RE: SCD& Changing Minds Statement

November 5, 2008

I agree with you on some of your points, Janice….on the Ds

leaders’ list, the topic has been declared out of bounds (as have nutritional

supplements and abortion…the owner of the list even refused to let the

president of the new International Down Syndrome Coalition for Life join the Ds

leaders’ list because he said we can’t talk about abortion on that

list..90% of babies w/Ds are aborted, yet we are not allowed to even talk

about it. Didn’t even tell her that she could join if she promised not to

talk about abortion. Just denied her membership based on the name of her

organization. Incredible.

How can parents make an informed choices about ANYTHING unless

they are given all of the facts…pro and con?

Personally, I am not using the Changing Minds protocol until it

has been studied in humans and found to be safe. But that is my CHOICE. I

think that parents should be given the information, we should be told that the

protocol has NOT been studied in humans yet, so parents should be very aware of

that..they should be also be aware that we don’t know if there will be

any long term side effects (damaging)

I feel badly for Cody, because I believe that she is sincere,

and she really wants to help others…and I have seen the Changing a Mind

dvd, and the changes in her son are just amazing. BUT,,,I am still not

convinced that the benefits outweigh the possible risks at this point.

I do believe, though, in this case, the docs are acting out of

concern, because there might be some parents who would give the protocol to

their child without fully understanding what is involved, and kids COULD get

hurt. But I have also gotten the impression, many times, that professionals

tend to pat parents on the head and tell us..’now, don’t you worry

your pretty little head about this…you can’t possibly understand,

so just let us tell you what to think.”

And I REALLY resent it when someone makes a blanket statement

(for example) about nutritional supplements not working for kids with Ds..and

imply that parents who say they see positive results in their kids are

delusional or just plain stupid.

KathyR

From:

DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Carol in

IL

Sent: Wednesday, November 05, 2008 10:41 AM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

I'm glad it

made sense. The book will make more sense and continue reading everything on

those sites.

Soy is illegal on SCD and causes lots of problems, so that alone could be an

on-going issue for his gut. There are no grains of any kinds allowed. It's a

tough diet, but for , it turned out to be the 'easy' way out. :-)

And to a certain degree, it's is just the DS causing the problems. ;-) The

doctors though don't know much about nutrition nor do they seem to think that

what you eat makes any difference to gut health! Elaine had a LOT to say on

that matter. The history of celiac disease and diet is very interesting

too.

Anyway- it wouldn't hurt anyone to try it. The first month is HORRIBLE and most

kids feel AWFUL... very awful. Then almost like magic, there is a switch that

happens and suddenly they seem to be starving and wanting to eat foods they

would never before consider or it even made them sick to try. According

to adults who have done this diet, food actually changes how it tastes. Before

SCD they said many healthy foods made them want to vomit and after wards, it

all tasted so wonderful to them. Go figure? But the self limiting diet is VERY

common prior to SCD.

I do totally disagree with your assesment of the statement posted regarding the

CM protocol.

Did you happen to look at all those who signed it? People who are very

activiely seeking a cure signed that statment, some of whom are parents and

relatives to people with DS. Mobley was part of the orignal team that used the

protocol in the mice. They do not view parents as ignorant at all!

Everyone wants to find a cure, what they are concerned about is GM promoting

this as though it were a scientific and proven fact when it is not. That is all

that statement says and to use the protocol as it's being promoted is taking a

very large risk since it has not been proven to work nor does anyone know the side

effects. Everyone is free to do as they wish of course, but they do want

to let everyone know that using the protocol is pure experimentation at this

point.

So again... if you want to find out if this will work or not in real people-

send money to research!

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/

http://downsyndromeinfoexchange.blogspot.com/

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

From: Jannette Janson de de la Lastra

To: DownSyndromeInfoExchange

Sent: Tuesday, November 4, 2008 3:23:18 PM

Subject: Re: [DownSyndromeInfoExchange] The Great Plains Laboratory,

Inc.

HI Carol,

It makes

perfect sense. I have had a feeling that has something in his

gut always but since he does not have an unstopable diarreah the doctor

thinks is just the " Down Syndrome " . I get so tired of this

sometimes, it is the easy way out!

Then I read

statements like the one about the Changing Minds Foundation and, I do not

know if it is only me and I am reading more than there is, but it upsets me

to see all this " professionals " talking as if they were the owners

of the truth and talking down on someone that is trying to actually do

something more than testing mice.

As I

understood from what I read on the Changing Minds site it is clearly stated

that parents need the guidance of a professional and I

also understood that the DVD is a way to raise funds to further test the

protocol. It actualy asks for scientist to do the appropiate tests

of the protocol. And what gets me the most, is that I read between

the lines " you poor parents of kids with DS we understand that you want

to help your kids but we know better " . It gives me the impression

that they figure we are not intelligent enough to read, understand and take

our own desicions. Many times I feel that not only our

kids face prejudice, but we as parents do too and many times from the

very professional that care for our kids.

I think

and all the team at the foundation are very brave and kind in wanting to

share what they have found up to now and I hope they get the funding they

need to scientifically test the protocol.

All medicines,

have pros and cons, and side effects and it is for the parents to decide with

the doctors what is best in the interest of their child.

Now back to

the gut. Actually up to now the only thing eats that is from a

can is the soy milk, bread, nuts, raisins, the rest of his food is all made

at home with no sugar or white flour. I was actually pleasently

surprised on his birthday because we made a chocolate cake and I gave him

some since he was in school and all his classmates were eating. He

tasted the cake, took it out of his mouth, out of his plate.

Instead he got his fruit and snack and eat it. He does not eat or

drink dairy products either.

I have read

some information from Doctor Rodney Ford that has written several books about

celiac deseas, gluten intolerance etc and how gluten can actually affect the

brain. It is interesting.

I will read

the book about the diet and try it out. Thank you.

Jannette

--- Em ter, 4/11/08, Carol in IL <ps1272000yahoo (DOT) .com>

escreveu:

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

Assunto: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.

Para: DownSyndromeInfoExc hange@yahoogroup s.com

Data: Terça-feira, 4 de Novembro de 2008, 1:13

Thank you

Carol for all the urls!

Janette,

There is really very little on the market today that does

not have sugar in it. Even if the label says, 'No added sugar' you can bet it

still has it. One of the only juices out there that really don't is,

Welch's Grape juices in the bottles, not the cans and just the white and

purple plain grape juices. Oh.. and Tropicana OJ- again the plain.

Everything on the SCD is homemade to avoid eating any illegals as they say.

The basis of the diet is to only eat foods that have single sugars and are

very easy to digest. The practically digest themselves. :-) And in doing so,

relieve the gut of the work, allows it heal and doesn't any undigested food

behind to feed the nasty gut bugs that have often gotten all out of whack by

a gut that doesn't function well.

If you can't digest your food, obviously you are not getting enough nutrition

and your gut flora is not going to allow your gut to function correctly and

that can cause problems with your immune system both weakening it and also

causing aut-immune problems. This often begins with people developing more

and more food 'allergies' as their gut becomes worse.

Left go long enough, serotonin production slows way down and that can start

to cause sleep and behavior problems too. ( I forget the exact number now,

but I think the gut produces 80% of the bodies serotonin)

This is the enzyme I have used with . I don't have to use

them much anymore, though I can say *I* have been taking it more and more,

and they really work!

Each person is totally different, and I could not predict how a child's gut

would heal, or what path you should take. All I can offer if what worked for

. and this diet worked a miracle. :-)

I hope this makes sense, feel free to ask questions.

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/

http://downsyndrome infoexchange. blogspot. com/

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

From: Jannette Janson

de de la Lastra <jannettejanson@ yahoo.com. br>

To: DownSyndromeInfoExc hange@yahoogroup s.com

Sent: Saturday, November 1, 2008 7:46:46 PM

Subject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory,

Inc..

What is

" SCD " ?

The

interesting thing about this is that my son does not eat any dairy

products, and the only wheat he has is bread for breakfast and sometimes

pasta (both whole grain). He does not eat any sugar either, only the

one in natural fruits and natural honey.

I never gave

him packed or canned foods and the only cookies he has eaten I make at home

without artificial color.

THis week by

chance I discovered that the milk (soy milk) that he was drinking has sugar

in it. I bought the " light " version of the soy milk by

mistake and gave it to him and I noticed that his stool changed

dramatically (a more consistent and normal appearance - a lot less

undigested food). I wonder if it is that the light version does not

have sugar among its ingredientes? Could such a small amount of sugar

make a difference? This was the only change in his diet that I can

think of.

Thanks,

Jannette

--- Em sáb, 1/11/08, Carol in IL <ps1272000yahoo (DOT) com>

escreveu:

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

Assunto: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.

Para: DownSyndromeInfoExc hange@yahoogroup s.com

Data: Sábado, 1 de Novembro de 2008, 17:22

If

you " Breaking the Vicious Cycle " It explains why milk is

often the first sign of a dysfunctional gut, also gluten. It's not really

an allergy, it's that the gut is 'wounded' and can't produce the enzymes

needed to digest those foods. Heal the gut, and the enzymes will begin to

be made by the gut again. Elaine Gottschall never had much good to say

about spending money on allergy tests for the gut. I did do it, and it told

me just what Elaine said it would, and it healed, also as Elaine said it

would.

5 years ago could not tolerate ANY wheat or sugars, yesterday she

ate 2 Oreo cookies and NO side effects. It's amazing how the SCD has healed

her gut, just amazing.

Now I as get older I have noticed my body does not like dairy or wheat much

anymore, a common side effect of aging, and so if I stay away from it or

take enzymes, I do much better.

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/

http://downsyndrome infoexchange. blogspot. com/

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

From: Keener

To: DownSyndromeInfoExc hange@yahoogroup s.com

Sent: Saturday, November 1, 2008 2:10:15 PM

Subject: Re: [DownSyndromeInfoEx change] The Great Plains

Laboratory, Inc.

Hi

Jannette!

Interesting

study, even if I could only understand a small percentage of all that

medical jargon. It's got me wondering if I could ever get 's

pediatrician to read it. I'd love to have him order that allergy

testing for . I've heard it's really expensive, but if his

pediatrician would order it and insurance would pay for it, that would be

great!

Like your

son, 's stools have never been normal. After he started

eating pureed baby food and cereal, he had a lot of trouble with

constipation Now that he eats some table food, he has the

opposite problem. His stools are almost always extremely loose and

sloppy with undigested food in them. I can't see how the undigested

food is going to do him any good, so I've gone back to putting certain

things through the little food mill, which makes textured ground. I

do this with whatever foods tend to come through whole, like soft-cooked

green beans, peas, and carrots. I never give him corn as it is so

hard to digest. I guess he must just swallow most things without

chewing, and since digestion begins in the mouth as the food is chewed

and mixed with saliva, it's not happening. His stools are a little

better when I give him ground food, but I think there are other

things that affect his stools. Like all the supplements I give him,

for example. But I don't know for sure which one or which ones

are giving him loose stools, though I suspect certain ones. And

does the benefit of the supplement outweigh the side effect of loose

stools?

I, too,

have heard that gluten and dairy are often the culprits for what ails our

kids, even if they don't actually have celiac disease. They may

just have a sensitivity to gluten and dairy, and sugar is another thing

that seems to only add to their problems. So, about 6 or 7 months

ago, I decided to eliminate gluten, dairy, and sugar from 's

diet. He has adjusted to that just fine, and while he is still

having asthma trouble whenever he gets a cold, he doesn't seem to

be getting as sick with it as he used to. And he has gained

weight beautifully in the last 6 months! His pediatrician is

finally pleased with both his weight and height. So, I think

the change in his diet has benefited him. And we have been able to

get raw goat's milk for him, which he loves, so I think that

has also helped him to gain weight.

Our whole

family has been doing this together, so that helps tremendously. We

do allow oats and rice, and you can get oat flour and rice flour for

baking. Our main sweeteners are stevia and xylitol. A little

honey, occasionally. 's favorite treat is banana bread.

He also loves fruit smoothies.

If you

want to know anything else, you are welcome to email me.

Blessings!

(one and only wife to

Fred; mom to Kari, Melody, Faith, Heidi, Isaac, Josiah, , Alana, and

! Yes, they're all ours!)

Is. 40:31 " They that wait upon the Lord shall

renew their strength; they shall mount up with wings as eagles, they

shall run and not be weary, they shall walk and not faint. "

From: Jannette Janson de de la Lastra

<jannettejanson@ yahoo.com. br>

Subject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory,

Inc.

To: DownSyndromeInfoExc hange@yahoogroup s.com

Date: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten

intolerance, diets etc. and I found this laboratory. The Great

Plains Laboratory, Inc. directed by Dr. Shaw, PhD he is the

author of Biological Treatments for Autism and PDD.

It call my attention that under Health Conditions

they do have Down Syndrome and at the end of the article there is an

option to see a slide presentation made by Dr. Shaw about Down

Syndrome. It seems interesting. If anyone wants to check it

out the site is:

http://www.greatpla inslaboratory. com/home/

eng/downssyndrom e.asp

The reason I am looking for this information is

because since my son started eating foods as a baby his stool has never

been normal. It is not diarrea, but close, and he always has

undigested foods in his stool. Has anyone experienced this?

ANy suggestions?

My concern is that he might not be getting the

nutrients he needs. Even though he is growing, he is always

underweight for his hight.

None of my kids have been shuby babys but they were

never underweight.

Jannette

Novos

endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou

@rocketmail. com.

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou

@rocketmail. com.

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou

@rocketmail. com.

November 6, 2008

Thank you all who wrote to me about what I said about the statement. I value all the opinions even the ones that do not agree with me, actually this is what I like about this list and I learn a lot from this.

The truth is that I understood from the beginning, from the Changing Minds Foundation site and also from some posts here of members that went to the presentation of the DVD that this is a protocol that has not been tested extensively or scientifically proven. I thought that was very clear, and that the choice of trying it or not is with the parents always consulting a doctor, thus I saw no point to the statement.

I myself started my son on the Gingko but am afraid of the Prozac or the Focalin. This is something that I will have to study a lot more with a doctor if I ever consider giving it to my son. (I do not like this type of medicines in general).

I guess the statement bothered me the most because I did read the list of people who signed it and I â€œknowâ€ (I have read their work, watch presentation, know some curriculums) some of them; therefore my expectations were a lot higher from a group of people like this one. I was disappointed.

The feeling I got after reading the statement was the same I got once I had to go to a meeting in my middle sonâ€™s school. He was having some trouble and I was called in, sat with 3 teachers that spent around 30 minutes telling me everything that was â€œwrongâ€ with my son or everything that he could not do and at the end when I expected them to tell me what they would do to help him and some advice on what I should do to help him they simply said that they would â€œwait and seeâ€ what happened until the end of the year!!!! UGH??? I know what happens when you do nothingâ€¦exactly that NOTHING HAPPENS!! (My son is in a different school now).

