Re: My son will participate in an NIH study

August 27, 2009

Lori- I think it's wonderful! Maybe they are finally " listening " to all the

parents who have recovered children from autism.

My husband is a scientist and he knows firsthand how it is very hard to get 100%

NIH funded because there is so much competition for that money. I see this as a

very positive thing.

Good for you for participating!

Nanci

>

> 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:

> Fax:

> Email: lknowles@...

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

>

August 27, 2009

this is really good news. Lori, what worked for you? Thanks,LuzListmates, 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 KnowlesGeneral Manager (and mom to , age 11, recovered)New Beginnings Nutritionals 7797 Quivira Rd Lenexa, KS 66215 Phone: Fax: Email: lknowlesnbnus URL: http://www.nbnus.com/ Luz Arevalo & Ed Zabinzabin.luzed@...Directly from the Red Barn. No Viruses Attached. Go Green! Resist the temptation to Print this Message.

August 27, 2009

---WOW! That is AWEsome! Do you mind if I post this to other groups? I am new

here, btw. I am single mom of 3 20, 18, 18. is

severely disabled with Autism and now has Tourettes as well. He has regressed in

the last few years, particularly after dental surgery. I believe he woke during

the procedure. He had IV Versed...BAD! Apparently his basal ganglia is damaged,

causing his OCD, Prompt dependent-ness and Tics. I did some research on

Risperdal and found that it may be the culprit. He was on Risperdal 2 times. He

became prompt dependent shortly after he was on it in 2005 and his tics began

after he was on Risperdal in 2007. I am DEFINITELY swearing off all meds for

this kid...every one seems to do the opposite for him. I am hoping to learn more

on this list.

STILL in the trenches! but clawing my way out, Lindy

In mb12 valtrex , " Lori Knowles " 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:

> Fax:

> Email: lknowles@...

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

>

August 28, 2009

That's really interesting. We were given an autism diagnosis in November of 08.

Began Biomedical treatment in November 08. In May '09, we visited NIMH and saw

Black. He said our son wasn't even on the spectrum after 2 1/2 days of

testing. He was actually the first mainstream doc that didn't question my use

of biomedical treatments. Even though his opinion was that we weren't even on

the spectrum we continued to do biomedical treatments and ABA therapy. We are

continuing to see great results.

Dionne

August 28, 2009

Luz,

We did the following:

GFCFSF Diet â€“ he was a big diet responder

Andy Cutler Chelation (with no ALA)

Aggressive yeast and bacteria treatment (ongoing)

LOTS of supplements

ABA â€“ 2 .5

years Â (8-16 hrs per week)

Cranial Sacral

OT/Speech Therapy

NAET

Ionic Footbaths (helped with focus and ADD symptoms)

I engaged him continuously â€“ using ABA techniques with him throughout the day.

(This was before MB12 and HBOT)

We started early and hit it hard.Â My guess he was

moderately autistic but didnâ€™t get the official diagnosis until after being 6

weeks on the diet with LOTS of improvements. Â Official label at that point was

Mild Autism.Â It took 4.5 years until we saw the light of recovery. Â It was NOT

quick.

We are very blessed and still watching him carefully as he

is getting ready to enter into adolescence.Â He is still on the diet (although pushing

me hard to eat lunches at his middle school) and supplements.Â We are still

working on a mild on-going yeast issue, especially his diet is a lot harder to

control now.

Hope this information helps.Â

Lori Knowles

General Manager

New Beginnings Nutritionals

7797 Quivira Rd Lenexa, KS

66215

Phone:

Fax:

Email: lknowles@...

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

Re: My son will participate in an

NIH study

Posted

by: " Luz Arevalo & Ed Zabin " zabin.luzed@...

luzarevalo23

Thu Aug 27, 2009

6:57 pm (PDT)

this is really good news. Lori, what worked for you?

Thanks,

Luz

>

> 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 ï¿½

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

> well.

>

> These results will be compared with kids who have not recovered ï¿½

> who have done the same types of therapies ï¿½

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:

> Fax:

> Email: lknowlesnbnus

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

>

August 28, 2009

Can we participate if our recovered child did not have MRI, or EEG other

documents prior? We didn't have this available so could only document his

status now. Is this what they are looking for? We too have worked for 4+

years of daily aggressive work. He's now newly 6. I'm glad to see studies

like this because so many say they tried diet and it didn't work, but without

objective data regarding what diet and how they implemented we have no idea what

" tried the diet " means?10 families could do a gfcfsf diet and they all would

look different. Some would eat gfcfsf cereals with gfcfsf milks for breakfast

while another family would serve cultured vegetables, a green smoothie and raw

egg yolk for breakfast. We need more objectivity so parents can take their

best guess the direction to follow.

