RE: Down Syndrome Research

[Guest guest]

Three of my boys and I went, and it was so neat to see so many

people at an event to benefit Ds research. The *only* disappointing

thing for me was that Danny and were the only people there with Ds…I

know that several of the Ds groups in the Chicago area were notified that the

event was being held, so it was pretty surprising to me that no one else came

to show their support and appreciation (we live in Indiana, 75 miles from

Chicago, and I thought it was worthwhile going to…our local Ds group sponsored

one of the holes)

I didn’t get to stay to hear Na’eem, but from what

Carol told me about his speech, there is some very exciting research going on.

Terry and the people from Mechanical really worked hard to

make the event happen, and it was fantastic.

KathyR

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Carol in

IL

Sent: Saturday, June 21, 2008 1:32 AM

To: DSIE; Downsheart; downsyndrome

Subject: [DownSyndromeInfoExchange] Down Syndrome Research

On

Wed June 18, Mechanical sponsored it's first Golf Outing to raise money

to support the Down Syndrome Research Foundation. I am happy to

report that it was a success and we plan to do it every year.

My husband is the President and I think it's safe to say that has won

the hearts of many, if not all of the wonderful people who work there and they

really rallied behind our family to make this a success. They l all no doubt

have to be burning the midnight oil to make up for a lost day of work Weds, not

to mention all the time they spent in securing sponsors and golfers!

Besides being privileged by knowing such wonderful people I was also introduced

to Na'eem from DSTRF who came to speak at the dinner. This is one

impressive young man!!!! He's the kind of guy whom I think could do

anything he had a mind to. DSTRF found a gem when they hired him. Everyone

there commented on how clearly he explained the opportunities the DSTRF now has

to improve the lives of people with DS and potentially those with AD and ASD. I

do believe that we will be the first generation to see treatments developed

that WILL help our children! Real treatments that can allow their brains to

function the same as their typical peers. Not everything in DS can be cured,

but to think that would be free be able to do what *she* wants

to do in life is really unbelievable when you stop think about it. Even

if only earning and memory were improved, think of the difference that

would make in the kid's frustration levels! They are also hoping to

unlock and solve the common problem of decline of skills and early onset AD

too.

It's all very, very real and well with in our reach!!!! We always

complain that no one likes to fund research or treatments for kids with DS,

that our kids are always last in line for everything - well here is something

we can get behind that offers concrete solutions to some of the issues our kids

deal with.

Carol in IL

AIM doihavtasay1 GigaTribe doihavtasay

Mom to seven including

, 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and 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/DownSyndromeInfoExchange/

Listen to

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

[Guest guest]

Carol,

What were the specific treatment Na'eem was discussing? What are they targeting first?

Subject: [DownSyndromeInfoExchange] Down Syndrome ResearchTo: "DSIE" <DownSyndromeInfoExchange >, "Downsheart" <Downs-Heart >, "downsyndrome " <downsyndrome >Date: Saturday, June 21, 2008, 5:32 AM

On Wed June 18, Mechanical sponsored it's first Golf Outing to raise money to support the Down Syndrome Research Foundation. I am happy to report that it was a success and we plan to do it every year.My husband is the President and I think it's safe to say that has won the hearts of many, if not all of the wonderful people who work there and they really rallied behind our family to make this a success. They l all no doubt have to be burning the midnight oil to make up for a lost day of work Weds, not to mention all the time they spent in securing sponsors and golfers!Besides being privileged by knowing such wonderful people I was also introduced to Na'eem from DSTRF who came to speak at the dinner. This is one impressive young man!!!! He's the kind of guy whom I think could do anything he had a mind to. DSTRF found a gem when they hired him. Everyone there commented on how clearly he

explained the opportunities the DSTRF now has to improve the lives of people with DS and potentially those with AD and ASD. I do believe that we will be the first generation to see treatments developed that WILL help our children! Real treatments that can allow their brains to function the same as their typical peers. Not everything in DS can be cured, but to think that would be free be able to do what *she* wants to do in life is really unbelievable when you stop think about it. Even if only earning and memory were improved, think of the difference that would make in the kid's frustration levels! They are also hoping to unlock and solve the common problem of decline of skills and early onset AD too. It's all very, very real and well with in our reach!!!! We always complain that no one likes to fund research or treatments for kids with DS, that our kids are always last in line for everything - well here is

something we can get behind that offers concrete solutions to some of the issues our kids deal with.

Carol in IL

AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and 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/

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

[Guest guest]

http://garnerlab.stanford.edu/

Subject: Re: [DownSyndromeInfoExchange] Down Syndrome ResearchTo: DownSyndromeInfoExchange Date: Friday, June 27, 2008, 8:56 PM

Carol,

What's interesting about what Stanford is doing....PZT was used with the DS mice and they tested *smarter* than the regular mice. And after the drug had been stopped, they didn't lose the intelligence.

Now, if they can get the drug company to start manufacturing it again, it may very well be used on humans again. When they used it before, if I'm understanding it, they were using some astronomical dosage like 30-40mg per kilo. What about 1mg per kilo....! The mice were put on 2 mg (I believe) and there were no seizures!!! Exciting news.

What Garner is going to do now is use the protocol that is doing now. The main component with all the promise - ginkgo biloba. It's the bilobalide that is the ticket. We're giving more than the 2.5mg/lb and there's incredible things going on with Martha.

To understand fully GABA receptors and what ginkgo biloba does is almost too much for words. Those receptors are throughout the body and once they start getting taken care of, then a lot of issues go away.

For instance, we don't use Nutrivene D anymore because it was actually causing problems. Martha is now able to absorb what she needs from food like a "typical" child and the TNI is too much of an overload. We don't need the digestive enzymes either.

Keep an eye on Garner and Stanford.... ...he's the one to watch. Not Mobley.

Tina

[Guest guest]

Carol,

What's interesting about what Stanford is doing....PZT was used with the DS mice and they tested *smarter* than the regular mice. And after the drug had been stopped, they didn't lose the intelligence.

Now, if they can get the drug company to start manufacturing it again, it may very well be used on humans again. When they used it before, if I'm understanding it, they were using some astronomical dosage like 30-40mg per kilo. What about 1mg per kilo....! The mice were put on 2 mg (I believe) and there were no seizures!!! Exciting news.

What Garner is going to do now is use the protocol that is doing now. The main component with all the promise - ginkgo biloba. It's the bilobalide that is the ticket. We're giving more than the 2.5mg/lb and there's incredible things going on with Martha.