I read this extremely long statement to tell me something I already knew, the protocol is not scientifically proven and the possible side effects are not know, so?? I did not read anything that lead me to think that this group of people would do something about it. Maybe get together like they did to write the statement and make a fundraiser to make a clinical study or to help the one ongoing? Maybe warn the parents but encourage them to support an organization to conduct the study, even though this is what I understand that the Changing Minds Foundation is doing.

On the other hand, I believe that a statement like this does the contrary and people who would donate to the Changing Mind foundation may be discouraged to do so because of the tone in which the statement is written.

I think it is appropriate to tell the parents the truth and I can also see that kids could get hurt with irresponsible parents, (and I am not referring to parents that are using the protocol with the help of their doctors), but that is something no one can really prevent.

The following line got my attention and made me think a lot:

â€œThe Changing Minds Foundation promotional videos do not prove the claims of benefit from the protocol. While the people shown are clearly doing well, none of the individuals shown are functioning beyond the wide range seen in others with the syndrome. Claimed changes following â€˜treatmentâ€™ could be the result of many factors. Only a controlled trial can give clear evidence of treatment effects.â€

From this statement I get that they are looking for a â€œone size fits allâ€? that I personally, in my ignorance I may add, see very difficult to find. I believe that even the effects or benefits of Occupational Therapy, Physiotherapy etc. are different in each kid with DS otherwise all kids that had the early intervention would walk, talk etc. at the same age and I donâ€™t see this happening. Also the results from these therapies are affected by other factors like the family environment, habits etc. and I have not heard of anyone claiming that because of that it is not proven that the early intervention helps.

If my son has a problem with his gut, diarrhea and the diet cures him then he improved!!! I can not compare my son with the range of individuals with DS. If my son was not able to read even after all my efforts and after taking the protocol something happened and he started reading then he improved!! Thus even though this individuals are not out of the â€œrangeâ€ they improved from where they where at and I am sure that it is not only because of the protocol but because of the combination of the protocol with everything else that was being done but the protocol must have helped.

I guess the thing is I did not find the statement as being merely informative and neutral, I found it negative and It may be what someone mentioned. Professional jealousy, or maybe because it was a mothers idea and this is forbidden territory for parents?? I donâ€™t knowâ€¦Then again this is only my perception.

Jannette--- Em qua, 5/11/08, Kathy Ratkiewicz escreveu:

De: Kathy Ratkiewicz Assunto: RE: [DownSyndromeInfoExchange] SCD & Changing Minds StatementPara: DownSyndromeInfoExchange Data: Quarta-feira, 5 de Novembro de 2008, 19:39

I agree with you on some of your points, Janiceâ€¦.on the Ds leadersâ€™ list, the topic has been declared out of bounds (as have nutritional supplements and abortionâ€¦the owner of the list even refused to let the president of the new International Down Syndrome Coalition for Life join the Ds leadersâ€™ list because he said we canâ€™t talk about abortion on that list..90% of babies w/Ds are aborted, yet we are not allowed to even talk about it. Didnâ€™t even tell her that she could join if she promised not to talk about abortion. Just denied her membership based on the name of her organization. Incredible.

How can parents make an informed choices about ANYTHING unless they are given all of the factsâ€¦pro and con?

Personally, I am not using the Changing Minds protocol until it has been studied in humans and found to be safe. But that is my CHOICE. I think that parents should be given the information, we should be told that the protocol has NOT been studied in humans yet, so parents should be very aware of that..they should be also be aware that we donâ€™t know if there will be any long term side effects (damaging)

I feel badly for Cody, because I believe that she is sincere, and she really wants to help othersâ€¦and I have seen the Changing a Mind dvd, and the changes in her son are just amazing. BUT,,,I am still not convinced that the benefits outweigh the possible risks at this point.

I do believe, though, in this case, the docs are acting out of concern, because there might be some parents who would give the protocol to their child without fully understanding what is involved, and kids COULD get hurt. But I have also gotten the impression, many times, that professionals tend to pat parents on the head and tell us..â€™now, donâ€™t you worry your pretty little head about thisâ€¦you canâ€™t possibly understand, so just let us tell you what to think.â€

And I REALLY resent it when someone makes a blanket statement (for example) about nutritional supplements not working for kids with Ds..and imply that parents who say they see positive results in their kids are delusional or just plain stupid.

KathyR

From: DownSyndromeInfoExc hange@yahoogroup s.com [mailto:DownSyndrom eInfoExchange@ yahoogroups. com] On Behalf Of Carol in ILSent: Wednesday, November 05, 2008 10:41 AMTo: DownSyndromeInfoExc hange@yahoogroup s.comSubject: [DownSyndromeInfoEx change] SCD & Changing Minds Statement

I'm glad it made sense. The book will make more sense and continue reading everything on those sites. Soy is illegal on SCD and causes lots of problems, so that alone could be an on-going issue for his gut. There are no grains of any kinds allowed. It's a tough diet, but for , it turned out to be the 'easy' way out. :-) And to a certain degree, it's is just the DS causing the problems. ;-) The doctors though don't know much about nutrition nor do they seem to think that what you eat makes any difference to gut health! Elaine had a LOT to say on that matter. The history of celiac disease and diet is very interesting too.Anyway- it wouldn't hurt anyone to try it. The first month is HORRIBLE and most kids feel AWFUL... very awful. Then almost like magic, there is a switch that happens and suddenly they seem to be starving and wanting to eat foods they would never before consider or it even made

them sick to try. According to adults who have done this diet, food actually changes how it tastes. Before SCD they said many healthy foods made them want to vomit and after wards, it all tasted so wonderful to them. Go figure? But the self limiting diet is VERY common prior to SCD.I do totally disagree with your assesment of the statement posted regarding the CM protocol.Did you happen to look at all those who signed it? People who are very activiely seeking a cure signed that statment, some of whom are parents and relatives to people with DS. Mobley was part of the orignal team that used the protocol in the mice. They do not view parents as ignorant at all! Everyone wants to find a cure, what they are concerned about is GM promoting this as though it were a scientific and proven fact when it is not. That is all that statement says and to use the protocol as it's being promoted is taking a very large risk since it has not

been proven to work nor does anyone know the side effects. Everyone is free to do as they wish of course, but they do want to let everyone know that using the protocol is pure experimentation at this point.So again... if you want to find out if this will work or not in real people- send money to research!

Carol in ILMom 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/http://downsyndrome infoexchange. blogspot. com/Listen to oldest dd's music http://www.myspace. com/vennamusic

From: Jannette Janson de de la Lastra <jannettejanson@ yahoo.com. br>To: DownSyndromeInfoExc hange@yahoogroup s.comSent: Tuesday, November 4, 2008 3:23:18 PMSubject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.

HI Carol,

It makes perfect sense. I have had a feeling that has something in his gut always but since he does not have an unstopable diarreah the doctor thinks is just the "Down Syndrome". I get so tired of this sometimes, it is the easy way out!

Then I read statements like the one about the Changing Minds Foundation and, I do not know if it is only me and I am reading more than there is, but it upsets me to see all this "professionals" talking as if they were the owners of the truth and talking down on someone that is trying to actually do something more than testing mice.

As I understood from what I read on the Changing Minds site it is clearly stated that parents need the guidance of a professional and I also understood that the DVD is a way to raise funds to further test the protocol. It actualy asks for scientist to do the appropiate tests of the protocol. And what gets me the most, is that I read between the lines "you poor parents of kids with DS we understand that you want to help your kids but we know better". It gives me the impression that they figure we are not intelligent enough to read, understand and take our own desicions. Many times I feel that not only our kids face prejudice, but we as parents do too and many times from the very professional that care for our kids.

I think and all the team at the foundation are very brave and kind in wanting to share what they have found up to now and I hope they get the funding they need to scientifically test the protocol.

All medicines, have pros and cons, and side effects and it is for the parents to decide with the doctors what is best in the interest of their child.

Now back to the gut. Actually up to now the only thing eats that is from a can is the soy milk, bread, nuts, raisins, the rest of his food is all made at home with no sugar or white flour. I was actually pleasently surprised on his birthday because we made a chocolate cake and I gave him some since he was in school and all his classmates were eating. He tasted the cake, took it out of his mouth, out of his plate. Instead he got his fruit and snack and eat it. He does not eat or drink dairy products either.

I have read some information from Doctor Rodney Ford that has written several books about celiac deseas, gluten intolerance etc and how gluten can actually affect the brain. It is interesting.

I will read the book about the diet and try it out. Thank you.

Jannette--- Em ter, 4/11/08, Carol in IL <ps1272000yahoo (DOT) .com> escreveu:

De: Carol in IL <ps1272000yahoo (DOT) com>Assunto: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.Para: DownSyndromeInfoExc hange@yahoogroup s.comData: TerÃ§a-feira, 4 de Novembro de 2008, 1:13

Thank you Carol for all the urls!Janette, There is really very little on the market today that does not have sugar in it. Even if the label says, 'No added sugar' you can bet it still has it. One of the only juices out there that really don't is, Welch's Grape juices in the bottles, not the cans and just the white and purple plain grape juices. Oh.. and Tropicana OJ- again the plain.Everything on the SCD is homemade to avoid eating any illegals as they say. The basis of the diet is to only eat foods that have single sugars and are very easy to digest. The practically digest themselves. :-) And in doing so, relieve the gut of the work, allows it heal and doesn't any undigested food behind to feed the nasty gut bugs that have often gotten all out of whack by a gut that doesn't function well.If you can't digest your food, obviously you are not getting enough nutrition and

your gut flora is not going to allow your gut to function correctly and that can cause problems with your immune system both weakening it and also causing aut-immune problems. This often begins with people developing more and more food 'allergies' as their gut becomes worse.Left go long enough, serotonin production slows way down and that can start to cause sleep and behavior problems too. ( I forget the exact number now, but I think the gut produces 80% of the bodies serotonin)

This is the enzyme I have used with . I don't have to use them much anymore, though I can say *I* have been taking it more and more, and they really work!Each person is totally different, and I could not predict how a child's gut would heal, or what path you should take. All I can offer if what worked for . and this diet worked a miracle. :-) I hope this makes sense, feel free to ask questions.

Carol in ILMom 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/http://downsyndrome infoexchange. blogspot. com/Listen to oldest dd's music http://www.myspace. com/vennamusic

From: Jannette Janson de de la Lastra <jannettejanson@ yahoo.com. br>To: DownSyndromeInfoExc hange@yahoogroup s.comSent: Saturday, November 1, 2008 7:46:46 PMSubject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc..

What is "SCD"?

The interesting thing about this is that my son does not eat any dairy products, and the only wheat he has is bread for breakfast and sometimes pasta (both whole grain). He does not eat any sugar either, only the one in natural fruits and natural honey.

I never gave him packed or canned foods and the only cookies he has eaten I make at home without artificial color.

THis week by chance I discovered that the milk (soy milk) that he was drinking has sugar in it. I bought the "light" version of the soy milk by mistake and gave it to him and I noticed that his stool changed dramatically (a more consistent and normal appearance - a lot less undigested food). I wonder if it is that the light version does not have sugar among its ingredientes? Could such a small amount of sugar make a difference? This was the only change in his diet that I can think of.

Thanks,

Jannette--- Em sÃ¡b, 1/11/08, Carol in IL <ps1272000yahoo (DOT) com> escreveu:

De: Carol in IL <ps1272000yahoo (DOT) com>Assunto: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.Para: DownSyndromeInfoExc hange@yahoogroup s.comData: SÃ¡bado, 1 de Novembro de 2008, 17:22

If you "Breaking the Vicious Cycle" It explains why milk is often the first sign of a dysfunctional gut, also gluten. It's not really an allergy, it's that the gut is 'wounded' and can't produce the enzymes needed to digest those foods. Heal the gut, and the enzymes will begin to be made by the gut again. Elaine Gottschall never had much good to say about spending money on allergy tests for the gut. I did do it, and it told me just what Elaine said it would, and it healed, also as Elaine said it would. 5 years ago could not tolerate ANY wheat or sugars, yesterday she ate 2 Oreo cookies and NO side effects. It's amazing how the SCD has healed her gut, just amazing.Now I as get older I have noticed my body does not like dairy or wheat much anymore, a common side effect of aging, and so if I stay away from it or take enzymes, I do much better.Carol in ILMom 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/http://downsyndrome infoexchange. blogspot. com/Listen to oldest dd's music http://www.myspace. com/vennamusic

From: Keener <ninepreciousgiftsfr omgodyahoo (DOT) com>To: DownSyndromeInfoExc hange@yahoogroup s.comSent: Saturday, November 1, 2008 2:10:15 PMSubject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.

Hi Jannette!

Interesting study, even if I could only understand a small percentage of all that medical jargon. It's got me wondering if I could ever get 's pediatrician to read it. I'd love to have him order that allergy testing for . I've heard it's really expensive, but if his pediatrician would order it and insurance would pay for it, that would be great!

Like your son, 's stools have never been normal. After he started eating pureed baby food and cereal, he had a lot of trouble with constipation Now that he eats some table food, he has the opposite problem. His stools are almost always extremely loose and sloppy with undigested food in them. I can't see how the undigested food is going to do him any good, so I've gone back to putting certain things through the little food mill, which makes textured ground. I do this with whatever foods tend to come through whole, like soft-cooked green beans, peas, and carrots. I never give him corn as it is so hard to digest. I guess he must just swallow most things without chewing, and since digestion begins in the mouth as the food is chewed and mixed with saliva, it's not happening. His stools are a little better when I give him ground food, but I think there are other

things that affect his stools. Like all the supplements I give him, for example. But I don't know for sure which one or which ones are giving him loose stools, though I suspect certain ones. And does the benefit of the supplement outweigh the side effect of loose stools?

I, too, have heard that gluten and dairy are often the culprits for what ails our kids, even if they don't actually have celiac disease. They may just have a sensitivity to gluten and dairy, and sugar is another thing that seems to only add to their problems. So, about 6 or 7 months ago, I decided to eliminate gluten, dairy, and sugar from 's diet. He has adjusted to that just fine, and while he is still having asthma trouble whenever he gets a cold, he doesn't seem to be getting as sick with it as he used to. And he has gained weight beautifully in the last 6 months! His pediatrician is finally pleased with both his weight and height. So, I think the change in his diet has benefited him. And we have been able to get raw goat's milk for him, which he loves, so I think that has also helped him to gain weight.

Our whole family has been doing this together, so that helps tremendously. We do allow oats and rice, and you can get oat flour and rice flour for baking. Our main sweeteners are stevia and xylitol. A little honey, occasionally. 's favorite treat is banana bread. He also loves fruit smoothies.

If you want to know anything else, you are welcome to email me.

Blessings! (one and only wife to Fred; mom to Kari, Melody, Faith, Heidi, Isaac, Josiah, , Alana, and ! Yes, they're all ours!)

Is. 40:31 "They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles, they shall run and not be weary, they shall walk and not faint."

