Re: new member--tics and probiotics and practitioners

Posted March 29, 2011 · March 29, 2011

Dr. G recommends Kyodophilus for a probiotic and I believe he recommends one

for most, if not all, of his patients.

The all-new website is in development. I got a sneak peak this morning,

but I'm not sure if it's all live just yet. It should be in the next week.

Kristy Nardini

Tazzini Stainless Steel Bottles

www.tazzini.com

kristy@...

858.243.1929

<http://www.facebook.com/tazzinicompany> Find us on Facebook!

<http://www.twitter.com/tazzini> Follow us on Twitter!

From: [mailto: ] On Behalf Of

ebrooksasplund

Sent: Tuesday, March 29, 2011 6:31 AM

Subject: new member--tics and probiotics and practitioners

Hello,

My name is Esther and I have a young boy (nearly 9 years) on the autism

spectrum. We are in Indiana. After reading Dr. G's book, I have been

thinking of switching him to the protocol in the future. My only

hesitation is that he definitely showed signs of distress/ASD right from the

beginning (no obvious regression at any point due to some type of

infection). We've only done the dietary (mainly SCD, but with little to no

nuts) and supplement portion of the DAN protocol, and he is doing excellent

(no behavioral problems and in regular class without support and friends!).

However, he has a tic and persistant perservations (maybe OCD) that I

believe are immune related (like PANDAS or PITANDS). He's seeing an

internationally recognized pediatric neurologist at Cincinnati Children's

hospital who should be able to determine if he has PANDAS or TS or something

else, so I am not switching anything until that appointment in June. I'm

also waiting for the website to be updated enough so that I can have my

pediatrician review the information and maybe get " on board " with Dr. G's

protocol or give me a referral.

I've been following this listserv for a short time. I have a few questions

to the veterans:

1. Are any of your children drug free and recovered? How long, on average,

do these children have to be on these types of meds? One thing that appeals

to me with NID protocol is finally getting my son off supplements in future.

2. I'm really curious about the probiotics. I really like them but it looks

like they are not recommended on Dr. G's protocol. I think my son has

greatly benefited from these. He has used a super-potent probiotic (VSL#3).

Since using this probiotic, he has no GI issues now, absorbs foods and is

growing better (after years of failure to thrive), no yeast, lower bacteria,

lower oxalates and great health. This winter, he was my only child (of 4)

who did not get the rotavirus--and my other children had 3 rounds of

vomiting!! He shares a bedroom with them and even a water bottle with one of

them and still did not get these viruses. It was amazing. He almost never

gets sick. Therefore, I'm really hesistant to ever stop using a probiotic.

3. Do any of you know when the site will be fully updated? It has a lot

of broken links and old forms. Another thing that I noticed is that the

advisory board list was removed. I think that I could possibly convince my

pediatrician to run some of these tests or get a referral to Dr. G, but

having an updated site would be of great benefit. Just wondering.

4. Do any of you know what Dr. G thinks about IVIG? I know this is pretty

controversial and not recommended unless a child has PANDAS without benefit

from other meds.

Thanks for your advice in advance!

Esther

Posted March 30, 2011 · March 30, 2011

VSL#3 has strep strains in it. I would be very careful with PANDAS and this

probiotic. This is debatable in the field, but our PANDAS didn't rear its ugly

head until a year of ThreeLac use (strep strain).

For whatever its worth....

BTW...what is Dr. G's spin on PANDAS? We too, are thinking of going to but

on IVIG for autoimmune encephalopathy and PANDAS>

Kersten

www.thefarrellfoundation.org

www.chicagonow.com/fightingautism

>

> Dr. G recommends Kyodophilus for a probiotic and I believe he recommends one

> for most, if not all, of his patients.

>

> The all-new website is in development. I got a sneak peak this morning,

> but I'm not sure if it's all live just yet. It should be in the next week.

>

> Kristy Nardini

>

> Tazzini Stainless Steel Bottles

>

> www.tazzini.com

>

> kristy@...

