the SCD, but have seem improvement taking Gluten out of her

diet. She is less bloated and less emotional when we keep her off of wheat and sugar. We do some treats, but overall she eats tons of veggies and some fruits. She ate her greens off her plate at a local eatery and the waiter could not believe it! He was about to take her plate away and she grabbed it back because she wanted to eat the greens that they use to "decorate" a child's plate! Too funny. Joan . Carol in IL Mom to seven including , 6 with TOF,

AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS. My problem is not how I look. It's how you see me. __________________________________________________

[Guest guest]

I'm sorry but SCD? I think I may have missed

something have all 3 boys home. What is it?

Sorry for making you repeat yourself

--- Carol in IL <ps1272000@...> wrote:

> You would have to ask exactly, but she

> implied cognitively and he is older then

> .... in 5 th grade, I think!! Anyone here

> on ES who could find the details ? She posted about

> this not too long ago... spring. She now uses Brain

> child supplements, I THINK!!! I looked at them but

> they were full of illegals so didn't retain the

> info.

> is very smart, in regular school with little

> help and doing great. Gets A's!!! His home page is

> not working right

> now....http://www.comwares.net/marrs/index.html

>

> I started on NVD when she was 8 weeks

> old and did notice improvement in her energy level

> right off along with alertness.

> She had lots of health issues - 2 open heart's,

> asthma, GERD, subglottal stenosis and auto-immune

> disorder that literally eats your genitals called

> lichen sclerosis..... I know I am forgetting

> something ;-) I try to anyway ;-) oh ya.. tubes in

> her ears that are not causing a hearing loss.

>

> She developed all these complications while on NVD

> along with severe constipation. In desperation I

> took her off everything and put her on the SCD. The

> improvement was out of this world! Far above and

> beyond anything on NVD, and across the board! All

> major skill areas exploded. I tried adding the NVD

> back in and every time I did, she become very

> constipated and cranky along with just plain acting

> badly. Got the SCD legal form and still had

> problems. So just ditched the whole thing and went

> my own way. Now she has maintained and continues to

> improve in all areas. Including her homocystine

> levels.. smack in the middle of normal- oh yeah..

> thyroid!!!! I did forget that one.. got worse on NVD

> and is now IMPROVING... reduced the dose and that

> dose is fine, just got the tests back. :-) Her MCV

> improved too!!! All after getting OFF NVD.

>

> And since you like comparing ;-) I will tell you

> what can do at 6. :-)

>

> She can read.

> She can so simple addtion up to 6.

> Counts and knows one to one to 10, working on rote

> counting to 20! Some days she gets it...

> Dresses herself.

> Potty trained at 3.

> Speaks simple sentences of up to three words that

> we can understand... speaks really LONG sentences we

> can't always get.

> Have lost track of her sign vocab, signs with one

> hand now... does full sentences in sign.

> Knows tons of general info- such as caterpillars

> turn into butterflies., Eggs have birds or dinosaurs

> in them. Knows how to crack an egg too ;-)

> Stays in our yard 99% of the time. Can leave her

> alone in the house for short periods ( I am just

> outside, not gone)

> Answers when called.

> I could go on, but she tests our NORMAL in her

> basic skills and ABOVE normal on some academics.

>

> She knows how to use the phone too. Answers and

> gets it to the correct person on her own and, too

> bad for me... knows how to speed dial home from my

> cell, and also knows how to call her best friend!!

> eeks.... I hope no one shows her how to dial 911!!!

> :-O

> She is working on calling her big sister... can

> talk to her for up to 20mins and have a real

> conversation with her.

> She knows her addy, but you could only understand

> it if you knew it ahead of time as her articulation

> is awful. ;-)

>

>

> All this with out NVD. For her SCD was THE cure...

> so i guess I could imply that all kids who aren't

> using SCD are neglecting their child's health....

> not to be a smart aleck, kk. But honestly, we just

> can NOT make such claims as all the kids are very

> different and it's very hurtful to parents who have

> not chosen supplements and does nothing to get

> information out there to say that. It just turns

> them off, as well it should. Parents need

> information with out judgments. We have no right to

> make such judgments as there are no hard facts to

> prove us right anyway and just as much anecdotal

> evidence to prove us wrong as their is for us to be

> right.

>

> I have met some very smart kids/adults with DS who

> have never taken a single supplement. And some kids

> on supplements who are struggling with many

> different issues and did not notice a big

> improvement. For any positive evidence you have for

> it, there is just as much out there against it.

>

>

>

> We need studies. And I don't think that results

> are going to be that conclusive and honestly I think

> it's going to take a lot more then supplements to

> cure what ails our kids.

>

> We are all simply doing what works best for each

> of our own kids.

>

> And for the record- I *used* to think the same as

> you. But now I have seen more and understand more...