From: Jannette Janson de de la Lastra <jannettejanson@ yahoo.com. br>Subject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.To: DownSyndromeInfoExc hange@yahoogroup s.comDate: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten intolerance, diets etc. and I found this laboratory. The Great Plains Laboratory, Inc. directed by Dr. Shaw, PhD he is the author of Biological Treatments for Autism and PDD.

It call my attention that under Health Conditions they do have Down Syndrome and at the end of the article there is an option to see a slide presentation made by Dr. Shaw about Down Syndrome. It seems interesting. If anyone wants to check it out the site is:

http://www.greatpla inslaboratory. com/home/ eng/downssyndrom e.asp

The reason I am looking for this information is because since my son started eating foods as a baby his stool has never been normal. It is not diarrea, but close, and he always has undigested foods in his stool. Has anyone experienced this? ANy suggestions?

My concern is that he might not be getting the nutrients he needs. Even though he is growing, he is always underweight for his hight.

None of my kids have been shuby babys but they were never underweight.

Jannette

Novos endereÃ§os, o Yahoo! que vocÃª conhece. Crie um email novo com a sua cara @ymail.com ou @rocketmail. com.

Novos endereÃ§os, o Yahoo! que vocÃª conhece. Crie um email novo com a sua cara @ymail.com ou @rocketmail.com.

November 6, 2008

Very well said .

You took the words right out of my mouth.

I did have the pleasure of getting to go and hear the kids and watch the movie.

I think she is very bold to do what she is doing. She has done her homework.

This is not something she is walking into with blind folds on.

And should this become as HUGE as I think it will.

She will be tallked about for more years to come.

But there is something that I think is being missed with all the emails. When anyone says that there is no research or studies for DS especially with the protocol, of course there isn't! It was done with everyone else and not with or for our kids.

Safety? Everything has side effects. Prozac has been approved for 20 years, and also approved for use with kids 6 and up. Ginkgo has been around 5000 years. Most of the families don't use focalin.

So why deny our kids this? Just because the 30 people who signed are well known, doesn't make them any more knowledgeable or better than my daughter's doctor.

And Dr. Cody is still working to help all kids with DS. Carol

From: Jannette Janson de de la Lastra <jannettejanson@ yahoo.com. br>Subject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.To: DownSyndromeInfoExc hange@yahoogroup s.comDate: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten intolerance, diets etc. and I found this laboratory. The Great Plains Laboratory, Inc. directed by Dr. Shaw, PhD he is the author of Biological Treatments for Autism and PDD.

It call my attention that under Health Conditions they do have Down Syndrome and at the end of the article there is an option to see a slide presentation made by Dr. Shaw about Down Syndrome. It seems interesting. If anyone wants to check it out the site is:

http://www.greatpla inslaboratory. com/home/ eng/downssyndrom e.asp

The reason I am looking for this information is because since my son started eating foods as a baby his stool has never been normal. It is not diarrea, but close, and he always has undigested foods in his stool. Has anyone experienced this? ANy suggestions?

My concern is that he might not be getting the nutrients he needs. Even though he is growing, he is always underweight for his hight.

None of my kids have been shuby babys but they were never underweight.

Jannette

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou @rocketmail. com.

November 6, 2008

The reason why the statement was needed, and I totally agree it was needed, is because it's made to sound as though this is a proven protocol and it is NOT. After talking with those who actually did the research and would know a lot more than a Ped or Dr the mechanisms and also the potential problems that they have not really had a chance to research yet, a statement regarding caution seems very prudent.I am not against people using it on their own. I would not do it, I think it's taking a big risk at this point and if you are going to do it, I would suggest talking to Mobley about why it might be wise to wait.I am all for research and I hope this works. Trust me... I will be the first in line if it does.What I am not for, is CM, making it sound as though this is a proven safe protocol

when it is not.I also think it's very divisive to research to make it sound as though those who are doing the research do not have the kid's welfare at heart. This will only stop money from being sent in, and have the opposite effect.DSTRF, who funded the original research is all parent driven and when you imply that they are not in it for the kids, that makes me pretty upset, as it should any of us here who are supporting them with our monies. I know DSTRF was hoping they would submit the trials to them for funding, last I heard, they had not. Without them we would not even be having this discusion! So please do not paint them as though they are not interested in finding a cure. 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/ http://downsyndromeinfoexchange.blogspot.com/Listen to oldest dd's music http://www.myspace. com/vennamusicTo: DownSyndromeInfoExchange Sent: Thursday, November 6, 2008 7:58:12 AMSubject: RE: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

Very well said .

You took the words right out of my mouth.

I did have the pleasure of getting to go and hear the kids and watch the movie.

I think she is very bold to do what she is doing. She has done her homework.

This is not something she is walking into with blind folds on.

And should this become as HUGE as I think it will.

She will be tallked about for more years to come.

But there is something that I think is being missed with all the emails. When anyone says that there is no research or studies for DS especially with the protocol, of course there isn't! It was done with everyone else and not with or for our kids.

Safety? Everything has side effects. Prozac has been approved for 20 years, and also approved for use with kids 6 and up. Ginkgo has been around 5000 years. Most of the families don't use focalin.

So why deny our kids this? Just because the 30 people who signed are well known, doesn't make them any more knowledgeable or better than my daughter's doctor.

And Dr. Cody is still working to help all kids with DS. Carol

From: Jannette Janson de de la Lastra <jannettejanson@ yahoo.com. br>Subject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.To: DownSyndromeInfoExc hange@yahoogroup s.comDate: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten intolerance, diets etc. and I found this laboratory. The Great Plains Laboratory, Inc. directed by Dr. Shaw, PhD he is the author of Biological Treatments for Autism and PDD.

It call my attention that under Health Conditions they do have Down Syndrome and at the end of the article there is an option to see a slide presentation made by Dr. Shaw about Down Syndrome. It seems interesting. If anyone wants to check it out the site is:

http://www.greatpla inslaboratory. com/home/ eng/downssyndrom e.asp

The reason I am looking for this information is because since my son started eating foods as a baby his stool has never been normal. It is not diarrea, but close, and he always has undigested foods in his stool. Has anyone experienced this? ANy suggestions?

My concern is that he might not be getting the nutrients he needs. Even though he is growing, he is always underweight for his hight.

None of my kids have been shuby babys but they were never underweight.

Jannette

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou @rocketmail. com.

November 6, 2008

This is s really useful discussion , especially for me at the moment. I have gone with gingko for the last two years and it has been the difference between Sam being a passive bystander with life passing him by and a little boy who is active and intergated . The hard thing for me is that Gingko is banned in Ireland so I have to sneak it in !! I had been toying with prozac as I do know children who has been on it for a while and it has made a huge difference to them with no apparent side effects . ( they do not have downs though) . Focalin I cant get my head around. I saw my child being on the verge of getting a dx of ADHD or ADD. I did everything to ensure he did not have to take that drug and honesty his sensory work turned him completely around!! Within a week he was sitting and concentrating ( as long as he his sensory work was due before hand) So I am having a hard time with focalin. There is no denying the results with Gingko for Sam so I wish they would just get a move on with the research . It tells me so much can change for Sam and I am as eager for that as Sam is !!!!!

Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.To: DownSyndromeInfoExc hange@yahoogroup s.comDate: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten intolerance, diets etc. and I found this laboratory. The Great Plains Laboratory, Inc. directed by Dr. Shaw, PhD he is the author of Biological Treatments for Autism and PDD.

It call my attention that under Health Conditions they do have Down Syndrome and at the end of the article there is an option to see a slide presentation made by Dr. Shaw about Down Syndrome. It seems interesting. If anyone wants to check it out the site is:

http://www.greatpla inslaboratory. com/home/ eng/downssyndrom e.asp

The reason I am looking for this information is because since my son started eating foods as a baby his stool has never been normal. It is not diarrea, but close, and he always has undigested foods in his stool. Has anyone experienced this? ANy suggestions?

My concern is that he might not be getting the nutrients he needs. Even though he is growing, he is always underweight for his hight.

None of my kids have been shuby babys but they were never underweight.

Jannette

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou @rocketmail. com.

November 6, 2008

I use ginkgo with as well and even though I am afraid of using the prozac right now, I DO address the issue with lots of exercise and the SCD, both of which will increase serotonin levels. Exercise and being exposed to new experiences will also build new neuronal connections, so you get a 2-fer. :-)I really do feel the ginkgo has helped as well and no one says that is dangerous to use. I also think the oils, though I still feel the fish oils work best for us and I did try the more expensive ones.I agree- SEND MONEYIt's the only thing holding up research!I don't have the addy for the CM research project though.... who ever does, send it in. I need to send my money too, waiting for our Christmas bonus. 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/ http://downsyndromeinfoexchange.blogspot.com/Listen to oldest dd's music http://www.myspace. com/vennamusicTo: DownSyndromeInfoExchange Sent: Thursday, November 6, 2008 9:09:38 AMSubject: Re: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

This is s really useful discussion , especially for me at the moment. I have gone with gingko for the last two years and it has been the difference between Sam being a passive bystander with life passing him by and a little boy who is active and intergated . The hard thing for me is that Gingko is banned in Ireland so I have to sneak it in !! I had been toying with prozac as I do know children who has been on it for a while and it has made a huge difference to them with no apparent side effects . ( they do not have downs though) . Focalin I cant get my head around. I saw my child being on the verge of getting a dx of ADHD or ADD. I did everything to ensure he did not have to take that drug and honesty his sensory work turned him completely around!! Within a week he was sitting and concentrating ( as long as he his sensory work was due before hand) So I am having a hard time with focalin. There is no denying the results with Gingko for Sam so I wish they would just get a move on with the research . It tells me so much can change for Sam and I am as eager for that as Sam is !!!!!

Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.To: DownSyndromeInfoExc hange@yahoogroup s.comDate: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten intolerance, diets etc. and I found this laboratory. The Great Plains Laboratory, Inc. directed by Dr. Shaw, PhD he is the author of Biological Treatments for Autism and PDD.

It call my attention that under Health Conditions they do have Down Syndrome and at the end of the article there is an option to see a slide presentation made by Dr. Shaw about Down Syndrome. It seems interesting. If anyone wants to check it out the site is:

http://www.greatpla inslaboratory. com/home/ eng/downssyndrom e.asp

The reason I am looking for this information is because since my son started eating foods as a baby his stool has never been normal. It is not diarrea, but close, and he always has undigested foods in his stool. Has anyone experienced this? ANy suggestions?

My concern is that he might not be getting the nutrients he needs. Even though he is growing, he is always underweight for his hight.

None of my kids have been shuby babys but they were never underweight.

Jannette

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou @rocketmail. com.

November 6, 2008

New experiences ??? That's something I did not know. Ok that gives me an idea for Sams christmas pressie. I am going to give him one completely new experience per day . I will have to vary them from really tiny to big trips out. I never know what to get him and this way he gets a gift that lasts all year. !! Yes I do like this I am off to plan this one out!! Thanks Carol !!!

From: Carol in IL

To: DownSyndromeInfoExchange

Sent: Thursday, November 06, 2008

Subject: Re: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

I use ginkgo with as well and even though I am afraid of using the prozac right now, I DO address the issue with lots of exercise and the SCD, both of which will increase serotonin levels. Exercise and being exposed to new experiences will also build new neuronal connections, so you get a 2-fer. :-)I really do feel the ginkgo has helped as well and no one says that is dangerous to use. I also think the oils, though I still feel the fish oils work best for us and I did try the more expensive ones.I agree- SEND MONEYIt's the only thing holding up research!I don't have the addy for the CM research project though.... who ever does, send it in. I need to send my money too, waiting for our Christmas bonus.

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

To: DownSyndromeInfoExchange Sent: Thursday, November 6, 2008 9:09:38 AMSubject: Re: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

This is s really useful discussion , especially for me at the moment. I have gone with gingko for the last two years and it has been the difference between Sam being a passive bystander with life passing him by and a little boy who is active and intergated . The hard thing for me is that Gingko is banned in Ireland so I have to sneak it in !! I had been toying with prozac as I do know children who has been on it for a while and it has made a huge difference to them with no apparent side effects . ( they do not have downs though) . Focalin I cant get my head around. I saw my child being on the verge of getting a dx of ADHD or ADD. I did everything to ensure he did not have to take that drug and honesty his sensory work turned him completely around!! Within a week he was sitting and concentrating ( as long as he his sensory work was due before hand) So I am having a hard time with focalin. There is no denying the results with Gingko for Sam so I wish they would just get a move on with the research . It tells me so much can change for Sam and I am as eager for that as Sam is !!!!!

Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.To: DownSyndromeInfoExc hange@yahoogroup s.comDate: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten intolerance, diets etc. and I found this laboratory. The Great Plains Laboratory, Inc. directed by Dr. Shaw, PhD he is the author of Biological Treatments for Autism and PDD.

It call my attention that under Health Conditions they do have Down Syndrome and at the end of the article there is an option to see a slide presentation made by Dr. Shaw about Down Syndrome. It seems interesting. If anyone wants to check it out the site is:

http://www.greatpla inslaboratory. com/home/ eng/downssyndrom e.asp

The reason I am looking for this information is because since my son started eating foods as a baby his stool has never been normal. It is not diarrea, but close, and he always has undigested foods in his stool. Has anyone experienced this? ANy suggestions?

My concern is that he might not be getting the nutrients he needs. Even though he is growing, he is always underweight for his hight.

None of my kids have been shuby babys but they were never underweight.

Jannette

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou @rocketmail. com.

November 6, 2008

Janette-

Carol and I have had this same discussion privately many

times;-) I agree with her that a statement needed to be made to make it very

clear hat this protocol has not been tested in people with Ds, but I agree with

you that it is phrased in a negative way. Some of the statements that I have

read have almost sounded like a witch hunt against Cody…many of

the things that I have read have been along the lines of a ‘cover our

butts’ statements because people are afraid of appearing too endorse the

protocol in case kids are harmed as a result. And again, I want to make it

perfectly clear that I am not using the protocol for Danny (except the gingko) because

I am waiting for the studies. So, I understand the concerns,,,but it really seems

that many in the Ds community do not believe that there IS a treatment for Ds, (or

event that there SHOULD be a treatment)and they pooh pooh everything new that

comes along.(I am not saying that is the case with all of the professionals who

signed the statement, but I have seen that feeling expressed by many people who

are in leadership positions.

I must have watched a different movie than the ones the

professionals are talking about in their statement below, because there were

very striking differences in Dr. Cody’s son after he started on the protocol…and

I don’t think that those results can be explained away by saying that he

was getting older and would have developed those skills anyway, or that other

individuals with Ds are doing just as well without the protocol. *those*

specific individuals that were shown in the dvd clearly changed. I understand

that there is a wide range of abilities within the Ds community. The whole

point of the dvd was to show before and after videos of those specific people…and

they were remarkable. The young woman who had regressed in many areas prior to

treatment clearly improved. Was she a ‘superstar’ as a result of

the protocol? No, and no claims were made that she was…it simply showed

that she improved a great deal and regained functions that greatly improved her

quality of life.