> > >> > 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 ï¿½ > >

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

> These results will be compared with kids who have not recovered ï¿½ > > who

have done the same types of therapies ï¿½ 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: > > Fax: > > Email:

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

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

August 28, 2009

ï»¿

----- Original Message -----

From: tylertaylin

===>There is no magic to the "diet". It doesn't cure Autism. We "tried the diet" and it made her worse, much worse. IMHO, there is way too much emphasis on "the diet". If it works for you, fine, use it. It didn't work here, and honestly, I got mighty tired of people saying we didn't do it right. The diet is not necessary for every child.

Can we participate if our recovered child did not have MRI, or EEG other documents prior? We didn't have this available so could only document his status now. Is this what they are looking for? We too have worked for 4+ years of daily aggressive work. He's now newly 6. I'm glad to see studies like this because so many say they tried diet and it didn't work, but without objective data regarding what diet and how they implemented we have no idea what "tried the diet" means?10 families could do a gfcfsf diet and they all would look different. Some would eat gfcfsf cereals with gfcfsf milks for breakfast while another family would serve cultured vegetables, a green smoothie and raw egg yolk for breakfast. We need more objectivity so parents can take their best guess the direction to follow. > > >> > 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 Ã¯Â¿Â½ > > overnight stay, and blood work to look at potent genetic issues as > > well.> >> > These results will be compared with kids who have not recovered Ã¯Â¿Â½ > > who have done the same types of therapies Ã¯Â¿Â½ 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: > > Fax: > > Email: > URL: <http://www.nbnus.com/> http://www.nbnus.com/> >> >>

August 28, 2009

I personally like to hear stories of people's children being recovered w/out diets b/c we didn't start biomed with my daughter until she was 16/17. It is really hard to try to get an older child to comply with diet when they've lived their whole lives eating what they want. At first she would comply but when she never felt any better, so she just started to get angry about it, and in fact, would decline all treatments until I promised to leave her diet alone. So now I have an 18-year-old who eats horribly, but she is still taking everything I ask her to, and she IS improving. To what extent she will improve, I of course, don't know the answer to that yet.

Thank you, , for reminding me this can be/has been done w/out diet intervention

Subject: Re: Re: My son will participate in an NIH studyTo: mb12 valtrex Date: Friday, August 28, 2009, 11:10 AM

ï»¿

----- Original Message -----

From: tylertaylin

===>There is no magic to the "diet". It doesn't cure Autism. We "tried the diet" and it made her worse, much worse. IMHO, there is way too much emphasis on "the diet". If it works for you, fine, use it. It didn't work here, and honestly, I got mighty tired of people saying we didn't do it right. The diet is not necessary for every child.

Can we participate if our recovered child did not have MRI, or EEG other documents prior? We didn't have this available so could only document his status now. Is this what they are looking for? We too have worked for 4+ years of daily aggressive work. He's now newly 6. I'm glad to see studies like this because so many say they tried diet and it didn't work, but without objective data regarding what diet and how they implemented we have no idea what "tried the diet" means?10 families could do a gfcfsf diet and they all would look different. Some would eat gfcfsf cereals with gfcfsf milks for breakfast while another family would serve cultured vegetables, a green smoothie and raw egg yolk for breakfast. We need more objectivity so parents can take their best guess the direction to follow. > > >> > 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 Ã¯Â¿Â½ > > overnight stay, and blood work to look at potent genetic issues as > > well.> >> > These results will be compared with kids who have not recovered Ã¯Â¿Â½ > > who have done the same types of therapies Ã¯Â¿Â½ 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: > > Fax: > > Email: <mailto:lknowles% 40nbnus.com> lknowles@... > > URL: <http://www.nbnus. com/> http://www.nbnus. com/> >> >>

August 28, 2009

I think we all have the same intentions here. I'm just saying that for new

families trying to navigate it would be nice (for us included) who spend endless

hours trying to get the young ones or older ones to do " the diets......multiple

approaches that are endless " to have some objective information.

A statement like " the diet made her worse " needs clarification. What does this

mean in objective terms? Nobody wants to sit for hundreds of hours and have NO

life doing dietary work if it doesn't work....so I believe more objective info

will make information more effective for families. You could do a gfcfsf diet

and still eat bad oils, too many carbs, and sugar and not make a bit of

progress. I'm just saying we need clarification and objecitive data to reach

MORE kids who desearve this chance.