To understand fully GABA receptors and what ginkgo biloba does is almost too much for words. Those receptors are throughout the body and once they start getting taken care of, then a lot of issues go away.

For instance, we don't use Nutrivene D anymore because it was actually causing problems. Martha is now able to absorb what she needs from food like a "typical" child and the TNI is too much of an overload. We don't need the digestive enzymes either.

Keep an eye on Garner and Stanford.......he's the one to watch. Not Mobley.

Tina

[Guest guest]

Tina, Yes! They did out perform the typical mice and kept that edge even when the PZT was stopped!!! That is amazing. It must mean that once the connections are built, they are kept. People with DS have very normal brain structure, it's just the chemicals that are all out of whack. Restore the chemicals and new connections are built. If the gingko is working as the new drug will, then Martha's tone should be improving which would improve her body's ability to digest food. Tone is not a physical issue, it's a brain issue, so the new treatments would improve a lot

more than just cognition- it should improve gross and fine motor, articulation, joint and even breathing caused by floppy airways. It's SO EXCITING!!! Finally real help.I don't believe PZT will ever be used in humans. It was used, then withdrawn due to seizures. It was my understanding that they are looking for new compounds, with the bilobalide from the gingko , being one of the top runners. Once they isolate the active compound, they can make a standardized dose that will bring some fantastic changes. The supplement is like a band aide compared to what they are going to end up with. They are testing 4-5 new compounds and all of them have already passed FDA for other issues and

should not take forever to get into the hands of parents. Since DS is not a one size fits all, I think it's safe to bet that it going to take more than one drug to help everyone.The really wonderful thing about DSTRF is the researchers must share all information with each other- so it's very much a team effort to help people with DS, not really a competition. Garner will build on what Mobley has found. They are all very committed to finding safe compounds, and right now no one feels that PZT or prozac is safe and they are quite concerned about parents using prozac on their own with their children. You can very easily increase serotonin levels with physical exercise, you do not need to take the risk of prozac. They know what the problem is, they know how to fix it, they just need to find the

correct cure that works with out major side effects. They are worried about seizures with both prozac and PZT, and since these guys are committed, and know a whole heck of lot more then me, I will take their word for it and wait until they can test and be more confident in a choice. It's not that far off into the future! The ONLY thing slowing them down is MONEY- you want them to find something..... send money!!! This place is truly our best investment. It's what we have we have dreamed of having, let's get behind them.That's great that Martha is doing so well! The same thing happened with and the NVD once we put her on the SCD. I assume it's because her ability to absorb foods was vastly improved as well, just for a different reason. I haven't really noticed much improvement in that department with the

gingko though. I do notice her GI track works much better with lots of exercise, but then so does everyone else's ;-) What are you using for supplements now? I still use lots of anti-oxidents, fish oil and a bit more B's then a typical kid. Carol in IL AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and 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/DownSyndromeInfoExchange/ Listen to oldest dd's music http://www.myspace.com/vennamusic----- Original Message ----To: DownSyndromeInfoExchange Sent: Friday, June 27, 2008 10:56:55 PMSubject: Re: [DownSyndromeInfoExchange] Down Syndrome ResearchCarol,What's interesting about what

Stanford is doing....PZT was used with the DS mice and they tested *smarter* than the regular mice. And after the drug had been stopped, they didn't lose the intelligence. Now, if they can get the drug company to start manufacturing it again, it may very well be used on humans again. When they used it before, if I'm understanding it, they were using some astronomical dosage like 30-40mg per kilo. What about 1mg per kilo....! The mice were put on 2 mg (I believe) and there were no seizures!!! Exciting news. What Garner is going to do now is use the protocol that is doing now. The main component with all the promise - ginkgo biloba. It's the bilobalide that is the ticket. We're giving more than the 2.5mg/lb and there's incredible things going on with Martha. To understand fully GABA receptors and what ginkgo biloba does is almost too much for words. Those receptors are throughout the body and once they start getting taken care of, then a lot of issues go away. For instance, we don't use Nutrivene D anymore because it was actually causing problems. Martha is now able to absorb what she needs from food like a "typical" child and the TNI is too much of an overload. We don't need the digestive enzymes either. Keep an eye on Garner and Stanford.... ...he's the one to watch. Not Mobley. Tina

[Guest guest]

Carol,

We had a Mom Spa weekend at 's and discussed the science behind what is going on.

Mobley has been put on the shelf, and Garner is the guy to watch. Also Fernandez did a great paper, I'll attach it here and hope it comes through. If not, give a holler and I'll send it.

With the PTZ, they were using massive amounts on humans....which is the mistake they usually do. The old "if a little works, then a lot will work better" garbage. But it's still there, just like piracetam is still out there. The mice had NO seizures when it was used *correctly*.

With prozac, even Dr. L was prescribing it for gut issues. Low dosage. So while he's having a fit with 's protocol, there isn't much he hasn't prescribed for our kids. Heck, it wasn't that long ago, he was again ginkgo!! My how times have changed.

Again, it's a low dosage, unlike what they send out the "fear alerts", where it's up around 40-50mg and goodness knows what else they are taking. That's usually the case, and not just prozac by itself.

It's the GABA receptors that are in overdrive, and ginkgo "slows them down". As says, our bodies need to be in balance, especially our kids. Well, it's the inhibitory that has to be inhibited, not the excitatory. It took a bit, but the explanation, once it hit me(!), made such incredible sense. There are GABA receptors throughout the body and the GB "balances" them out and the body works the way it should.

Yes, it's the bilobalide that works. And there is no one who is extracting it. Hopefully once the see this research, someone will see the money(!) in it and take it on. There are patents filed for this process.

As for what Martha is taking....prozac, GB, focalin, PC, DHA, CLO, BodyBio balance, optizinc, TMG, methyl B12, L-glutathione, levoxyl, atenolol. I think that's all.

The biggest thing of all that's happening is her deductive reasoning. Her speech is coming, but they said it would be the last thing to emerge. But she's also self correcting constantly.

I thought I would have all my life to stay a step ahead of her. I was doing good. NOW....I'm having to put myself in 2nd gear stay a step ahead, and even that is not working at times!!! 3rd gear here I come.

Again, hope the paper comes through, but if not, holler.

Tina

[Guest guest]

Hi Tina,

I just wanted to pass on some information that

might be helpful to you. Since it

is apparently important for you to stay on top of the most recent

information. For people who are

supplementing with glutathione, the latest research has

shown the body does not absorb it that way and it does not increase glutathione

levels in the body. I give Phoebe a

supplement called NAC (N-Acetyl Cysteine) that is the precursor to glutathione. Studies have shown that NAC does

increase glutathione levels.