It always bugs me when people write off any improvements that

people w/Ds make as a result of taking nutritional supplements (and now, this

protocol) with a ‘oh, it probably would have happened anyway’) They

don’t say that when someone responds favorably to some other type of drug

therapy (antibitiotics, thyroid medicine, heart meds, etc) but somehow, it is

just seen as impossible and wishful thinking on the part of the parents to say

that your child benefits from certain things, even when you can show that they

have. In spite of what the study on nutritional supplements showed, I know that

they help Danny…he was a sickly 16 month old when we started using NVD..we

were at the doc’s weekly for antibiotics, etc..and that changed very

quickly after we started nvd…I don’t give him the full dose now,

but if I forget to give it for a few days, he invariably gets sick. So, in the

instance of nutritional supplements, it doesn’t really matter to me what

the study showed in other kids…I know what it does for Danny.

I agree that instead of just dismissing the protocol, the

professionals should have encouraged interested people to donate to research so

that it can at least have its safety proven or disproven. If parents know that

there is a study in the works, it will help them to make the decision to wait

it out for a few more years instead of trying it on their own because there is

no likelihood that a study will ever be done.

And for the record…I want to get this off my chest;-) One

of the statements made by someone who is speaking out against the protocol is

that mice are somehow included in the ‘evolution of humans’

millions of years ago. Quite frankly, I don’t believe that, so it makes

me wonder if the person is wrong on that, is he right on all of the other stuff

he is claiming is wrong with the protocol? Nothing personal, but that statement

gave me pause.

KathyR

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of

Sent: Thursday, November 06, 2008 10:10 AM

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] SCD & Changing Minds

Statement

This

is s really useful discussion , especially for me at the moment. I have

gone with gingko for the last two years and it has been the

difference between Sam being a passive bystander with life passing him by and a

little boy who is active and intergated . The hard thing for me is that Gingko

is banned in Ireland so I have to sneak it in !! I had been toying with

prozac as I do know children who has been on it for a while and it has

made a huge difference to them with no apparent side effects . ( they do not

have downs though) . Focalin I cant get my head around. I saw my

child being on the verge of getting a dx of ADHD or ADD. I

did everything to ensure he did not have to take that drug and honesty his

sensory work turned him completely around!! Within a week he was sitting

and concentrating ( as long as he his sensory work was due before hand)

So I am having a hard time with focalin. There is no denying the results

with Gingko for Sam so I wish they would just get a move on with

the research . It tells me so much can change for Sam and I am as

eager for that as Sam is !!!!!

-----

Original Message -----

From: Carol in IL

To: DownSyndromeInfoExchange

Cc: frank.buckley@...

; patwhiteflatley@... ; Na'eem

Sent: Thursday, November

06, 2008 2:22 PM

Subject: Re: [DownSyndromeInfoExchange]

SCD & Changing Minds Statement

The reason

why the statement was needed, and I totally agree it was needed, is because

it's made to sound as though this is a proven protocol and it is NOT. After

talking with those who actually did the research and would know a lot more than

a Ped or Dr the mechanisms and also the potential problems that they have not

really had a chance to research yet, a statement regarding caution seems very

prudent.

I am not against people using it on their own. I would not do it, I think it's

taking a big risk at this point and if you are going to do it, I would suggest

talking to Mobley about why it might be wise to wait.

I am all for research and I hope this works. Trust me... I will be the first in

line if it does.

What I am not for, is CM, making it sound as though this is a proven safe

protocol when it is not.

I also think it's very divisive to research to make it sound as though those

who are doing the research do not have the kid's welfare at heart. This will

only stop money from being sent in, and have the opposite effect.

DSTRF, who funded the original research is all parent driven and when you imply

that they are not in it for the kids, that makes me pretty upset, as it should

any of us here who are supporting them with our monies. I know DSTRF was hoping

they would submit the trials to them for funding, last I heard, they had not.

Without them we would not even be having this discusion! So please do not paint

them as though they are not interested in finding a cure.

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/

http://downsyndromeinfoexchange.blogspot.com/

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

To: DownSyndromeInfoExchange

Sent: Thursday, November 6, 2008 7:58:12 AM

Subject: RE: [DownSyndromeInfoExchange] SCD & Changing Minds

Statement

Very well said

..

You took the

words right out of my mouth.

I did have the

pleasure of getting to go and hear the kids and watch the movie.

I think she is

very bold to do what she is doing. She has done her homework.

This is not

something she is walking into with blind folds on.

And should

this become as HUGE as I think it will.

She will be

tallked about for more years to come.

But there is

something that I think is being missed with all the emails. When

anyone says that there is no research or studies for DS especially with

the protocol, of course there isn't! It was done with

everyone else and not with or for our kids.

Safety?

Everything has side effects. Prozac has been approved for 20

years, and also approved for use with kids 6 and up. Ginkgo has

been around 5000 years. Most of the families don't use focalin.

So why deny

our kids this? Just because the 30 people who signed are well

known, doesn't make them any more knowledgeable or better than my daughter's

doctor.

And Dr. Cody

is still working to help all kids with DS.

Carol

From: Jannette Janson de de la Lastra

<jannettejanson@ yahoo.com. br>

Subject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory,

Inc.

To: DownSyndromeInfoExc hange@yahoogroup s.com

Date: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten intolerance, diets

etc. and I found this laboratory. The Great Plains

Laboratory, Inc. directed by Dr. Shaw, PhD he is the author

of Biological Treatments for Autism and PDD.

It call my attention that under Health Conditions they do

have Down Syndrome and at the end of the article there is an option

to see a slide presentation made by Dr. Shaw about Down Syndrome.

It seems interesting. If anyone wants to check it out the

site is:

http://www.greatpla inslaboratory. com/home/

eng/downssyndrom e.asp

The reason I am looking for this information is because since

my son started eating foods as a baby his stool has never been

normal. It is not diarrea, but close, and he always has

undigested foods in his stool. Has anyone experienced this?

ANy suggestions?

My concern is that he might not be getting the nutrients he

needs. Even though he is growing, he is always underweight

for his hight.

None of my kids have been shuby babys but they were never

underweight.

Jannette

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou

@rocketmail. com.

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou

@rocketmail. com.

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou

@rocketmail. com.

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou

@rocketmail. com.

November 6, 2008

We started Reece on the protocol. Reece has been taking Ginko for 6 weeks and we've seen significant changes in him. I've had second thoughts about continuing with the rest of the items on the protocol though. Prozac is next on the list to give Reece. I would feel better about giving it to him if he could communicate and tell me how he's feeling. I think we're just going to stick with Ginko for now until Reece gets older. Maybe we'll have more information about the research then.

Judy

To: DownSyndromeInfoExchange Sent: Thursday, November 6, 2008 7:24:15 AMSubject: Re: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

I use ginkgo with as well and even though I am afraid of using the prozac right now, I DO address the issue with lots of exercise and the SCD, both of which will increase serotonin levels. Exercise and being exposed to new experiences will also build new neuronal connections, so you get a 2-fer. :-)I really do feel the ginkgo has helped as well and no one says that is dangerous to use. I also think the oils, though I still feel the fish oils work best for us and I did try the more expensive ones.I agree- SEND MONEYIt's the only thing holding up research!I don't have the addy for the CM research project though.... who ever does, send it in. I need to send my money too, waiting for our Christmas bonus.

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

To: DownSyndromeInfoExc hange@yahoogroup s.comSent: Thursday, November 6, 2008 9:09:38 AMSubject: Re: [DownSyndromeInfoEx change] SCD & Changing Minds Statement

This is s really useful discussion , especially for me at the moment. I have gone with gingko for the last two years and it has been the difference between Sam being a passive bystander with life passing him by and a little boy who is active and intergated . The hard thing for me is that Gingko is banned in Ireland so I have to sneak it in !! I had been toying with prozac as I do know children who has been on it for a while and it has made a huge difference to them with no apparent side effects . ( they do not have downs though) . Focalin I cant get my head around. I saw my child being on the verge of getting a dx of ADHD or ADD. I did everything to ensure he did not have to take that drug and honesty his sensory work turned him completely around!! Within a week he was sitting and concentrating ( as long as he his sensory work was due before hand) So I am

having a hard time with focalin. There is no denying the results with Gingko for Sam so I wish they would just get a move on with the research . It tells me so much can change for Sam and I am as eager for that as Sam is !!!!!

Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.To: DownSyndromeInfoExc hange@yahoogroup s.comDate: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten intolerance, diets etc. and I found this laboratory. The Great Plains Laboratory, Inc. directed by Dr. Shaw, PhD he is the author of Biological Treatments for Autism and PDD.

It call my attention that under Health Conditions they do have Down Syndrome and at the end of the article there is an option to see a slide presentation made by Dr. Shaw about Down Syndrome. It seems interesting. If anyone wants to check it out the site is:

http://www.greatpla inslaboratory. com/home/ eng/downssyndrom e.asp

The reason I am looking for this information is because since my son started eating foods as a baby his stool has never been normal. It is not diarrea, but close, and he always has undigested foods in his stool. Has anyone experienced this? ANy suggestions?

My concern is that he might not be getting the nutrients he needs. Even though he is growing, he is always underweight for his hight.

None of my kids have been shuby babys but they were never underweight.

Jannette

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou @rocketmail. com.

November 6, 2008

I did sent in ideas in the Christmas shopping thread, but also, I take her with me just about everywhere I go. Because of dh's job, she gets to do a lot of PR type stuff which puts in front of people, meeting/talking to them etc. She has been on trains, planes, boats ( very rocky boat I might add)we've been to most of the museums in Chicago, different playgrounds, she has been in plays, Music productions, cheer leading of course, Girl Scouts- which brings a whole new set of activities, been to live plays, live performances of all kinds,swimming, on the gym t equipment at our local indoor gyms ( she can do a real live seat drop on the tramp now!), I let her help us paint doors and her bedroom for real and she did a great job!!That all I can think of off the top of my head. I wil say that many of the

things she has done, have not come easy at all. It's been a lot of work on both our parts and many of these we do repeatedly until she can do them independently.I have been thinking of starting her in some music lessons. We have a trumpet and she can make noise, lots of it and loudly, so maybe we will get her a head start on the whole band thing???Here are the podcasts that talk about how the brain works:Brain Science Podcast #33: Exercise and the BrainDan Rathers Reports on Neuroplasticity This

page has links to other podcasts on the same subject. 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/ http://downsyndromeinfoexchange.blogspot.com/Listen to oldest dd's music http://www.myspace. com/vennamusicTo: DownSyndromeInfoExchange Sent: Thursday, November 6, 2008 9:48:09 AMSubject: Re: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

New experiences ??? That's something I did not know. Ok that gives me an idea for Sams christmas pressie. I am going to give him one completely new experience per day . I will have to vary them from really tiny to big trips out. I never know what to get him and this way he gets a gift that lasts all year. !! Yes I do like this I am off to plan this one out!! Thanks Carol !!!

November 6, 2008

Since so many people think our kids are not worth the time .

doesn't it make sense for a mom with a child with Down Syndrome to

get the ball rolling a little faster than it is.

So once again another ball doesn't get drop .........

She tried this with her son. And saw great results.

And the only thing she is to blame for is the fact that she wants to

share what she has found. I don't think that is bad thing.

Everyone has their own points of view. Which is great.

But don't knock someone down just to get ahead.

And no Kathy I am not directing this at you. Or to you.

Carol From: Jannette Janson de de la Lastra <jannettejanson@ yahoo.com. br>Subject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.To: DownSyndromeInfoExc hange@yahoogroup s.comDate: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten intolerance, diets etc. and I found this laboratory. The Great Plains Laboratory, Inc. directed by Dr. Shaw, PhD he is the author of Biological Treatments for Autism and PDD.

It call my attention that under Health Conditions they do have Down Syndrome and at the end of the article there is an option to see a slide presentation made by Dr. Shaw about Down Syndrome. It seems interesting. If anyone wants to check it out the site is:

http://www.greatpla inslaboratory. com/home/ eng/downssyndrom e.asp

The reason I am looking for this information is because since my son started eating foods as a baby his stool has never been normal. It is not diarrea, but close, and he always has undigested foods in his stool. Has anyone experienced this? ANy suggestions?

My concern is that he might not be getting the nutrients he needs. Even though he is growing, he is always underweight for his hight.

None of my kids have been shuby babys but they were never underweight.

Jannette

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou @rocketmail. com.

November 6, 2008

But that is not true; that so many think our kids are not worth the time.DSTRF certainly DOES think they are, and are always asking for funds to support research projects.And *they* are the ones who did get the ball rolling. It's because of their research.Mom's are great, it's great she is pushing this to go to a clinical trial.It is NOT great that people are being told there is evidence to claim this works in people and being encouraged to use prozac with out the studies to ensure it's safety.That is all everyone is saying and continues to say- it's NOT proven safe or effective, we NEED STUDIES so send 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/ http://downsyndromeinfoexchange.blogspot.com/Listen to oldest dd's music http://www.myspace. com/vennamusicTo: DownSyndromeInfoExchange Sent: Thursday, November 6, 2008 10:48:49 AMSubject: RE: [DownSyndromeInfoExchange] SCD & Changing Minds

Statement

Since so many people think our kids are not worth the time .

doesn't it make sense for a mom with a child with Down Syndrome to

get the ball rolling a little faster than it is.

So once again another ball doesn't get drop .........

She tried this with her son. And saw great results.

And the only thing she is to blame for is the fact that she wants to

share what she has found. I don't think that is bad thing.

Everyone has their own points of view. Which is great.

But don't knock someone down just to get ahead.

And no Kathy I am not directing this at you. Or to you.

Carol From: Jannette Janson de de la Lastra <jannettejanson@ yahoo.com. br>Subject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.To: DownSyndromeInfoExc hange@yahoogroup s.comDate: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten intolerance, diets etc. and I found this laboratory. The Great Plains Laboratory, Inc. directed by Dr. Shaw, PhD he is the author of Biological Treatments for Autism and PDD.

It call my attention that under Health Conditions they do have Down Syndrome and at the end of the article there is an option to see a slide presentation made by Dr. Shaw about Down Syndrome. It seems interesting. If anyone wants to check it out the site is:

http://www.greatpla inslaboratory. com/home/ eng/downssyndrom e.asp

The reason I am looking for this information is because since my son started eating foods as a baby his stool has never been normal. It is not diarrea, but close, and he always has undigested foods in his stool. Has anyone experienced this? ANy suggestions?

My concern is that he might not be getting the nutrients he needs. Even though he is growing, he is always underweight for his hight.

None of my kids have been shuby babys but they were never underweight.

Jannette

Novos endereços, o Yahoo! que você conhece. Crie um email novo com a sua cara @ymail.com ou @rocketmail. com.

November 6, 2008

Very well written Jannette!

