RE: SCD& Changing Minds Statement

November 13, 2008

ï»¿

I've seen the recommendation for 2.5 mg/lb of body weight, and also this, from Riverbend's site:

Recommended dosage, once a day, in the morning:Â²

60 mg for children 6 to 12 years of age. 19Â¢/day

120 mg for patients over 12 years of age. 39Â¢/day

180 mg is the maximum ever.

Ginkgo Biloba should be withdrawn 48 hour prior to surgery; resume one day after surgery.

2. Lawrence G. Leichtman, M.D. FAAP, FACMG

I have dd Tess, age 7, taking 90 mg per day, which is more than the one recommendation, and less than the other, Not sure why, but I've been hesitant to move her to the full 120 mg. tablet. I definitely see some changes in her, but I'm not clear that they are strictly from the Gingko, since we started it shortly after starting 1st grade just this year. And her 1st grade team is working SO WELL with one another and the bar is being raised for her, so I'm not positive. But right now, I'm happy enough with the possible results to keep going with Tess.

One addition, the Chinese doctor who I spoke to about Gingko use in kids said that, while she wasn't aware of the protocol or use with children with Ds, she said to be on the cautious side, don't ever just discontinue use...be sure to wean her off if we're to stop using it because of its blood-thinning properties.

Kathi

From: DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ] On Behalf Of CodySent: Thursday, November 13, 2008 12:22 PMTo: DownSyndromeInfoExchange Subject: RE: *RE: *Re: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

A good dose to start is 120 mg/day.

From: Carol in IL <ps1272000yahoo (DOT) com>Subject: Re: *Re: [DownSyndromeInfoEx change] SCD & Changing Minds StatementTo: DownSyndromeInfoExc hange@yahoogroup s.comDate: Wednesday, November 12, 2008, 9:09 AM

I could make the same claims about functionaly increase in with regards to SCD, exercise, replacing all bad fats with Omega 3's and lots of new experiences. .....and it's all drug free and natural. :-)She has achieved through diet and life style, what you all are calling success with the CM protocol. What's my point? No one knows for sure without some type of study.Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/http://downsyndrome infoexchange. blogspot. com/Listen to oldest dd's music http://www.myspace. com/vennamusic

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November 13, 2008

I am having trouble figuring how much to give Tianna. She is 28 mos

and weighs 23 pounds. I have Honeycomb Industries Ginko Biloba which

says that 1 dropper is a serving with 1000mg of Ginko Biloba Extract.

I would appreciate any advice.

Also is anyone else on this list giving it to their 2 year old?

Thanks.

>

> From: Carol in IL <ps1272000yahoo (DOT) com>

> Subject: Re: *Re: [DownSyndromeInfoEx change] SCD & Changing Minds

Statement

> To: DownSyndromeInfoExc hange@yahoogroup s.com

> Date: Wednesday, November 12, 2008, 9:09 AM

>

> I could make the same claims about functionaly increase in

with regards to SCD, exercise, replacing all bad fats with

Omega 3's and lots of new experiences. .....

>

> and it's all drug free and natural. :-)

>

> She has achieved through diet and life style, what you all are

calling success with the CM protocol.

>

> What's my point? No one knows for sure without some type of study.

>

> Carol in IL

> Mom to , 8 DS

>

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

>

> Join our Down Syndrome information group -

>

> http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/

> http://downsyndrome

<http://downsyndromeinfoexchange.blogspot.com/> infoexchange.

blogspot. com/

>

> Listen to oldest dd's music http://www.myspace.

<http://www.myspace.com/vennamusic> com/vennamusic

>

> _____

>

> avast! Antivirus <http://www.avast.com/> : Inbound message clean.

> Virus Database (VPS): 081112-0, 11/12/2008

> Tested on: 11/12/2008 5:48:46 PM

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> _____

>

> avast! <http://www.avast.com/> Antivirus: Inbound message clean.

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November 14, 2008

Kathy,

I started on just 30 mg Ginkgo, several times, but never kept it up for more than a week or two. It seems like he'd always get a cold and then I'd be adding more stuff to the supplements he already takes, trying to keep the cold from going into asthmatic bronchitis. I regularly give him NVD and DHA Junior and Selenium and Glutathione in applesauce or hot cereal at breakfast. Then, when he has a cold, I add Echinacea and Clear Lungs (an herbal formula). It just becomes too time-consuming to add so many different things. Plus, I wonder if dumping all that into his stomach at one time really does him all the good it's supposed to. How well does he digest and assimilate the supplements? He almost always has loose stools that fill his diaper. He may not move his bowels for a day or two, and then he will move them 3 or 4 times in one day!

So, I end up dropping the Ginkgo in favor of supplements to support his immune system or aid his respiratory system. It just seems more important to get him healthy than to try to make him smarter. (more politically correct: enhance his cognitive abilities)

And then its blood thinning property is another concern. has an uncorrected CHD. He has Ebstein's Anomaly, which is very rare in DS. His tricuspid valve is malformed, elongated, and displaced taking up 2/3 of his right ventricle. His differently designed heart is working just fine for him right now. It is amazing how his VSD is just the right size and placement that it's actually working in his favor. His small right ventricle would not be able to provide adequate blood flow to his lungs, but the flow from the VSD joins with the small amount that the right ventricle can pump, making adequate blood flow to the lungs! But if his blood were thinner, what effect might that have on his heart? I suppose his cardiologist would be the one to ask. I doubt that she would want to risk having on Ginkgo. And his pediatrician thinks we are wasting our

money with TNI and supplements; he surely would not be in favor of Ginkgo. So, maybe it's for the best that I've never managed to get Ginkgo established as part of 's daily regimen.