I just wanted to point that out since you are into “putting

things on the shelf” that do not work for you.

Dinkins-Borkowski; Nolan(5) nocf, Phoebe(3) Ds

& cf

Phoebe Updates CLICK HERE

" The

future belongs to those who believe in the beauty of their dreams. "

– Eleanor Roosevelt

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Roquemores

Sent: Saturday, June 28, 2008 10:26 AM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] Down Syndrome Research

Carol,

We had a Mom Spa weekend at 's and discussed the

science behind what is going on.

Mobley has been put on the shelf, and Garner is the guy to

watch. Also Fernandez did a great paper, I'll attach it here and hope it

comes through. If not, give a holler and I'll send it.

With the PTZ, they were using massive amounts on

humans....which is the mistake they usually do. The old " if a little

works, then a lot will work better " garbage. But it's still there,

just like piracetam is still out there. The mice had NO seizures when it

was used *correctly*.

With prozac, even Dr. L was prescribing it for gut

issues. Low dosage. So while he's having a fit with 's

protocol, there isn't much he hasn't prescribed for our kids. Heck,

it wasn't that long ago, he was again ginkgo!! My how times have changed.

Again, it's a low dosage, unlike what they send out the

" fear alerts " , where it's up around 40-50mg and goodness knows what

else they are taking. That's usually the case, and not just prozac by

itself.

It's the GABA receptors that are in overdrive, and ginkgo

" slows them down " . As says, our bodies need to be in

balance, especially our kids. Well, it's the inhibitory that has to be

inhibited, not the excitatory. It took a bit, but the explanation, once

it hit me(!), made such incredible sense. There are GABA receptors

throughout the body and the GB " balances " them out and the body works

the way it should.

Yes, it's the bilobalide that works. And there is no

one who is extracting it. Hopefully once the see this research, someone

will see the money(!) in it and take it on. There are patents filed for

this process.

As for what Martha is taking....prozac, GB, focalin, PC,

DHA, CLO, BodyBio balance, optizinc, TMG, methyl B12, L-glutathione, levoxyl,

atenolol. I think that's all.

The biggest thing of all that's happening is her deductive

reasoning. Her speech is coming, but they said it would be the last thing

to emerge. But she's also self correcting constantly.

I thought I would have all my life to stay a step ahead of

her. I was doing good. NOW....I'm having to put myself in 2nd gear

stay a step ahead, and even that is not working at times!!! 3rd gear here

I come.

Again, hope the paper comes through, but if not, holler.

Tina

[Guest guest]

Hi there - Now this may be a silly question, but how do you guys decide what supplements to give your kids, and how do you know the dosages? I am currently giving (just turned 2!) the multi-vit. rx'd by the pediatrician (since no fluoride in our water) and an Omega-3. I would love to try anything (almost) that would help him out. Fortunately we don't seem to have any major digestive issues (nothing that an occasional bit of prunes doesn't help), but if there are natural things that can help cognitively, I want to try.

Thanks!

Vikki

Mama to iel (almost 4), (2, DS) and Hannah (11 weeks)

[Guest guest]

I'm new to all of this DS research mumbo-jumbo, but I'm trying to catch on as fast as I can. Is there info on the DSIE site that I can download about ginkbo biloba and its use with the DS population? I've already been to the Garner Lab site and read all about what they are doing. Very interesting and encouraging stuff. Do you ladies have a list of websites worth checking out or some concise documenation about this subject? I am particularly interested in this correlation between neurological function in the periferal nervous system and how it seems to correlate with brain function in DS -- you see, I have a DS child who is suffering from paralysis from the waist down . . . I also have a wild question I'm wondering if anyone has dared to ask . . . I'm still breastfeeding. Should I consider taking ginkgo biloba myself to pass it onto him? Has anyone done that and

seen results?

[Guest guest]

HI-

My daughter, who is 4, just loves Pediasure and she has 2 or 3 cans of it a day. She is super picky but we try to always offer her lots of fruits and veggies. Since she has celiac disease (no gluten) we are try to stay on top of things and we often buy organic. We try to stay away from too many food additives and since we have to read labels already, it makes it easier. So far we have not had to give her any thing else. I am not convinced that there is anything on the market today that will make her smarter...instead I try to keep her healthy and make sure she gets enough sleep. It is difficult to learn if someone is tired and sick.

Well- that is our story. When it comes to these things, we all do things differently and that is ok. Lots of moms hate Pediasure and would not give it to their child but it has worked for us and so we give it to her. She is thriving and learning. But, I think it is good to talk to others, get different views and then do what fits into your own family and lifestyle.

Dawn

Subject: [DownSyndromeInfoExchange] Re: Down Syndrome ResearchTo: DownSyndromeInfoExchange Date: Sunday, June 29, 2008, 11:07 AM

Hi there - Now this may be a silly question, but how do you guys decide what supplements to give your kids, and how do you know the dosages? I am currently giving (just turned 2!) the multi-vit. rx'd by the pediatrician (since no fluoride in our water) and an Omega-3. I would love to try anything (almost) that would help him out. Fortunately we don't seem to have any major digestive issues (nothing that an occasional bit of prunes doesn't help), but if there are natural things that can help cognitively, I want to try.

Thanks!

Vikki

Mama to iel (almost 4), (2, DS) and Hannah (11 weeks)

[Guest guest]

My ped. says not to give my daughter anything. She's eating good so she doesn't need it.

[DownSyndromeInfoExchange] Re: Down Syndrome Research

Hi there - Now this may be a silly question, but how do you guys decide what supplements to give your kids, and how do you know the dosages? I am currently giving (just turned 2!) the multi-vit. rx'd by the pediatrician (since no fluoride in our water) and an Omega-3. I would love to try anything (almost) that would help him out. Fortunately we don't seem to have any major digestive issues (nothing that an occasional bit of prunes doesn't help), but if there are natural things that can help cognitively, I want to try.

Thanks!

Vikki

Mama to iel (almost 4), (2, DS) and Hannah (11 weeks)

[Guest guest]

My ped. says not to give my daughter anything. She's eating good so she doesn't need it.

[DownSyndromeInfoExchange] Re: Down Syndrome Research

Hi there - Now this may be a silly question, but how do you guys decide what supplements to give your kids, and how do you know the dosages? I am currently giving (just turned 2!) the multi-vit. rx'd by the pediatrician (since no fluoride in our water) and an Omega-3. I would love to try anything (almost) that would help him out. Fortunately we don't seem to have any major digestive issues (nothing that an occasional bit of prunes doesn't help), but if there are natural things that can help cognitively, I want to try.

