Re: Supplements

April 27, 2001

Kelli,

The starter pack for women that you have is the one that they

recommend for women who want to lose fat and tone up their muscles.

Are you doing the BFL program now or are you planning to " get back on

the wagon? " I take the Betagen and the Betalean and have had no

problems with either of them. I am surprised that I am able to take

the Betalean since I have mitral valve prolapse. I started out

taking one capsule a day, the up'd it to one twice per day, and now

I'm up to 2 twice per day and that's as far as I am going to take

it. I have had no problem with angina or palpitations while taking

the Betalean. I don't take it on my free day, but on my last free

day I had one small cup of regular coffee and the caffeine in it

really messed with me. Go figure! My doctor is aware of all of the

supplements that I am on and doesn't have a problem with them since I

have had no problems with them. He even says that my murmur is much

better since I have been on BFL, probably because it incorporates

everything in it that he told me to do in the first place (i.e. drink

a gallon of water a day, exercise, get plenty of rest, eliminate the

sugar from my diet, etc).

I kind of got off of the subject, sorry...

Kathy

> I have tried, but can't quite figure out this whole thing with

> supplements. Today I ordered a bunch of Myoplex (had that before

> when I attemtped this program but fell off the wagon!) and I also

> ordered (had not previously tried this) the BetaGen and the

> BetaLean. It came as a " Starter Pack " for women on the EAS site.

>

> I don't want to fill my body with caffeine, but I would like

> something that is in the middle tier. And what effect does it have

> if you don't have intense exercise? i.e. will it make me gain even

> more? Has anyone had adverse effects to any supplements? I read

the

> warnings for BetaLean and WOW. Scary stuff.

April 30, 2001

Kelli,

Check out this link for lots of great info on supplements:

http://www.musclemedia.com/magazine/v86/v86_strategy.asp

I used Phen-Free for my 1st challenge with good results. It doesn't

contain ephedra like BetaLean, if that is your concern. However, if

you are on birth control, you should not take it, as it contains St.

s Wort which interferes with oral contraceptives' effectiveness.

Jen B.

> I have tried, but can't quite figure out this whole thing with

> supplements

September 25, 2008

I took to an Accunpuncturist who practices Chinese Medicine. The goal is to relieve fluid from his ears to avoid tubes........the formula is custom made for his needs. He is also seeing chiropractor. He goes back in a week or two to be retested..........hopefully it works!

Dawn

Mom to angel , 2

I've been seeing a lot of people supplementing their kids with DSdiets with herbs and vitamins. Can anyone point me to a resource thatwould help explain this to me and help me with figuring out dosage. Thanks.Stacee- mom to cypress age 6 (DS) Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

September 25, 2008

I took to an Accunpuncturist who practices Chinese Medicine. The goal is to relieve fluid from his ears to avoid tubes........the formula is custom made for his needs. He is also seeing chiropractor. He goes back in a week or two to be retested..........hopefully it works!

Dawn

Mom to angel , 2

I've been seeing a lot of people supplementing their kids with DSdiets with herbs and vitamins. Can anyone point me to a resource thatwould help explain this to me and help me with figuring out dosage. Thanks.Stacee- mom to cypress age 6 (DS) Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

September 25, 2008

http://www.altonweb.com/cs/downsyndrome/index.htm?page=home.htmlThe menu on the left has a tab for supplements and there you will find the basic doses of some of the major 'brands' designed for people with DS. It's a very good base to work from. Many of us here have added lots of fish oil and ginko as well as well as various herbs. I use the Specific Carb Diet for with great success. You can read about that here : pecanbread.comIt's somewhat of a trial and error deal. I would recommend picking one of the baisics or try to follow the doses in them and then start watching and observing and adjusting accordingly. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA

'08Join 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: [DownSyndromeInfoExchange] supplements

I took to an Accunpuncturist who practices Chinese Medicine. The goal is to relieve fluid from his ears to avoid tubes....... .the formula is custom made for his needs. He is also seeing chiropractor. He goes back in a week or two to be retested.... ......hopefully it works!