GOD's BEST!

From: Carol in IL <ps1272000yahoo (DOT) com>Subject: Re: *Re: [DownSyndromeInfoEx change] SCD & Changing Minds StatementTo: DownSyndromeInfoExc hange@yahoogroup s.comDate: Wednesday, November 12, 2008, 9:09 AM

I could make the same claims about functionaly increase in with regards to SCD, exercise, replacing all bad fats with Omega 3's and lots of new experiences. .....and it's all drug free and natural. :-)She has achieved through diet and life style, what you all are calling success with the CM protocol. What's my point? No one knows for sure without some type of study.Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/http://downsyndrome infoexchange. blogspot. com/Listen to oldest dd's music http://www.myspace. com/vennamusic

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November 14, 2008

Hi -

I can certainly understand your concerns..and I didnâ€™t start

Danny on gingko until I checked it out with his doctor.

I agree with you..it is much more important to me to be cautious

and safeguard Dannyâ€™s health as much as possible (and I donâ€™t mean this as

criticism of anyone..maybe I am just a bigger chicken when it comes to this

stuff than other people;-) the basic tenet of medicine is â€˜First, do no harmâ€™â€¦.Danny

functions well,â€¦he has a good lifeâ€¦would he do better if his IQ got a little

boost? Probably soâ€¦and I would like to see that happen for him. But I have to

weigh the benefits against the unknowns, and I just canâ€™t justify the risks at

this point. It may turn out that the protocol is rock solid safeâ€¦.hope that it

does. But until then, I will just wait and see. Others may have a different

viewpoint, and that is their choice.I am not criticizing anyone for trying the

protocol if they think it is the right thing for *their* childâ€¦but I am

not going to give it to Danny at this point just because other people are

trying it..and I donâ€™t expect other parents to take their kid off/not start because

of my comments on thisâ€¦we each have to work with our own doctors and make the

decision for our own children.

KathyR

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Keener

Sent: Friday, November 14, 2008 11:15 AM

To: DownSyndromeInfoExchange

Subject: RE: [DownSyndromeInfoExchange] SCD & Changing Minds

Statement

Kathy,

I started on just 30 mg Ginkgo, several times, but

never kept it up for more than a week or two. It seems like he'd

always get a cold and then I'd be adding more stuff to the

supplements he already takes, trying to keep the cold from going

into asthmatic bronchitis. I regularly give him NVD and DHA Junior and

Selenium and Glutathione in applesauce or hot cereal at

breakfast. Then, when he has a cold, I add Echinacea and Clear Lungs

(an herbal formula). It just becomes too time-consuming to add so many

different things. Plus, I wonder if dumping all that into his stomach

at one time really does him all the good it's supposed to. How well

does he digest and assimilate the supplements? He almost always has

loose stools that fill his diaper. He may not move his bowels for a day

or two, and then he will move them 3 or 4 times in one day!

So, I end up dropping the Ginkgo in favor of

supplements to support his immune system or aid his respiratory

system. It just seems more important to get him healthy than to try to

make him smarter. (more politically correct: enhance his cognitive

abilities)

And then its blood thinning property is another

concern. has an uncorrected CHD. He has Ebstein's Anomaly,

which is very rare in DS. His tricuspid valve is malformed,

elongated, and displaced taking up 2/3 of his right

ventricle. His differently designed heart is working just fine for him

right now. It is amazing how his VSD is just the right size and

placement that it's actually working in his favor. His small right

ventricle would not be able to provide adequate blood flow to his lungs, but

the flow from the VSD joins with the small amount that the right ventricle

can pump, making adequate blood flow to the lungs! But if his blood

were thinner, what effect might that have on his heart? I suppose his

cardiologist would be the one to ask. I doubt that she would want to

risk having on Ginkgo. And his pediatrician thinks we are

wasting our money with TNI and supplements; he surely would not be in favor

of Ginkgo. So, maybe it's for the best that I've never managed to

get Ginkgo established as part of 's daily regimen.

GOD's BEST!

From: Carol in IL <ps1272000yahoo (DOT) com>

Subject: Re: *Re: [DownSyndromeInfoEx change] SCD & Changing Minds

Statement

To: DownSyndromeInfoExc hange@yahoogroup s.com

Date: Wednesday, November 12, 2008, 9:09 AM

I could make the same claims about functionaly increase in

with regards to SCD, exercise, replacing all bad fats with

Omega 3's and lots of new experiences. .....

and it's all drug free and natural. :-)

She has achieved through diet and life style, what you all are calling

success with the CM protocol.

What's my point? No one knows for sure without some type of study.

Carol in IL

Mom to , 8 DS

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

Â Â Â

Â Â Â Join our Down Syndrome information group -

http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/

http://downsyndrome

infoexchange. blogspot. com/

Listen to oldest dd's music http://www.myspace. com/vennamusic

avast!

Antivirus: Inbound message clean.

Virus Database (VPS): 081112-0, 11/12/2008

Tested on: 11/12/2008 5:48:46 PM

avast!

Antivirus: Inbound message clean.

Virus Database (VPS): 081112-0, 11/12/2008

Tested on: 11/13/2008 11:09:07 AM

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