Re: curcumin, etc.

Book

- Down Syndrome: What You CAN Do

Buy

Leave

a comment at ~ www.squidoo.com/gotdownsyndrome

From:

[mailto:DownSyndromeInfoExchange ] On Behalf Of Ruby

Bowdoin

Sent: Wednesday, December 02, 2009 1:20 PM

http://gotdownsyndrome.blogspot.com/search/label/Longvida

Subject: Re: [DownSyndromeInfoExchange] curcumin, etc.

Hi Missy

I feel the same way you do. I try to read the info out

there but don't understand much better after I've done some reading. A

lot of what I've found is written in technical language and hard for me to

understand. Just know you're not alone, I am interested in trying some of

these things but just can't get a good understanding of so much of it.

Ruby

Hi everyone- I am a mother to a 7 year

old girl with DS living in Maine. I have been reading your postings

regarding curcumin and to be honest, I am completely overwhelmed. I have

tried to read the research online and have tried to read the archives of this

group but I'm on overload. Truly. Yet I really, really want to gain

info. and help our daughter.

Is there anyone that is able to give

me the Cliff notes on this (dosages, other supplements, research)? I

would truly appreciate your help. It feels scary to provide my daughter

with supplements based on what I'm reading online, not knowing if I can trust

my spotty understanding.

Many, many thanks.

Missy

=

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

07:33:00

December 2, 2009

i think that it would help everyone to have it posted here in easy to understand language... KathyR

I

understand how this can get quite overwhelming. I have a lot of info on my blog

and much of it is just the clear-cut info. Feel free to email me off list with

any other questions .

Here’s

the link:

Qadoshyah

Blog

Book

- Down Syndrome: What You CAN Do

Buy

Leave

a comment at ~ www.squidoo.com/gotdownsyndrome

From:

[mailto:DownSyndromeInfoExchange ] On Behalf Of Ruby

Bowdoin

Sent: Wednesday, December 02, 2009 1:20 PM

Subject: Re: [DownSyndromeInfoExchange] curcumin, etc.

Hi Missy

I feel the same way you do. I try to read the info out

there but don't understand much better after I've done some reading. A

lot of what I've found is written in technical language and hard for me to

understand. Just know you're not alone, I am interested in trying some of

these things but just can't get a good understanding of so much of it.

Ruby

Hi everyone- I am a mother to a 7 year

old girl with DS living in Maine. I have been reading your postings

regarding curcumin and to be honest, I am completely overwhelmed. I have

tried to read the research online and have tried to read the archives of this

group but I'm on overload. Truly. Yet I really, really want to gain

info. and help our daughter.

Is there anyone that is able to give

me the Cliff notes on this (dosages, other supplements, research)? I

would truly appreciate your help. It feels scary to provide my daughter

with supplements based on what I'm reading online, not knowing if I can trust

my spotty understanding.

Many, many thanks.

Missy

=

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

07:33:00

December 3, 2009

What

information or questions do people exactly have? Feel free to ask and I will

try my best to answer with easy answers .

Qadoshyah

Blog

Book

- Down Syndrome: What You CAN Do

Buy

Leave

a comment at ~ www.squidoo.com/gotdownsyndrome

From:

[mailto:DownSyndromeInfoExchange ] On Behalf Of KathyR

Sent: Wednesday, December 02, 2009 5:15 PM

http://gotdownsyndrome.blogspot.com/search/label/Longvida

Subject: Re: [DownSyndromeInfoExchange] curcumin, etc.

i think that it would help everyone to have it

posted here in easy to understand language...

KathyR

I

understand how this can get quite overwhelming. I have a lot of info on my blog

and much of it is just the clear-cut info. Feel free to email me off list with

any other questions .

Here’s

the link:

Qadoshyah

Blog

Book

- Down Syndrome: What You CAN Do

Buy

Leave

a comment at ~ www.squidoo.com/gotdownsyndrome

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Ruby

Bowdoin

Sent: Wednesday, December 02, 2009 1:20 PM

http://www.amazon.com/Down-Syndrome-What-You-CAN/dp/0615259162/ref=sr_1_1?ie=UTF\

Subject: Re: [DownSyndromeInfoExchange] curcumin, etc.

Hi Missy

I feel the same way you do. I try to read the info out

there but don't understand much better after I've done some reading. A

lot of what I've found is written in technical language and hard for me to

understand. Just know you're not alone, I am interested in trying some of

these things but just can't get a good understanding of so much of it.

Ruby

Hi everyone- I am a mother to a 7 year old girl with DS living in

Maine. I have been reading your postings regarding curcumin and to be

honest, I am completely overwhelmed. I have tried to read the research

online and have tried to read the archives of this group but I'm on

overload. Truly. Yet I really, really want to gain info. and help

our daughter.

Is there anyone that is able to give me the Cliff notes on this

(dosages, other supplements, research)? I would truly appreciate your

help. It feels scary to provide my daughter with supplements based on

what I'm reading online, not knowing if I can trust my spotty understanding.

Many, many thanks.

Missy

=

No virus found in

this incoming message.