Dawn

Mom to angel , 2

In a message dated 9/24/2008 11:07:53 P.M. Eastern Daylight Time, sdenny2yahoo (DOT) com writes:

I've been seeing a lot of people supplementing their kids with DSdiets with herbs and vitamins. Can anyone point me to a resource thatwould help explain this to me and help me with figuring out dosage. Thanks.Stacee- mom to cypress age 6 (DS) Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

September 25, 2008

http://www.altonweb.com/cs/downsyndrome/index.htm?page=home.htmlThe menu on the left has a tab for supplements and there you will find the basic doses of some of the major 'brands' designed for people with DS. It's a very good base to work from. Many of us here have added lots of fish oil and ginko as well as well as various herbs. I use the Specific Carb Diet for with great success. You can read about that here : pecanbread.comIt's somewhat of a trial and error deal. I would recommend picking one of the baisics or try to follow the doses in them and then start watching and observing and adjusting accordingly. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA

'08Join 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: [DownSyndromeInfoExchange] supplements

I took to an Accunpuncturist who practices Chinese Medicine. The goal is to relieve fluid from his ears to avoid tubes....... .the formula is custom made for his needs. He is also seeing chiropractor. He goes back in a week or two to be retested.... ......hopefully it works!

Dawn

Mom to angel , 2

In a message dated 9/24/2008 11:07:53 P.M. Eastern Daylight Time, sdenny2yahoo (DOT) com writes:

I've been seeing a lot of people supplementing their kids with DSdiets with herbs and vitamins. Can anyone point me to a resource thatwould help explain this to me and help me with figuring out dosage. Thanks.Stacee- mom to cypress age 6 (DS) Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators.

September 25, 2008

Hi Stacee,

The link Carol sent is an excellent link for info on the supplements.

Here’s a few more links that you may find helpful:

Here's some links that you may find helpful.

www.nutrivene.com

www.einstein-syndrome.com

www.dsrf.co.uk - if

you go to their search page, you can search all kinds of things come up.

www.lleichtman.org

http://www.altonweb.com/cs/downsyndrome/index.htm

- on the left hand side there is a spot called " Supplements &

Drugs " , click on that and there's TONS of info there!

http://www.gotdownsyndrome.net/tnifaq.html

- this is a FAQ I put on our site about TNI.

www.gotdownsyndrome.net/rebuttal.html

- this is a big article with a lot of info regarding almost all the areas

involved in TNI.

http://gotdownsyndrome.blogspot.com

Also, Nutrivene has a Physician Packet that you can

request from them and it has lots of good info in it. We did that when we first

found out about TNI and we mailed it to the doctors who we were seeing then and

who had cared for my brother from birth to 6 months or so.

We give my brother Nutrivene-D, DHA, Zinc, Ginkgo Biloba &

MethylB12.

Feel free to email me privately if you have any questions J.

Qadoshyah

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of sdenny2

Sent: Wednesday, September 24, 2008 10:04 PM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] supplements

I've been seeing a lot of people supplementing

their kids with DS

diets with herbs and vitamins. Can anyone point me to a resource that

would help explain this to me and help me with figuring out dosage.

Thanks.

Stacee- mom to cypress age 6 (DS)

September 29, 2008

We started out using NVD and fish oil and I did notice a difference in while using it. After her heart repair her basic health really went down hill- constipation, asthma, severe gerd to the point of it causing a narrowing of her airway, food aversions with sensory and self limiting food choices and she developed a very pain auto immune skin issue called lichen sclerosis ( LS) It was at this time we started her on the Specific Carbohydrate Diet in an effort to get control over the LS, which is did along with fixing the constipation, getting rid of the pot belly/dark circles under her eyes, that frail appereance turned very solid and she had a jump across the board with regards to skills. I tried putting her back on the NVD, used a bunch of different formulations and each time

she regressed and the tummy issues came back. So we stopped and I switched her over to the Kirkman's brand because they have no fillers.I use Every Day vitamins with out A, cod liver oil, lots of fish oil, extra zinc and C esp if sick, gingko Tri-Vita's sublingual B and Mag. I know I am forgetting something... Riverbend has extensive information regarding supplements so I would start researching there. http://www.altonweb.com/cs/downsyndrome/index.htm?page=home.htmlI also highly recommend reading " The Perricone Principal" and if not doing the SCD, try to follow that with your kids. It's all about reducing celluar inflamation and is really perfect to help with some of those issues in our kids. You can pour all the vitamins you want into a child, but if they are eating lots of white flour carbs- pizza, goldfish, french fries etc...and sugar, you are really spitting on a big fire. Carol in ILMom

to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/ Listen to oldest dd's music http://www.myspace. com/vennamusic [DownSyndromeInfoExchange] Supplements

I'm hoping you all will share your thoughts about the available supplements out there. We

took Sophia to the geneticist when she was 6 mos. for a check up. I asked him about

piracetam, etc at this appointment and his response basically was snake oil. My pediatrician

has the same opinion. I've tried to read up on supplements and it makes sense that our

childrens' bodies metabolize things differently due to their extra chromosome so I'm some

what confused on the whole matter. I would like to hear what supplements others are taking

and your experiences with them. I would also like to hear other's opinions on any and all

supplements.

