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Re: My son will participate in an NIH study

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Is there anywhere on the web we can go to read up on the study?

TIA,

Robyn

From: Lori Knowles <lknowles@...>

Subject: My son will participate in an NIH study

chelatingkids2 , mb12 valtrex ,

trying_low_oxalates , autism treatment ,

abmd ,

Date: Thursday, August 27, 2009, 8:47 AM

 

Listmates,

I just got off the phone with Black, a researcher with NIH.

They finally called after putting out a request for kids who may have

recovered from autism which I responded to.

They are getting ready to undertake a HUGE research study to try to

understand why some kids respond to certain treatments and why others do

not.

The study will include an intensive diagnostic evaluation, interview with

parents and former providers, past medical records, MRI, EEG - overnight

stay, and blood work to look at potent genetic issues as well.

These results will be compared with kids who have not recovered - who have

done the same types of therapies - and also to normal kids.

This study is funded 100% by NIH and because it is government funded, I

have to admit I am a little wary of their intentions.

However getting all the diagnostic work-up for free will be awesome to

evaluate where he is and what additional things we may need to work on.

Please give me feedback if anyone knows more about this study and or can

offer me any advice.

Thanks,

Lori Knowles

General Manager (and mom to , age 11, recovered)

New Beginnings Nutritionals

7797 Quivira Rd Lenexa, KS 66215

Phone: (913) 754-0458

Fax: (913) 248-7609

Email: lknowlesnbnus (DOT) com

URL: http://www.nbnus. com/

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My is going to NIH for a different study (albinism), but his lead

researcher is trying to find out what other testing can be done, especially

autism, while we are there. I will tell his lead researcher I am

interested in the study being done by Black--my son is also mostly

recovered, but still has issues I think are related to 's syndrome,

which can appear like autism, but much more social, non verbal/delayed

turning into strong speaking ability, and while most can be classified as

some degree of MR, 4% have hyperlexia, which my son does.. My son

definitely regressed, and it was documented by early intervention, they had

been serving him since he was 7 weeks old, so we KNOW he had true regressive

autism.

Bonnie, mom to 11/27/04, Autism, Albinism, Hyperlexia

On Thu, Aug 27, 2009 at 10:47 AM, Lori Knowles <lknowles@...> wrote:

>

>

> Listmates,

>

> I just got off the phone with Black, a researcher with NIH.

>

> They finally called after putting out a request for kids who may have

> recovered from autism which I responded to.

>

> They are getting ready to undertake a HUGE research study to try to

> understand why some kids respond to certain treatments and why others do

> not.

>

> The study will include an intensive diagnostic evaluation, interview with

> parents and former providers, past medical records, MRI, EEG - overnight

> stay, and blood work to look at potent genetic issues as well.

>

> These results will be compared with kids who have not recovered - who have

> done the same types of therapies - and also to normal kids.

>

> This study is funded 100% by NIH and because it is government funded, I

> have to admit I am a little wary of their intentions.

>

> However getting all the diagnostic work-up for free will be awesome to

> evaluate where he is and what additional things we may need to work on.

>

> Please give me feedback if anyone knows more about this study and or can

> offer me any advice.

>

> Thanks,

>

> Lori Knowles

> General Manager (and mom to , age 11, recovered)

> New Beginnings Nutritionals

> 7797 Quivira Rd Lenexa, KS 66215

> Phone: (913) 754-0458

> Fax: (913) 248-7609

> Email: lknowles@... <lknowles%40nbnus.com>

> URL: http://www.nbnus.com/

>

>

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I think that is great and are willing to share what you have done. Hopefully

this is one of those steps that have changed the perception of the road to

recovery or even that recovery is possible. If we were further along, I would

have definitely volunteered.

S

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