> and of course from my own experience realize that I

> do not have all the answers for ALL kids and regret

> any guilt I may have heaped on other parents.

>

>

>

> " ktripp99@... " <ktripp99@...>

> wrote:

> Also, could you definite what

> you mean by regressing on NVD? how old were your

> daughter and 's son when getting off NVD? Is

> there similiar age?

>

> -- Re: Best

> practice with Glutathione

>

>

> I use C, E, zinc, tumeric and lots of fresh

> fruits, most of them raw.

> I also use a lot of fish oil as it has anti-

> inflamatory properties as well.

>

> You are using the same 'diet' we are now too.

> Still gluten free, very little sugar, only once in a

> while as a treat, rice flour in a baked treat on

> occasion , other wise we stick to SCD over all.

> Maybe her gut was not in as bad of shape as

> 's was ?

>

>

> is not the only one who didn't do well

> on NVD. Marrs sad her son was regressing on

> NVD, and she stopped as well. I know over the years

> a few people here and there have mentioned their

> kids seemed to improve OFF the NVD... so it's not

> for everyone. Go with your instincts. But if I were

> going to lower the dose, I think I would play

> around with other anti-oxidents to keep those levels

> up. That is one thing I have not played around with

> me too much. I try to keep those levels up. I was

> so happy to read Q's post about grape juice's

> ability to keep antioxidents floating in the blood

> stream for a long time, diluted Welch's grape juice

> is ALL she drinks. :-) ( bottled not the frozen )

>

>

> That is very kewl about her loving veggies.

> 's little friend eats loads of veggies and

> fermented ones to boot! She just shovels in all

> types of raw salsas and salads.... makes ME green

> with envy. ;-)

>

> JoanElder@... wrote:

> Which Antioxidants do you use? Did you

> notice an immediate improvement when you took her

> off the NTVd? Just curious if others have had

> similar experiences. We had to cut WAY back on NTV

> because it caused red cheeks in Olivia. We cut back

> to about 1/3 the dose and she does fine. Just

> wondering if others have reactions and are not

> certain the NTV may be dosed too high.

> We did not notice any change with the SCD, but have

> seem improvement taking Gluten out of her diet. She

> is less bloated and less emotional when we keep her

> off of wheat and sugar. We do some treats, but

> overall she eats tons of veggies and some fruits.

> She ate her greens off her plate at a local eatery

> and the waiter could not believe it! He was about to

> take her plate away and she grabbed it back because

> she wanted to eat the greens that they use to

> " decorate " a child's plate! Too funny.

> Joan

>

>

>

>

>

> .

>

>

>

>

>

>

=== message truncated ===

__________________________________________________

[Guest guest]

Hey, Carol: Just curious... do you do the SCD diet and the supplements both?

Betty in TN

>

> From: Carol in IL <ps1272000@...>

> Date: 2006/07/25 Tue PM 12:43:21 EDT

> Down Syndrome Treatment

> Subject: Re: Best practice with Glutathione

>

> You would have to ask exactly, but she implied cognitively and he is

older then .... in 5 th grade, I think!! Anyone here on ES who could

find the details ? She posted about this not too long ago... spring. She now

uses Brain child supplements, I THINK!!! I looked at them but they were full of

illegals so didn't retain the info.

> is very smart, in regular school with little help and doing great. Gets

A's!!! His home page is not working right

now....http://www.comwares.net/marrs/index.html

>

> I started on NVD when she was 8 weeks old and did notice

improvement in her energy level right off along with alertness.

> She had lots of health issues - 2 open heart's, asthma, GERD, subglottal

stenosis and auto-immune disorder that literally eats your genitals called

lichen sclerosis..... I know I am forgetting something ;-) I try to anyway ;-)

oh ya.. tubes in her ears that are not causing a hearing loss.

>

> She developed all these complications while on NVD along with severe

constipation. In desperation I took her off everything and put her on the SCD.

The improvement was out of this world! Far above and beyond anything on NVD, and

across the board! All major skill areas exploded. I tried adding the NVD back in

and every time I did, she become very constipated and cranky along with just

plain acting badly. Got the SCD legal form and still had problems. So just

ditched the whole thing and went my own way. Now she has maintained and

continues to improve in all areas. Including her homocystine levels.. smack in

the middle of normal- oh yeah.. thyroid!!!! I did forget that one.. got worse on

NVD and is now IMPROVING... reduced the dose and that dose is fine, just got the

tests back. :-) Her MCV improved too!!! All after getting OFF NVD.

>

> And since you like comparing ;-) I will tell you what can do at

6. :-)

>

> She can read.

> She can so simple addtion up to 6.

> Counts and knows one to one to 10, working on rote counting to 20! Some days

she gets it...

> Dresses herself.

> Potty trained at 3.

> Speaks simple sentences of up to three words that we can understand...

speaks really LONG sentences we can't always get.