We donâ€™t give my brother the CMF protocol yet. We have used GB

and plan to start back up (the move from CA to OK was pretty crazy, so that got

dropped). But, I donâ€™t feel safe using drugs, like Prozac, for my brother just

yet because there is not enough studies to prove itâ€™s safety.

Qadoshyah

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Jannette

Janson de de la Lastra

Sent: Thursday, November 06, 2008 4:07 AM

To: DownSyndromeInfoExchange

Subject: RE: [DownSyndromeInfoExchange] SCD & Changing Minds

Statement

Thank

you all who wrote to me about what I said about the statement. I value

all the opinions even the ones that do not agree with me, actually this is

what I like about this list and I learn a lot from this.

The

truth is that I understood from the beginning, from the Changing Minds

Foundation site and also from some posts here of members that went to the

presentation of the DVD that this is a protocol that has not been tested

extensively or scientifically proven. I thought that was very clear,

and that the choice of trying it or not is with the parents always consulting

a doctor, thus I saw no point to the statement.

I

myself started my son on the Gingko but am afraid of the Prozac or the

Focalin. This is something that I will have to study a lot more with a

doctor if I ever consider giving it to my son. (I do not like this type

of medicines in general).

I

guess the statement bothered me the most because I did read the list of

people who signed it and I â€œknowâ€ (I have read their work, watch

presentation, know some curriculums) some of them; therefore my expectations

were a lot higher from a group of people like this one. I was

disappointed.

The

feeling I got after reading the statement was the same I got once I had to go

to a meeting in my middle sonâ€™s school. He was having some trouble and

I was called in, sat with 3 teachers that spent around 30 minutes telling me

everything that was â€œwrongâ€ with my son or everything that he could not do

and at the end when I expected them to tell me what they would do to help him

and some advice on what I should do to help him they simply said that they

would â€œwait and seeâ€ what happened until the end of the year!!!! UGH???

I know what happens when you do nothingâ€¦exactly that NOTHING HAPPENS!! (My

son is in a different school now).

I

read this extremely long statement to tell me something I already knew, the

protocol is not scientifically proven and the possible side effects are not

know, so?? I did not read anything that lead me to think that this

group of people would do something about it. Maybe get together like

they did to write the statement and make a fundraiser to make a clinical

study or to help the one ongoing? Maybe warn the parents but encourage

them to support an organization to conduct the study, even though this is

what I understand that the Changing Minds Foundation is doing.

On

the other hand, I believe that a statement like this does the contrary and

people who would donate to the Changing Mind foundation may be discouraged to

do so because of the tone in which the statement is written.

I

think it is appropriate to tell the parents the truth and I can also see that

kids could get hurt with irresponsible parents, (and I am not referring to

parents that are using the protocol with the help of their doctors), but that

is something no one can really prevent.

The

following line got my attention and made me think a lot:

â€œThe Changing

Minds Foundation promotional videos do not prove the claims of benefit from

the protocol. While the people shown are clearly doing well, none of the

individuals shown are functioning beyond the wide range seen in others with

the syndrome. Claimed changes following â€˜treatmentâ€™ could be the result of many

factors. Only a controlled trial can give clear evidence of treatment

effects.â€

From

this statement I get that they are looking for a â€œone size fits allâ€? that I

personally, in my ignorance I may add, see very difficult to find. I

believe that even the effects or benefits of Occupational Therapy,

Physiotherapy etc. are different in each kid with DS otherwise all kids that

had the early intervention would walk, talk etc. at the same age and I donâ€™t

see this happening. Also the results from these therapies are affected

by other factors like the family environment, habits etc. and I have not

heard of anyone claiming that because of that it is not proven that the early

intervention helps.

If

my son has a problem with his gut, diarrhea and the diet cures him then he

improved!!! I can not compare my son with the range of individuals with

DS. If my son was not able to read even after all my efforts and after

taking the protocol something happened and he started reading then he

improved!! Thus even though this individuals are not out of the â€œrangeâ€ they

improved from where they where at and I am sure that it is not only because

of the protocol but because of the combination of the protocol with

everything else that was being done but the protocol must have helped.

I

guess the thing is I did not find the statement as being merely informative

and neutral, I found it negative and It may be what someone mentioned.

Professional jealousy, or maybe because it was a mothers idea and this is

forbidden territory for parents?? I donâ€™t knowâ€¦Then again this is only my

perception.

Jannette

--- Em qua, 5/11/08, Kathy Ratkiewicz

escreveu:

De: Kathy Ratkiewicz

Assunto: RE: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

Para: DownSyndromeInfoExchange

Data: Quarta-feira, 5 de Novembro de 2008, 19:39

I agree with you on some of your

points, Janiceâ€¦.on the Ds leadersâ€™ list, the topic has been declared out of

bounds (as have nutritional supplements and abortionâ€¦the owner of the list

even refused to let the president of the new International Down Syndrome

Coalition for Life join the Ds leadersâ€™ list because he said we canâ€™t talk

about abortion on that list..90% of babies w/Ds are aborted, yet we are

not allowed to even talk about it. Didnâ€™t even tell her that she could join

if she promised not to talk about abortion. Just denied her membership based

on the name of her organization. Incredible.

How can parents make an informed

choices about ANYTHING unless they are given all of the factsâ€¦pro and con?

Personally, I am not using the

Changing Minds protocol until it has been studied in humans and found to be

safe. But that is my CHOICE. I think that parents should be given the

information, we should be told that the protocol has NOT been studied in

humans yet, so parents should be very aware of that..they should be also be

aware that we donâ€™t know if there will be any long term side effects

(damaging)

I feel badly for Cody, because

I believe that she is sincere, and she really wants to help othersâ€¦and I have

seen the Changing a Mind dvd, and the changes in her son are just amazing.

BUT,,,I am still not convinced that the benefits outweigh the possible

risks at this point.

I do believe, though, in this case,

the docs are acting out of concern, because there might be some parents who

would give the protocol to their child without fully understanding what is

involved, and kids COULD get hurt. But I have also gotten the

impression, many times, that professionals tend to pat parents on the head

and tell us..â€™now, donâ€™t you worry your pretty little head about thisâ€¦you

canâ€™t possibly understand, so just let us tell you what to think.â€

And I REALLY resent it when someone

makes a blanket statement (for example) about nutritional supplements not

working for kids with Ds..and imply that parents who say they see positive

results in their kids are delusional or just plain stupid.

KathyR

From:

DownSyndromeInfoExc hange@yahoogroup s.com [mailto:DownSyndrom eInfoExchange@

yahoogroups. com] On Behalf Of Carol in IL

Sent: Wednesday, November 05, 2008 10:41 AM

To: DownSyndromeInfoExc hange@yahoogroup s.com

Subject: [DownSyndromeInfoEx change] SCD & Changing Minds Statement

I'm

glad it made sense. The book will make more sense and continue reading

everything on those sites.

Soy is illegal on SCD and causes lots of problems, so that alone could be an

on-going issue for his gut. There are no grains of any kinds allowed. It's a

tough diet, but for , it turned out to be the 'easy' way out. :-)

And to a certain degree, it's is just the DS causing the problems. ;-) The

doctors though don't know much about nutrition nor do they seem to think that

what you eat makes any difference to gut health! Elaine had a LOT to say on

that matter. The history of celiac disease and diet is very interesting

too.

Anyway- it wouldn't hurt anyone to try it. The first month is HORRIBLE and

most kids feel AWFUL... very awful. Then almost like magic, there is a switch

that happens and suddenly they seem to be starving and wanting to eat foods

they would never before consider or it even made them sick to try.

According to adults who have done this diet, food actually changes how it

tastes. Before SCD they said many healthy foods made them want to vomit and

after wards, it all tasted so wonderful to them. Go figure? But the self limiting

diet is VERY common prior to SCD.

I do totally disagree with your assesment of the statement posted regarding

the CM protocol.

Did you happen to look at all those who signed it? People who are very

activiely seeking a cure signed that statment, some of whom are parents and

relatives to people with DS. Mobley was part of the orignal team that used

the protocol in the mice. They do not view parents as ignorant at all!

Everyone wants to find a cure, what they are concerned about is GM promoting

this as though it were a scientific and proven fact when it is not. That is

all that statement says and to use the protocol as it's being promoted is

taking a very large risk since it has not been proven to work nor does anyone

know the side effects. Everyone is free to do as they wish of course,

but they do want to let everyone know that using the protocol is pure

experimentation at this point.

So again... if you want to find out if this will work or not in real people-

send money to research!

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/

http://downsyndrome infoexchange. blogspot. com/

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

From:

Jannette Janson de de la Lastra <jannettejanson@ yahoo.com.

br>

To: DownSyndromeInfoExc hange@yahoogroup s.com

Sent: Tuesday, November 4, 2008 3:23:18 PM

Subject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory,

Inc.

HI Carol,

It makes perfect sense. I have had a feeling that has

something in his gut always but since he does not have an unstopable

diarreah the doctor thinks is just the " Down Syndrome " . I

get so tired of this sometimes, it is the easy way out!

Then I read statements like the one about the Changing Minds

Foundation and, I do not know if it is only me and I am reading more than

there is, but it upsets me to see all this " professionals "

talking as if they were the owners of the truth and talking down on someone

that is trying to actually do something more than testing mice.

As I understood from what I read on the Changing Minds site it

is clearly stated that parents need the guidance of a professional

and I also understood that the DVD is a way to raise funds to

further test the protocol. It actualy asks for scientist to do

the appropiate tests of the protocol. And what gets me the most,

is that I read between the lines " you poor parents of kids with DS we

understand that you want to help your kids but we know better " .

It gives me the impression that they figure we are not intelligent enough

to read, understand and take our own desicions. Many times I feel

that not only our kids face prejudice, but we as parents do too

and many times from the very professional that care for our

kids.

I think and all the team at the foundation are very brave and

kind in wanting to share what they have found up to now and I hope they get

the funding they need to scientifically test the protocol.

All medicines, have pros and cons, and side effects and it is for the

parents to decide with the doctors what is best in the interest of their

child.

Now back to the gut. Actually up to now the only thing

eats that is from a can is the soy milk, bread, nuts, raisins, the rest of

his food is all made at home with no sugar or white flour. I was

actually pleasently surprised on his birthday because we made a chocolate

cake and I gave him some since he was in school and all his classmates

were eating. He tasted the cake, took it out of his mouth, out

of his plate. Instead he got his fruit and snack and eat

it. He does not eat or drink dairy products either.

I have read some information from Doctor Rodney Ford that has written

several books about celiac deseas, gluten intolerance etc and how gluten

can actually affect the brain. It is interesting.

I will read the book about the diet and try it out. Thank you.

Jannette

--- Em ter, 4/11/08, Carol in IL <ps1272000yahoo (DOT) .com>

escreveu:

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

Assunto: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory, Inc.

Para: DownSyndromeInfoExc hange@yahoogroup s.com

Data: TerÃ§a-feira, 4 de Novembro de 2008, 1:13

Thank you Carol for all the urls!

Janette,

There is really very little on the market today that

does not have sugar in it. Even if the label says, 'No added sugar' you can

bet it still has it. One of the only juices out there that really

don't is, Welch's Grape juices in the bottles, not the cans and just the

white and purple plain grape juices. Oh.. and Tropicana OJ- again the

plain.

Everything on the SCD is homemade to avoid eating any illegals as they say.

The basis of the diet is to only eat foods that have single sugars and are

very easy to digest. The practically digest themselves. :-) And in doing

so, relieve the gut of the work, allows it heal and doesn't any undigested

food behind to feed the nasty gut bugs that have often gotten all out of

whack by a gut that doesn't function well.

If you can't digest your food, obviously you are not getting enough

nutrition and your gut flora is not going to allow your gut to function

correctly and that can cause problems with your immune system both

weakening it and also causing aut-immune problems. This often begins with

people developing more and more food 'allergies' as their gut becomes

worse.

Left go long enough, serotonin production slows way down and that can start

to cause sleep and behavior problems too. ( I forget the exact number now,

but I think the gut produces 80% of the bodies serotonin)

This is the enzyme I have used with . I don't have to use

them much anymore, though I can say *I* have been taking it more and more,

and they really work!

Each person is totally different, and I could not predict how a child's gut

would heal, or what path you should take. All I can offer if what worked

for . and this diet worked a miracle. :-)

I hope this makes sense, feel free to ask questions.

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/

http://downsyndrome infoexchange. blogspot. com/

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

From: Jannette Janson de de la Lastra

<jannettejanson@ yahoo.com. br>

To: DownSyndromeInfoExc hange@yahoogroup s.com

Sent: Saturday, November 1, 2008 7:46:46 PM

Subject: Re: [DownSyndromeInfoEx change] The Great Plains

Laboratory, Inc..

What is " SCD " ?

The interesting thing about this is that my son does not eat any dairy

products, and the only wheat he has is bread for breakfast and sometimes

pasta (both whole grain). He does not eat any sugar either, only

the one in natural fruits and natural honey.

I never gave him packed or canned foods and the only cookies he has

eaten I make at home without artificial color.

THis week by chance I discovered that the milk (soy milk) that he

was drinking has sugar in it. I bought the " light "

version of the soy milk by mistake and gave it to him and I noticed that

his stool changed dramatically (a more consistent and normal appearance -

a lot less undigested food). I wonder if it is that the light

version does not have sugar among its ingredientes? Could such a

small amount of sugar make a difference? This was the only change

in his diet that I can think of.

Thanks,

Jannette

--- Em sÃ¡b, 1/11/08, Carol in IL <ps1272000yahoo (DOT) com>

escreveu:

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

Assunto: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory,

Inc.

Para: DownSyndromeInfoExc hange@yahoogroup s.com

Data: SÃ¡bado, 1 de Novembro de 2008, 17:22

If you " Breaking the Vicious

Cycle " It explains why milk is often the first sign of a

dysfunctional gut, also gluten. It's not really an allergy, it's that the

gut is 'wounded' and can't produce the enzymes needed to digest those

foods. Heal the gut, and the enzymes will begin to be made by the gut

again. Elaine Gottschall never had much good to say about spending money on

allergy tests for the gut. I did do it, and it told me just what Elaine

said it would, and it healed, also as Elaine said it would.

5 years ago could not tolerate ANY wheat or sugars, yesterday

she ate 2 Oreo cookies and NO side effects. It's amazing how the SCD has

healed her gut, just amazing.

Now I as get older I have noticed my body does not like dairy or wheat

much anymore, a common side effect of aging, and so if I stay away from

it or take enzymes, I do much better.

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/

http://downsyndrome infoexchange. blogspot. com/

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

From: Keener <ninepreciousgiftsfr

omgodyahoo (DOT) com>

To: DownSyndromeInfoExc hange@yahoogroup s.com

Sent: Saturday, November 1, 2008 2:10:15 PM

Subject: Re: [DownSyndromeInfoEx change] The Great Plains

Laboratory, Inc.

Hi Jannette!