A lot of you guys seem so knowledgeable about all things Down Syndrome so I'm hoping you

guys have some good feedback!

Ruby

and

Ethan, Max, , Drew and Sophia Ds

September 29, 2008

Hi Carol,

Is this author Nickolas Perricone? Is The Perricne Pricipal a book? Where would I find it?

Thanks

ette

--------- [DownSyndromeInfoExchange] Supplements

I'm hoping you all will share your thoughts about the available supplements out there. We took Sophia to the geneticist when she was 6 mos. for a check up. I asked him about piracetam, etc at this appointment and his response basically was snake oil. My pediatrician has the same opinion. I've tried to read up on supplements and it makes sense that our childrens' bodies metabolize things differently due to their extra chromosome so I'm some what confused on the whole matter. I would like to hear what supplements others are taking and your experiences with them. I would also like to hear other's opinions on any and all supplements.A lot of you guys seem so knowledgeable about all things Down Syndrome so I'm hoping you guys have some good feedback!Ruby and Ethan, Max, , Drew and Sophia Ds

September 29, 2008

http://tinyurl.com/3j89yySorry it's The Perricone PROMISE by Perricone Most libraries have it, and lots of the half price book stores. He is often on PBS during their fund drives too. The Zone is very much the same, in fact Perricone recommends The Zone but he adds lots of foods that contain omega 3's and anti-oxidents as well. It's all about controlling blood sugar spikes. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join 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: [DownSyndromeInfoExchange] Supplements

Hi Carol,

Is this author Nickolas Perricone? Is The Perricne Pricipal a book? Where would I find it?

Thanks

ette

September 29, 2008

Thanks, yup, the library has it.

I know there is something going on with the carbs, although Faith tests negative for celiac. Something else I've tried to watch is MSG that seems to be in everything.This apparently is a substance that makes us crave more, perfect for the food industry, disasterous for us.

ette

--------- Re: [DownSyndromeInfoExchange] Supplements

Hi Carol,

Is this author Nickolas Perricone? Is The Perricne Pricipal a book? Where would I find it?

Thanks

ette

September 29, 2008

Faith is 11 years old and has taken Nutrivene D since she was 10 months old. She also takes Nordic Naturals Pro-DHA, sublingual B-12, gingko biloba, and zinc when exposed to sickness. She did take Piracetam for 2 years, not sure of the affect, I may try again. At 4 years old when she started Piracetam she was toilet trained within a short time, it may have helped.

All vitamins are long term. We are all doing what we hope is best for our kids. Whatever you decide to try, start slowly, one thing at a time and see what happens. Mostly you don't see anything quickly, but over time you will notice things like good health, good digestion, more "normalized" functioning. There are defieciences in DS, vitamins try to address that.

ette

-------------- Original message from "bowdoinpartyof7" : --------------

I'm hoping you all will share your thoughts about the available supplements out there. We took Sophia to the geneticist when she was 6 mos. for a check up. I asked him about piracetam, etc at this appointment and his response basically was snake oil. My pediatrician has the same opinion. I've tried to read up on supplements and it makes sense that our childrens' bodies metabolize things differently due to their extra chromosome so I'm some what confused on the whole matter. I would like to hear what supplements others are taking and your experiences with them. I would also like to hear other's opinions on any and all supplements.A lot of you guys seem so knowledgeable about all things Down Syndrome so I'm hoping you guys have some good feedback!Ruby and Ethan, Max, , Drew and Sophia Ds

September 29, 2008

I do not give my daughter any supplements. She is 2 years old and is challenging her therapists.