> Have lost track of her sign vocab, signs with one hand now... does full

sentences in sign.

> Knows tons of general info- such as caterpillars turn into butterflies.,

Eggs have birds or dinosaurs in them. Knows how to crack an egg too ;-)

> Stays in our yard 99% of the time. Can leave her alone in the house for

short periods ( I am just outside, not gone)

> Answers when called.

> I could go on, but she tests our NORMAL in her basic skills and ABOVE normal

on some academics.

>

> She knows how to use the phone too. Answers and gets it to the correct

person on her own and, too bad for me... knows how to speed dial home from my

cell, and also knows how to call her best friend!! eeks.... I hope no one shows

her how to dial 911!!! :-O

> She is working on calling her big sister... can talk to her for up to 20mins

and have a real conversation with her.

> She knows her addy, but you could only understand it if you knew it ahead of

time as her articulation is awful. ;-)

>

>

> All this with out NVD. For her SCD was THE cure... so i guess I could imply

that all kids who aren't using SCD are neglecting their child's health.... not

to be a smart aleck, kk. But honestly, we just can NOT make such claims as all

the kids are very different and it's very hurtful to parents who have not chosen

supplements and does nothing to get information out there to say that. It just

turns them off, as well it should. Parents need information with out judgments.

We have no right to make such judgments as there are no hard facts to prove us

right anyway and just as much anecdotal evidence to prove us wrong as their is

for us to be right.

>

> I have met some very smart kids/adults with DS who have never taken a single

supplement. And some kids on supplements who are struggling with many different

issues and did not notice a big improvement. For any positive evidence you have

for it, there is just as much out there against it.

>

>

>

> We need studies. And I don't think that results are going to be that

conclusive and honestly I think it's going to take a lot more then supplements

to cure what ails our kids.

>

> We are all simply doing what works best for each of our own kids.

>

> And for the record- I *used* to think the same as you. But now I have seen

more and understand more... and of course from my own experience realize that I

do not have all the answers for ALL kids and regret any guilt I may have heaped

on other parents.

>

>

>

> " ktripp99@... " <ktripp99@...> wrote:

> Also, could you definite what you mean by regressing on

NVD? how old were your daughter and 's son when getting off NVD? Is there

similiar age?

>

> -- Re: Best practice with Glutathione

>

>

> I use C, E, zinc, tumeric and lots of fresh fruits, most of them raw.

> I also use a lot of fish oil as it has anti- inflamatory properties as well.

>

> You are using the same 'diet' we are now too. Still gluten free, very little

sugar, only once in a while as a treat, rice flour in a baked treat on occasion

, other wise we stick to SCD over all. Maybe her gut was not in as bad of shape

as 's was ?

>

>

> is not the only one who didn't do well on NVD. Marrs sad her

son was regressing on NVD, and she stopped as well. I know over the years a few

people here and there have mentioned their kids seemed to improve OFF the NVD...

so it's not for everyone. Go with your instincts. But if I were going to lower

the dose, I think I would play around with other anti-oxidents to keep those

levels up. That is one thing I have not played around with me too much. I try to

keep those levels up. I was so happy to read Q's post about grape juice's

ability to keep antioxidents floating in the blood stream for a long time,

diluted Welch's grape juice is ALL she drinks. :-) ( bottled not the frozen )

>

>

> That is very kewl about her loving veggies. 's little friend eats

loads of veggies and fermented ones to boot! She just shovels in all types of

raw salsas and salads.... makes ME green with envy. ;-)

>

> JoanElder@... wrote:

> Which Antioxidants do you use? Did you notice an immediate

improvement when you took her off the NTVd? Just curious if others have had

similar experiences. We had to cut WAY back on NTV because it caused red cheeks

in Olivia. We cut back to about 1/3 the dose and she does fine. Just wondering

if others have reactions and are not certain the NTV may be dosed too high.

> We did not notice any change with the SCD, but have seem improvement taking

Gluten out of her diet. She is less bloated and less emotional when we keep her

off of wheat and sugar. We do some treats, but overall she eats tons of veggies

and some fruits. She ate her greens off her plate at a local eatery and the

waiter could not believe it! He was about to take her plate away and she grabbed

it back because she wanted to eat the greens that they use to " decorate " a

child's plate! Too funny.

> Joan

>

>

>

>

>

> .

>

>

>

>

>

> Carol in IL

> Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma,

subglottal stenosis, chronic constipation ( cured now ) and DS.

>

> My problem is not how I look. It's how you see me.

>

> __________________________________________________

>

[Guest guest]

Coming in late here and I'm not sure of what I'm talking about much

on this BUT Evan has been on a little bit of oral glutathione --like

maybe 15 mgs. oral glutathione a day? I think? in addition to NVD.