Interesting study, even if I could only understand a small

percentage of all that medical jargon. It's got me wondering if I

could ever get 's pediatrician to read it. I'd love to have

him order that allergy testing for . I've heard it's really

expensive, but if his pediatrician would order it and insurance would

pay for it, that would be great!

Like your son, 's stools have never been normal. After

he started eating pureed baby food and cereal, he had a lot of

trouble with constipation Now that he eats some table food,

he has the opposite problem. His stools are almost always

extremely loose and sloppy with undigested food in them. I can't see

how the undigested food is going to do him any good, so I've gone back

to putting certain things through the little food mill, which makes

textured ground. I do this with whatever foods tend to come

through whole, like soft-cooked green beans, peas, and carrots. I

never give him corn as it is so hard to digest. I guess he must

just swallow most things without chewing, and since digestion begins in

the mouth as the food is chewed and mixed with saliva, it's not

happening. His stools are a little better when I give him

ground food, but I think there are other things that affect his

stools. Like all the supplements I give him, for

example. But I don't know for sure which one or which ones

are giving him loose stools, though I suspect

certain ones. And does the benefit of the supplement

outweigh the side effect of loose stools?

I, too, have heard that gluten and dairy are often the culprits

for what ails our kids, even if they don't actually have celiac

disease. They may just have a sensitivity to gluten and dairy,

and sugar is another thing that seems to only add to their

problems. So, about 6 or 7 months ago, I decided to eliminate

gluten, dairy, and sugar from 's diet. He has adjusted to

that just fine, and while he is still having asthma trouble

whenever he gets a cold, he doesn't seem to be getting as sick

with it as he used to. And he has gained weight beautifully in

the last 6 months! His pediatrician is finally pleased

with both his weight and height. So, I think the change in

his diet has benefited him. And we have been able to get raw

goat's milk for him, which he loves, so I think that has also

helped him to gain weight.

Our whole family has been doing this together, so that helps

tremendously. We do allow oats and rice, and you can get oat

flour and rice flour for baking. Our main sweeteners are stevia

and xylitol. A little honey, occasionally. 's

favorite treat is banana bread. He also loves fruit

smoothies.

If you want to know anything else, you are welcome to email me.

Blessings!

(one and only wife to Fred; mom to Kari, Melody, Faith, Heidi, Isaac,

Josiah, , Alana, and ! Yes, they're all ours!)

Is. 40:31 " They that

wait upon the Lord shall renew their strength; they shall mount up with

wings as eagles, they shall run and not be weary, they shall walk and

not faint. "

From: Jannette Janson de de la Lastra

<jannettejanson@ yahoo.com. br>

Subject: Re: [DownSyndromeInfoEx change] The Great Plains Laboratory,

Inc.

To: DownSyndromeInfoExc hange@yahoogroup s.com

Date: Thursday, October 30, 2008, 9:45 AM

Hi:

I was looking for information about gluten intolerance, diets

etc. and I found this laboratory. The Great Plains Laboratory,

Inc. directed by Dr. Shaw, PhD he is the author of Biological

Treatments for Autism and PDD.

It call my attention that under Health Conditions they do have

Down Syndrome and at the end of the article there is an option to see

a slide presentation made by Dr. Shaw about Down Syndrome. It

seems interesting. If anyone wants to check it out the site is:

http://www.greatpla inslaboratory. com/home/

eng/downssyndrom e.asp

The reason I am looking for this information is because since

my son started eating foods as a baby his stool has never been

normal. It is not diarrea, but close, and he always has

undigested foods in his stool. Has anyone experienced

this? ANy suggestions?

My concern is that he might not be getting the nutrients he

needs. Even though he is growing, he is always underweight for

his hight.

None of my kids have been shuby babys but they were never

underweight.

Jannette

Novos endereÃ§os, o Yahoo! que vocÃª conhece. Crie um email novo com a sua cara @ymail.com ou

@rocketmail. com.

Novos endereÃ§os, o Yahoo! que vocÃª conhece. Crie um email novo com a sua cara @ymail.com ou

@rocketmail. com.

Novos

endereÃ§os, o Yahoo! que vocÃª conhece. Crie um email novo com a sua cara @ymail.com ou

@rocketmail. com.

Novos endereÃ§os, o Yahoo! que vocÃª conhece. Crie

um email novo com a sua cara @ymail.com ou @rocketmail.com.

November 6, 2008

My son is 17 months old and started the protocol about one month ago. The only

thing we have not done is the Focalin and that was because of his age. Dr. Cody

has made several statements regarding the use of Focalin possibly not being

necessary for all children.

In the 30 days that my son has been on the protocol he has learned three words,

can wave, blow kisses, brushes my hair, tries to feed me with a spoon, started

to crawl, pushes doors open, goes through the doggie door, and started pulling

up a couple of days ago. Last month, Ty had NONE OF THESE SKILLS.

Before I started the protocol, I met with Dr. Garner from Stanford, Theresa Cody

from Changing Minds Foundation, and many of the children that were part of her

initial study. I also read numerous studies relating to the different

components of the protocol. This past week, ECI came to the house for Ty's

therapy. Every therapist was astounded at his progress over the past month and

this is before I said anything about starting the protocol. They have asked that

I come and talk to their staff about what the treatment protocol because of the

remarkable advances in my son's developmental progress.

I have recently ordered books on molecular biology and biochemistry to further

my understanding of the chemical imbalances associated with Down Syndrome.

I don't care if people call it a cure, or protocol or whatever. The bottom line

is that my son has attained more skills in the past month at a pace that greatly

supersedes the 16 months prior. In my readings of the statements regarding the

Changing Minds Protocol, I am reminded of the movie Lorenzo's Oil and all the

new treatment options currently available for autism. Without parents taking a

proactive role in their treatment of their children, where would the treatment

currently stand in both of those disorders. I decided that I can either sit

back and wait knowing that my son will lose skills as he matures (especially in

adolescence) and will likely end up with early onset dementia because of the

neurochemical imbalances that slowly eat away at his brain, or I can chose to

take a proactive stance to hopefully give him the opportunity to be free. Free

to make choices based upon a greater number of options.

This being said, I definitely understand parents being frightened about trying

something new. I was too. However, after I read the supporting research and

much prayer, I decided that the risks were minimal as compared to the potential

benefits. I started one medication at a time to ensure that there were no

negative side-effects. If something happened that I didn't like, I could always

stop. However, if I did nothing, I would never know if it could possibly help.

Truly, I consider the protocol to be a gift from God.

Good luck to all,

Modisette

Adulation is poison. - President Gordon B. Hinckley

>

> From: Jannette Janson de

> de la Lastra <jannettejanson@ yahoo.com. br>

> Subject: Re:

> [DownSyndromeInfoEx change] The Great Plains Laboratory,

> Inc.

> To: DownSyndromeInfoExc

> hange@yahoogroup s.com

> Date: Thursday, October 30,

> 2008, 9:45 AM

>

> Hi:

>

> I was looking for

> information about gluten intolerance, diets etc. and I found

> this laboratory. The Great Plains Laboratory, Inc. directed

> by Dr. Shaw, PhD he is the author of Biological

> Treatments for Autism and PDD.

>

> It call my attention that

> under Health Conditions they do have Down Syndrome and at

> the end of the article there is an option to see a slide

> presentation made by Dr. Shaw about Down Syndrome. It seems

> interesting. If anyone wants to check it out the site is:

>

> http://www.greatpla

> inslaboratory. com/home/ eng/downssyndrom e.asp

>

> The reason I am looking for

> this information is because since my son started eating

> foods as a baby his stool has never been normal. It is not

> diarrea, but close, and he always has undigested foods in

> his stool. Has anyone experienced this? ANy suggestions?

>

> My concern is that he might

> not be getting the nutrients he needs. Even though he is

> growing, he is always underweight for his hight.

>

> None of my kids have been

> shuby babys but they were never underweight.

>

> Jannette

>

> ------------------------------------------------

>

> Novos endereÃ§os, o Yahoo!

> que vocÃª conhece. Crie um email novo com a sua cara

> @ymail.com ou @rocketmail. com.

>

> --------------------------------------------------------

>

> Novos endereÃ§os, o Yahoo! que

> vocÃª conhece. Crie um email novo com a sua cara @ymail.com

> ou @rocketmail. com.

>

> ----------------------------------------------------------------

>

> Novos endereÃ§os, o Yahoo! que vocÃª

> conhece. Crie um email novo com a sua cara @ymail.com ou

> @rocketmail. com.

>

> ----------------------------------------------------------------

> Novos endereÃ§os, o Yahoo! que vocÃª

> conhece. Crie um email novo com a sua cara @ymail.com ou

> @rocketmail. com.

November 6, 2008

I think it is interesting that on the site http://www.down-syndrome.org/,

there is a statement about not using the CM protocol but the article directly

under it by Katheleen Gardiner describes new pharmalogical interventions for DS

and Prozac is listed a producing neurogenesis. Things that make you go hmmmm.

From my readings of the different articles in recent months, I get the

impression that some of the debate among researchers is highly self-serving. I

just don't want my son to be the victim of another's pride and ego.

Adulation is poison. - President Gordon B. Hinckley

> From: Jannette Janson de de la Lastra

> <jannettejanson@ yahoo.com. br>

> Subject: Re: [DownSyndromeInfoEx change] The Great Plains

> Laboratory, Inc.

> To: DownSyndromeInfoExc hange@yahoogroup s.com

> Date: Thursday, October 30, 2008, 9:45 AM

> Hi:

>

> I was looking for information about gluten intolerance,

> diets etc. and I found this laboratory. The Great Plains

> Laboratory, Inc. directed by Dr. Shaw, PhD he is the

> author of Biological Treatments for Autism and PDD.

>

> It call my attention that under Health Conditions they do

> have Down Syndrome and at the end of the article there is an

> option to see a slide presentation made by Dr. Shaw about

> Down Syndrome. It seems interesting. If anyone wants to

> check it out the site is:

>

> http://www.greatpla inslaboratory. com/home/

> eng/downssyndrom e.asp

>

> The reason I am looking for this information is because

> since my son started eating foods as a baby his stool has

> never been normal. It is not diarrea, but close, and he

> always has undigested foods in his stool. Has anyone

> experienced this? ANy suggestions?

>

> My concern is that he might not be getting the nutrients he

> needs. Even though he is growing, he is always underweight

> for his hight.

>

> None of my kids have been shuby babys but they were never

> underweight.

>

> Jannette

>

> ________________________________

>

> Novos endereÃ§os, o Yahoo! que vocÃª conhece. Crie um email

> novo com a sua cara @ymail.com ou @rocketmail. com.

>

> ________________________________

>

> Novos endereÃ§os, o Yahoo! que vocÃª conhece. Crie um email

> novo com a sua cara @ymail.com ou @rocketmail. com.

>

> ________________________________

>

> Novos endereÃ§os, o Yahoo! que vocÃª conhece. Crie um email

> novo com a sua cara @ymail.com ou @rocketmail. com.

>

> ________________________________

>

> Novos endereÃ§os, o Yahoo! que vocÃª conhece. Crie um email

> novo com a sua cara @ymail.com ou @rocketmail. com.

November 6, 2008

Thanks for drawing attention to this. As Katheleen Gardiner writes in her

review:

" It is important, however, to keep in mind that the data in Table 1 represent

the results of basic research, and while they are encouraging for their

potential for application in Down syndrome, they are not clinical data. Each

intervention has significant limitations that require resolution before clinical

application in Down syndrome is considered. Applicable to all entries in Table 1

are the following: none has been approved for use in children, the consequences

of long term use are not known (i.e. side effects, loss of efficacy), the extent

of learning/memory benefits are not known (i.e. how many and which types of

deficits can be rescued), and, above all, because the Ts65Dn is not a perfect

model for Down syndrome, the effects on drug responses of the additional genes

that are trisomic in Down syndrome are not known and could be both significant

and negative. "

It is not (at the end of the day) about ego or pride. It is about reliable

evidence.

Re: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

I think it is interesting that on the site http://www.down-syndrome.org/,

there is a statement about not using the CM protocol but the article directly

under it by Katheleen Gardiner describes new pharmalogical interventions for DS

and Prozac is listed a producing neurogenesis. Things that make you go hmmmm.

From my readings of the different articles in recent months, I get the

impression that some of the debate among researchers is highly self-serving. I

just don't want my son to be the victim of another's pride and ego...

______________________________________________________________________

Are You Up for Reading? http://www.up-for-reading.org/

Down Syndrome Education International http://www.downsed.org/

Down Syndrome Education USA http://www.downsed-usa.org/

Down Syndrome Online http://www.down-syndrome.org/

This email has been scanned for viruses.

November 6, 2008

It has nothing to do with witch hunts, just what evidence there is for benefits

from a potentially harmful protocol.

Antibiotics and thyroid medications have been subjected to clinical trials to

demonstrate effect.

The point about our shared ancestry with mice is important. Because we and mice

shared parents approximately 75 million years ago, we have many genetic

similarities. Something like 25 genes on chromosome 21 can be traced as far back

as yeast DNA. This is precisely why mice make useful models for biomedical

research - much of the mouse genome is comparable to much of the human genome.

This is why it is argued that studies in Ts65Dn mice are thought to be helpful

for understanding human Down syndrome. Of course, 75 million years is a long

time and, as Katheleen Gardiner puts it, " mice are not men in fur coats " . In

other words, despite the similarities (at the level of protein coding genes) we

need to recognise the differences as well.

I believe I am right in saying only 11% of cancer treatments that work in mice

show effect in humans.

Mice are useful models, but not substitutes for clinical trials in humans.

----------------------------------------------

From: DownSyndromeInfoExchange

[mailto:DownSyndromeInfoExchange ] On Behalf Of Kathy Ratkiewicz

Sent: 06 November 2008 16:21

To: DownSyndromeInfoExchange

Subject: RE: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

Janette-

Carol and I have had this same discussion privately many times;-) I agree with

her that a statement needed to be made to make it very clear hat this protocol

has not been tested in people with Ds, but I agree with you that it is phrased

in a negative way. Some of the statements that I have read have almost sounded

like a witch hunt against Cody…many of the things that I have read have

been along the lines of a ‘cover our butts’ statements because people are afraid

of appearing too endorse the protocol in case kids are harmed as a result. And

again, I want to make it perfectly clear that I am not using the protocol for

Danny (except the gingko) because I am waiting for the studies. So, I understand

the concerns,,,but it really seems that many in the Ds community do not believe

that there IS a treatment for Ds, (or event that there SHOULD be a treatment)and

they pooh pooh everything new that comes along.(I am not saying that is the case

with all of the professionals who signed the statement, but I have seen that

feeling expressed by many people who are in leadership positions.