[DownSyndromeInfoExchange] Supplements

I'm hoping you all will share your thoughts about the available supplements out there. We took Sophia to the geneticist when she was 6 mos. for a check up. I asked him about piracetam, etc at this appointment and his response basically was snake oil. My pediatrician has the same opinion. I've tried to read up on supplements and it makes sense that our childrens' bodies metabolize things differently due to their extra chromosome so I'm some what confused on the whole matter. I would like to hear what supplements others are taking and your experiences with them. I would also like to hear other's opinions on any and all supplements.A lot of you guys seem so knowledgeable about all things Down Syndrome so I'm hoping you guys have some good feedback!Ruby and Ethan, Max, , Drew and Sophia Ds

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 270.7.5/1697 - Release Date: 9/29/2008 7:40 AM

September 29, 2008

Hi ,

Is she outsmarting the therapists? :-)

My Olivia used to wave "bye-bye" to the Speech therapist and hide things on her. What a character!

I'm going to ask her specialists about the gingko - I hope they'll agree to put her on it. Sounds like it'll help her.

Carolyn

http://stores.ebay.com/ck-antiques_W0QQsspagenameZL2222QQtZkm

We've gone co-op! Come and see our newest location at Black Diamond Antiques in the Schuylkill Mall, Frackville, PA!

'Don't worry about the world coming to an end today.It's already tomorrow in Australia ' ( Schultz)

-- Re: [DownSyndromeInfoExchange] Supplements

I do not give my daughter any supplements. She is 2 years old and is challenging her therapists.

[DownSyndromeInfoExchange] Supplements

I'm hoping you all will share your thoughts about the available supplements out there. We took Sophia to the geneticist when she was 6 mos. for a check up. I asked him about piracetam, etc at this appointment and his response basically was snake oil. My pediatrician has the same opinion. I've tried to read up on supplements and it makes sense that our childrens' bodies metabolize things differently due to their extra chromosome so I'm some what confused on the whole matter. I would like to hear what supplements others are taking and your experiences with them. I would also like to hear other's opinions on any and all supplements.A lot of you guys seem so knowledgeable about all things Down Syndrome so I'm hoping you guys have some good feedback!Ruby and Ethan, Max, , Drew and Sophia Ds

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 270.7.5/1697 - Release Date: 9/29/2008 7:40 AM

September 29, 2008

Yep she's outsmarting them. Everytime they think they found something new to try with her, she's already done it.

[DownSyndromeInfoExchange] Supplements

I'm hoping you all will share your thoughts about the available supplements out there. We took Sophia to the geneticist when she was 6 mos. for a check up. I asked him about piracetam, etc at this appointment and his response basically was snake oil. My pediatrician has the same opinion. I've tried to read up on supplements and it makes sense that our childrens' bodies metabolize things differently due to their extra chromosome so I'm some what confused on the whole matter. I would like to hear what supplements others are taking and your experiences with them. I would also like to hear other's opinions on any and all supplements.A lot of you guys seem so knowledgeable about all things Down Syndrome so I'm hoping you guys have some good feedback!Ruby and Ethan, Max, , Drew and Sophia Ds

No virus found in this incoming message.Checked by AVG. Version: 7.5.524 / Virus Database: 270.7.5/1697 - Release Date: 9/29/2008 7:40 AM

September 29, 2008

I would have to agree with Carol on that fantastic book by Perricone, THE PERRICONE PROMISE...On p 62, he speaks on the Number 1 SUPER FOOD in the WORLD!..The ACAI BERRY which contains the highest level of antioxidants know to man, which helps reduce oxidative stress and free radicals in our bodies. As we all know, antioxidants have been in the news alot lately and are extremely beneficial to our bodies.

Here's a short video explaining oxidative stress and free radicals

http://www.thegreatproduct.com/corp/video-antioxidants.asp

The best source that we have found that contains the freeze-dried acai, which is unparalleled in it's antioxidant strength, is the juice MonaVie, which contain 18 other fruits as well. On the ORAC (Oxygen Radical Absorbance Capacity) Scale, four ounces of MonaVie has the equilavent antioxidant capacity of approx. 13 servings of fruits and vegetables. Who consumes this much fruit every day? ! My son who is 19 has been drinking this since February and LOVES IT!!. He has never been able to swallow pills or vitamins, and through the years I have had to crush up supplements etc. He has never been a great eater, especially when it comes to veggies. He will tyically drink 6-8 oz per day.

MonaVie can be purchased from yourself when you become a distributor. After the first time Zach tasted it, he said "Sign me Up!". We had it in the house 2 weeks before he would taste it because it comes in a beautiful bottle that looks like WINE! We don;'t drink, so he got upset with us thinking that's what it was...So he buys this AWESOME Product from himself and SHARES it, doesn't SELL IT, with everyone he comes in contact with! Feel free to email him for further info on MonaVIe at zachluvsmonavie@...