Checked by AVG - www.avg.com

Version:

8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09 07:33:00

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

07:33:00

December 4, 2009

Marsha what is Dr L Basing his dosage on ?? 2000 mg for what age group ??? I upped Sam to 5000mg and in the last two days have seen much more comprehension and meaningful speech. Sam can also apparently follow pretty complex instructions now too. This was way beyond him just a few weeks ago .

[DownSyndromeInfoExchange] Re: curcumin, etc.

,I sit on this stupid computer all the time so that's why I know a lot. Not an ideal situation. To be truthful, it will be good when that changes. Still, I'm glad to know what I know. If it would make you feel more comfortable, you can also join the DSTNI listserve where Dr. L (geneticist) is recommending Longvida curcumin. Dr. L is using 2000 mg daily for his clients at this time.As far as your understanding - the information is still spotty itself. I'm currently trying an herbal MAO-B inhibitor for cognition to see if it helps my son. It's very safe at the prescribed dosages. We haven't arrived yet (as a community), but we're trying.Recommended dosages/products:Look at www.changingmindsfoundation.com Ginkgo biloba: 2.5 mg/lb recommendedTrisomy 21 Research:http://www.nutrivene.com/educational_info/Trisomy21Protocol0609.pdfGinkgo biloba: 2.2 mg/lb recommendedJust so you know, there are "position papers" issued about the use of vitamins in Down syndrome and also about the Changing Minds Foundation protocol. http://www.down-syndrome.org/statements/2106/We use part of the CMF protocol, but I think that every parent should be aware of this statement. That is my position.Curcumin - http://gotdownsyndrome.blogspot.com/2009/07/longvida-curcumin.htmlAll attempts to remediate using drugs or herbs like curcumin/ginkgoare based on DS research:http://us.yhs.search.yahoo.com/avg/search?p=stanford+ds+research & fr=yhs-avg & ei=UTF-8 & partnerid=yhs-avg & type=yahoo_avg_hs2-tb-web_usLots of info. under Archives - News & Viewshttp://www.dsrtf.org/I'm sorry.... I've given you too much information :(Marsha>> Hi everyone- I am a mother to a 7 year old girl with DS living in Maine. I> have been reading your postings regarding curcumin and to be honest, I am> completely overwhelmed. I have tried to read the research online and have> tried to read the archives of this group but I'm on overload. Truly. Yet I> really, really want to gain info. and help our daughter.> > Is there anyone that is able to give me the Cliff notes on this (dosages,> other supplements, research)? I would truly appreciate your help. It feels> scary to provide my daughter with supplements based on what I'm reading> online, not knowing if I can trust my spotty understanding.> > Many, many thanks.> > Missy>

December 4, 2009

,

He views it as a powerful antioxidant which it is and he's also interested in

its use for the amyloid plaque. I don't believe that he's trying to use it for

cognition purposes. This would be for the adult age group.

Your observations are very interesting. I did e-mail Blake Ebersole and asked

mentioned the MAO-A inhibition to Dr. L. They both seem to think that

curcumin's effect on MAO would be weak. But there are other pathways....

Marsha

> >

> > Hi everyone- I am a mother to a 7 year old girl with DS living in Maine. I

> > have been reading your postings regarding curcumin and to be honest, I am

> > completely overwhelmed. I have tried to read the research online and have

> > tried to read the archives of this group but I'm on overload. Truly. Yet I

> > really, really want to gain info. and help our daughter.

> >

> > Is there anyone that is able to give me the Cliff notes on this (dosages,

> > other supplements, research)? I would truly appreciate your help. It feels

> > scary to provide my daughter with supplements based on what I'm reading

> > online, not knowing if I can trust my spotty understanding.

> >

> > Many, many thanks.

> >

> > Missy

> >

>

December 4, 2009

Hi Marsha ,

What I see with is that he is building on skills all the time. To me that's the magic of curucmin. His confidence is at an all time high and he is honestly eager to try things all the time now .

Early improvements in speech have been built on and will continue to I hope. Very improvements in fine motor have meant he is trying more with his hands and as his confidence builds he is discovering he can do more. Failure is not such a frequent visitor as it was . This is how Sam is progressing. Its not all down directly to curcumin but indirectly . Make sense ????

[DownSyndromeInfoExchange] Re: curcumin, etc.

,He views it as a powerful antioxidant which it is and he's also interested in its use for the amyloid plaque. I don't believe that he's trying to use it for cognition purposes. This would be for the adult age group.Your observations are very interesting. I did e-mail Blake Ebersole and asked mentioned the MAO-A inhibition to Dr. L. They both seem to think that curcumin's effect on MAO would be weak. But there are other pathways....Marsha> >> > Hi everyone- I am a mother to a 7 year old girl with DS living in Maine. I> > have been reading your postings regarding curcumin and to be honest, I am> > completely overwhelmed. I have tried to read the research online and have> > tried to read the archives of this group but I'm on overload. Truly. Yet I> > really, really want to gain info. and help our daughter.> > > > Is there anyone that is able to give me the Cliff notes on this (dosages,> > other supplements, research)? I would truly appreciate your help. It feels> > scary to provide my daughter with supplements based on what I'm reading> > online, not knowing if I can trust my spotty understanding.> > > > Many, many thanks.> > > > Missy> >>

December 8, 2009

Hello,

We have a 4 year old son with DS and are interested in possibly starting him on

curcumin and ginkgo biloba. I think the first and most basic question we have

is---where to start!!

