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]

,

They are looking for a compound that will work as well as PZT does in mice, but with out the side effects of course. They feel they may well have something that will work and we can use in 5-10 years.

I did ask about the Prozac, and was told it was not good idea from everyone I spoke to. They are looking at derivitives of Gingko and was told gingko wouldn't hurt, but they had no reseach to state it helped, however compononts of it does show promise.

We also talked about Mobley and supplements and the survey that Edie is doing. Some knew nothing about it. I can tell youi DSTRF is not sponsering it, but they would be happy to look at any research study that could be put together regarding supplements. They are all about granting monies for studies that would benifit people with DS.

We should all be ecstatic to finally have our very own Down Syndrome Research Foundation! Everyother medical condition has one, this is OURS. All they are lacking is money for research. Pat told me today if each family touched by DS gave $30 ( that is right in the ball park of memebership in 'support' and awareness groups) that they would have $30 million to fund studies that would directly benifit our kids. As it is, they are so close to coming out with a treatment that will help their brains function like a typical person's. Just like we have come up with treatments for our kid's heart's to function like a typical person's. And it's a LOT cheaper than the amount money we spend on education and long term care issues for the kids!!! Not to mention, it would enable out kids to follow THEIR dreams....... that's why I'm in it. So can do what she clearly wants to.

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

[DownSyndromeInfoEx change] Down Syndrome ResearchTo: "DSIE" <DownSyndromeInfoExc hange@yahoogroup s.com>, "Downsheart" <Downs-Heart@ yahoogroups. com>, "downsyndrome@ yahoogroups. com" <downsyndrome@ yahoogroups. com>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]

Tina, What exactly do you mean that "Mobley has been put on the shelf' ? Would like to address more , but right now I am off to battle the Sat grocery shopping crowd!!!You should be very happy to see that Garner has been awarded a grant ( see other post) from DSTRF, and so I assume that you are all about supporting them with money? 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: Saturday, June 28, 2008 10:25:40 AMSubject: 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]

Ugg... sorry not to Garner, but to Dr. Reeves, s Hopkins School of Medicine to further 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 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: Saturday, June 28, 2008

11:47:49 AMSubject: Re: [DownSyndromeInfoExchange] Down Syndrome ResearchTina, What exactly do you mean that "Mobley has been put on the shelf' ? Would like to address more , but right now I am off to battle the Sat grocery shopping crowd!!!You should be very happy to see that Garner has been awarded a grant ( see other post) from DSTRF, and so I assume that you are all about supporting them with money? 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 Re: [DownSyndromeInfoEx change] Down Syndrome ResearchCarol,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]

OMG...I hope you didn't I was advocating putting Martha on the PZT...! I'm not. I've got a clearer understanding of herbs and such than I do with a number of drugs. My understanding of prozac is clearer than it was when I first heard of using it for neurogenesis than it was 2.5 years ago.

No, we're staying within the boundaries that Stanford is ok with. And I just wish I could get my hands on straight bilobalide!

And I didn't mean to imply that it was as simple as dosing. Excuse that statement. However if you had to rank the issues with it....that would be the number one issue, all else to follow. That's what Stanford realized.

Tina

[Guest guest]

[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]

First I do research on any products I hear about, then I talk to our pediatrician and nutritionist as well as endocrinologist (Freddie is hypothyroid). Once I get the o.k from them, I add it to Freddie's diet.

Right now Freddie takes 60 mg of Gingko, multivitamins and 1200 mg DHA. Freddie eats any thing we present to him minus what I wouldn't touch with a ten foot poll! The kid, at 68 pounds, has no absorption issues........;-)

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: Re: [DownSyndromeInfoExchange] Re: Down Syndrome ResearchTo: DownSyndromeInfoExchange Date: 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]

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]

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]

We give my brother Nutrivene-D, Nordic Naturals ProDHA, Zinc,

Ginkgo Biloba, Tart Cherry, Turmeric, Blueberry, & Coconut Oil.