Thanks,

Debbie Pressley

Subject: Re: [DownSyndromeInfoExchange] SupplementsTo: DownSyndromeInfoExchange Date: Monday, September 29, 2008, 2:46 PM

http://tinyurl. com/3j89yySorry it's The Perricone PROMISE by Perricone Most libraries have it, and lots of the half price book stores. He is often on PBS during their fund drives too.

The Zone is very much the same, in fact Perricone recommends The Zone but he adds lots of foods that contain omega 3's and anti-oxidents as well. It's all about controlling blood sugar spikes. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join 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] Supplements

Hi Carol,

Is this author Nickolas Perricone? Is The Perricne Pricipal a book? Where would I find it?

Thanks

ette

September 29, 2008

I'm not sure where you live, but Dr. Leightman is the formost expert on the Targeted Nutritional Intervention AND Piracetam and other drugs....I would highly recommend a consultation with him. He changed from Piracetam to Namenda, but I believe he only wanted to do the Namenda after puberty.

Also, 6 months is fine for the vitamins, but definately consult with Dr. Leightman before starting Piracetam that early--might be fine, but I'm not sure.

, 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

[DownSyndromeInfoExchange] Supplements

I'm hoping you all will share your thoughts about the available supplements out there. We took Sophia to the geneticist when she was 6 mos. for a check up. I asked him about piracetam, etc at this appointment and his response basically was snake oil. My pediatrician has the same opinion. I've tried to read up on supplements and it makes sense that our childrens' bodies metabolize things differently due to their extra chromosome so I'm some what confused on the whole matter. I would like to hear what supplements others are taking and your experiences with them. I would also like to hear other's opinions on any and all supplements.A lot of you guys seem so knowledgeable about all things Down Syndrome so I'm hoping you guys have some good feedback!Ruby and Ethan, Max, , Drew and Sophia Ds

September 30, 2008

Well, i usually agree with , but i have been to Dr. Leichtman, and i

personally think that a good GP can usually handle the supplements issue without

a problem (is s/he has an open mind and is willing for you to try it)

I gave the info about NVD to Danny's GP when Danny was about 15 months old..the

doc looked it over, said that the rationale for using it made sense...if I gave

it in the doses recommended, it couldn't hurt him and it might help. After Danny

had been on it for several months, and the doc could see the remarkable gains in

his health (Danny had literally been at the doc's office at least once a week

since birth )except when he was hospitalized) the doc wrote a letter to the

insurance co to ask them to cover the expense..and they, in their boundless

wisdom, said that they would only cover nutritional supplements if Danny had a

feeding tube..never mind that he was much healthier and saving THEM money by

being on the supplement)

If/when you do start the supplements, start them low and slow (1/4 of the daily

dose three times a day for a week...then 1/2 the dose three times a day for a

week...then once Sophia is up to the whole dose for a week and doing well, add

the daily enzymes at a reduces dose and gradually increase.. That way, if

something gives her trouble, you will know what is causing it (the supplements

have caused an upset stomach or diarrhea in some kids..if Sophia has reflux, do

not use the daily enzymes, because refluxing those can cause damage to the

esophagus.

Piracetam is not recommended before 6 months of age.

Danny has been on NVD for about 8 1/2 yrs now...gets yearly labs to make sure he

is not getting overdosed...actually, I don't give him the full dose for his age

at present, because it seemed like he was peeing most of it away(urine was very

dark and strong smelling in the morning, even though he drinks a lot before he

went to bed) He seems to be doing well on a reduced dose...he eats very well,

loves salad, etc.

he takes NVD, daily enzymes, 60 mg gingko, omega 3 oil, blueberry extract, TMG.

I give him his thyroid med on an empty stomach at least an hour before he

eats,,and the supplements no sooner than 4 hours later.

look on the Riverbend site for dosage recommendations and a lot of other

information...google 'riverbend down syndrome' (without the ' ' )to find the

site ( that is an easy way to always be able to find the site if you haven't

bookmarked it)

KathyR(mom to Danny 10 yrs old)