I must have watched a different movie than the ones the professionals are

talking about in their statement below, because there were very striking

differences in Dr. Cody’s son after he started on the protocol…and I don’t think

that those results can be explained away by saying that he was getting older and

would have developed those skills anyway, or that other individuals with Ds are

doing just as well without the protocol. *those* specific individuals that were

shown in the dvd clearly changed. I understand that there is a wide range of

abilities within the Ds community. The whole point of the dvd was to show before

and after videos of those specific people…and they were remarkable. The young

woman who had regressed in many areas prior to treatment clearly improved. Was

she a ‘superstar’ as a result of the protocol? No, and no claims were made that

she was…it simply showed that she improved a great deal and regained functions

that greatly improved her quality of life.

It always bugs me when people write off any improvements that people w/Ds make

as a result of taking nutritional supplements (and now, this protocol) with a

‘oh, it probably would have happened anyway’) They don’t say that when someone

responds favorably to some other type of drug therapy (antibitiotics, thyroid

medicine, heart meds, etc) but somehow, it is just seen as impossible and

wishful thinking on the part of the parents to say that your child benefits from

certain things, even when you can show that they have. In spite of what the

study on nutritional supplements showed, I know that they help Danny…he was a

sickly 16 month old when we started using NVD..we were at the doc’s weekly for

antibiotics, etc..and that changed very quickly after we started nvd…I don’t

give him the full dose now, but if I forget to give it for a few days, he

invariably gets sick. So, in the instance of nutritional supplements, it

doesn’t really matter to me what the study showed in other kids…I know what it

does for Danny.

I agree that instead of just dismissing the protocol, the professionals should

have encouraged interested people to donate to research so that it can at least

have its safety proven or disproven. If parents know that there is a study in

the works, it will help them to make the decision to wait it out for a few more

years instead of trying it on their own because there is no likelihood that a

study will ever be done.

And for the record…I want to get this off my chest;-) One of the statements made

by someone who is speaking out against the protocol is that mice are somehow

included in the ‘evolution of humans’ millions of years ago. Quite frankly, I

don’t believe that, so it makes me wonder if the person is wrong on that, is he

right on all of the other stuff he is claiming is wrong with the protocol?

Nothing personal, but that statement gave me pause.

KathyR

______________________________________________________________________

Are You Up for Reading? http://www.up-for-reading.org/

Down Syndrome Education International http://www.downsed.org/

Down Syndrome Education USA http://www.downsed-usa.org/

Down Syndrome Online http://www.down-syndrome.org/

This email has been scanned for viruses.

November 6, 2008

You know, the comment about 'witch hunts' was poorly worded on my part, and

I apologize for that. I didn't mean it to sound rude, and didn't realize

that it would be taken that way until Carol told me that she thought I

probably could have worded it better;-) So. Sorry for that.

Although I have gotten the impression that there are those who attacking

personally,(on other lists) by no means are all of the people who

disagree with her protocol doing that. I just feel badly for her because she

is so excited about the protocol, and it does seem to have done great things

for her son...so I can imagine that she would be very hurt by the negativity

(and this is speculation on my part, because I haven't been in contact with

her about it...just imagining how I would feel if I were in her shoes)

As for the statement, the name that made the biggest impression on me was

Dr. Mobley. I do not know him personally, but I have read about his work for

years, and I have never once gotten the impression that he was anything less

than completely sincere in his desire to find something to help people with

Ds and get it out to us as soon as it was proven safe. So for him to urge

caution on this carries a lot of weight for me.

I also respect the opinions of the people at the DSTRF, and believe that

they are sincere in their efforts to fund credible and ethical research.

I think that we agree more than disagree on this...just a lack of

communication. I think that most people realize that human trials are

necessary to prove the efficacy and safety of any drug...and I understand

why mice are used as a preliminary trial before research is done on humans.

I just don't happen to believe in evolution.

KathyR

RE: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

Janette-

Carol and I have had this same discussion privately many times;-) I agree

with her that a statement needed to be made to make it very clear hat this

protocol has not been tested in people with Ds, but I agree with you that it

is phrased in a negative way. Some of the statements that I have read have

almost sounded like a witch hunt against Cody.many of the things that

I have read have been along the lines of a 'cover our butts' statements

because people are afraid of appearing too endorse the protocol in case kids

are harmed as a result. And again, I want to make it perfectly clear that I

am not using the protocol for Danny (except the gingko) because I am waiting

for the studies. So, I understand the concerns,,,but it really seems that

many in the Ds community do not believe that there IS a treatment for Ds,

(or event that there SHOULD be a treatment)and they pooh pooh everything new

that comes along.(I am not saying that is the case with all of the

professionals who signed the statement, but I have seen that feeling

expressed by many people who are in leadership positions.

I must have watched a different movie than the ones the professionals are

talking about in their statement below, because there were very striking

differences in Dr. Cody's son after he started on the protocol.and I don't

think that those results can be explained away by saying that he was getting

older and would have developed those skills anyway, or that other

individuals with Ds are doing just as well without the protocol. *those*

specific individuals that were shown in the dvd clearly changed. I

understand that there is a wide range of abilities within the Ds community.

The whole point of the dvd was to show before and after videos of those

specific people.and they were remarkable. The young woman who had regressed

in many areas prior to treatment clearly improved. Was she a 'superstar' as

a result of the protocol? No, and no claims were made that she was.it simply

showed that she improved a great deal and regained functions that greatly

improved her quality of life.

It always bugs me when people write off any improvements that people w/Ds

make as a result of taking nutritional supplements (and now, this protocol)

with a 'oh, it probably would have happened anyway') They don't say that

when someone responds favorably to some other type of drug therapy

(antibitiotics, thyroid medicine, heart meds, etc) but somehow, it is just

seen as impossible and wishful thinking on the part of the parents to say

that your child benefits from certain things, even when you can show that

they have. In spite of what the study on nutritional supplements showed, I

know that they help Danny.he was a sickly 16 month old when we started using

NVD..we were at the doc's weekly for antibiotics, etc..and that changed very

quickly after we started nvd.I don't give him the full dose now, but if I

forget to give it for a few days, he invariably gets sick. So, in the

instance of nutritional supplements, it doesn't really matter to me what the

study showed in other kids.I know what it does for Danny.

I agree that instead of just dismissing the protocol, the professionals

should have encouraged interested people to donate to research so that it

can at least have its safety proven or disproven. If parents know that there

is a study in the works, it will help them to make the decision to wait it

out for a few more years instead of trying it on their own because there is

no likelihood that a study will ever be done.

And for the record.I want to get this off my chest;-) One of the statements

made by someone who is speaking out against the protocol is that mice are

somehow included in the 'evolution of humans' millions of years ago. Quite

frankly, I don't believe that, so it makes me wonder if the person is wrong

on that, is he right on all of the other stuff he is claiming is wrong with

the protocol? Nothing personal, but that statement gave me pause.

KathyR

______________________________________________________________________

Are You Up for Reading? http://www.up-for-reading.org/

Down Syndrome Education International http://www.downsed.org/

Down Syndrome Education USA http://www.downsed-usa.org/

Down Syndrome Online http://www.down-syndrome.org/

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1. Anything suggested on this site or opinions offered are not intended to

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physicians orders, nor to diagnose or treat your specific health problems.

Please discuss all methods of treatment with your practitioner.

2 *****WARNING: Flames and inappropriate treatment of other members on this

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where all archived posts as well as photos,links, files, articles etc. are

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November 8, 2008

That is really awesome !I am very happy to hear of your son's progress and we would love to hear more about it and how things are going with him on the protocol.I follow it as well, I just don't use the drug aspects of it and instead use exercise and try to keep her brain very active and always having to adapt to cover the serotonin aspect of things. I am very happy with how well she does over all too. She actually asked WHY people die the other night. Blew me away... .was also able to generalize the fact that everyone dies, including herself. Something is working well in that little head of hers. :-) Carol in ILMom to , 8 DS My problem is not how I look. It's how you see me.Join our

Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/ http://downsyndromeinfoexchange.blogspot.com/Listen to oldest dd's music http://www.myspace.com/vennamusicFrom: Modisette To: DownSyndromeInfoExchange Sent: Thursday,

November 6, 2008 2:30:27 PMSubject: Re: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

My son is 17 months old and started the protocol about one month ago. The only thing we have not done is the Focalin and that was because of his age. Dr. Cody has made several statements regarding the use of Focalin possibly not being necessary for all children.

In the 30 days that my son has been on the protocol he has learned three words, can wave, blow kisses, brushes my hair, tries to feed me with a spoon, started to crawl, pushes doors open, goes through the doggie door, and started pulling up a couple of days ago. Last month, Ty had NONE OF THESE SKILLS.

Before I started the protocol, I met with Dr. Garner from Stanford, Theresa Cody from Changing Minds Foundation, and many of the children that were part of her initial study. I also read numerous studies relating to the different components of the protocol. This past week, ECI came to the house for Ty's therapy. Every therapist was astounded at his progress over the past month and this is before I said anything about starting the protocol. They have asked that I come and talk to their staff about what the treatment protocol because of the remarkable advances in my son's developmental progress.

I have recently ordered books on molecular biology and biochemistry to further my understanding of the chemical imbalances associated with Down Syndrome.

I don't care if people call it a cure, or protocol or whatever. The bottom line is that my son has attained more skills in the past month at a pace that greatly supersedes the 16 months prior. In my readings of the statements regarding the Changing Minds Protocol, I am reminded of the movie Lorenzo's Oil and all the new treatment options currently available for autism. Without parents taking a proactive role in their treatment of their children, where would the treatment currently stand in both of those disorders. I decided that I can either sit back and wait knowing that my son will lose skills as he matures (especially in adolescence) and will likely end up with early onset dementia because of the neurochemical imbalances that slowly eat away at his brain, or I can chose to take a proactive stance to hopefully give him the opportunity to be free. Free to make choices based upon a greater number of options.

This being said, I definitely understand parents being frightened about trying something new. I was too. However, after I read the supporting research and much prayer, I decided that the risks were minimal as compared to the potential benefits. I started one medication at a time to ensure that there were no negative side-effects. If something happened that I didn't like, I could always stop. However, if I did nothing, I would never know if it could possibly help. Truly, I consider the protocol to be a gift from God.

Good luck to all,

Modisette

Adulation is poison. - President Gordon B. Hinckley

>

> From: Jannette Janson de

> de la Lastra <jannettejanson@ yahoo.com. br>

> Subject: Re:

> [DownSyndromeInfoEx change] The Great Plains Laboratory,

> Inc.

> To: DownSyndromeInfoExc

> hange@yahoogroup s.com

> Date: Thursday, October 30,

> 2008, 9:45 AM

>

> Hi:

>

> I was looking for

> information about gluten intolerance, diets etc. and I found

> this laboratory. The Great Plains Laboratory, Inc. directed

> by Dr. Shaw, PhD he is the author of Biological

> Treatments for Autism and PDD.

>

> It call my attention that

> under Health Conditions they do have Down Syndrome and at

> the end of the article there is an option to see a slide

> presentation made by Dr. Shaw about Down Syndrome. It seems

> interesting. If anyone wants to check it out the site is:

>

> http://www.greatpla

> inslaboratory. com/home/ eng/downssyndrom e.asp

>

> The reason I am looking for

> this information is because since my son started eating

> foods as a baby his stool has never been normal. It is not

> diarrea, but close, and he always has undigested foods in

> his stool. Has anyone experienced this? ANy suggestions?

>

> My concern is that he might

> not be getting the nutrients he needs. Even though he is

> growing, he is always underweight for his hight.

>

> None of my kids have been

> shuby babys but they were never underweight.

>

> Jannette

>

> ------------ --------- --------- --------- ---------

>

> Novos endereços, o Yahoo!

> que você conhece. Crie um email novo com a sua cara

> @ymail.com ou @rocketmail. com.

>

> ------------ --------- --------- --------- --------- --------

>

> Novos endereços, o Yahoo! que

> você conhece. Crie um email novo com a sua cara @ymail.com

> ou @rocketmail. com.

>

> ------------ --------- --------- --------- --------- --------- -

>

> Novos endereços, o Yahoo! que você

> conhece. Crie um email novo com a sua cara @ymail.com ou

> @rocketmail. com.

>

> ------------ --------- --------- --------- --------- --------- -

> Novos endereços, o Yahoo! que você

> conhece. Crie um email novo com a sua cara @ymail.com ou

> @rocketmail. com.

November 10, 2008

I was out of town and missed the discussion on the DS info list serve but I wanted to give you some facts. First of all Mobley never did any of the GABA antagonist studies. (the ginkgo biloba) It first came from Malenka's lab by a guy named Kleshevnikov. Then Garner picked it up and ran w/ it. Mobley's work is in Nerve growth factor and the APP gene. So your assumption that Mobley did the scientific work behind this is incorrect.

DSRTF did financially support some of the GABA antagonist studies so at least at that time they thought it was important. I absolutely agree we should have bigger clinical trials. It is a matter of financial support.

I must comment on the "she is just a dentist comment." That is right. I have a bachelors in Biology from the University of Texas and a doctorate from UT dental branch. But I did all this research because I am a determined Mom. This doesn't improve my professional career. I am sharing the changes because I feel a moral obligation to. Not because it has improved my life or lessened my work load.

I hope this helps others. If you read the information and it doesn't look right for you. OK. But at least look at it.

Cody

www.changingmindsfoundation.org

www.changingmindsfoundation.com

> > From: Jannette Janson

de> de la Lastra <jannettejanson@ yahoo.com. br>> Subject: Re:> [DownSyndromeInfoEx change] The Great Plains Laboratory,> Inc.> To: DownSyndromeInfoExc> hange@yahoogroup s.com> Date: Thursday, October 30,> 2008, 9:45 AM > > Hi:> > > > I was looking for> information about gluten intolerance, diets etc. and I found> this laboratory. The Great Plains Laboratory, Inc. directed> by Dr. Shaw, PhD he is the author of Biological> Treatments for Autism and PDD.> > > > It call my attention that> under Health Conditions they do have Down Syndrome and at> the end of the article there is an option to see a slide> presentation made by Dr. Shaw about Down Syndrome. It seems> interesting. If anyone wants to check it out the site is:> > > >

http://www..greatpla> inslaboratory. com/home/ eng/downssyndrom e.asp> > > > The reason I am looking for> this information is because since my son started eating> foods as a baby his stool has never been normal. It is not> diarrea, but close, and he always has undigested foods in> his stool. Has anyone experienced this? ANy suggestions?> > > > My concern is that he might> not be getting the nutrients he needs. Even though he is> growing, he is always underweight for his hight.> > > > None of my kids have been> shuby babys but they were never underweight.> > > > Jannette> > > > > > ------------ --------- --------- --------- ---------> > Novos endereços, o Yahoo!> que

você conhece. Crie um email novo com a sua cara> @ymail.com ou @rocketmail. com. > > > > > > > > > ------------ --------- --------- --------- --------- --------> > Novos endereços, o Yahoo! que> você conhece. Crie um email novo com a sua cara @ymail.com> ou @rocketmail. com. > > > > > ------------ --------- --------- --------- --------- --------- -> > Novos endereços, o Yahoo! que você> conhece. Crie um email novo com a sua cara @ymail.com ou> @rocketmail. com. > > > > > > > ------------ --------- --------- --------- --------- --------- -> Novos endereços, o Yahoo! que você> conhece. Crie um email novo com a sua cara @ymail.com ou> @rocketmail.

com.