We research it out thoroughly before giving my brother any

supplements. We do ask my brother’s doctor his opinion & since he is

very much for TNI, it makes things much easier J. He doesn’t

necessarily agree that some of the things we give my brother will do much (like

Coconut Oil, etc), but none of them are dangerous.

Here’s some links that are helpful & informative:

http://www.nutrivene.com/educational_info.php

http://gotdownsyndrome.blogspot.com

www.einstein-syndrome.com

www.lleichtman.org

http://www.altonweb.com/cs/downsyndrome/index.htm?page=home.html

(click on " Supplements & Drugs " on the left hand side, there's

loads of information

there)

www.changingmindsfoundation.com

Qadoshyah

Book

- Down Syndrome: What You CAN Do

www.gotdownsyndrome.net/Book/whatyoucandobook.html

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Boning

Sent: Sunday, June 29, 2008 10:07 AM

To: DownSyndromeInfoExchange

Subject: [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]

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]

But, my question would be – is she absorbing and actually

getting all the adequate nutrients she needs? Just because she is eating good

does not mean she is getting all the nutrients she needs.

Qadoshyah

Book

- Down Syndrome: What You CAN Do

www.gotdownsyndrome.net/Book/whatyoucandobook.html

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Bolduc

Sent: Sunday, June 29, 2008 1:15 PM

To: DownSyndromeInfoExchange

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

My

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

need it.

-----

Original Message -----

From: Boning

To: DownSyndromeInfoExchange

Sent: Sunday, June 29,

2008 10:07 AM

Subject: [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]

nna,

All of the Nutramedix products are in a liquid extract form. They are

most effective mixed with 4 oz of water or more. The reason that I

choose this company is that I heard that " Avea " was becoming popular

for use in depression and I reasoned that if the product was making a

difference, then it was reaching the brain. Remember all the

discussion about poor bioavailability? Well, I still don't know if

the dosage of " 10 drops - 3 times daily " equates to the " 10 mg/kg " up

to " 20mg/kg " in the scientific abstract about " Curcumin reverses

impaired neurogenesis in chronically stressed rats " , but it's worth a

try. Another thought is that turmeric has been used as a

food/preservative for many years by all ages and so it has a long

history of use - I would think that it's safe. I have done extensive

research, also. No pills to swallow, although there is a slight taste

to the water. Unfortunately, the company can't give out a lot of

info. because of the FDA.

He is getting a lot of GB - 240 mg, but he weights 100 lbs. Each

person is an individual and it seems good for him. I sense that it

was the right move for us. The next step is to remove most bad fats

and up the good fats as well as healthier foods.

Too soon to tell at this time about the effects of Avea on

neurogenesis, but I definately think that it would be helpful as a

deterrent to AD.

Marsha

>

>

> Subject: [DownSyndromeInfoExchange] Re: Down Syndrome Research

> To: DownSyndromeInfoExchange

> Date: Sunday, June 29, 2008, 12:02 PM

>

>

>

>

>

>

> 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

>

>

>

>

>

>

>

>

>

> Recent Activity

>

>

> 1

> New MembersVisit Your Group

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>

[Guest guest]

I just found this:

Ginkgo

(Ginkgo Biloba)

Hale's " Medications and Mother's Milk " indicates that Ginkgo Biloba

extract (this is an extract of the leaves) appears relatively nontoxic for

nursing moms and their babies. The seeds and fruit pulp of the Ginkgo Biloba

tree are toxic and should not be consumed. This herb has anticoagulant

properties, so may affect coagulation processes in the mother and the nursling.

For this reason (per Nice et al) it should be used with caution, especially in

infants with cardiovascular disease. Possible adult side-effects include

headache, dizziness, heart palpitations, GI symptoms, and dermatologic

reactions. No pediatric concerns (via breastmilk) have been reported. Several

case reports (not in Hale) indicate that ginkgo biloba may increase milk

supply. More info can be found in the article, A

Review of 12 Commonly Used Medicinal Herbs and in the article Fossil Medicine: Ginkgo

biloba (Corrigan D. European Journal of Herbal Medicine, Vol 1:3

1995)

http://www.kellymom.com/herbal/ref/herbs_g.html

i

do know that some docs don’t recommend using gingko in kids under 6 yrs of age.