Thanks!

Vikki

Mama to iel (almost 4), (2, DS) and Hannah (11 weeks)

[Guest guest]

Carol,

I am giving the ginkgo biloba dosage as suggested by Tesesa

Cody and feel that it is very beneficial. I will not go higher than

that at this time. Yes, is a " guinea pig " as I am giving him

a product called " Avea " by Nutramedix. I feel that the product is

safe, it is merely turmeric root extract which may rival prozac. We

are on the 50th day with this " protocol " and I'm not seeing a lot of

changes, if any, yet in cognition. seems to be doing very

well and I expect that by the end of summer, I'll know more. In

several recent scientific abstracts on PubMed, curcumin has been

studied as well as some other herbal products for their antidepressant

effects as well as neurogenesis. I think that more than one method

may help neurogenesis. As you mentioned, exercise is definately one.

Another would be blueberries.

Very exciting news! I'm genuinely sorry that we didn't make it..

Marsha

>

> Ugg... sorry not to Garner, but to Dr. Reeves, s Hopkins

School of Medicine tofurther investigate exactly what you all are

talking about and in finding drugs that will work with out the side

effects.

>

> These guys are not so foolish as to over look a simple issue such

as dosing. If that's all it took, they would be all over it . There is

more to it, and I think I will put my trust in people who are seasoned

scientist and researchers and let them hash out the details before I

use as a guinea pig.

>

>

>

> Carol in IL

>

> AIM doihavtasay1 GigaTribe doihavtasay

> Mom to seven including , 7 with TOF, AVcanal, GERD, LS,

Asthma, subglottal stenosis, and 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/DownSyndromeInfoExchange/

>

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

>

>

>

> Re: [DownSyndromeInfoEx change] Down Syndrome Research

>

>

> Carol,

> We had a Mom Spa weekend at 's and discussed

> the science behind what is going on.

>

> Mobley has been put on the shelf, and Garner is the

> guy to watch. Also Fernandez did a great paper, I'll attach it here

and

> hope it comes through. If not, give a holler and I'll send

> it.

>

> With the PTZ, they were using massive amounts on

> humans....which is the mistake they usually do. The old " if a little

> works, then a lot will work better " garbage. But it's still there,

just

> like piracetam is still out there. The mice had NO seizures when it

was

> used *correctly*.

>

> With prozac, even Dr. L was prescribing it for gut

> issues. Low dosage. So while he's having a fit with 's

> protocol, there isn't much he hasn't prescribed for our kids. Heck,

> it wasn't that long ago, he was again ginkgo!! My how times have

> changed.

>

> Again, it's a low dosage, unlike what they send out

> the " fear alerts " , where it's up around 40-50mg and goodness knows

what else

> they are taking. That's usually the case, and not just prozac by

> itself.

>

> It's the GABA receptors that are in overdrive, and

> ginkgo " slows them down " . As says, our bodies need to be in

> balance, especially our kids. Well, it's the inhibitory that has to be

> inhibited, not the excitatory. It took a bit, but the explanation,

once it

> hit me(!), made such incredible sense. There are GABA receptors

throughout

> the body and the GB " balances " them out and the body works the way it

> should.

>

> Yes, it's the bilobalide that works. And

> there is no one who is extracting it. Hopefully once the see this

> research, someone will see the money(!) in it and take it on. There

are

> patents filed for this process.

>

> As for what Martha is taking....prozac, GB,

> focalin, PC, DHA, CLO, BodyBio balance, optizinc, TMG, methyl B12,

> L-glutathione, levoxyl, atenolol. I think that's all.

>

> The biggest thing of all that's happening is her

> deductive reasoning. Her speech is coming, but they said it would

be the

> last thing to emerge. But she's also self correcting constantly.

>

> I thought I would have all my life to stay a step

> ahead of her. I was doing good. NOW....I'm having to put myself in

> 2nd gear stay a step ahead, and even that is not working at times!!!

3rd

> gear here I come.

>

> Again, hope the paper comes through, but if not,

> holler.

> Tina

>

[Guest guest]

My poor guinea pig is hiding. I told him I wouldn't let anything happen to him.

Re: [DownSyndromeInfoEx change] Down Syndrome Research> > > Carol,> We had a Mom Spa weekend at 's and discussed > the science behind what is going on. > > Mobley has been put on the shelf, and Garner is the > guy to watch. Also Fernandez did a great paper, I'll attach it hereand > hope it comes through. If not, give a holler and I'll send > it.> > With the PTZ, they were using massive amounts on > humans....which is the mistake they usually do. The old "if a little > works, then a lot will work better" garbage. But it's still there,just > like piracetam is still out there. The mice had NO seizures when itwas > used *correctly*. > > With prozac, even Dr. L was prescribing it for gut > issues. Low dosage. So while he's having a fit with 's > protocol, there isn't much he hasn't prescribed for our kids. Heck, > it wasn't that long ago, he was again ginkgo!! My how times have > changed.> > Again, it's a low dosage, unlike what they send out > the "fear alerts", where it's up around 40-50mg and goodness knowswhat else > they are taking. That's usually the case, and not just prozac by > itself. > > It's the GABA receptors that are in overdrive, and > ginkgo "slows them down". As says, our bodies need to be in > balance, especially our kids. Well, it's the inhibitory that has to be > inhibited, not the excitatory. It took a bit, but the explanation,once it > hit me(!), made such incredible sense. There are GABA receptorsthroughout > the body and the GB "balances" them out and the body works the way it > should.> > Yes, it's the bilobalide that works. And > there is no one who is extracting it. Hopefully once the see this > research, someone will see the money(!) in it and take it on. Thereare > patents filed for this process. > > As for what Martha is taking....prozac, GB, > focalin, PC, DHA, CLO, BodyBio balance, optizinc, TMG, methyl B12, > L-glutathione, levoxyl, atenolol. I think that's all.> > The biggest thing of all that's happening is her > deductive reasoning. Her speech is coming, but they said it wouldbe the > last thing to emerge. But she's also self correcting constantly. > > I thought I would have all my life to stay a step > ahead of her. I was doing good. NOW....I'm having to put myself in > 2nd gear stay a step ahead, and even that is not working at times!!!3rd > gear here I come.> > Again, hope the paper comes through, but if not, > holler.> Tina>

[Guest guest]

My poor guinea pig is hiding. I told him I wouldn't let anything happen to him.