We have read the recent postings as well as tried to research on our own but are

very confused. A lot of the postings have several abbreviations as well as some

medical terms we do not understand. With both of us working full-time, outside

the home, we are not able to research all the words that we don't know. Help! I

think what we're most interested in is where to start. Our son is 33 pounds and

has no medical issues. The only medicine he takes is Nasonex for allergies. He

takes a daily multivitamin along with another vitamin with 80 mg of Vit C, 2.3

mg of Zinc and 12.5mg of Echinacea. It has been pretty overwhelming hearing of

all the supplements some of the postings talk about and how often during the day

the kids have to take them. We aren't interested (and can't because of not being

with our son all day-he's in daycare and school) in having our son take

something several times a day. Is it possible to put him on a regimen of

curcumin and ginkgo once or maybe twice a day? Or is that not going to be worth

it? What dosage do we give him? We live in the Northwest Suburbs of Chicago. Is

there a doctor/expert/nutritionist in our area that can help guide us? Is there

one or two websites/books/etc. that we can look to for help with this?

Thank you very much for any guidance.

Sincerely,

Barb

>

> Hi everyone- I am a mother to a 7 year old girl with DS living in Maine. I

> have been reading your postings regarding curcumin and to be honest, I am

> completely overwhelmed. I have tried to read the research online and have

> tried to read the archives of this group but I'm on overload. Truly. Yet I

> really, really want to gain info. and help our daughter.

>

> Is there anyone that is able to give me the Cliff notes on this (dosages,

> other supplements, research)? I would truly appreciate your help. It feels

> scary to provide my daughter with supplements based on what I'm reading

> online, not knowing if I can trust my spotty understanding.

>

> Many, many thanks.

>

> Missy

>

> =

>

> No virus found in this incoming message.

>

> Checked by AVG - www.avg.com

>

> Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

> 07:33:00

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

> 07:33:00

>

December 9, 2009

To Barb and anyone else here who is interested in pursuing supplementation with

ginkgo biloba, Longvida curcumin, fatty acids, etc.

If you don't have a lot of time to research and feel confused, that's quite

understandable. I would suggest that you call International Nutrition, Inc. at

1- and ask for help. They sell a variety of ginkgo biloba products,

Longvida curcumin and good quality DHA products and will be glad to assist you.

Dr. Leichtman is suggesting 2.2 mg/lb. of ginkgo biloba is extract form whereas

Cody suggests 2.5 mg/lb. minimum. Start low and work up. If your child

doesn't swallow pills, then the folks at International Nutrition should be able

to help you with dosage and different varieties of liquid ginkgo biloba. Be

aware the ginkgo tastes bad. That is one of the joys of getting your child to

swallow pills.

As far as Longvida curcumin and dosage, data is still being accumulated. It

appears to be very safe and your child would probably benefit immensely with a

dosage up to 2000 mg daily, all at one time at night. It can be mixed with

applesause, yogurt, etc. I have not purchased this product yet, but am told

that taste is not an issue.

The ginkgo biloba should be given all at one time, preferably in the

morning/early part of the day.

As far as fatty acids, I would definately add them as well. The folks at

International Nutrition will not push you to buy products that you don't want.

They will be happy to assist you with your needs and suggest dosages, times of

day - given your child's weight and age.

Please run all this by your Dr. to make sure that he is in agreement with adding

these supplements to your child's protocol.

Seriously, I strongly suggest working with International Nutrition. They are

very helpful.

Marsha

> >

> > Hi everyone- I am a mother to a 7 year old girl with DS living in Maine. I

> > have been reading your postings regarding curcumin and to be honest, I am

> > completely overwhelmed. I have tried to read the research online and have

> > tried to read the archives of this group but I'm on overload. Truly. Yet I

> > really, really want to gain info. and help our daughter.

> >

> > Is there anyone that is able to give me the Cliff notes on this (dosages,

> > other supplements, research)? I would truly appreciate your help. It feels

> > scary to provide my daughter with supplements based on what I'm reading

> > online, not knowing if I can trust my spotty understanding.

> >

> > Many, many thanks.

> >

> > Missy

> >

> > =

> >

> > No virus found in this incoming message.

> >

> > Checked by AVG - www.avg.com

> >

> > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

> > 07:33:00

> >

> > No virus found in this incoming message.

> > Checked by AVG - www.avg.com

> > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

> > 07:33:00

> >

>

December 9, 2009

Barb and others,

To further clarify:

Ginkgo biloba extract comes in capsules/tablets.

The dosage stated at 2.2 mg/lb (or 2.5 mg/lb) refers to extract only.

The dosage needed for liquid ginkgo biloba is different.

Again, call International Nutrition at 1- and ask for help. They

will be glad to assist you.

Barb, I referred to the dosage of 2000 mg for your child. That would be based

upon his weight and I also took into consideration the dosage that Qadoshyah is

using for her brother which I think is similiar if not the same. For those of

you with children/adults that weigh more, these supplement are weight sensitive

as are all drugs and you would need more to get the results desired.

