RE: Down Syndrome Research

[Guest guest]

In regard to taking the GB while breastfeeding . . . . that

would work, but I think you would have to take a bit more to make sure the

adequate amount gets to the baby.

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]

In regard to taking the GB while breastfeeding . . . . that

would work, but I think you would have to take a bit more to make sure the

adequate amount gets to the baby.

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]

In regard to taking the GB while breastfeeding . . . . that

would work, but I think you would have to take a bit more to make sure the

adequate amount gets to the baby.

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 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.***

Yep, I

completely agree . . . that was my point in the email I just sent J.

Qadoshyah

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Kathy

Ratkiewicz

Sent: Sunday, June 29, 2008 3:15 PM

To: DownSyndromeInfoExchange

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

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.

[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 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.***

Yep, I

completely agree . . . that was my point in the email I just sent J.

Qadoshyah

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Kathy

Ratkiewicz

Sent: Sunday, June 29, 2008 3:15 PM

To: DownSyndromeInfoExchange

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

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.

[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 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.***

Yep, I

completely agree . . . that was my point in the email I just sent J.

Qadoshyah

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Kathy

Ratkiewicz

Sent: Sunday, June 29, 2008 3:15 PM

To: DownSyndromeInfoExchange

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

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.

[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]

What exactly do you mean that "Mobley has been put on the shelf' ?

..

It's Garner who is getting ready to use the Protocol listed on Cody's website. As a researcher, I don't believe he would be using something that he has not checked into, and deems safe for children. The issue with fluoxetine is the bad press, and not the 50 years of research.

So Mobley is out of the picture as far as moving forward with the research they just published last year in regard to the DS Mice....it was and her protocol that started that whole thing.....!

Again, watch Garner and what he's doing. He'd be more than happy to speak with anyone who calls him.

Tina

[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

>

>

> Meditation and

> Lovingkindness

> A Yahoo! Group

> to share and learn.

>

> Yahoo! Health

> Memory Loss

> Are you at risk

> for Alzheimers?

>

> Biz Resources

> Y! Small Business

> Articles, tools,

> forms, and more.

> .

>

[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

>

>

> Meditation and

> Lovingkindness

> A Yahoo! Group

> to share and learn.

>

> Yahoo! Health

> Memory Loss

> Are you at risk

> for Alzheimers?

>

> Biz Resources

> Y! Small Business

> Articles, tools,

> forms, and more.

> .

>

[Guest guest]

Hi ,

Faith is 10 years old. She is a picky eater, but improving slowly. She has taken Nutrivene D since she was 10 months old. She also takes Nordic Naturals Pro DHA, zinc, methyl B12, and 120 mg gingko biloba. She did take Piracetam for a few years but has stopped.

I know she doesn't eat a balanced diet and so needs vitamins. But, I also am convinced that people with DS have different nutritional needs and this is an attempt to meet those needs. The ped says none of this will hurt her, maybe it will help.

Faith is very healthy. This school year she almost had perfect attendance, missing 3 days near the end of school with a stomach virus. She just completed 3rd grade, she is mainstreamed for all but math and reading.

As far as flouride goes, I've been in a panic because the city has started adding it to our water! Do a little research, past what dentists say, it is basically a poison.

All the best to you in your research!

ette

-------------- Original message from Boning : --------------

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]

Tina, Are you saying Garner is ready to give prozac to children right now as a study? Could you please send that study to the list? I have been told over and over by people who talk to him on a regular basis that it's still in the animal stages and being studied. If asked if it's OK to give prozac, you will get a resounding NO. All the information on line states the same thing.Have you actually called and talked to him, personally? And he said to go a head and give your child prozac for cognition purposes, now, with out waiting for the final studies to come out?This is what it says on his site:"Scientists in the Garner laboratory at Stanford University have

recently published some exciting findings regarding improved cognitive

performance in a mouse model of Down syndrome. Using several different

drugs, scientists were able to restore cognitive performance in mice to

almost normal levels. To their surprise, improved cognitive performance

persisted, even after the drug treatment had been terminated.These

research results shed new light on potential mechanisms underlying

impaired cognition in Down syndrome and may provide novel strategies

for therapeutic possibilities. While this is very encouraging news, it

is important to keep in mind that these studies were carried out in

animals. The safety and efficacy of the drugs will have to be carefully

assessed."What kind of implications might these findings have for people with Down syndrome?