--------- [DownSyndromeInfoExchange] Supplements

I'm hoping you all will share your thoughts about the available supplements out there. We took Sophia to the geneticist when she was 6 mos. for a check up. I asked him about piracetam, etc at this appointment and his response basically was snake oil. My pediatrician has the same opinion. I've tried to read up on supplements and it makes sense that our childrens' bodies metabolize things differently due to their extra chromosome so I'm some what confused on the whole matter. I would like to hear what supplements others are taking and your experiences with them. I would also like to hear other's opinions on any and all supplements.A lot of you guys seem so knowledgeable about all things Down Syndrome so I'm hoping you guys have some good feedback!Ruby and Ethan, Max, , Drew and Sophia Ds

September 30, 2008

I would definitely ask around as many people have a very poor opinion of him and felt he was not worth the money. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join 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: [DownSyndromeInfoExchange] Supplements

Well, i usually agree with , but i have been to Dr. Leichtman, and i personally think that a good GP can usually handle the supplements issue without a problem (is s/he has an open mind and is willing for you to try it)

I gave the info about NVD to Danny's GP when Danny was about 15 months old..the doc looked it over, said that the rationale for using it made sense...if I gave it in the doses recommended, it couldn't hurt him and it might help. After Danny had been on it for several months, and the doc could see the remarkable gains in his health (Danny had literally been at the doc's office at least once a week since birth )except when he was hospitalized) the doc wrote a letter to the insurance co to ask them to cover the expense..and they, in their boundless wisdom, said that they would only cover nutritional supplements if Danny had a feeding tube..never mind that he was much healthier and saving THEM money by being on the supplement)

If/when you do start the supplements, start them low and slow (1/4 of the daily dose three times a day for a week...then 1/2 the dose three times a day for a week...then once Sophia is up to the whole dose for a week and doing well, add the daily enzymes at a reduces dose and gradually increase.. That way, if something gives her trouble, you will know what is causing it (the supplements have caused an upset stomach or diarrhea in some kids..if Sophia has reflux, do not use the daily enzymes, because refluxing those can cause damage to the esophagus.

Piracetam is not recommended before 6 months of age.

Danny has been on NVD for about 8 1/2 yrs now...gets yearly labs to make sure he is not getting overdosed... actually, I don't give him the full dose for his age at present, because it seemed like he was peeing most of it away(urine was very dark and strong smelling in the morning, even though he drinks a lot before he went to bed) He seems to be doing well on a reduced dose...he eats very well, loves salad, etc.

he takes NVD, daily enzymes, 60 mg gingko, omega 3 oil, blueberry extract, TMG. I give him his thyroid med on an empty stomach at least an hour before he eats,,and the supplements no sooner than 4 hours later.

look on the Riverbend site for dosage recommendations and a lot of other information. ..google 'riverbend down syndrome' (without the ' ' )to find the site ( that is an easy way to always be able to find the site if you haven't bookmarked it)

KathyR(mom to Danny 10 yrs old)

-

September 30, 2008

I am one of those. Our insurance did not cover Dr. Leichtman's assessment, and it was quite a lot of money. He didn't tell us ANYTHING about Tristan we didn't already know. I have been very blessed with open-minded (if not a little conservative) doctors who have done their best to help Tristan.

Shari

I would definitely ask around as many people have a very poor opinion of him and felt he was not worth the money.

Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join 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: [DownSyndromeInfoExchange] Supplements

Well, i usually agree with , but i have been to Dr. Leichtman, and i personally think that a good GP can usually handle the supplements issue without a problem (is s/he has an open mind and is willing for you to try it)

I gave the info about NVD to Danny's GP when Danny was about 15 months old..the doc looked it over, said that the rationale for using it made sense...if I gave it in the doses recommended, it couldn't hurt him and it might help. After Danny had been on it for several months, and the doc could see the remarkable gains in his health (Danny had literally been at the doc's office at least once a week since birth )except when he was hospitalized) the doc wrote a letter to the insurance co to ask them to cover the expense..and they, in their boundless wisdom, said that they would only cover nutritional supplements if Danny had a feeding tube..never mind that he was much healthier and saving THEM money by being on the supplement)

If/when you do start the supplements, start them low and slow (1/4 of the daily dose three times a day for a week...then 1/2 the dose three times a day for a week...then once Sophia is up to the whole dose for a week and doing well, add the daily enzymes at a reduces dose and gradually increase.. That way, if something gives her trouble, you will know what is causing it (the supplements have caused an upset stomach or diarrhea in some kids..if Sophia has reflux, do not use the daily enzymes, because refluxing those can cause damage to the esophagus.

Piracetam is not recommended before 6 months of age.