With all of these supplements, please start slow and remember that they are

considered alternative therapy and have not gone through rigorous clinical

trials for treatment for Down syndrome.

For some reason, I'm not able to post a link right now. The website is

www.nutrivene.com.

Marsha

> > >

> > > Hi everyone- I am a mother to a 7 year old girl with DS living in Maine.

I

> > > have been reading your postings regarding curcumin and to be honest, I am

> > > completely overwhelmed. I have tried to read the research online and have

> > > tried to read the archives of this group but I'm on overload. Truly. Yet

I

> > > really, really want to gain info. and help our daughter.

> > >

> > > Is there anyone that is able to give me the Cliff notes on this (dosages,

> > > other supplements, research)? I would truly appreciate your help. It

feels

> > > scary to provide my daughter with supplements based on what I'm reading

> > > online, not knowing if I can trust my spotty understanding.

> > >

> > > Many, many thanks.

> > >

> > > Missy

> > >

> > > =

> > >

> > > No virus found in this incoming message.

> > >

> > > Checked by AVG - www.avg.com

> > >

> > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

> > > 07:33:00

> > >

> > > No virus found in this incoming message.

> > > Checked by AVG - www.avg.com

> > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

> > > 07:33:00

> > >

> >

>

December 9, 2009

Yet more information:

As these products are not standardized as drugs are by the FDA, we as consumers

need to be very careful and cautious. The quality of these supplements can

differ greatly. That is why, Barb and others, I would not advise you to just

run to Target or your local Rite-Aid and pick up the cheapest brand. Find a

brand that works for you and your child that is effective and safe. Start with

International Nutrition (third time I've said that) as they don't carry unsafe

ineffective brands of ginkgo biloba. If something is not working for consumers,

they'll drop it. Get comfortable with what you're doing first. If you can get

the product cheaper elsewhere later on, that's fine. Start with them first. I

think that it will be much safer and more effective for you and your child.

Marsha

> > > >

> > > > Hi everyone- I am a mother to a 7 year old girl with DS living in Maine.

I

> > > > have been reading your postings regarding curcumin and to be honest, I

am

> > > > completely overwhelmed. I have tried to read the research online and

have

> > > > tried to read the archives of this group but I'm on overload. Truly.

Yet I

> > > > really, really want to gain info. and help our daughter.

> > > >

> > > > Is there anyone that is able to give me the Cliff notes on this

(dosages,

> > > > other supplements, research)? I would truly appreciate your help. It

feels

> > > > scary to provide my daughter with supplements based on what I'm reading

> > > > online, not knowing if I can trust my spotty understanding.

> > > >

> > > > Many, many thanks.

> > > >

> > > > Missy

> > > >

> > > > =

> > > >

> > > > No virus found in this incoming message.

> > > >

> > > > Checked by AVG - www.avg.com

> > > >

> > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date:

12/02/09

> > > > 07:33:00

> > > >

> > > > No virus found in this incoming message.

> > > > Checked by AVG - www.avg.com

> > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date:

12/02/09

> > > > 07:33:00

> > > >

> > >

> >

>

December 9, 2009

Dear Marsha,

Prior to starting on the CM protocol - which we are following successfully - I called Int Nutrition and they sent me home a package with samples of drugs. I was overwhelmed by so many supplements and particularly not impressed with piracetam - which I had read that was proved not to be beneficial.

I then decided to start on ginkgo, the other supplements recommended by CM and finally, after finding a great psychiatrist with experience on prozac with children, started fluoxetine and focalin.

I have been reading about Curcumin and the other recent researches. I am not yet convinced we should try it with , and would love to hear of anyone who is taking both things - curcumin and fluoxetine. Do you know anyone?

Pat--- Em qua, 9/12/09, steve_scheitlin escreveu:

De: steve_scheitlin Assunto: [DownSyndromeInfoExchange] Re: curcumin, etc.Para: DownSyndromeInfoExchange Data: Quarta-feira, 9 de Dezembro de 2009, 16:47

Barb and others,To further clarify:Ginkgo biloba extract comes in capsules/tablets.The dosage stated at 2.2 mg/lb (or 2.5 mg/lb) refers to extract only.The dosage needed for liquid ginkgo biloba is different.Again, call International Nutrition at 1- and ask for help. They will be glad to assist you.Barb, I referred to the dosage of 2000 mg for your child. That would be based upon his weight and I also took into consideration the dosage that Qadoshyah is using for her brother which I think is similiar if not the same. For those of you with children/adults that weigh more, these supplement are weight sensitive as are all drugs and you would need more to get the results desired.With all of these supplements, please start slow and remember that they are considered alternative therapy and have not gone through rigorous clinical trials for treatment for Down syndrome.For some reason, I'm

not able to post a link right now. The website is www.nutrivene. com.Marsha > > > > > > > > > > > >