Anyway I used this smaller amount because he stims bunches if I give

him more --course he's one of those anyway that stims on piracetam,

folinic, etc. so . . . I know maybe cysteine levels may have

something to do with all this stimming but . . . have never really

understood it all --just wanted to add that I think it may be

possible for some of our kids to get too much glutathione or at least

it seems that way with Evan. It does seem like he needed that little

extra though beyond what the NVD has??!!!

Priscilla K

--- Hoppin' Herd of Hares <feargod@...> wrote:

> I haven't read Carol's whole post yet...

>

> But, I don't think you can give too much Glutathione in the DS

> case. The

> Glutathione that's in NVD raises Glutathione levels where they are

> just

> about 1/3 deficient still. So, doing some transdermal cream would

> help raise

> those - maybe to normal or closer to normal. The only thing I don't

> like

> about some of the Glut creams is that they have N-acetyl-cysteine

> in them. I

> know it is a component of Glut, but I wouldn't give it to my

> brother.

> Cysteine is already high in DS & NAC has been shown to, for some

> reason,

> increase oxidative stress in DS. If I remember correctly the

> Kirkman's Glut

> cream doesn't have NAC in it, but just cysteine, I think.

>

> Qadoshyah

> <http://www.geocities.com/gotgenetics/home.html>

> *Got Down Syndrome?

> www.gotdownsyndrome.net <http://www.gotdownsyndrome.net/>

> <http://www.geocities.com/dsinfo05/home.html>

> <http://www.geocities.com/westernsuntack>

>

> _____

>

> From: Down Syndrome Treatment

> [mailto:Down Syndrome Treatment ] On Behalf Of

>

> Müller

> Sent: Saturday, July 22, 2006 4:48 AM

> Down Syndrome Treatment

> Subject: Best practice with Glutathione

>

>

>

> With all of this talk about glut. I've lost track of the pros and

> cons. Should I give some in addition to NVD? What about

> overdoing it? Carol, what do you mean with it working so well for

> your

> daughter? She's not on NVD, right? So you're probably not giving

> her

> too much?

>

>

>

>

> > http://www.thorne.

> <http://www.thorne.com/altmedrev/fulltext/glut.html>

> com/altmedrev/fulltext/glut.html

> >

> >

> >

> >

> >

> >

> >

> >

> > ---------------------------------

> > Do you ?

> > Get on board. You're invited to try the new Beta.

> >

>

>

>

>

>

Priscilla Kendrick, married 28 years to Darrel and parents of 9 kids including

Evan, 10, born with Down Syndrome and Spina Bifida

" My strength is made perfect in weakness. "

" My grace is sufficient. " II Corinthians 12:9 KJV

__________________________________________________

[Guest guest]

Priscilla,

Glad you posted on this. I'm late on this topic as well. also stimmed on Piracitam. I never did supp. with the Glut., so can't compare notes on that. I read a good book (forget the name, but I posted about it a year or so on the ES list, if anyone wants to check the archives) on how the biochem works when supplementing with glutathione when I was considering it for . Based on what I read and comparing it to Ginger's explanations of the biochem of DS (also on the ES list) I could see that it could go wacko with the cysteine problems and exaserbate the distruction of brain cells, so I opted out. At the time, I don't believe anyone responded to my thoughts. I was hoping someone would take away my concerns and that I would feel comfortable supplementing with it. But no such luck! Though, I don't remember the biochem details, thought I ought to post, in case anyone is interested they could dig it up, or comment further.

Jill

[Guest guest]

I am going to look at the ES lists sometime in the next few days to see that book you recommended.

I have been leary of doing Glutathione cream because of the cysteine it has in it - which is why we haven't done it yet. My brother does take Glutathione in NVD.

There's a book I just ordered that has an article in it on Glutathione & Apoptosis (programmed cell death), so I'm very curious what that article has in it. We'll see.

Qadoshyah

*Got Down Syndrome?

www.gotdownsyndrome.net

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of Jill and Rick SierraSent: Monday, July 31, 2006 2:01 AMDown Syndrome Treatment Subject: Re: Best practice with Glutathione

Priscilla,

Glad you posted on this. I'm late on this topic as well. also stimmed on Piracitam. I never did supp. with the Glut., so can't compare notes on that. I read a good book (forget the name, but I posted about it a year or so on the ES list, if anyone wants to check the archives) on how the biochem works when supplementing with glutathione when I was considering it for . Based on what I read and comparing it to Ginger's explanations of the biochem of DS (also on the ES list) I could see that it could go wacko with the cysteine problems and exaserbate the distruction of brain cells, so I opted out. At the time, I don't believe anyone responded to my thoughts. I was hoping someone would take away my concerns and that I would feel comfortable supplementing with it. But no such luck! Though, I don't remember the biochem details, thought I ought to post, in case anyone is interested they could dig it up, or comment further.

Jill