Re: [DownSyndromeInfoEx change] Down Syndrome Research> > > Carol,> We had a Mom Spa weekend at 's and discussed > the science behind what is going on. > > Mobley has been put on the shelf, and Garner is the > guy to watch. Also Fernandez did a great paper, I'll attach it hereand > hope it comes through. If not, give a holler and I'll send > it.> > With the PTZ, they were using massive amounts on > humans....which is the mistake they usually do. The old "if a little > works, then a lot will work better" garbage. But it's still there,just > like piracetam is still out there. The mice had NO seizures when itwas > used *correctly*. > > With prozac, even Dr. L was prescribing it for gut > issues. Low dosage. So while he's having a fit with 's > protocol, there isn't much he hasn't prescribed for our kids. Heck, > it wasn't that long ago, he was again ginkgo!! My how times have > changed.> > Again, it's a low dosage, unlike what they send out > the "fear alerts", where it's up around 40-50mg and goodness knowswhat else > they are taking. That's usually the case, and not just prozac by > itself. > > It's the GABA receptors that are in overdrive, and > ginkgo "slows them down". As says, our bodies need to be in > balance, especially our kids. Well, it's the inhibitory that has to be > inhibited, not the excitatory. It took a bit, but the explanation,once it > hit me(!), made such incredible sense. There are GABA receptorsthroughout > the body and the GB "balances" them out and the body works the way it > should.> > Yes, it's the bilobalide that works. And > there is no one who is extracting it. Hopefully once the see this > research, someone will see the money(!) in it and take it on. Thereare > patents filed for this process. > > As for what Martha is taking....prozac, GB, > focalin, PC, DHA, CLO, BodyBio balance, optizinc, TMG, methyl B12, > L-glutathione, levoxyl, atenolol. I think that's all.> > The biggest thing of all that's happening is her > deductive reasoning. Her speech is coming, but they said it wouldbe the > last thing to emerge. But she's also self correcting constantly. > > I thought I would have all my life to stay a step > ahead of her. I was doing good. NOW....I'm having to put myself in > 2nd gear stay a step ahead, and even that is not working at times!!!3rd > gear here I come.> > Again, hope the paper comes through, but if not, > holler.> Tina>

[Guest guest]

Wow - How did I miss this about Philip? That's great. I have never heard of this particular suppliment form. I have been struggling with the Turmeric pills (crushing them). Now I am off to do some more research! Thanks Marsha!!!

nnaMommy to Freddie 6 yrs Full Inclusion KindyThe Will of God will never take you where the Grace of God will not protect you.

Subject: [DownSyndromeInfoExchange] Re: Down Syndrome ResearchTo: DownSyndromeInfoExchange Date: Sunday, June 29, 2008, 12:02 PM

Carol,I am giving the ginkgo biloba dosage as suggested by TesesaCody and feel that it is very beneficial. I will not go higher thanthat at this time. Yes, is a "guinea pig" as I am giving hima product called "Avea" by Nutramedix. I feel that the product issafe, it is merely turmeric root extract which may rival prozac. Weare on the 50th day with this "protocol" and I'm not seeing a lot ofchanges, if any, yet in cognition. seems to be doing verywell and I expect that by the end of summer, I'll know more. Inseveral recent scientific abstracts on PubMed, curcumin has beenstudied as well as some other herbal products for their antidepressanteffects as well as neurogenesis. I think that more than one method may help neurogenesis. As you mentioned, exercise is definately one.Another would be blueberries.Very exciting news! I'm genuinely sorry that we didn't make

it..Marsha

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[Guest guest]

Wow - How did I miss this about Philip? That's great. I have never heard of this particular suppliment form. I have been struggling with the Turmeric pills (crushing them). Now I am off to do some more research! Thanks Marsha!!!

nnaMommy to Freddie 6 yrs Full Inclusion KindyThe Will of God will never take you where the Grace of God will not protect you.

Subject: [DownSyndromeInfoExchange] Re: Down Syndrome ResearchTo: DownSyndromeInfoExchange Date: Sunday, June 29, 2008, 12:02 PM

Carol,I am giving the ginkgo biloba dosage as suggested by TesesaCody and feel that it is very beneficial. I will not go higher thanthat at this time. Yes, is a "guinea pig" as I am giving hima product called "Avea" by Nutramedix. I feel that the product issafe, it is merely turmeric root extract which may rival prozac. Weare on the 50th day with this "protocol" and I'm not seeing a lot ofchanges, if any, yet in cognition. seems to be doing verywell and I expect that by the end of summer, I'll know more. Inseveral recent scientific abstracts on PubMed, curcumin has beenstudied as well as some other herbal products for their antidepressanteffects as well as neurogenesis. I think that more than one method may help neurogenesis. As you mentioned, exercise is definately one.Another would be blueberries.Very exciting news! I'm genuinely sorry that we didn't make

it..Marsha

Recent Activity

1

New MembersVisit Your Group

Meditation and

Lovingkindness

A Yahoo! Group

to share and learn.

Yahoo! Health

Memory Loss

Are you at risk

for Alzheimers?

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forms, and more.

..

[Guest guest]

One more thing about how I figure out what to give and dosing. I always check in here (or my other groups) with my online freinds to see if they know anything or have used anything with their kids. On numerous occasions I have been researching something only to come here and find out what a bad idea it was to try to product! Nothing beats a parent in the know.........;-)

nnaMommy to Freddie 6 yrs Full Inclusion KindyThe Will of God will never take you where the Grace of God will not protect you.

From: Bolduc <jhunter5431@ charter.net>Subject: Re: [DownSyndromeInfoEx change] Re: Down Syndrome ResearchTo: DownSyndromeInfoExc hange@yahoogroup s.comDate: Sunday, June 29, 2008, 11:13 AM

[DownSyndromeInfoEx change] Re: Down Syndrome Research

Hi there - Now this may be a silly question, but how do you guys decide what supplements to give your kids, and how do you know the dosages? I am currently giving (just turned 2!) the multi-vit. rx'd by the pediatrician (since no fluoride in our water) and an Omega-3. I would love to try anything (almost) that would help him out. Fortunately we don't seem to have any major digestive issues (nothing that an occasional bit of prunes doesn't help), but if there are natural things that can help cognitively, I want to try.

Thanks!

Vikki

Mama to iel (almost 4), (2, DS) and Hannah (11 weeks)

[Guest guest]

One more thing about how I figure out what to give and dosing. I always check in here (or my other groups) with my online freinds to see if they know anything or have used anything with their kids. On numerous occasions I have been researching something only to come here and find out what a bad idea it was to try to product! Nothing beats a parent in the know.........;-)

nnaMommy to Freddie 6 yrs Full Inclusion KindyThe Will of God will never take you where the Grace of God will not protect you.