> > > > > > Hi everyone- I am a mother to a 7 year old girl with DS living in Maine. I> > > have been reading your postings regarding curcumin and to be honest, I am> > > completely overwhelmed. I have tried to read the research online and have> > > tried to read the archives of this group but I'm on overload. Truly. Yet I> > > really, really want to gain info. and help our daughter.> > > > > > > > > > > > Is there anyone that is able to give me the Cliff notes on this (dosages,> > > other supplements, research)? I would truly appreciate your help. It feels> > > scary to provide my daughter with supplements based on what I'm reading> > > online, not knowing if I can trust my spotty understanding.> > > > > > > > > > > > Many, many

thanks.> > > > > > > > > > > > Missy> > > > > > > > > > > > > > > > > > = > > > > > > No virus found in this incoming message.> > > > > > > > > Checked by AVG - www.avg.com> > > > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09> > > 07:33:00> > > > > > > > > > > > > > > > > > No virus found in this incoming message.> > > Checked by AVG - www.avg.com> > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09> > > 07:33:00> > >> >>

Veja quais sÃ£o os assuntos do momento no Yahoo! + Buscados: Top 10 - Celebridades - MÃºsica - Esportes

December 9, 2009

Cody and others are using Longvida curcumin. To my knowledge, they are

not using real high doses.

As far as my experience with Int'l Nutrition, I would call and ask questions

about their various supplements, experiences of other parents, dosages of

certain products and they were always glad to assist me. I agree with you -

they carry an incredible amount of products now and you have to know what you're

interested in before calling. Still, it is a good place to get information.

Folks, start there and come back if you have more questions.

Qadoshyah has written a book that is available through the Amazon website that

is quite informative also. It is called " What you Can Do. " It looks like its

out of print through them at this point.

8 & s=books & qid=1260412725 & sr=8-1

Marsha

> > > >

> > > > Hi everyone- I am a mother to a 7 year old girl with DS living in Maine.

I

> > > > have been reading your postings regarding curcumin and to be honest, I

am

> > > > completely overwhelmed. I have tried to read the research online and

have

> > > > tried to read the archives of this group but I'm on overload. Truly. Yet

I

> > > > really, really want to gain info. and help our daughter.

> > > >

> > > > Is there anyone that is able to give me the Cliff notes on this

(dosages,

> > > > other supplements, research)? I would truly appreciate your help. It

feels

> > > > scary to provide my daughter with supplements based on what I'm reading

> > > > online, not knowing if I can trust my spotty understanding.

> > > >

> > > > Many, many thanks.

> > > >

> > > > Missy

> > > >

> > > > =

> > > >

> > > > No virus found in this incoming message.

> > > >

> > > > Checked by AVG - www.avg.com

> > > >

> > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date:

12/02/09

> > > > 07:33:00

> > > >

> > > > No virus found in this incoming message.

> > > > Checked by AVG - www.avg.com

> > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date:

12/02/09

> > > > 07:33:00

> > > >

> > >

> >

>

________________________________________________________________________________\

____

> Veja quais sÃ£o os assuntos do momento no Yahoo! +Buscados

> http://br.maisbuscados.yahoo.com

>

December 10, 2009

Amazon

puts out of print on some of the self-publish books at times. I will have to

see if I can get that fixed.

But,

Down Syndrome: What You CAN Do can be bought from: http://stores.lulu.com/gotdownsyndrome

Qadoshyah

Blog

Book

- Down Syndrome: What You CAN Do

Buy

Leave

a comment at ~ www.squidoo.com/gotdownsyndrome

From:

[mailto:DownSyndromeInfoExchange ] On Behalf Of steve_scheitlin

Sent: Wednesday, December 09, 2009 8:40 PM

http://www.amazon.com/Down-Syndrome-What-You-CAN/dp/0615259162/ref=sr_1_1?ie=UTF8 & s=books & qid=1260412725 & sr=8-1

Subject: [DownSyndromeInfoExchange] Re: curcumin, etc.

Cody and others are using Longvida

curcumin. To my knowledge, they are not using real high doses.

As far as my experience with Int'l Nutrition, I would call and ask questions

about their various supplements, experiences of other parents, dosages of

certain products and they were always glad to assist me. I agree with you -

they carry an incredible amount of products now and you have to know what

you're interested in before calling. Still, it is a good place to get

information.

Folks, start there and come back if you have more questions.

Qadoshyah has written a book that is available through the Amazon website that

is quite informative also. It is called " What you Can Do. " It looks

like its out of print through them at this point.

Marsha

> > > >

> > > > Hi everyone- I am a mother to a 7 year old girl with DS

living in Maine. I

> > > > have been reading your postings regarding curcumin and to

be honest, I am

> > > > completely overwhelmed. I have tried to read the research

online and have

> > > > tried to read the archives of this group but I'm on

overload. Truly. Yet I

> > > > really, really want to gain info. and help our daughter.

> > > >

> > > > Is there anyone that is able to give me the Cliff notes on

this (dosages,

> > > > other supplements, research)? I would truly appreciate your

help. It feels

> > > > scary to provide my daughter with supplements based on what

I'm reading

> > > > online, not knowing if I can trust my spotty understanding.

> > > >

> > > > Many, many thanks.

> > > >

> > > > Missy

> > > >

> > > > =

> > > >

> > > > No virus found in this incoming message.

> > > >

> > > > Checked by AVG - www.avg.com

> > > >

> > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release

Date: 12/02/09

> > > > 07:33:00

> > > >

> > > > No virus found in this incoming message.

