Re: Re: Children with Starving Brains

[Guest guest]

Hi All!

I don't usually post but wanted to share....my son has been on low dose

naltrexone since the first of March.....LDN is supposed to help with opiod

excess but mainly to shift the immune system which is out of balance in many ASD

kids. Many parents in the LDN yahoo group comment on golden colored diarrhea

after starting LDN. Some even stopped because of it. Dr. McCandless mentioned

to the group that kids who are SCD typically do better with the LDN so since

Mikey started having the above mentioned diarrhea we started SCD. (another

thing that helped us decide to do SCD was being ill x 5 days, not

eating, then days 6 & 7 he was so calm and had much less autistic behavior. Day

8 and on all the old behaviors came back and the only thing that changed was he

started eating again....had been GF/CF/SF for over a year so those things

weren't the problem but rice and potatoes were about all he would eat so I

decided those things were the problem! ) Anyway, after

starting SCD the diarrhea stopped and became much calmer with less

aggression.....then 5 weeks into SCD he potty trained in ONE DAY!! He's 5 and

we tried a good 6 months last summer into the fall. His ABA therapy is going

great and he seems happier than ever. His " pot belly " is gone....prior to SCD

his abdominal girth would vary from day to day by as much as 3 inches! I could

go on.....many other factors involved, too, but I don't want to get too windy!!

Deanna (Mikey's mom)

davis wrote:

Thanks Suzanne,

You're a wealth of info.

So Dr. JM does mention SCD?in her newest ed.? ...

Suzanne wrote:

Surprisingly, it does not. Dr. JM is still a big fan of the opioid

theory (which I agree with), but seems to beleive SCD is reserved

for severe gut kids. She endorses SCD, but doesn't push for it.

A more pro-SCD biomedical book is the book by Sid Baker and Jon

Pangborn " Effective Biomedical Treatments for Autism " (I think

that's the title).

Suzanne

>

> Antoinette/ anyone who might know,

> Does the newest edition of Dr. McCandless' book reccomend SCD

over GFCFSF?

> Agape,

>

>

>

> For information on the Specific Carbohydrate Diet, please read the

book _Breaking the Vicious Cycle_ by Elaine Gottschall and read the

following websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

>

>

>

>

[Guest guest]

Thanks Deanna,

So it sounds like Dr. McCandless is on board with SCD.

Way to go with your little guy!... Isn't it nice when they are potty trained.

Agape,

Deanna wrote:

Hi All!

I don't usually post but wanted to share....my son has been on low dose

naltrexone since the first of March.....LDN is supposed to help with opiod

excess but mainly to shift the immune system which is out of balance in many ASD

kids. Many parents in the LDN yahoo group comment on golden colored diarrhea

after starting LDN. Some even stopped because of it. Dr. McCandless mentioned

to the group that kids who are SCD typically do better with the LDN so since

Mikey started having the above mentioned diarrhea we started SCD. (another

thing that helped us decide to do SCD was being ill x 5 days, not

eating, then days 6 & 7 he was so calm and had much less autistic behavior. Day

8 and on all the old behaviors came back and the only thing that changed was he

started eating again....had been GF/CF/SF for over a year so those things

weren't the problem but rice and potatoes were about all he would eat so I

decided those things were the problem! ) Anyway, after

starting SCD the diarrhea stopped and became much calmer with less

aggression.....then 5 weeks into SCD he potty trained in ONE DAY!! He's 5 and

we tried a good 6 months last summer into the fall. His ABA therapy is going

great and he seems happier than ever. His " pot belly " is gone....prior to SCD

his abdominal girth would vary from day to day by as much as 3 inches! I could

go on.....many other factors involved, too, but I don't want to get too windy!!

Deanna (Mikey's mom)

davis wrote:

Thanks Suzanne,

You're a wealth of info.

So Dr. JM does mention SCD?in her newest ed.? ...

Suzanne wrote:

Surprisingly, it does not. Dr. JM is still a big fan of the opioid

theory (which I agree with), but seems to beleive SCD is reserved

for severe gut kids. She endorses SCD, but doesn't push for it.

A more pro-SCD biomedical book is the book by Sid Baker and Jon

Pangborn " Effective Biomedical Treatments for Autism " (I think

that's the title).