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Carol in

IL

Sent: Monday, June 30, 2008 12:23 AM

To: DownSyndromeInfoExchange

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

Welcome to

the list Shani!!

I would love to hear your story and will add Ezra to my prayer

list. Have you heard all the stories about paralyzed children regaining

function by being put through physical motions o\over and

over each day? There was a program on TLC a few years that was so fascinating.

If there is hope of any of the nerves still being viable, you may want to check

into that. Moving a child's limbs re-builds the connections from the 'bottom

up'.

If you can find evidence that gingko passes through the breast milk, should

work. Not sure how safe ginko is for babies though. How old is Ezra?

Are you taking a good quality fish oil that has been tested to be heavy

metal free too? That will go through your milk too.

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

[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]

Same here... Ironically we declined testing with this pregnancy. But Either way when I was about 7 months along GOD told me one day at church. ( Long Story)

..

When Sam was delivered the MW started asking " did you get the AFP test?" I cut her off and I told her.. " She has Downs Syndrome and its OK " .

Steph

[DownSyndromeInfoExchange] Re: Down Syndrome ResearchTo: DownSyndromeInfoExchange Date: Monday, June 30, 2008, 12:30 PM

Carol & Kathy, thanks for all the info you've found on my behalf regarding the gingko and the breast milk. I am only taking a multi vitamin and Fenugreek to help with my milk supply (which is dwindling). Never been much of a vitamin/herb person, but I think that may soon be changing. Carol - you mentioned "taking a good quality fish oil that has been tested to be heavy metal free too" -- any suggestions on what to buy & where? Kathy -- you brought up an issue I read elsewhere -- "This herb has anticoagulant properties, so may affect coagulation processes in the mother and the nursling. For this reason it should be used with caution, especially in infants with cardiovascular disease." Of course, since we are only 4 weeks past OHS, the effects on the blood are to be considered. I am thinking of running this past the CV surgeon, but I think I already know what the response will be . . . he's on aspirin already, so adding the affects of ginkgo will probably not be a good idea . . .

Some of you have asked for the scoop on Ezra. First, let me say that if you really want the whole picture, you can visit our caring bridge site at www.caringbridge. org/ezrawilliams. However, that may be more information than everyone's busy lives can handle! Let's see if I can provide the Reader's Digest version:

Ezra was born February 26, 2008, making him 4 months old, currently. He was born post-dates (40w3d) and weighed only 5lbs 11oz. I did not have a prenatal diagnosis of DS, but I knew in my heart that he would be born with Downs. What I didn't know was all the medical stuff that comes along with that diagnosis. He has a complete AV canal (repaired 4 weeks ago on 6/3) and PDA, congenital hypothyroidism, hypotonia, feeding issues (g-tube since 4/29), and hearing problems which resulted in tubes placed in both ears on 4/29. Also, Ezra does not have 47 chromosomes like most kids with DS. He has 48 -- on top of DS, he has XYY Syndrome (NOT to be confused with Kleinfelter' s Syndrome which is XXY) Geneticists have told us that he is the 25th recorded case in the world of a child with both of these chromosomal anomolies.

In addition to this stuff that we've known from the early days, we now have a new challenge, perhaps the most devastating . . . Ezra has a T5-T6 spinal injury due to blood loss to the lower extremeties -- an extremely rare complication of open heart surgery. The injury is low enough that it does not affect use of his arms and does not create breathing issues. However, he has lost control of bowel function, bladder function and legs. Basically, he is paralyzed from the waist down. It is possible that he may regain some function, but in 4 weeks, we have seen no change. Neurologists say that the timeline is basically as follows: most recovery in the first 3 months; a little more recovery by 6 months; slim pickins up to a year and at a year, "what-you-see- is-what-you- get. However, we believe, "With God, ALL things are possible!" God has been faithful to give us grace to face each day and I can say that, in my heart, I have accepted the paralysis just as I have accepted the DS. I'm sure many rough days are ahead, but I have already seen God move in powerful ways through these trials -- and, I trust Him implicitly.

'nough said?