From: Bolduc <jhunter5431@ charter.net>Subject: Re: [DownSyndromeInfoEx change] Re: Down Syndrome ResearchTo: DownSyndromeInfoExc hange@yahoogroup s.comDate: Sunday, June 29, 2008, 11:13 AM

[DownSyndromeInfoEx change] Re: Down Syndrome Research

Hi there - Now this may be a silly question, but how do you guys decide what supplements to give your kids, and how do you know the dosages? I am currently giving (just turned 2!) the multi-vit. rx'd by the pediatrician (since no fluoride in our water) and an Omega-3. I would love to try anything (almost) that would help him out. Fortunately we don't seem to have any major digestive issues (nothing that an occasional bit of prunes doesn't help), but if there are natural things that can help cognitively, I want to try.

Thanks!

Vikki

Mama to iel (almost 4), (2, DS) and Hannah (11 weeks)

[Guest guest]

I am using Ginkgo too and have been for over a year now. :-)That is not what I was referring to- it's the Prozac. It has not been studied for this purpose. Certainly has not been studied to dose young children for long periods.But YES!! All possibilities are being looked at. If you want safe, *proven* research based treatment, support DSTRF. Prozac is not being suggested for use in kids by Mobley , and if I am not mistaken, not by any of the researchers at Standford involved in these studies. I got that from a board member on DSTRF and the Director who regularly speaks with all the researchers there. They are recommending you NOT give Prozac, ginkgo , is another story though. No problems seen with that as long as you aren't mega dosing.. Carol in IL AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and 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/DownSyndromeInfoExchange/ Listen to oldest dd's music http://www.myspace.com/vennamusic----- Original Message ----From:

Marsha Scheitlin To: DownSyndromeInfoExchange Sent: Sunday, June 29, 2008 2:02:20 PMSubject: [DownSyndromeInfoExchange] Re: Down Syndrome ResearchCarol,

I am giving the ginkgo biloba dosage as suggested by Tesesa

Cody and feel that it is very beneficial. I will not go higher than

that at this time. Yes, is a "guinea pig" as I am giving him

a product called "Avea" by Nutramedix. I feel that the product is

safe, it is merely turmeric root extract which may rival prozac. We

are on the 50th day with this "protocol" and I'm not seeing a lot of

changes, if any, yet in cognition. seems to be doing very

well and I expect that by the end of summer, I'll know more. In

several recent scientific abstracts on PubMed, curcumin has been

studied as well as some other herbal products for their antidepressant

effects as well as neurogenesis. I think that more than one method

may help neurogenesis. As you mentioned, exercise is definately one.

Another would be blueberries.

Very exciting news! I'm genuinely sorry that we didn't make it..

Marsha

>

> Ugg... sorry not to Garner, but to Dr. Reeves, s Hopkins

School of Medicine tofurther investigate exactly what you all are

talking about and in finding drugs that will work with out the side

effects.

>

> These guys are not so foolish as to over look a simple issue such

as dosing. If that's all it took, they would be all over it . There is

more to it, and I think I will put my trust in people who are seasoned

scientist and researchers and let them hash out the details before I

use as a guinea pig.

>

>

>

> Carol in IL

>

> AIM doihavtasay1 GigaTribe doihavtasay

> Mom to seven including , 7 with TOF, AVcanal, GERD, LS,

Asthma, subglottal stenosis, and 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/

>

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

>

>

>

> Re: [DownSyndromeInfoEx change] Down Syndrome Research

>

>

> Carol,

> We had a Mom Spa weekend at 's and discussed

> the science behind what is going on.

>

> Mobley has been put on the shelf, and Garner is the

> guy to watch. Also Fernandez did a great paper, I'll attach it here

and

> hope it comes through. If not, give a holler and I'll send

> it.

>

> With the PTZ, they were using massive amounts on

> humans....which is the mistake they usually do. The old "if a little

> works, then a lot will work better" garbage. But it's still there,

just

> like piracetam is still out there. The mice had NO seizures when it

was

> used *correctly*.

>

> With prozac, even Dr. L was prescribing it for gut

> issues. Low dosage. So while he's having a fit with 's

> protocol, there isn't much he hasn't prescribed for our kids. Heck,

> it wasn't that long ago, he was again ginkgo!! My how times have

> changed.

>

> Again, it's a low dosage, unlike what they send out

> the "fear alerts", where it's up around 40-50mg and goodness knows

what else

> they are taking. That's usually the case, and not just prozac by

> itself.

>

> It's the GABA receptors that are in overdrive, and

> ginkgo "slows them down". As says, our bodies need to be in

> balance, especially our kids. Well, it's the inhibitory that has to be

> inhibited, not the excitatory. It took a bit, but the explanation,

once it

> hit me(!), made such incredible sense. There are GABA receptors

throughout

> the body and the GB "balances" them out and the body works the way it

> should.

>

> Yes, it's the bilobalide that works. And

> there is no one who is extracting it. Hopefully once the see this

> research, someone will see the money(!) in it and take it on. There

are

> patents filed for this process.

>

> As for what Martha is taking....prozac, GB,

> focalin, PC, DHA, CLO, BodyBio balance, optizinc, TMG, methyl B12,

> L-glutathione, levoxyl, atenolol. I think that's all.

>

> The biggest thing of all that's happening is her

> deductive reasoning. Her speech is coming, but they said it would

be the

> last thing to emerge. But she's also self correcting constantly.

>

> I thought I would have all my life to stay a step

> ahead of her. I was doing good. NOW....I'm having to put myself in

> 2nd gear stay a step ahead, and even that is not working at times!!!

3rd

> gear here I come.

>

> Again, hope the paper comes through, but if not,

> holler.

> Tina

>

[Guest guest]

DSRTF funded research that Dr. Mobley is doing with Dr. Garner,

too..key words are ‘highly collaborative”…looks like Dr.

Mobley is very much in the midst of it all. And I agree with you..DSRTF is *the*

place to donate money for research, in my opinion..they are very committed to finding

treatments for people with Ds, not just ‘bandaids’. Pat White from

DSRTF came to my city last year and spoke to our support group Board about the

research studies that the DSRTF is funding..very exciting stuff. And we can *each*

be a part of this…ANY amount of money will help..all will be used to help

fund useful research FOR people w/Ds (sometimes researchers study Ds, but the

results aren’t used to help people w/Ds necessarily..for example,

prenatal testing, or the research about why people w/Ds don’t get certain

kinds of cancers…)

Our group wasn’t able to hold a large fundraiser last year

for the DSRTF, but we bought 70 of the Adopt a Mouse mice…sold some of

them, and we also put one in each of our parent bags that we give to new

parents. (The mice cost $21 each.)