> > > > Checked by AVG - www.avg.com

> > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release

Date: 12/02/09

> > > > 07:33:00

> > > >

> > >

> >

>

> __________________________________________________________

> Veja quais sÃ£o os assuntos do momento no Yahoo! +Buscados

> http://br.maisbuscados.yahoo.com

>

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.426 / Virus Database: 270.14.102/2556 - Release Date: 12/10/09

07:36:00

December 10, 2009

My

brother, Osiyyah, is 4 ½ years old and is taking 2000mgs/day of Longvida

Curcumin. We started at 500mgs, went up to 1000, then up to 1500 and then

finally up to 2000mgs.

2000mgs

is a good starting dose and we have seen significant changes in Osiyyah at this

dosage. I would like to increase the dosage to 3000 or 3500mgs, but that isn’t

in our budget at the moment. For older children or adults a higher dosage would

be necessary for optimum potential.

It

is only necessary to give LC once a day – preferably at night.

Qadoshyah

Blog

Book

- Down Syndrome: What You CAN Do

Buy

Leave

a comment at ~ www.squidoo.com/gotdownsyndrome

From:

[mailto:DownSyndromeInfoExchange ] On Behalf Of b_lach

Sent: Tuesday, December 08, 2009 9:11 PM

http://www.nutrivene.com/

Subject: [DownSyndromeInfoExchange] Re: curcumin, etc.

Hello,

We have a 4 year old son with DS and are interested in possibly starting him on

curcumin and ginkgo biloba. I think the first and most basic question we have

is---where to start!!

We have read the recent postings as well as tried to research on our own but

are very confused. A lot of the postings have several abbreviations as well as

some medical terms we do not understand. With both of us working full-time,

outside the home, we are not able to research all the words that we don't know.

Help! I think what we're most interested in is where to start. Our son is 33

pounds and has no medical issues. The only medicine he takes is Nasonex for

allergies. He takes a daily multivitamin along with another vitamin with 80 mg

of Vit C, 2.3 mg of Zinc and 12.5mg of Echinacea. It has been pretty

overwhelming hearing of all the supplements some of the postings talk about and

how often during the day the kids have to take them. We aren't interested (and

can't because of not being with our son all day-he's in daycare and school) in

having our son take something several times a day. Is it possible to put him on

a regimen of curcumin and ginkgo once or maybe twice a day? Or is that not

going to be worth it? What dosage do we give him? We live in the Northwest

Suburbs of Chicago. Is there a doctor/expert/nutritionist in our area that can

help guide us? Is there one or two websites/books/etc. that we can look to for

help with this?

Thank you very much for any guidance.

Sincerely,

Barb

>

> Hi everyone- I am a mother to a 7 year old girl with DS living in Maine. I

> have been reading your postings regarding curcumin and to be honest, I am

> completely overwhelmed. I have tried to read the research online and have

> tried to read the archives of this group but I'm on overload. Truly. Yet I

> really, really want to gain info. and help our daughter.

>

> Is there anyone that is able to give me the Cliff notes on this (dosages,

> other supplements, research)? I would truly appreciate your help. It feels

> scary to provide my daughter with supplements based on what I'm reading

> online, not knowing if I can trust my spotty understanding.

>

> Many, many thanks.

>

> Missy

>

> =

>

> No virus found in this incoming message.

>

> Checked by AVG - www.avg.com

>

> Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

> 07:33:00

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

> 07:33:00

>

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 8.5.426 / Virus Database: 270.14.98/2552 - Release Date: 12/08/09

19:54:00

December 16, 2009

Hello,

This was such great information that we are planning to use International

Nutrition as a place to start for information regarding supplements for our son.

We were wondering if anyone else has used the company International Nutrition,

Inc. for supplements for their children. If so, what types of experiences have

you had? Do they have a website, or only a phone number? We tried to look up the

name on the web, but don't find them.

Also, we keep seeing 'Longvida' used in front of curcumin. Is that just a brand

name, or is it a type of curcumin?

We also see the initials CM used in some of the emails in this thread. Is that

an abbreviation for curcumin, or does it mean something else? Pat mentioned it

in a post; " Prior to starting on the CM protocol " and " I then decided to

start on ginkgo, the other supplements recommended by CM "

Thank you for your input and help.

Sincerely,

Barb

> > >

> > > Hi everyone- I am a mother to a 7 year old girl with DS living in Maine.

I

> > > have been reading your postings regarding curcumin and to be honest, I am

> > > completely overwhelmed. I have tried to read the research online and have

> > > tried to read the archives of this group but I'm on overload. Truly. Yet

I

> > > really, really want to gain info. and help our daughter.

> > >

> > > Is there anyone that is able to give me the Cliff notes on this (dosages,

> > > other supplements, research)? I would truly appreciate your help. It

feels

> > > scary to provide my daughter with supplements based on what I'm reading

> > > online, not knowing if I can trust my spotty understanding.

> > >

> > > Many, many thanks.

> > >

> > > Missy

> > >

> > > =

> > >

> > > No virus found in this incoming message.

> > >

> > > Checked by AVG - www.avg.com

> > >

> > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

> > > 07:33:00

> > >

> > > No virus found in this incoming message.