Shani

[Guest guest]



Exactly! How cool is that? I wonder how many of us had some sort of pre knowledge.

God Told me my baby would have DS.. and I said.. that was fine with me as long as she would live. ( paraphrasing but that was the short version- I knew heart issues came with DS.. but did not know they had made such advances.. I was afraid my child would die shortly after birth.)

[DownSyndromeInfoEx change] Re: Down Syndrome Research

To: DownSyndromeInfoExc hange@yahoogroup s.com

Date: Monday, June 30, 2008, 12:30 PM

Carol & Kathy, thanks for all the info you've found on my behalf regarding the gingko and the breast milk. I am only taking a multi vitamin and Fenugreek to help with my milk supply (which is dwindling). Never been much of a vitamin/herb person, but I think that may soon be changing. Carol - you mentioned "taking a good quality fish oil that has been tested to be heavy metal free too" -- any suggestions on what to buy & where? Kathy -- you brought up an issue I read elsewhere -- "This herb has anticoagulant properties, so may affect coagulation processes in the mother and the nursling. For this reason it should be used with caution, especially in infants with cardiovascular disease." Of course, since we are only 4 weeks past OHS, the effects on the blood are to be considered. I am thinking of running this past the CV surgeon, but I think I already know what the response will be . . . he's on aspirin already, so adding the affects of ginkgo will probably not be a good idea . . .

Some of you have asked for the scoop on Ezra. First, let me say that if you really want the whole picture, you can visit our caring bridge site at www.caringbridge. org/ezrawilliams. However, that may be more information than everyone's busy lives can handle! Let's see if I can provide the Reader's Digest version:

Ezra was born February 26, 2008, making him 4 months old, currently. He was born post-dates (40w3d) and weighed only 5lbs 11oz. I did not have a prenatal diagnosis of DS, but I knew in my heart that he would be born with Downs. What I didn't know was all the medical stuff that comes along with that diagnosis. He has a complete AV canal (repaired 4 weeks ago on 6/3) and PDA, congenital hypothyroidism, hypotonia, feeding issues (g-tube since 4/29), and hearing problems which resulted in tubes placed in both ears on 4/29. Also, Ezra does not have 47 chromosomes like most kids with DS. He has 48 -- on top of DS, he has XYY Syndrome (NOT to be confused with Kleinfelter' s Syndrome which is XXY) Geneticists have told us that he is the 25th recorded case in the world of a child with both of these chromosomal anomolies.

In addition to this stuff that we've known from the early days, we now have a new challenge, perhaps the most devastating . . . Ezra has a T5-T6 spinal injury due to blood loss to the lower extremeties -- an extremely rare complication of open heart surgery. The injury is low enough that it does not affect use of his arms and does not create breathing issues. However, he has lost control of bowel function, bladder function and legs. Basically, he is paralyzed from the waist down. It is possible that he may regain some function, but in 4 weeks, we have seen no change. Neurologists say that the timeline is basically as follows: most recovery in the first 3 months; a little more recovery by 6 months; slim pickins up to a year and at a year, "what-you-see- is-what-you- get. However, we believe, "With God, ALL things are possible!" God has been faithful to give us grace to face each day and I can say that, in my heart, I have accepted the paralysis just as I have accepted the DS. I'm sure many rough days are ahead, but I have already seen God move in powerful ways through these trials -- and, I trust Him implicitly.

'nough said?

Shani

[Guest guest]



Exactly! How cool is that? I wonder how many of us had some sort of pre knowledge.

God Told me my baby would have DS.. and I said.. that was fine with me as long as she would live. ( paraphrasing but that was the short version- I knew heart issues came with DS.. but did not know they had made such advances.. I was afraid my child would die shortly after birth.)

