new to the group

[Guest guest]

Hi All,

My name is Cody and Carol invited me to join this group. Thank

you. We started a new foundation called the Changing Minds

Foundation. It is dedicated to improving the mental abilities of

those with DS. We have started a 6 person clinical study which is

using a group of medications, herbs, and fatty acids. Each chosen for

a specific reason. I would be happy to answer any questions anyone

has on this.

The protocol for the study is:

Ginkgo Biloba

Prozac

Focalin XR

Phosphatidyl Choline

Body Bio Balanced Oil

Folinic acid/B12

A year and a half ago I thought theoretically this should work (my

pediatrician thought so too) but of course I didn't have solid

evidence.(and I will be happy to discuss each piece and why it is

included) Now we are watching the fantastic changes. My son Neal has

been on all of the above for 1 1/2 years and I think he has reached

what I would call the tipping point. What I mean by that is that he

been getting better and better but a slow steady progress and he just

took a huge leap.

Last fall 2006, Neal read on a kindergarten level. In one year, he

advanced at a normal rate and now reads on a 2nd grade level. But

what all of a sudden kicked in was that he can read a paragraph in

the 2nd grade workbook and answer the questions.

The entire fall of 2006, I gave up on adding and subtraction because

I was doing it not him. So all we did every day was count to 100 on

the 100s board and that was very hard for him. In the beginning it

took him an hour to count all those numbers. He couldn't stay

focused. He pronounced 30 and 40 incorrectly as well as 60,70,80

which he pronounced 16,17,18 and then at one point he flipped that.

He only began working on adding and subtracting last Jan. No he can

add and subtract 2 and 3 columns with carry over and borrowing. The

other day I made 3 number columns to solidify that he has to add all

the numbers because sometimes he would carry over and then forget to

add the one. And his response was great after the first problem he

got it. You know when you look at your child and you know they have

it.

I guess that is what I mean by the tipping point. He now gets

concepts. Whereas, before he looked at me blankly.

I will tell you this, this is not magic -it is work. But it is

great!!!!

I know I have met a lot of resistance to the idea that we should

treat the symptoms of DS. I have no idea why we put ourselves in that

position. OK granted no one knew what was going on before a few years

ago but now there is a pretty good bead on what is causing what. The

problem is that the people who understand what is going on

biochemically, physiologically are the researchers. they study mice

in the lab. Dr. Mobley at Stanford has tried to bring it to the

clinic but it will take a long time to get there.

In this country the system is set up that at this point in research

the pharmaceutical company steps in. They will not be interested.

There is nothing to patent and the population is too small. So how do

we get this into practice?

I don't know. I think we as parents have to demand treatment. There

is nothing in this protocol that is difficult. Any neurologist is

capable of following this.

I know this is very long, but that is why we got private funding and

started a small trial. So that we could show improvement so others

may benefit.

I'll be happy to answer and questions.