Danny has been on NVD for about 8 1/2 yrs now...gets yearly labs to make sure he is not getting overdosed... actually, I don't give him the full dose for his age at present, because it seemed like he was peeing most of it away(urine was very dark and strong smelling in the morning, even though he drinks a lot before he went to bed) He seems to be doing well on a reduced dose...he eats very well, loves salad, etc.

he takes NVD, daily enzymes, 60 mg gingko, omega 3 oil, blueberry extract, TMG. I give him his thyroid med on an empty stomach at least an hour before he eats,,and the supplements no sooner than 4 hours later.

look on the Riverbend site for dosage recommendations and a lot of other information. ..google 'riverbend down syndrome' (without the ' ' )to find the site ( that is an easy way to always be able to find the site if you haven't bookmarked it)

KathyR(mom to Danny 10 yrs old)

-

September 30, 2008

>

> I would definitely ask around as many people have a very poor

opinion of him and felt he was not worth the money.

>

> Carol in IL

> Mom to , 8 DS

>

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

>

> VOTE NOBAMA '08

>

> 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: [DownSyndromeInfoExchange] Supplements

>

> Well, i usually agree with , but i have been to Dr.

Leichtman, and i personally think that a good GP can usually handle

the supplements issue without a problem (is s/he has an open mind and

is willing for you to try it)

> I gave the info about NVD to Danny's GP when Danny was about 15

months old..the doc looked it over, said that the rationale for using

it made sense...if I gave it in the doses recommended, it couldn't

hurt him and it might help. After Danny had been on it for several

months, and the doc could see the remarkable gains in his health

(Danny had literally been at the doc's office at least once a week

since birth )except when he was hospitalized) the doc wrote a letter

to the insurance co to ask them to cover the expense..and they, in

their boundless wisdom, said that they would only cover nutritional

supplements if Danny had a feeding tube..never mind that he was much

healthier and saving THEM money by being on the supplement)

> If/when you do start the supplements, start them low and slow (1/4

of the daily dose three times a day for a week...then 1/2 the dose

three times a day for a week...then once Sophia is up to the whole

dose for a week and doing well, add the daily enzymes at a reduces

dose and gradually increase.. That way, if something gives her

trouble, you will know what is causing it (the supplements have

caused an upset stomach or diarrhea in some kids..if Sophia has

reflux, do not use the daily enzymes, because refluxing those can

cause damage to the esophagus.

> Piracetam is not recommended before 6 months of age.

> Danny has been on NVD for about 8 1/2 yrs now...gets yearly labs to

make sure he is not getting overdosed... actually, I don't give him

the full dose for his age at present, because it seemed like he was

peeing most of it away(urine was very dark and strong smelling in the

morning, even though he drinks a lot before he went to bed) He seems

to be doing well on a reduced dose...he eats very well, loves salad,

etc.

> he takes NVD, daily enzymes, 60 mg gingko, omega 3 oil, blueberry

extract, TMG. I give him his thyroid med on an empty stomach at

least an hour before he eats,,and the supplements no sooner than 4

hours later.

> look on the Riverbend site for dosage recommendations and a lot of

other information. ..google 'riverbend down syndrome' (without

the ' ' )to find the site ( that is an easy way to always be able

to find the site if you haven't bookmarked it)

> KathyR(mom to Danny 10 yrs old)

> -

>

Kathy,

Thank you for the detailed info regarding supplements. I have a son

(3.5 mos) who had been on ntv pre surgery for soft larynx and post

surgery has been difficult getting him back on due to feeding issues.

He is now feeding better and stronger so I started up again and was

going to add enzymes once again only to read I shouldn't since he

does have reflux. I am holding off on Nighttime formula until things

are more settled. He sleeps very well but if I understand correctly

the nightime formula is for increase in his growth hormone, correct?

Also, since nursing , unfortunately, down to 2x/day perhaps I should

start on Omega 3 directly. How would you suggest I proceed with

Piracetam , and what is this for? Last, gingko not sure when to begin

with this product although have read on this site why it is being

used.

Thank you for any info and clarification... I am trying to keep up

with this info and care for this beautiful little baby and it seems I

can't keep up with all the supplement info at times.

Margie

September 30, 2008

We love MonaVie at our household.......

Tara Marie

http://www.emmasage.blogspot.com

I would have to agree with Carol on that fantastic book by Perricone, THE PERRICONE PROMISE...On p 62, he speaks on the Number 1 SUPER FOOD in the WORLD!..The ACAI BERRY which contains the highest level of antioxidants know to man, which helps reduce oxidative stress and free radicals in our bodies. As we all know, antioxidants have been in the news alot lately and are extremely beneficial to our bodies.