[DownSyndromeInfoEx change] Re: Down Syndrome Research

To: DownSyndromeInfoExc hange@yahoogroup s.com

Date: Monday, June 30, 2008, 12:30 PM

Carol & Kathy, thanks for all the info you've found on my behalf regarding the gingko and the breast milk. I am only taking a multi vitamin and Fenugreek to help with my milk supply (which is dwindling). Never been much of a vitamin/herb person, but I think that may soon be changing. Carol - you mentioned "taking a good quality fish oil that has been tested to be heavy metal free too" -- any suggestions on what to buy & where? Kathy -- you brought up an issue I read elsewhere -- "This herb has anticoagulant properties, so may affect coagulation processes in the mother and the nursling. For this reason it should be used with caution, especially in infants with cardiovascular disease." Of course, since we are only 4 weeks past OHS, the effects on the blood are to be considered. I am thinking of running this past the CV surgeon, but I think I already know what the response will be . . . he's on aspirin already, so adding the affects of ginkgo will probably not be a good idea . . .

Some of you have asked for the scoop on Ezra. First, let me say that if you really want the whole picture, you can visit our caring bridge site at www.caringbridge. org/ezrawilliams. However, that may be more information than everyone's busy lives can handle! Let's see if I can provide the Reader's Digest version:

Ezra was born February 26, 2008, making him 4 months old, currently. He was born post-dates (40w3d) and weighed only 5lbs 11oz. I did not have a prenatal diagnosis of DS, but I knew in my heart that he would be born with Downs. What I didn't know was all the medical stuff that comes along with that diagnosis. He has a complete AV canal (repaired 4 weeks ago on 6/3) and PDA, congenital hypothyroidism, hypotonia, feeding issues (g-tube since 4/29), and hearing problems which resulted in tubes placed in both ears on 4/29. Also, Ezra does not have 47 chromosomes like most kids with DS. He has 48 -- on top of DS, he has XYY Syndrome (NOT to be confused with Kleinfelter' s Syndrome which is XXY) Geneticists have told us that he is the 25th recorded case in the world of a child with both of these chromosomal anomolies.

In addition to this stuff that we've known from the early days, we now have a new challenge, perhaps the most devastating . . . Ezra has a T5-T6 spinal injury due to blood loss to the lower extremeties -- an extremely rare complication of open heart surgery. The injury is low enough that it does not affect use of his arms and does not create breathing issues. However, he has lost control of bowel function, bladder function and legs. Basically, he is paralyzed from the waist down. It is possible that he may regain some function, but in 4 weeks, we have seen no change. Neurologists say that the timeline is basically as follows: most recovery in the first 3 months; a little more recovery by 6 months; slim pickins up to a year and at a year, "what-you-see- is-what-you- get. However, we believe, "With God, ALL things are possible!" God has been faithful to give us grace to face each day and I can say that, in my heart, I have accepted the paralysis just as I have accepted the DS. I'm sure many rough days are ahead, but I have already seen God move in powerful ways through these trials -- and, I trust Him implicitly.

'nough said?

Shani

[Guest guest]



,

That's our story too. Our daughter, , died in 1993. During that grieving time, the Lord told me I would have another little girl, but she would have DS. Told the Lord, that's fine with me. One alive with DS is much more preferable to me than another in the grave.

Martha was born 4 years later.

Tina

 Exactly! How cool is that? I wonder how many of us had some sort of pre knowledge.

God Told me my baby would have DS.. and I said.. that was fine with me as long as she would live. ( paraphrasing but that was the short version- I knew heart issues came with DS.. but did not know they had made such advances.. I was afraid my child would die shortly after birth.)

..

[Guest guest]



,

That's our story too. Our daughter, , died in 1993. During that grieving time, the Lord told me I would have another little girl, but she would have DS. Told the Lord, that's fine with me. One alive with DS is much more preferable to me than another in the grave.

Martha was born 4 years later.

Tina

 Exactly! How cool is that? I wonder how many of us had some sort of pre knowledge.

God Told me my baby would have DS.. and I said.. that was fine with me as long as she would live. ( paraphrasing but that was the short version- I knew heart issues came with DS.. but did not know they had made such advances.. I was afraid my child would die shortly after birth.)

..

[Guest guest]



I always knew i would have a kid with a disability....when I was 26 my gyno was this little 'Dr. Ruth' type woman, accent and all...she wanted me to get pregnant and not wait too long...my answer 'I'M NOT MARRIED!" She had all of these arguments of how I would grow old alone, nobody would be there to take care of me (oh, this was the last time I saw her) and my response was, "What if my kid is disabled and unable to take care of me..and where's the guarantee that ANY kid will take care of me?"