> > > Checked by AVG - www.avg.com

> > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date: 12/02/09

> > > 07:33:00

> > >

> >

>

December 16, 2009

Barb,

There have always been " alternative therapies " for people with Down syndrome.

Until there is an approved FDA medical treatment, alternative therapies will

continue to be used by some.

Targeted Nutrition is one much alternative therapy.

That is where Int'l Nutrition comes in and here is their website:

In addition to Nutrivene, a brand of vitamins formulated for people with Down

syndrome, they also sell ginkgo, Longvida curcumin, etc.

They not only offer products to people with Down syndrome, but also to people

with autism and other disorders.

After the genome project was finished, the Down Syndrome Research & Treatment

Foundation was formed to generate research money for targeted cognitive

research.

Cody, mother to Neal -12, served on the Foundation board and as a dentist

is fairly knowledgeable about medicine. After years of effort, she has created

a protocol based on use of drugs, herbs and supplements. This is the CMP or

Changing Minds Protocol that you've seen referenced. Her protocol is based upon

fairly recent scientific research. There is much to read here, it takes a lot

of time.

has brought much hope to the DS world. It is because of her efforts that

many are successfully using ginkgo biloba for their children.

http://changingmindsfoundation.org/home.html

The drugs that form a part of the protocol are Prozac and Focalin-XR. Many

parents do not want to use Prozac, many would rather use natural supplements or

at least wait until an FDA approved treatment is in place. That's where the

Longvida curcumin comes in. It is a brand name and its not even out on the open

market yet. In fact, Int'l Nutrition is the only place to buy it at this time

other the Verdue Sciences, the manufacturing company.

Prozac increases the cholinergic neurons in the brain. In looking for a natural

supplement, it seemed that curcumin would do the same thing (increase

neurogenesis) - only it was not bioavailable. That is - until Longvida

curcumin. The UCLA scientists seem to have overcome this problem.

Here is where we first learned about this product:

http://addiandcassi.com/the-real-curcumin-for-treating-alzheimer%E2%80%99s-parki\

nson%E2%80%99s-and-other-brain-disease/

Since the Changing Minds Protocol seems to have been fairly successful in

increasing cognition, many of us have looked to the protocol and embraced just

parts of it, all of it, or look for ways to substitute herbs for the drugs.

Longvida curcumin seems to be a substitute in higher doses for the cognitive

benefits of Prozac. There is a lot of differences, though. For one thing, its

expensive. There are a lot of amazing health benefits, though. Some use

Longvida curcumin in lower doses along with the Prozac.

Remember that all of this is alternative treatment, there have been no double

blind clinical trials of these therapies and I guess that is the " gold

standard " . Unfortunately, these clinical trails cost money. The lack of the

clinical trial doesn't make a treatment unsafe. I love the NDSS's position on

alternative therapy. It is well written.

http://www.ndss.org/index.php?option=com_content & view=article & id=76 & Itemid=96

In going through all this, you have to decide as a family what position you'll

take. It takes effort and money to give these supplements to your child and you

have to be committed to whatever you decide to do.

I know this is a lot of info., but I've tried to create a timeline.

Marsha

> > > >

> > > > Hi everyone- I am a mother to a 7 year old girl with DS living in Maine.

I

> > > > have been reading your postings regarding curcumin and to be honest, I

am

> > > > completely overwhelmed. I have tried to read the research online and

have

> > > > tried to read the archives of this group but I'm on overload. Truly.

Yet I

> > > > really, really want to gain info. and help our daughter.

> > > >

> > > > Is there anyone that is able to give me the Cliff notes on this

(dosages,

> > > > other supplements, research)? I would truly appreciate your help. It

feels

> > > > scary to provide my daughter with supplements based on what I'm reading

> > > > online, not knowing if I can trust my spotty understanding.

> > > >

> > > > Many, many thanks.

> > > >

> > > > Missy

> > > >

> > > > =

> > > >

> > > > No virus found in this incoming message.

> > > >

> > > > Checked by AVG - www.avg.com

> > > >

> > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date:

12/02/09

> > > > 07:33:00

> > > >

> > > > No virus found in this incoming message.

> > > > Checked by AVG - www.avg.com

> > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date:

12/02/09

> > > > 07:33:00

> > > >

> > >

> >

>

December 17, 2009

WOW, thank you Marsha for this timeline, sure helps me to understand and will be

a great aid when introducing all info to my husband to discuss including LC to

our current regimen. Grateful for all the time/effort and help with info this

group shares!! Margie

> > > > >

> > > > > Hi everyone- I am a mother to a 7 year old girl with DS living in

Maine. I

> > > > > have been reading your postings regarding curcumin and to be honest, I

am

> > > > > completely overwhelmed. I have tried to read the research online and

have

> > > > > tried to read the archives of this group but I'm on overload. Truly.

Yet I

> > > > > really, really want to gain info. and help our daughter.

> > > > >

> > > > > Is there anyone that is able to give me the Cliff notes on this

(dosages,

> > > > > other supplements, research)? I would truly appreciate your help. It

feels

> > > > > scary to provide my daughter with supplements based on what I'm

reading

> > > > > online, not knowing if I can trust my spotty understanding.