>

> 858.243.1929

>

> <http://www.facebook.com/tazzinicompany> Find us on Facebook!

>

> <http://www.twitter.com/tazzini> Follow us on Twitter!

>

> From: [mailto: ] On Behalf Of

> ebrooksasplund

> Sent: Tuesday, March 29, 2011 6:31 AM

>

> Subject: new member--tics and probiotics and practitioners

>

> Hello,

>

> My name is Esther and I have a young boy (nearly 9 years) on the autism

> spectrum. We are in Indiana. After reading Dr. G's book, I have been

> thinking of switching him to the protocol in the future. My only

> hesitation is that he definitely showed signs of distress/ASD right from the

> beginning (no obvious regression at any point due to some type of

> infection). We've only done the dietary (mainly SCD, but with little to no

> nuts) and supplement portion of the DAN protocol, and he is doing excellent

> (no behavioral problems and in regular class without support and friends!).

> However, he has a tic and persistant perservations (maybe OCD) that I

> believe are immune related (like PANDAS or PITANDS). He's seeing an

> internationally recognized pediatric neurologist at Cincinnati Children's

> hospital who should be able to determine if he has PANDAS or TS or something

> else, so I am not switching anything until that appointment in June. I'm

> also waiting for the website to be updated enough so that I can have my

> pediatrician review the information and maybe get " on board " with Dr. G's

> protocol or give me a referral.

>

> I've been following this listserv for a short time. I have a few questions

> to the veterans:

> 1. Are any of your children drug free and recovered? How long, on average,

> do these children have to be on these types of meds? One thing that appeals

> to me with NID protocol is finally getting my son off supplements in future.

> 2. I'm really curious about the probiotics. I really like them but it looks

> like they are not recommended on Dr. G's protocol. I think my son has

> greatly benefited from these. He has used a super-potent probiotic (VSL#3).

> Since using this probiotic, he has no GI issues now, absorbs foods and is

> growing better (after years of failure to thrive), no yeast, lower bacteria,

> lower oxalates and great health. This winter, he was my only child (of 4)

> who did not get the rotavirus--and my other children had 3 rounds of

> vomiting!! He shares a bedroom with them and even a water bottle with one of

> them and still did not get these viruses. It was amazing. He almost never

> gets sick. Therefore, I'm really hesistant to ever stop using a probiotic.

> 3. Do any of you know when the site will be fully updated? It has a lot

> of broken links and old forms. Another thing that I noticed is that the

> advisory board list was removed. I think that I could possibly convince my

> pediatrician to run some of these tests or get a referral to Dr. G, but

> having an updated site would be of great benefit. Just wondering.

> 4. Do any of you know what Dr. G thinks about IVIG? I know this is pretty

> controversial and not recommended unless a child has PANDAS without benefit

> from other meds.

>

> Thanks for your advice in advance!

> Esther

>

Posted March 30, 2011 · March 30, 2011

The only Strep species I've heard associated with PANDAS is Streptococcus

pyogenes (also called group A strep). This is the agent of strep throat,

and is the trigger for rheumatic fever, a heart problem that may also

include, Sydenham's chorea (which has a movement disorder similar to

PANDAS); and post-streptococcal glomerulonephritis (kidney disease). A

very specific antibody to this specific type of streptococcus seems to be

part of the causation of PANDAS. Other forms of strep (group B--which can

cause life-threatening infections in infants), Group G (formerly

streptococcus faecalis, now Enterococcus faecalis), Streptococcus

pneumoniae (the agent of usual bacterial pneumonia)--are all part of the

genus Streptococcus, but are not part of the PANDAS story.

Streptococcus faecalis (now called Enterococcus faecalis) is part of

ThreeLac; another strep, Streptococcus thermophilus, is in VLS#3. I've

never heard that either could be involved with PANDAS.