Wow, I didn't know how prophetic, but I do think that would be able to take care of me...

THEN when I was pregnant I set the crib up around my 3rd month (I'm a lot type A)

and I'm can visualize anything...I could never 'see' a baby in that crib. So when he was born then had an 'infection' (pneumonia from ingesting meconium) I thought for sure the reason I couldn't 'see' him was because he was going to die...so I didn't care about the DS I only cared that he lived! ANd in the few weeks before he was born Jim Henson had died of pneumonia so i thought if a big adult could die from it then a tiny baby could too! (I didn't know there were different types of pneumonia at the time)

, Mom to 14, DS, Southern CaliforniaTo succeed in life,you need three things:a wishbone, a backbone and a funny bone.~ Reba McIntyre

Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosishttp://www.leeworks.net/DDS/What to Say to Parents of a Child with a Diagnosishttp://www.leeworks.net/DDS/speech.html

[DownSyndromeInfoEx change] Re: Down Syndrome Research

To: DownSyndromeInfoExc hange@yahoogroup s.com

Date: Monday, June 30, 2008, 12:30 PM

Carol & Kathy, thanks for all the info you've found on my behalf regarding the gingko and the breast milk. I am only taking a multi vitamin and Fenugreek to help with my milk supply (which is dwindling). Never been much of a vitamin/herb person, but I think that may soon be changing. Carol - you mentioned "taking a good quality fish oil that has been tested to be heavy metal free too" -- any suggestions on what to buy & where? Kathy -- you brought up an issue I read elsewhere -- "This herb has anticoagulant properties, so may affect coagulation processes in the mother and the nursling. For this reason it should be used with caution, especially in infants with cardiovascular disease." Of course, since we are only 4 weeks past OHS, the effects on the blood are to be considered. I am thinking of running this past the CV surgeon, but I think I already know what the response will be . . . he's on aspirin already, so adding the affects of ginkgo will probably not be a good idea . . .

Some of you have asked for the scoop on Ezra. First, let me say that if you really want the whole picture, you can visit our caring bridge site at www.caringbridge. org/ezrawilliams. However, that may be more information than everyone's busy lives can handle! Let's see if I can provide the Reader's Digest version:

Ezra was born February 26, 2008, making him 4 months old, currently. He was born post-dates (40w3d) and weighed only 5lbs 11oz. I did not have a prenatal diagnosis of DS, but I knew in my heart that he would be born with Downs. What I didn't know was all the medical stuff that comes along with that diagnosis. He has a complete AV canal (repaired 4 weeks ago on 6/3) and PDA, congenital hypothyroidism, hypotonia, feeding issues (g-tube since 4/29), and hearing problems which resulted in tubes placed in both ears on 4/29. Also, Ezra does not have 47 chromosomes like most kids with DS. He has 48 -- on top of DS, he has XYY Syndrome (NOT to be confused with Kleinfelter' s Syndrome which is XXY) Geneticists have told us that he is the 25th recorded case in the world of a child with both of these chromosomal anomolies.

In addition to this stuff that we've known from the early days, we now have a new challenge, perhaps the most devastating . . . Ezra has a T5-T6 spinal injury due to blood loss to the lower extremeties -- an extremely rare complication of open heart surgery. The injury is low enough that it does not affect use of his arms and does not create breathing issues. However, he has lost control of bowel function, bladder function and legs. Basically, he is paralyzed from the waist down. It is possible that he may regain some function, but in 4 weeks, we have seen no change. Neurologists say that the timeline is basically as follows: most recovery in the first 3 months; a little more recovery by 6 months; slim pickins up to a year and at a year, "what-you-see- is-what-you- get. However, we believe, "With God, ALL things are possible!" God has been faithful to give us grace to face each day and I can say that, in my heart, I have accepted the paralysis just as I have accepted the DS. I'm sure many rough days are ahead, but I have already seen God move in powerful ways through these trials -- and, I trust Him implicitly.

