- New to the group

[Guest guest]

Hi !

Great to see you here! Love your participation. You

are awesome! I admire your dedication. I have been

following the threads in the DSTNI group lately.

Clearly, there is another critic out there. They come

a dime a dozen. ly I put my money on the mom with

her heart so in tuned with her own child. My advice is

for parents to bounce ideas of their child's

neurologist and pediatrician.

Anywho...I have a question about the protocol. I tried

to find a Phosphatidyl Choline that is not soy based.

Am I doing something wrong or is it only available soy

based. Freddie has hypothyroidism and I (as well as

his Endocrin doc) am against using any soy products.

Also everything I am seeing is tablet form. Help?

nna

Mommy to Freddie 6yrs

Full Inclusion Kindy (Again -But it's a good thing!!!)

--- " teresa.cody " <teresa.cody@...> wrote:

> 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.

>

>

>

________________________________________________________________________________\

____

Never miss a thing. Make your home page.

http://www./r/hs