I personally would like to see a specific menu of what the kids are eating daily

for many months when someone says " the diet didn't work. " Or " the diet did

work "

To all the parents piecing info together we are all in the same spot and all

want good things for every child. I'm saying the scientific community needs to

have studies that break down specifically what is working and why. What's not

working and why.

I disagree that the notion of putting minerals, good fats, proteins, and

vitamins into a person doesn't matter. Of course it matters. Now to what

degree with which subtypes of children affected and at what ages are all things

we need broken down.

As for 's older child who has a crappy diet but is on board with other

parts....this is wonderful!!! An example of a family fighting to do whatever

they can to get the best wellness for the child. We are all doing our best in

these difficult situations. You can't strap a 17 yr old into a booster for 2

years like I did with my babies newly affected. However I don't want to be

yelled at either for sharing hope for the newly affected families. We all do

the best we can.

> > >> > 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 Ã¯Â¿Â½ > > overnight stay, and blood work to look at potent

genetic issues as > > well.> >> > These results will be compared with kids who

have not recovered Ã¯Â¿Â½ > > who have done the same types of therapies Ã¯Â¿Â½

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: > > Fax: (913)

248-7609> > Email:Â <mailto:lknowles% 40nbnus.com> lknowles@ > > URL:Â

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

>

August 28, 2009

----- Original Message -----

From: tylertaylin

===>Made her worse: she lost language and weight, and cried frequently. I have stated this many times. I consider loss of language to be a serious symptom that something is wrong.

And I don't think people who advocate the diet just want people to state why. I think it is hard for people whose child got so much better with a diet change to understand that this is not true for other kids. Even harder for dans! who know little else to do beside tell you your child has to do the diet.

For us, and a lot of others, the diet is not necessary. For others it is, I'm not denying that. The diet is not a cure, at best it's a temporary solution until you can fix the problem. Diet was not a problem here, she drank a quart of milk and ate wheat and we chelated and she recovered.

I think we all have the same intentions here. I'm just saying that for new families trying to navigate it would be nice (for us included) who spend endless hours trying to get the young ones or older ones to do "the diets......multiple approaches that are endless" to have some objective information. A statement like "the diet made her worse" needs clarification. What does this mean in objective terms? Nobody wants to sit for hundreds of hours and have NO life doing dietary work if it doesn't work....so I believe more objective info will make information more effective for families. You could do a gfcfsf diet and still eat bad oils, too many carbs, and sugar and not make a bit of progress. I'm just saying we need clarification and objecitive data to reach MORE kids who desearve this chance. I personally would like to see a specific menu of what the kids are eating daily for many months when someone says "the diet didn't work." Or "the diet did work" To all the parents piecing info together we are all in the same spot and all want good things for every child. I'm saying the scientific community needs to have studies that break down specifically what is working and why. What's not working and why. I disagree that the notion of putting minerals, good fats, proteins, and vitamins into a person doesn't matter. Of course it matters. Now to what degree with which subtypes of children affected and at what ages are all things we need broken down. As for 's older child who has a crappy diet but is on board with other parts....this is wonderful!!! An example of a family fighting to do whatever they can to get the best wellness for the child. We are all doing our best in these difficult situations. You can't strap a 17 yr old into a booster for 2 years like I did with my babies newly affected. However I don't want to be yelled at either for sharing hope for the newly affected families. We all do the best we can.> > >> > 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 Ã¯Â¿Â½ > > overnight stay, and blood work to look at potent genetic issues as > > well.> >> > These results will be compared with kids who have not recovered Ã¯Â¿Â½ > > who have done the same types of therapies Ã¯Â¿Â½ 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: > > Fax: > > Email:Â <mailto:lknowles% 40nbnus.com> lknowles@ > > URL:Â <http://www.nbnus. com/> http://www.nbnus. com/> >> >>>

August 28, 2009

The kids are all different and I certainly NEVER want to add stress to a hard

working mommy. We all bring valuable insight and we all want the same things.

I just look forward to the day when we all have more objective data to determine

what subtypes kids are in and what are the most effective strategies.

When I took my son off of many allergens including sugar he acted like a heroin

addict, starved for 14 days (had to syringe water into him) and eventually he

ate. As he only wanted bread/dairy. He screamed and lost 2 lbs in the process.

He didn't have language yet so I can't say he lost it. He certaninly " lost his

mind " . I don't think the diet caused this, I think his altered biochemistry

and damage caused these reactions. Very scary to watch.

Blessings