Here's a short video explaining oxidative stress and free radicals

http://www.thegreatproduct.com/corp/video-antioxidants.asp

The best source that we have found that contains the freeze-dried acai, which is unparalleled in it's antioxidant strength, is the juice MonaVie, which contain 18 other fruits as well. On the ORAC (Oxygen Radical Absorbance Capacity) Scale, four ounces of MonaVie has the equilavent antioxidant capacity of approx. 13 servings of fruits and vegetables. Who consumes this much fruit every day? ! My son who is 19 has been drinking this since February and LOVES IT!!. He has never been able to swallow pills or vitamins, and through the years I have had to crush up supplements etc. He has never been a great eater, especially when it comes to veggies. He will tyically drink 6-8 oz per day.

MonaVie can be purchased from yourself when you become a distributor. After the first time Zach tasted it, he said " Sign me Up! " . We had it in the house 2 weeks before he would taste it because it comes in a beautiful bottle that looks like WINE! We don;'t drink, so he got upset with us thinking that's what it was...So he buys this AWESOME Product from himself and SHARES it, doesn't SELL IT, with everyone he comes in contact with! Feel free to email him for further info on MonaVIe at zachluvsmonavie@...

Thanks,

Debbie Pressley

Subject: Re: [DownSyndromeInfoExchange] SupplementsTo: DownSyndromeInfoExchange

Date: Monday, September 29, 2008, 2:46 PM

http://tinyurl. com/3j89yySorry it's The Perricone PROMISE by Perricone

Most libraries have it, and lots of the half price book stores. He is often on PBS during their fund drives too.

The Zone is very much the same, in fact Perricone recommends The Zone but he adds lots of foods that contain omega 3's and anti-oxidents as well. It's all about controlling blood sugar spikes.

Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join 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] Supplements

Hi Carol,

Is this author Nickolas Perricone? Is The Perricne Pricipal a book? Where would I find it?

Thanks

ette

September 30, 2008

Hello Tara Marie,

Glad to find another "MonaVier"!!! Did you have an opportunity to attend the SLC or Orlando conventions? What part of the country do you live? We are in the ATLANTA AREA!1 And what about MONAVIE PULSE??!!

Debbie P

From: Carol in IL <ps1272000yahoo (DOT) com>Subject: Re: [DownSyndromeInfoEx change] SupplementsTo: DownSyndromeInfoExc hange@yahoogroup s.comDate: Monday, September 29, 2008, 2:46 PM

http://tinyurl. com/3j89yySorry it's The Perricone PROMISE by Perricone Most libraries have it, and lots of the half price book stores. He is often on PBS during their fund drives too.

The Zone is very much the same, in fact Perricone recommends The Zone but he adds lots of foods that contain omega 3's and anti-oxidents as well. It's all about controlling blood sugar spikes. Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join 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] Supplements

Hi Carol,

Is this author Nickolas Perricone? Is The Perricne Pricipal a book? Where would I find it?

Thanks

ette

September 30, 2008

Hi Margie-

Piracetam isn’t generally recommended until the baby is at

least 6 months old..some say that it helps ‘wake up’ the brain When

I started Danny on it, he was about 20 months old…someone had reported

that it really helped their child with speech, so I was very excited about

trying it…it didn’t help his speech at all, but it did seem to help

shorten his reaction times,..and he seemed to understand things more readily..i

kept him on it because I heard that it had gave antioxidant protection to the

brain, but I never found any literature to support that …after a while, I

tried taking him off of it to see if there was any difference, and there wasn’t,

so I stopped giving it to him.

Gingko is not recommended for kids under 6, although I know that

there are some families giving it to much younger kids.2

I used to give Danny the Nighttime formula, but it was hard for

us to time it right…you have to give it about a half hour before the child

goes to bed, and you can’t give it with a protein source, because that

tends to get the child too ‘wired’ to sleep.

I know that all kids are different, but Danny doesn’t seem

to have a problem with growing once he started on thyroid med…he is 10

yrs old, 4’4” tall and 82#...so you may not even need it.

The Riverbend site has an excellent section on supplements…really

comprehensive.

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of thedoyles2008

Sent: Tuesday, September 30, 2008 4:48 PM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] Re: Supplements