November 11, 2008

Thank you for the info.

I think this will help straighten out a few question some were having over who was right about what.

I think it is great that you have had the courage to come forward and share your great news with everyone..

Carol > > From: Jannette Janson

de> de la Lastra <jannettejanson@ yahoo.com. br>> Subject: Re:> [DownSyndromeInfoEx change] The Great Plains Laboratory,> Inc.> To: DownSyndromeInfoExc> hange@yahoogroup s.com> Date: Thursday, October 30,> 2008, 9:45 AM > > Hi:> > > > I was looking for> information about gluten intolerance, diets etc. and I found> this laboratory. The Great Plains Laboratory, Inc. directed> by Dr. Shaw, PhD he is the author of Biological> Treatments for Autism and PDD.> > > > It call my attention that> under Health Conditions they do have Down Syndrome and at> the end of the article there is an option to see a slide> presentation made by Dr. Shaw about Down Syndrome. It seems> interesting. If anyone wants to check it out the site is:> > > >

http://www.. greatpla> inslaboratory. com/home/ eng/downssyndrom e.asp> > > > The reason I am looking for> this information is because since my son started eating> foods as a baby his stool has never been normal. It is not> diarrea, but close, and he always has undigested foods in> his stool. Has anyone experienced this? ANy suggestions?> > > > My concern is that he might> not be getting the nutrients he needs. Even though he is> growing, he is always underweight for his hight.> > > > None of my kids have been> shuby babys but they were never underweight.> > > > Jannette> > > > > > ------------ --------- --------- --------- ---------> > Novos endereços, o Yahoo!>

que você conhece. Crie um email novo com a sua cara> @ymail.com ou @rocketmail. com. > > > > > > > > > ------------ --------- --------- --------- --------- --------> > Novos endereços, o Yahoo! que> você conhece. Crie um email novo com a sua cara @ymail.com> ou @rocketmail. com. > > > > > ------------ --------- --------- --------- --------- --------- -> > Novos endereços, o Yahoo! que você> conhece. Crie um email novo com a sua cara @ymail.com ou> @rocketmail. com. > > > > > > > ------------ --------- --------- --------- --------- --------- -> Novos endereços, o Yahoo! que você> conhece. Crie um email novo com a sua cara @ymail.com ou> @rocketmail.

com.

November 11, 2008

Can you explain how sensory work helps with focus or attention?

Marsha

>

> From: Jannette Janson de

de la Lastra <jannettejanson@ yahoo.com. br>

> Subject: Re: [DownSyndromeInfoEx

change] The Great Plains Laboratory, Inc.

> To: DownSyndromeInfoExc

hange@yahoogroup s.com

> Date: Thursday, October 30, 2008,

9:45 AM

>

> Hi:

>

> I was looking for information about

gluten intolerance, diets etc. and I found this laboratory. The

Great Plains Laboratory, Inc. directed by Dr. Shaw, PhD he is

the author of Biological Treatments for Autism and PDD.

>

> It call my attention that under

Health Conditions they do have Down Syndrome and at the end of the

article there is an option to see a slide presentation made by Dr.

Shaw about Down Syndrome. It seems interesting. If anyone wants to

check it out the site is:

>

> http://www.greatpla inslaboratory.

com/home/ eng/downssyndrom e.asp

>

> The reason I am looking for this

information is because since my son started eating foods as a baby

his stool has never been normal. It is not diarrea, but close, and

he always has undigested foods in his stool. Has anyone experienced

this? ANy suggestions?

>

> My concern is that he might not be

getting the nutrients he needs. Even though he is growing, he is

always underweight for his hight.

>

> None of my kids have been shuby

babys but they were never underweight.

>

> Jannette

>

> ------------------------------------------------

>

> Novos endereços, o Yahoo! que você

conhece. Crie um email novo com a sua cara @ymail.com ou @rocketmail.

com.

>

> --------------------------------------------------------

>

> Novos endereços, o Yahoo! que você conhece.

Crie um email novo com a sua cara @ymail.com ou @rocketmail. com.

>

> ----------------------------------------------------------------

>

> Novos endereços, o Yahoo! que você conhece. Crie um

email novo com a sua cara @ymail.com ou @rocketmail. com.

>

> ----------------------------------------------------------------

> Novos endereços, o Yahoo! que você conhece. Crie um

email novo com a sua cara @ymail.com ou @rocketmail. com.

>

November 11, 2008

It strikes me that no one has mentioned that when you place someone on Prozac you don't just send them back out into the community without other supports and the constant reviewing and tracking of the affects of the medication (by the professional witting the prescription). I would argue that the incidence of support, in reported cases of suicide while on Prozac, may not have been as strong as they could have been. That's a study I would find interesting to read. Can someone point me in the direction of those studies?

I am asked to forgo the possibility of cognitive improvements because someone is concerned about the already documented low risk of suicide in patients with MR? If this was a drug that just came out yesterday, you might have me arguing against it.

In my research on this subject I found two psychiatric professionals who had no problem prescribing the Prozac but when I talked to two psychologist, I got the opposite response. Who do I believe. It can also be a matter of your own philosophy on the mind and body and how they work.

is right, the science is there. We all just need to go find it, read it, understand it and then make a decision based on your knowledge and the science, not on fear.

As far as the response about 's attitude toward her child being the real change, what response would you expect from someone so wholey unconnected to your child?

nnaMommy to Freddie 7yrsFull Inclusion 1st Grade"We can change the world one classroom at a time" - Gail on >

> From: Jannette Janson de> de la Lastra <jannettejanson@ yahoo.com. br>> Subject: Re:> [DownSyndromeInfoEx change] The Great Plains Laboratory,> Inc.> To: DownSyndromeInfoExc> hange@yahoogroup s.com> Date: Thursday, October 30,> 2008, 9:45 AM > > Hi:> > > > I was looking for> information about gluten intolerance, diets etc. and I found> this laboratory. The Great Plains Laboratory, Inc. directed> by Dr. Shaw, PhD he is the author of Biological> Treatments for Autism and PDD.> > > > It call my attention that> under Health Conditions they do have Down Syndrome and at> the end of the article there is an option to see a slide> presentation made by Dr. Shaw about Down Syndrome. It seems> interesting. If anyone wants to check it out the site

is:> > > > http://www.. . greatpla> inslaboratory. com/home/ eng/downssyndrom e.asp> > > > The reason I am looking for> this information is because since my son started eating> foods as a baby his stool has never been normal. It is not> diarrea, but close, and he always has undigested foods in> his stool. Has anyone experienced this? ANy suggestions?> > > > My concern is that he might> not be getting the nutrients he needs. Even though he is> growing, he is always underweight for his hight.> > > > None of my kids have been> shuby babys but they were never underweight.> > > > Jannette> > > > > > ------------ --------- --------- --------- --------->

> Novos endereços, o Yahoo!> que você conhece. Crie um email novo com a sua cara> @ymail.com ou @rocketmail. com. > > > > > > > > > ------------ --------- --------- --------- --------- --------> > Novos endereços, o Yahoo! que> você conhece. Crie um email novo com a sua cara @ymail.com> ou @rocketmail. com. > > > > > ------------ --------- --------- --------- --------- --------- -> > Novos endereços, o Yahoo! que você> conhece. Crie um email novo com a sua cara @ymail.com ou> @rocketmail. com. > > > > > > > ------------ --------- --------- --------- --------- --------- -> Novos endereços, o Yahoo! que você> conhece. Crie um email novo com a sua cara @ymail.com ou> @rocketmail.

com.

November 11, 2008

Sorry, but that is not correct, . I have every admiration and support for

your ambitions and commitment, but please do not misrepresent what I said, and

what I would still say: In the absence of a blinded controlled trial you cannot

know if it is a change in your/others' behaviour/expectations/support (or

something else unanticipated) that may be causing the observed outcomes that

have changed since introducing the protocol (placebo effects are not confined to

the beliefs and expectations of the patient alone). Development is uneven and

often 'bursts' of progress happen (particularly in respect of some aspects of

language development), so some of the observations you describe are not unusual

among people not taking the protocol. The point of a controlled trial is to

attempt to disentangle those who would make that progress on placebo anyway from

those who make it when on the treatment and to see if the difference is

statistically significant (i.e. distinguishable from pure chance).

It has nothing to do with some " world view " (whatever that is supposed to

imply). It has everything to do with evidence from careful observation. To say I

would consider any person with Down syndrome to be " stuck forever " is (I'm sorry

to say) nonsense. I see many people with Down syndrome making progress from many

different starting points in many different circumstances (I am in India this

week and the wide variety of circumstances that I have observed people with Down

syndrome and their families finding themselves in here is - as you might imagine

- equally startling and disturbing). I would never consider any person with Down

syndrome to be " stuck " - I would not be able to find evidence to suggest that

this is the case.

I'm very happy to continue constructive debate and look at rational ways to

improve funding for meaningful controlled studies of interventions that promise

to improve quality of life for people with Down syndrome. But, please do not

resort to discussions of inaccurate " world views " and similar (and beside the

point) accusations. Let's stick to debating the evidence about the proposed

therapies that we are discussing. We should all be able to make more

constructive progress that way.

I look forward to catching up again before too long.

Kind regards,

-----------------------------------------------

From: DownSyndromeInfoExchange

On Behalf Of Cody

Sent: 11 November 2008 14:45

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

Thank you but it is right to share with others. My question to Buckley is

what is his alternative suggestions?

I did all the traditional approaches, OT, PT, speech plus some nontraditional,

neurodevelopmental, vitamins etc. Neal also, went to a very expensive private

school and he made very little progress. In Buckley's world view, Neal was stuck

forever. told me a year ago September, that it was my attitude toward Neal

that changed him not the medicine.

....

______________________________________________________________________

Are You Up for Reading? http://www.up-for-reading.org/

Down Syndrome Education International http://www.downsed.org/

Down Syndrome Education USA http://www.downsed-usa.org/

Down Syndrome Online http://www.down-syndrome.org/

This email has been scanned for viruses.

November 12, 2008

"I'm very happy to continue constructive debate and look at rational ways to improve funding for meaningful controlled studies of interventions that promise to improve quality of life for people with Down syndrome. "

I would love a 'constructive debate' or discussion.I would have loved to discuss the CMF protocol BEFORE you put out your negative letter. Not one of the signatores ever contacted me. In the letter, there were sweeping, generalized statements made w/o any information from any one involved in the study.

'The Changing Minds Foundation promotional videos do not prove the claims of benefit from the protocol. While the people shown are clearly doing well, none of the individuals shown are functioning beyond the wide range seen in others with the syndrome. Claimed changes following ¡treatment¢ could be the result of many factors. Only a controlled trial can give clear evidence of treatment effects.'

How do you know? No one contacted me about testing results. So you got your information from the video alone. I would be happy to share the information.

I have 100's of papers that support the information. I'm putting those scientific papers on one website for you and everyone to read. As soon as it is up I will let the list know.

What testing in a double blind placebo controlled study would you be satisfied with? How long would the study need to be? and how many participants would be satisfactory?

And I'll ask you again- what are your recommendations to see improvement in this population?

Subject: RE: [DownSyndromeInfoExchange] SCD & Changing Minds StatementTo: "DownSyndromeInfoExchange " <DownSyndromeInfoExchange >Date: Tuesday, November 11, 2008, 6:19 PMSorry, but that is not correct, . I have every admiration and support for

your ambitions and commitment, but please do not misrepresent what I said, and

what I would still say: In the absence of a blinded controlled trial you cannot

know if it is a change in your/others' behaviour/expectations/support (or

something else unanticipated) that may be causing the observed outcomes that

have changed since introducing the protocol (placebo effects are not confined to

the beliefs and expectations of the patient alone). Development is uneven and

often 'bursts' of progress happen (particularly in respect of some

aspects of language development), so some of the observations you describe are

not unusual among people not taking the protocol. The point of a controlled

trial is to attempt to disentangle those who would make that progress on placebo

anyway from those who make it when on the treatment and to see if the difference

is statistically significant (i.e. distinguishable from pure chance).

It has nothing to do with some "world view" (whatever that is

supposed to imply). It has everything to do with evidence from careful

observation. To say I would consider any person with Down syndrome to be

"stuck forever" is (I'm sorry to say) nonsense. I see many people

with Down syndrome making progress from many different starting points in many

different circumstances (I am in India this week and the wide variety of

circumstances that I have observed people with Down syndrome and their families

finding themselves in here is - as you might imagine - equally startling and

disturbing). I would never consider any person with Down syndrome to be

"stuck" - I would not be able to find evidence to suggest that this is

the case.

I'm very happy to continue constructive debate and look at rational ways to

improve funding for meaningful controlled studies of interventions that promise

to improve quality of life for people with Down syndrome. But, please do not

resort to discussions of inaccurate "world views" and similar (and

beside the point) accusations. Let's stick to debating the evidence about

the proposed therapies that we are discussing. We should all be able to make

more constructive progress that way.

I look forward to catching up again before too long.

Kind regards,

-----------------------------------------------

From: DownSyndromeInfoExchange

On Behalf Of Cody

Sent: 11 November 2008 14:45

To: DownSyndromeInfoExchange

Subject: Re: [DownSyndromeInfoExchange] SCD & Changing Minds Statement

Thank you but it is right to share with others. My question to Buckley is

what is his alternative suggestions?

I did all the traditional approaches, OT, PT, speech plus some nontraditional,

neurodevelopmental, vitamins etc. Neal also, went to a very expensive private

school and he made very little progress. In Buckley's world view, Neal was

stuck forever. told me a year ago September, that it was my attitude

toward Neal that changed him not the medicine.

.....

______________________________________________________________________

Are You Up for Reading? http://www.up-for-reading.org/

Down Syndrome Education International http://www.downsed.org/

Down Syndrome Education USA http://www.downsed-usa.org/

Down Syndrome Online http://www.down-syndrome.org/

This email has been scanned for viruses.

------------------------------------

1. Anything suggested on this site or opinions offered are not intended to be

medical or pharmaceutical advice or otherwise take the place of your physicians

orders, nor to diagnose or treat your specific health problems. Please discuss all methods of treatment with your practitioner.

2 *****WARNING: Flames and inappropriate treatment of other members on this

list will NOT be tolerated.

3. Our HOME page is http://groups.yahoo.com/group/DownSyndromeInfoExchange

where all archived posts as well as photos,links, files, articles etc. are

found. You "MUST" have a Yahoo ID and pass word to enter it.

To contact Carol, owner & moderator

doihavtasay@...

To contact Kathy, owner & moderator

kathy_r@...

To contact , owner & moderator

noliptoday@...

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