'nough said?

Shani

[Guest guest]

OMG - that is so weird. I remember having a dream when I was pregnant with my son where everyone looked at my baby and cringed and acted like something was wrong and I kept looking at the baby and saying I didn't see anything wrong (as I recall the face was a blur) - another sign I think I was given that he would be born with Down syndrome. I always knew i would have a kid with a disability.. ..when I was 26 my gyno was this little 'Dr. Ruth' type woman, accent and all...she wanted me to get pregnant and not wait too long...my answer 'I'M NOT MARRIED! " She had all of these arguments of how I would grow old alone, nobody would be there to take care of me (oh, this was the last time I saw her) and my response was, " What if my kid is disabled and unable to take care of me..and where's the guarantee that ANY kid will take care of me? " Wow, I didn't know how prophetic, but I do think that would be able to take care of me... THEN when I was pregnant I set the crib up around my 3rd month (I'm a lot type A) and I'm can visualize anything...I could never 'see' a baby in that crib. So when he was born then had an 'infection' (pneumonia from ingesting meconium) I thought for sure the reason I couldn't 'see' him was because he was going to die...so I didn't care about the DS I only cared that he lived! ANd in the few weeks before he was born Jim Henson had died of pneumonia so i thought if a big adult could die from it then a tiny baby could too! (I didn't know there were different types of pneumonia at the time) , Mom to 14, DS, Southern California To succeed in life, you need three things: a wishbone, a backbone and a funny bone. ~ Reba McIntyre Diagnosis Down Syndrome: A Site of Hope for New Parents or Parents with a Prenatal Diagnosis http://www.leeworks .net/DDS/What to Say to Parents of a Child with a Diagnosis http://www.leeworks .net/DDS/ speech.html [DownSyndromeInfoEx change] Re: Down Syndrome Research To: DownSyndromeInfoExc hange@yahoogroup s.com Date: Monday, June 30, 2008, 12:30 PM Carol & Kathy, thanks for all the info you've found on my behalf regarding the gingko and the breast milk. I am only taking a multi vitamin and Fenugreek to help with my milk supply (which is dwindling). Never been much of a vitamin/herb person, but I think that may soon be changing. Carol - you mentioned " taking a good quality fish oil that has been tested to be heavy metal free too " -- any suggestions on what to buy & where? Kathy -- you brought up an issue I read elsewhere -- " This herb has anticoagulant properties, so may affect coagulation processes in the mother and the nursling. For this reason it should be used with caution, especially in infants with cardiovascular disease. " Of course, since we are only 4 weeks past OHS, the effects on the blood are to be considered. I am thinking of running this past the CV surgeon, but I think I already know what the response will be . . . he's on aspirin already, so adding the affects of ginkgo will probably not be a good idea . . . Some of you have asked for the scoop on Ezra. First, let me say that if you really want the whole picture, you can visit our caring bridge site at www.caringbridge. org/ezrawilliams. However, that may be more information than everyone's busy lives can handle! Let's see if I can provide the Reader's Digest version: Ezra was born February 26, 2008, making him 4 months old, currently. He was born post-dates (40w3d) and weighed only 5lbs 11oz. I did not have a prenatal diagnosis of DS, but I knew in my heart that he would be born with Downs. What I didn't know was all the medical stuff that comes along with that diagnosis. He has a complete AV canal (repaired 4 weeks ago on 6/3) and PDA, congenital hypothyroidism, hypotonia, feeding issues (g-tube since 4/29), and hearing problems which resulted in tubes placed in both ears on 4/29. Also, Ezra does not have 47 chromosomes like most kids with DS. He has 48 -- on top of DS, he has XYY Syndrome (NOT to be confused with Kleinfelter' s Syndrome which is XXY) Geneticists have told us that he is the 25th recorded case in the world of a child with both of these chromosomal anomolies. In addition to this stuff that we've known from the early days, we now have a new challenge, perhaps the most devastating . . . Ezra has a T5-T6 spinal injury due to blood loss to the lower extremeties -- an extremely rare complication of open heart surgery. The injury is low enough that it does not affect use of his arms and does not create breathing issues. However, he has lost control of bowel function, bladder function and legs. Basically, he is paralyzed from the waist down. It is possible that he may regain some function, but in 4 weeks, we have seen no change. Neurologists say that the timeline is basically as follows: most recovery in the first 3 months; a little more recovery by 6 months; slim pickins up to a year and at a year, " what-you-see- is-what-you- get. However, we believe, " With God, ALL things are possible! " God has been faithful to give us grace to face each day and I can say that, in my heart, I have accepted the paralysis just as I have accepted the DS. I'm sure many rough days are ahead, but I have already seen God move in powerful ways through these trials -- and, I trust Him implicitly. 'nough said? Shani