We can’t wait on the government to fund all of these

studies..most of what they fund is for prenatal detection, anyway. If we want

treatments for our kids, we are going to need to help kick in the money for research,IMO.

http://www.dsrtf.org/news-042108.htm

News and Events :: DSRTF News

DSRTF Awards New $880,000 Research Center Grant to

Stanford School of Medicine Researchers

April 21, 2008

The

Down Syndrome Research and Treatment Foundation (DSRTF) is pleased to

announce the award and funding for a major new $880,000 DSRTF Research Center

Grant to researchers at the Center for Research and Treatment of Down Syndrome

and Neuroscience Institute at the Stanford University School of Medicine.

This newly awarded DSRTF Center Grant significantly extends and builds upon the

more than $2.8 million DSRTF has previously generated to support researchers at

the Stanford Center since 2004. Past DSRTF support led to dramatic research

breakthroughs in defining specific mechanisms responsible for cognitive

impairment in Down syndrome and resulted in the identification of new potential

drug targets for improving cognitive function.

The highly collaborative research programs funded by this DSRTF grant are

directed by Mobley, MD, PhD, Professor and Director of the Stanford

Center and Neuroscience Institute; Craig Garner, PhD, Professor of Psychiatry

and Behavioral Sciences; Madison, PhD, Associate Professor of Molecular

and Cellular Physiology; and Isabella Graef, PhD, Assistant Professor of

Pathology. The research projects include, 1) extending investigations on the role

of a chromosome 21 gene, APP, in Down syndrome-associated neurodegeneration,

early-onset Alzheimer’s disease pathology, and learning and memory

impairment as well as the identification of potential drugs to ameliorate these

effects; 2) collaborative studies converging to further elucidate the

mechanisms resulting in excitatory and inhibitory neural circuitry imbalance in

Down syndrome, how the reversal of this imbalance improves memory and learning,

and the evaluation of potential drugs, including GABA inhibitors such as the

previously identified PTZ, as a therapeutic strategy to reverse the inhibitory

circuit-mediated cognitive impairment; and 3) new studies to identify

additional potential drug targets through defining the role of over-expression

of two other chromosome 21 genes, designated DYRK1A and RCAN1, in dysregulation

of a specific cellular signaling pathway and concomitant Down syndrome

phenotypes, including learning and memory impairments. “This grant helps

support great science that may become great therapy,” says Dr. Mobley,

adding that it “is an immense pleasure to work with such talented

scientists.”

Key elements of DSRTF's paradigm-shifting research strategy designed to

accelerate the development of effective, new cognitive impairment therapies

include identifying and pairing the most promising research programs together

with effective levels of funding to achieve meaningful results. This

approach has yielded dividends at the Down Syndrome Center established at

Stanford University. “The unprecedented results so rapidly achieved by

the Stanford researchers with the equally unprecedented level of funding

provided by DSRTF since 2004 demonstrates a strong proof-of-principle for

DSRTF’s strategy,” says Harpold, PhD, Chief Executive

Officer of DSRTF. “The DSRTF-supported research at Stanford has led to

the first definition of specific mechanisms involved in cognitive impairment in

Down syndrome and identification of multiple potential drug targets for

development of new therapies. Continued funding through this significant new

grant not only allows this research to advance to the next phase of evaluating

potential drugs, but also enhances the momentum for discovering additional new

drug targets.” Regarding the DSRTF Research Center Grants to

Stanford, Dr. Mobley adds that DSRTF has “been the most effective funding

source focused specifically on Down syndrome research. They have been very

helpful to us and we very much appreciate their support.”

“Not only do the successful results and direction of the DSRTF-supported

research at Stanford bring us closer to the goal of new therapies for improving

cognitive function in individuals with Down syndrome, but they dramatically

underscore the potential for very broad impact of advances in Down syndrome

research in the much wider population such as a unique pathway to new

Alzheimer’s disease drugs,” says Dr. Harpold. “DSRTF

recognizes these significant new and continuing research initiatives and

advances, such as those currently funded at Stanford and s Hopkins, would

not be possible without the generous financial support of the

Foundation’s donors, and DSRTF is extremely grateful to all those making

this important research possible. Building on this momentum will require

continuing and expanding contributions to DSRTF to further accelerate

attainment of our goal for effective therapies and creating new opportunities,

including the potential for greater independence and achievement, for all

individuals with Down syndrome.”

>

> Ugg... sorry not to Garner, but to Dr. Reeves, s Hopkins

School of Medicine tofurther investigate exactly what you all are

talking about and in finding drugs that will work with out the side

effects.

>

> These guys are not so foolish as to over look a simple issue such

as dosing. If that's all it took, they would be all over it . There is

more to it, and I think I will put my trust in people who are seasoned

scientist and researchers and let them hash out the details before I

use as a guinea pig.

>

>

>

> Carol in IL

>

> AIM doihavtasay1 GigaTribe doihavtasay

> Mom to seven including , 7 with TOF, AVcanal, GERD, LS,

Asthma, subglottal stenosis, and 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/

>

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

>

>

>

> Re: [DownSyndromeInfoEx change] Down Syndrome Research

>

>

> Carol,

> We had a Mom Spa weekend at 's and discussed

> the science behind what is going on.

>

> Mobley has been put on the shelf, and Garner is the

> guy to watch. Also Fernandez did a great paper, I'll attach it here

and

> hope it comes through. If not, give a holler and I'll send

> it.

>

> With the PTZ, they were using massive amounts on

> humans....which is the mistake they usually do. The old " if a little

> works, then a lot will work better " garbage. But it's still there,

just

> like piracetam is still out there. The mice had NO seizures when it

was

> used *correctly*.

>

> With prozac, even Dr. L was prescribing it for gut

> issues. Low dosage. So while he's having a fit with 's

> protocol, there isn't much he hasn't prescribed for our kids. Heck,

> it wasn't that long ago, he was again ginkgo!! My how times have

> changed.

>

> Again, it's a low dosage, unlike what they send out

> the " fear alerts " , where it's up around 40-50mg and goodness

knows

what else

> they are taking. That's usually the case, and not just prozac by

> itself.

>

> It's the GABA receptors that are in overdrive, and

> ginkgo " slows them down " . As says, our bodies need to be

in

> balance, especially our kids. Well, it's the inhibitory that has to be

> inhibited, not the excitatory. It took a bit, but the explanation,

once it

> hit me(!), made such incredible sense. There are GABA receptors

throughout

> the body and the GB " balances " them out and the body works the

way it

> should.