Results from the experiments described in this review revealed that

several drugs are able to improve cognitive performance in a mouse

model of Down syndrome and that the treatment effect was long-lasting.

While these results are very exciting and give us hope that a similar

treatment may improve cognition in people with Down syndrome one day,

it is too early to implement analogous therapies in humans. It will

take time to carefully assess the safety and efficacy of these and

potentially other drugs for human use.http://dsresearch.stanford.edu/community/Mobley has not been put on the shelf and is very much involved. I am not sure what the reason is for continuing to send out misinformation regarding the research? And even though DSTRF is funding Garner you seem not to be very supportive of them, yet support 'Changing Minds' when they have not given any money towards funding the research that they believe in so much, they are willing to by pass the animal trials/studies and just move on to trying it on real people?I am confused here... what's the deal? 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: Sunday, June 29, 2008

5:48:28 PMSubject: Re: [DownSyndromeInfoExchange] Down Syndrome Research What exactly do you mean that "Mobley has been put on the shelf' ? . It's Garner who is getting ready to use the Protocol listed on Cody's website. As a researcher, I don't believe he would be using something that he has not checked into, and deems safe for children. The issue with fluoxetine is the bad press, and not the 50 years of research. So Mobley is out of the picture as far as moving forward with the research they just published last year in regard to the DS Mice....it was and her protocol that started that whole thing.....! Again, watch Garner and what he's doing. He'd be more than happy to speak with anyone who calls him.Tina

[Guest guest]

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 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: Sunday, June 29, 2008 10:45:36 AMSubject: [DownSyndromeInfoExchange] Re: Down Syndrome ResearchI'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 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]

Are you saying Garner is ready to give prozac to children right now as a study? Could you please send that study to the list?

T: Again, If I'm understanding what was told to me, they will follow 's protocol. Martha's medical history was submitted for their review board regarding parameters on who will be accepted into the study. I believe it will be beginning by the first of the year, hopefully.

I have been told over and over by people who talk to him on a regular basis that it's still in the animal stages and being studied. If asked if it's OK to give prozac, you will get a resounding NO.

T: Again, that's correct. However, they are moving forward with those results.

Have you actually called and talked to him, personally?

T: No. has, that was the reason for our conference call and request for additional personal information.

And he said to go a head and give your child prozac for cognition purposes, now, with out waiting for the final studies to come out?

T: No. Why would he say that?Mobley has not been put on the shelf and is very much involved.

T: I'm sure he was, but he will not be part of the next phase.

I am not sure what the reason is for continuing to send out misinformation regarding the research?

T: That's a bold statement, Carol and I'm sorry you believe that to be the case, which it is not. You & I are talking about 2 different things here. I'm talking about the next phase, and you're talking about the first.

And even though DSTRF is funding Garner you seem not to be very supportive of them, yet support 'Changing Minds' when they have not given any money towards funding the research that they believe in so much, they are willing to by pass the animal trials/studies and just move on to trying it on real people?

T: Not supportive of DSTRF? Again Carol, another bold statement with no basis of support.

Who do you think got this research started? Who do you think got the Adopt a Mouse started? Whose idea do you think gave them the information to follow and do research on? Cody - Changing Minds Foundation.