[Guest guest]

Same here. There has never been an issue when it comes to eating. He's always had a terrific appetite.

I remember early on I was told to give him piractem, ginko, and when I spoke with his genetics physician he said 'no' to both. Then after a few years the woman who told me to ignore the doc in the very beginning now said she was wrong about the piractem, her son who used to have a fairly large vocabulary and pretty keen cognitive abilities, now doesn't.

I do, however; have Matt eat lots of fruits and veggies,I am tryn desperately to knock out SOD with lots of antioxidents. I know its a shot in the dark but hopefully it will keep it at bay. People always think I had his hair highlighted due to his white hair.I've designed a brochure about DS and SOD just as an educational tool and pass them out from time to time.

Anyone else out there with highlighed hair besides us. LOL (my natural gray) time to go the the salon!

smom

"Where there is passion and a fire burning in your heart, there is hope..."

"I cannot do everything, but still I can do something." Ms. Helen Keller

Subject: Re: [DownSyndromeInfoExchange] Re: Down Syndrome ResearchTo: DownSyndromeInfoExchange Date: Sunday, June 29, 2008, 1:14 PM

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

[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]

Same here. There has never been an issue when it comes to eating. He's always had a terrific appetite.

I remember early on I was told to give him piractem, ginko, and when I spoke with his genetics physician he said 'no' to both. Then after a few years the woman who told me to ignore the doc in the very beginning now said she was wrong about the piractem, her son who used to have a fairly large vocabulary and pretty keen cognitive abilities, now doesn't.

I do, however; have Matt eat lots of fruits and veggies,I am tryn desperately to knock out SOD with lots of antioxidents. I know its a shot in the dark but hopefully it will keep it at bay. People always think I had his hair highlighted due to his white hair.I've designed a brochure about DS and SOD just as an educational tool and pass them out from time to time.

Anyone else out there with highlighed hair besides us. LOL (my natural gray) time to go the the salon!

smom

"Where there is passion and a fire burning in your heart, there is hope..."

"I cannot do everything, but still I can do something." Ms. Helen Keller

Subject: Re: [DownSyndromeInfoExchange] Re: Down Syndrome ResearchTo: DownSyndromeInfoExchange Date: Sunday, June 29, 2008, 1:14 PM

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

[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]

Same here. There has never been an issue when it comes to eating. He's always had a terrific appetite.

I remember early on I was told to give him piractem, ginko, and when I spoke with his genetics physician he said 'no' to both. Then after a few years the woman who told me to ignore the doc in the very beginning now said she was wrong about the piractem, her son who used to have a fairly large vocabulary and pretty keen cognitive abilities, now doesn't.

I do, however; have Matt eat lots of fruits and veggies,I am tryn desperately to knock out SOD with lots of antioxidents. I know its a shot in the dark but hopefully it will keep it at bay. People always think I had his hair highlighted due to his white hair.I've designed a brochure about DS and SOD just as an educational tool and pass them out from time to time.

Anyone else out there with highlighed hair besides us. LOL (my natural gray) time to go the the salon!

smom

"Where there is passion and a fire burning in your heart, there is hope..."

"I cannot do everything, but still I can do something." Ms. Helen Keller

Subject: Re: [DownSyndromeInfoExchange] Re: Down Syndrome ResearchTo: DownSyndromeInfoExchange Date: Sunday, June 29, 2008, 1:14 PM

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

[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)