> > > > >

> > > > > Many, many thanks.

> > > > >

> > > > > Missy

> > > > >

> > > > > =

> > > > >

> > > > > No virus found in this incoming message.

> > > > >

> > > > > Checked by AVG - www.avg.com

> > > > >

> > > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date:

12/02/09

> > > > > 07:33:00

> > > > >

> > > > > No virus found in this incoming message.

> > > > > Checked by AVG - www.avg.com

> > > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date:

12/02/09

> > > > > 07:33:00

> > > > >

> > > >

> > >

> >

>

December 18, 2009

Wow Marsha thanks for the long note on Curcumin and such.

We started Oliivia on a 10 mg prozac dose in April 2009 at bedtime. No side effects at first, but now we are seeing a drastic weight gain (15 pounds from last year) and puffy face. We have decided to take her off by tapering her dose over a month and starting her on Curcumin. This is not to say that others may choose prozac, we can actually say her cognition and awareness really improved and there were no other side effects. The weight gain is not acceptable to me and the puffy face is a sign of edema in her tissues.

just my 2 cents.

joan

December 18, 2009

Joan,

I would prefer to do curcumin, but am weighing it all out. Part of it is cost,

part of it of that I've heard that if you stop, you may not get the same results

again. I would be very interested in how Olivia does on curcumin. 's

weight is unacceptable, but I'm not going to blame Prozac for it. We had issues

prior to starting. No side affects here either, speech has really blossomed.

Keep us posted on differences between results you see with curcumin vs. Prozac.

Marsha

>

> Wow Marsha thanks for the long note on Curcumin and such.

>

> We started Oliivia on a 10 mg prozac dose in April 2009 at bedtime. No side

> effects at first, but now we are seeing a drastic weight gain (15 pounds

> from last year) and puffy face. We have decided to take her off by tapering

> her dose over a month and starting her on Curcumin. This is not to say that

> others may choose prozac, we can actually say her cognition and awareness

> really improved and there were no other side effects. The weight gain is not

> acceptable to me and the puffy face is a sign of edema in her tissues.

>

> just my 2 cents.

> joan

>

December 19, 2009

I don't have any info.

> >

> > Wow Marsha thanks for the long note on Curcumin and such.

> >

> > We started Oliivia on a 10 mg prozac dose in April 2009 at bedtime. No

side

> > effects at first, but now we are seeing a drastic weight gain (15 pounds

> > from last year) and puffy face. We have decided to take her off by

tapering

> > her dose over a month and starting her on Curcumin. This is not to say

that

> > others may choose prozac, we can actually say her cognition and awareness

> > really improved and there were no other side effects. The weight gain is

not

> > acceptable to me and the puffy face is a sign of edema in her tissues.

> >

> > just my 2 cents.

> > joan

> >

>

January 3, 2010

Qadoshah's book for download is just 5 smackers!! (5 USD) the best five bucks

I ever spent! Now when i have a question about something I do a search through

the document, and up it comes.

<http://stores.lulu.com/gotdownsyndrome>

THANKS for making this available in this format...for us overseas folks

especially!!

Liora in Beijing

> > > > >

> > > > > Hi everyone- I am a mother to a 7 year old girl with DS living in

> Maine. I

> > > > > have been reading your postings regarding curcumin and to be honest,

> I am

> > > > > completely overwhelmed. I have tried to read the research online and

> have

> > > > > tried to read the archives of this group but I'm on overload. Truly.

> Yet I

> > > > > really, really want to gain info. and help our daughter.

> > > > >

> > > > > Is there anyone that is able to give me the Cliff notes on this

> (dosages,

> > > > > other supplements, research)? I would truly appreciate your help. It

> feels

> > > > > scary to provide my daughter with supplements based on what I'm

> reading

> > > > > online, not knowing if I can trust my spotty understanding.

> > > > >

> > > > > Many, many thanks.

> > > > >

> > > > > Missy

> > > > >

> > > > > =

> > > > >

> > > > > No virus found in this incoming message.

> > > > >

> > > > > Checked by AVG - www.avg.com

> > > > >

> > > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date:

> 12/02/09

> > > > > 07:33:00

> > > > >

> > > > > No virus found in this incoming message.

> > > > > Checked by AVG - www.avg.com

> > > > > Version: 8.5.426 / Virus Database: 270.14.88/2538 - Release Date:

> 12/02/09

> > > > > 07:33:00

> > > > >

> > > >

> > >

> >

> > __________________________________________________________

> > Veja quais sÃ£o os assuntos do momento no Yahoo! +Buscados

> > http://br.maisbuscados.yahoo.com

> >

>

> No virus found in this incoming message.

> Checked by AVG - www.avg.com

> Version: 8.5.426 / Virus Database: 270.14.102/2556 - Release Date: 12/10/09

> 07:36:00

>

January 4, 2010

You’re

welcome ! I’m glad it’s been helpful!

Qadoshyah

Blog

Book

- Down Syndrome: What You CAN Do

Buy

Leave

a comment at ~ www.squidoo.com/gotdownsyndrome

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of lioracc

Sent: Sunday, January 03, 2010 10:32 PM