At no time have I given out misinformation, nor attempted to lead anyone astray. All of us at one time or another was wary of something new that came out and a parent was giving to their child. Remember when ginkgo first hit the scene. You were even wondering whether or not to give it to . We all wonder. We all research. We all study. At least that is what I hope we do before giving our child anything. There have always been those who have done things that others have not in what they consider beneficial to their child(ren), whether typical or having DS. Even if it's as simple as TNI, ginkgo biloba, folinic acid, curcumin, to name a few.

My support of Changing Minds is that of someone who has their child in their study. Again, I'm sorry if it's being interpreted as being exclusive of them only. And I hope this clears up your confusion.

Tina

[Guest guest]

Are you saying Garner is ready to give prozac to children right now as a study? Could you please send that study to the list?

T: Again, If I'm understanding what was told to me, they will follow 's protocol. Martha's medical history was submitted for their review board regarding parameters on who will be accepted into the study. I believe it will be beginning by the first of the year, hopefully.

I have been told over and over by people who talk to him on a regular basis that it's still in the animal stages and being studied. If asked if it's OK to give prozac, you will get a resounding NO.

T: Again, that's correct. However, they are moving forward with those results.

Have you actually called and talked to him, personally?

T: No. has, that was the reason for our conference call and request for additional personal information.

And he said to go a head and give your child prozac for cognition purposes, now, with out waiting for the final studies to come out?

T: No. Why would he say that?Mobley has not been put on the shelf and is very much involved.

T: I'm sure he was, but he will not be part of the next phase.

I am not sure what the reason is for continuing to send out misinformation regarding the research?

T: That's a bold statement, Carol and I'm sorry you believe that to be the case, which it is not. You & I are talking about 2 different things here. I'm talking about the next phase, and you're talking about the first.

And even though DSTRF is funding Garner you seem not to be very supportive of them, yet support 'Changing Minds' when they have not given any money towards funding the research that they believe in so much, they are willing to by pass the animal trials/studies and just move on to trying it on real people?

T: Not supportive of DSTRF? Again Carol, another bold statement with no basis of support.

Who do you think got this research started? Who do you think got the Adopt a Mouse started? Whose idea do you think gave them the information to follow and do research on? Cody - Changing Minds Foundation.

At no time have I given out misinformation, nor attempted to lead anyone astray. All of us at one time or another was wary of something new that came out and a parent was giving to their child. Remember when ginkgo first hit the scene. You were even wondering whether or not to give it to . We all wonder. We all research. We all study. At least that is what I hope we do before giving our child anything. There have always been those who have done things that others have not in what they consider beneficial to their child(ren), whether typical or having DS. Even if it's as simple as TNI, ginkgo biloba, folinic acid, curcumin, to name a few.

My support of Changing Minds is that of someone who has their child in their study. Again, I'm sorry if it's being interpreted as being exclusive of them only. And I hope this clears up your confusion.

Tina

[Guest guest]

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]

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]

Shani-

Thank you for sharing your story- I will keep you and Ezra in my prayers!

You said that you did not have a prenatal diagnosis of DS but you still knew in your heart that he would have it. I knew too....even though all test were ok.....when they told me..I said I know and it is ok.

Dawn

Subject: [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]

Shani-

Thank you for sharing your story- I will keep you and Ezra in my prayers!

You said that you did not have a prenatal diagnosis of DS but you still knew in your heart that he would have it. I knew too....even though all test were ok.....when they told me..I said I know and it is ok.

Dawn

Subject: [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]

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]

I also did not have the AFP test but early on had some spotting and had a conversation with God and told him it was okay if the baby had a disability he was still very loved and wanted ... and so it was. was born with Down syndrome! 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 [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]

I also did not have the AFP test but early on had some spotting and had a conversation with God and told him it was okay if the baby had a disability he was still very loved and wanted ... and so it was. was born with Down syndrome! 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 [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]

it is very cool - wish more would have those thoughts then maybe the abortion rate wouldn't be so high for our wonderful kids!  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]

it is very cool - wish more would have those thoughts then maybe the abortion rate wouldn't be so high for our wonderful kids!  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.)

..