>

> Yes, it's the bilobalide that works. And

> there is no one who is extracting it. Hopefully once the see this

> research, someone will see the money(!) in it and take it on. There

are

> patents filed for this process.

>

> As for what Martha is taking....prozac, GB,

> focalin, PC, DHA, CLO, BodyBio balance, optizinc, TMG, methyl B12,

> L-glutathione, levoxyl, atenolol. I think that's all.

>

> The biggest thing of all that's happening is her

> deductive reasoning. Her speech is coming, but they said it would

be the

> last thing to emerge. But she's also self correcting constantly.

>

> I thought I would have all my life to stay a step

> ahead of her. I was doing good. NOW....I'm having to put myself in

> 2nd gear stay a step ahead, and even that is not working at times!!!

3rd

> gear here I come.

>

> Again, hope the paper comes through, but if not,

> holler.

> Tina

>

[Guest guest]

I Have my own theories about learning - and believe that a child will learn when they are ready to learn it. And that learning comes in Chunks... That said.. challenges are good things too. So I am not to concerned with making " smarter" either.

I do "worry" about early dementia and AD. I have given pedisure after she stopped breastfeeding. I was concerned that she was getting to many calories.. and so we watered it down. She is also a wonderful eater.. and the only food she does not like is white/soft breads ( get stuck in the roof of her mouth) She loves shredded carrots and Mann's Rainbow salad ( match stick size veggies) . I did not and do not ask my doctor about any of it. I just tell them what " we " do. Course .. has only seen her doctor about 8 times in 3 yrs.. and only 3 of those were for illnesses. Docs have their place and I am not knocking anyone for asking their doc.. Just stating that my doc would tell me vits are fine.. but useless.

I do give Sam a regular multi vit.. and have given her Green Tea for the anit oxidants and the Caffeine for learning . I am beginning to do more research on Ginkgo..and we may start that.

That's our story

Steph

[DownSyndromeInfoEx change] Re: Down Syndrome Research

Hi there - Now this may be a silly question, but how do you guys decide what supplements to give your kids, and how do you know the dosages? I am currently giving (just turned 2!) the multi-vit. rx'd by the pediatrician (since no fluoride in our water) and an Omega-3. I would love to try anything (almost) that would help him out. Fortunately we don't seem to have any major digestive issues (nothing that an occasional bit of prunes doesn't help), but if there are natural things that can help cognitively, I want to try.

Thanks!

Vikki

Mama to iel (almost 4), (2, DS) and Hannah (11 weeks)

[Guest guest]

I don’t think that it is good to try things for Danny that

haven’t been proven to be safe, but I *do* believe that people

w/Ds have nutritional needs that go beyond a good diet.

I give Danny nutrivene D, fish oil, daily enzymes, and 60 mg of

Gingko. Before I started him on anything, I gave information about it to Danny’s

doc for his input…didn’t give Danny anything if the doc thought it

would hurt him.

I read an article recently about vitamin and mineral

supplementation that was very interesting,too:

http://www.physorg.com/news131645933.html

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Bolduc

Sent: Sunday, June 29, 2008 3:09 PM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] Re: Down Syndrome Research

My

poor guinea pig is hiding. I told him I wouldn't let anything happen to

him.

-----

Original Message -----

From: Marsha Scheitlin

To: DownSyndromeInfoExchange

Sent: Sunday, June 29, 2008

2:02 PM

Subject: [DownSyndromeInfoExchange]

Re: Down Syndrome Research

Carol,

I am giving the ginkgo biloba dosage as suggested by Tesesa

Cody and feel that it is very beneficial. I will not go higher than

that at this time. Yes, is a " guinea pig " as I am giving him

a product called " Avea " by Nutramedix. I feel that the product is

safe, it is merely turmeric root extract which may rival prozac. We

are on the 50th day with this " protocol " and I'm not seeing a lot of

changes, if any, yet in cognition. seems to be doing very

well and I expect that by the end of summer, I'll know more. In

several recent scientific abstracts on PubMed, curcumin has been

studied as well as some other herbal products for their antidepressant

effects as well as neurogenesis. I think that more than one method

may help neurogenesis. As you mentioned, exercise is definately one.

Another would be blueberries.

Very exciting news! I'm genuinely sorry that we didn't make it..

Marsha

[Guest guest]

I just sent another email that has informative links that you may

find helpful for this kind of stuff.

Qadoshyah

Book

- Down Syndrome: What You CAN Do

www.gotdownsyndrome.net/Book/whatyoucandobook.html

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Shani

Sent: Sunday, June 29, 2008 10:46 AM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] Re: Down Syndrome Research

I'm new to all of this DS research mumbo-jumbo, but I'm

trying to catch on as fast as I can. Is there info on the DSIE site that

I can download about ginkbo biloba and its use with the DS population?

I've already been to the Garner Lab site and read all about what they are

doing. Very interesting and encouraging stuff.

Do you ladies have a list of websites worth checking out or

some concise documenation about this subject? I am particularly

interested in this correlation between neurological function in the periferal

nervous system and how it seems to correlate with brain function in DS -- you

see, I have a DS child who is suffering from paralysis from the waist down . .

..

I also have a wild question I'm wondering if anyone has

dared to ask . . . I'm still breastfeeding. Should I consider taking

ginkgo biloba myself to pass it onto him? Has anyone done that and seen

results?

[Guest guest]

I just sent another email that has informative links that you may

find helpful for this kind of stuff.

Qadoshyah

Book

- Down Syndrome: What You CAN Do

www.gotdownsyndrome.net/Book/whatyoucandobook.html

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Shani

Sent: Sunday, June 29, 2008 10:46 AM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] Re: Down Syndrome Research

I'm new to all of this DS research mumbo-jumbo, but I'm

trying to catch on as fast as I can. Is there info on the DSIE site that

I can download about ginkbo biloba and its use with the DS population?

I've already been to the Garner Lab site and read all about what they are

doing. Very interesting and encouraging stuff.

Do you ladies have a list of websites worth checking out or

some concise documenation about this subject? I am particularly

interested in this correlation between neurological function in the periferal

nervous system and how it seems to correlate with brain function in DS -- you

see, I have a DS child who is suffering from paralysis from the waist down . .

..

I also have a wild question I'm wondering if anyone has

dared to ask . . . I'm still breastfeeding. Should I consider taking

ginkgo biloba myself to pass it onto him? Has anyone done that and seen

results?