Suzanne

>

> Antoinette/ anyone who might know,

> Does the newest edition of Dr. McCandless' book reccomend SCD

over GFCFSF?

> Agape,

>

>

>

> For information on the Specific Carbohydrate Diet, please read the

book _Breaking the Vicious Cycle_ by Elaine Gottschall and read the

following websites:

> http://www.breakingtheviciouscycle.info

> and

> http://www.pecanbread.com

>

>

>

>

>

[Guest guest]

Hi !

Good to hear from you and congrats on the normal labs!!!! I know they've

been tough to treat. I'd love to come to the next biomed meeting. I'll mark my

calender...I could drive if you want to carpool. Just let me know and I'll see

you soon.

Deanna

timmauck wrote:

Hi,

I was so glad to see your post and get an update on Mikey. Glad to

hear you took the jump into SCD and that he is responding so well.

Robbie is continueing to make some nice gains. We have recently

added coconut water kefir and cultured veggies (both from BED). I

just got his latest OATS and he is normal in aribinose and also the

DHPPA marker for clostridia. I don't remember when both of these

were normal!! We also had the HBOT chamber at our house all of March

and April.

Give me a call - our next biomed support group is on May 21st.

Take care,

Mauck

Waukesha, WI

> >

> > Antoinette/ anyone who might know,

> > Does the newest edition of Dr. McCandless' book reccomend SCD

> over GFCFSF?

> > Agape,

> >

> >

> >

> > For information on the Specific Carbohydrate Diet, please read

the

> book _Breaking the Vicious Cycle_ by Elaine Gottschall and read

the

> following websites:

> > http://www.breakingtheviciouscycle.info

> > and

> > http://www.pecanbread.com

> >

> >

> >

> >

> >

[Guest guest]

I

> just got his latest OATS and he is normal in aribinose and also the

> DHPPA marker for clostridia. I don't remember when both of these

> were normal!!

A friend of mine started SCD 2 weeks after we did on her 5 yo ASD son.

She's not on this list.

She just called me to say that his microbial OAT came back very good!

His bacteria markers were all normal after being very high. Two yeast

indicator were a little high, but much better than before. She didn't

even do the intro diet or gradual introduction of foods, just cut out

all foods that aren't legal. SO now she will cut back to some easier to

digest foods and see what happens.

Becky

mom to Noah (6, HFA) and (3, NT)

SCD 2 months

[Guest guest]

Janet,

After lab testing showed that the clostridia was still gone after 2 years

this past January, I pulled the saccro. b. for a while to give his body a

break from it (for a little over 2 months). Then after the DAN conference,

I put him back on it based on advice at an evening session on diets and

supplements. Honestly, I'm not sure whether that was the right thing to do

or not - you know how it is - sometimes I feel like we're the " blind

leading the blind " with some of these things... but I am indeed afraid of

the clostridia coming back - it is so hard to get rid of.

Not sure if this helps....

Debbie, Mom to Simon, ASD

At 09:04 PM 5/8/2006, you wrote:

>Thanks Debbie! When we tried SCD last year for a short time I

>remember some good info about Saccromyces boulliardii coming through

>the list and printed it out for future reference. Will definitely

>look into it further. Do you still have to periodically give it to

>keep the Clostridia at bay, or once it was gone did it finally stay

>gone?

>Janet, mom to Cody- 5 yrs old- multi food allergies and issues- SCD

>since 4-17-06 and 3 lbs gained!! (Hooray- he needs it!)

>

>

>

> >

> > Yes, my son Simon had terrible trouble with Clostridia. Saccromyces

> > boulliardii finally took care of it - not sure whether it's SC

>legal, but

> > S.B. is touted as being able to succesfully treat and prevent

>clostridia's

> > recurrence in a lot of kids, which is huge, considering how

>difficult it is

> > to get rid of. It was mentioned a lot at the last DAN conference

>(Simon

> > went on it almost 2 years ago).

> >

> > Debbie - Mom of Simon, gradually fading into SCD from 6 years of

>GFCFSF,

> > gearing up for intro diet (July 3rd target date for that!)

>

>

>

>

>

>

>

>

>For information on the Specific Carbohydrate Diet, please read the book

>_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

>websites:

>http://www.breakingtheviciouscycle.info

>and

>http://www.pecanbread.com

>

>