SG Kahler

On Wed, 30 Mar 2011 09:13:25 -0400, Kersten <kerstenrojas@...> wrote:

>

> VSL#3 has strep strains in it. I would be very careful with PANDAS and

> this probiotic. This is debatable in the field, but our PANDAS didn't

> rear its ugly head until a year of ThreeLac use (strep strain).

>

> For whatever its worth....

>

> BTW...what is Dr. G's spin on PANDAS? We too, are thinking of going to

> but on IVIG for autoimmune encephalopathy and PANDAS>

>

> Kersten

>

> www.thefarrellfoundation.org

> www.chicagonow.com/fightingautism

>

>>

>> Dr. G recommends Kyodophilus for a probiotic and I believe he

>> recommends one

>> for most, if not all, of his patients.

>>

>> The all-new website is in development. I got a sneak peak this

>> morning,

>> but I'm not sure if it's all live just yet. It should be in the next

>> week.

>>

>> Kristy Nardini

>>

>> Tazzini Stainless Steel Bottles

>>

>> www.tazzini.com

>>

>> kristy@...

>>

>> 858.243.1929

>>

>> <http://www.facebook.com/tazzinicompany> Find us on Facebook!

>>

>> <http://www.twitter.com/tazzini> Follow us on Twitter!

>>

>> From: [mailto: ] On Behalf Of

>> ebrooksasplund

>> Sent: Tuesday, March 29, 2011 6:31 AM

>>

>> Subject: new member--tics and probiotics and practitioners

>>

>> Hello,

>>

>> My name is Esther and I have a young boy (nearly 9 years) on the autism

>> spectrum. We are in Indiana. After reading Dr. G's book, I have been

>> thinking of switching him to the protocol in the future. My only

>> hesitation is that he definitely showed signs of distress/ASD right

>> from the

>> beginning (no obvious regression at any point due to some type of

>> infection). We've only done the dietary (mainly SCD, but with little to

>> no

>> nuts) and supplement portion of the DAN protocol, and he is doing

>> excellent

>> (no behavioral problems and in regular class without support and

>> friends!).

>> However, he has a tic and persistant perservations (maybe OCD) that I

>> believe are immune related (like PANDAS or PITANDS). He's seeing an

>> internationally recognized pediatric neurologist at Cincinnati

>> Children's

>> hospital who should be able to determine if he has PANDAS or TS or

>> something

>> else, so I am not switching anything until that appointment in June. I'm

>> also waiting for the website to be updated enough so that I can

>> have my

>> pediatrician review the information and maybe get " on board " with Dr.

>> G's

>> protocol or give me a referral.

>>

>> I've been following this listserv for a short time. I have a few

>> questions

>> to the veterans:

>> 1. Are any of your children drug free and recovered? How long, on

>> average,

>> do these children have to be on these types of meds? One thing that

>> appeals

>> to me with NID protocol is finally getting my son off supplements in

>> future.

>> 2. I'm really curious about the probiotics. I really like them but it

>> looks

>> like they are not recommended on Dr. G's protocol. I think my son has

>> greatly benefited from these. He has used a super-potent probiotic

>> (VSL#3).

>> Since using this probiotic, he has no GI issues now, absorbs foods and

>> is

>> growing better (after years of failure to thrive), no yeast, lower

>> bacteria,

>> lower oxalates and great health. This winter, he was my only child (of

>> 4)

>> who did not get the rotavirus--and my other children had 3 rounds of

>> vomiting!! He shares a bedroom with them and even a water bottle with

>> one of

>> them and still did not get these viruses. It was amazing. He almost

>> never

>> gets sick. Therefore, I'm really hesistant to ever stop using a

>> probiotic.

>> 3. Do any of you know when the site will be fully updated? It has

>> a lot

>> of broken links and old forms. Another thing that I noticed is that the

>>

>> advisory board list was removed. I think that I could possibly convince

>> my

>> pediatrician to run some of these tests or get a referral to Dr. G, but

>> having an updated site would be of great benefit. Just wondering.

>> 4. Do any of you know what Dr. G thinks about IVIG? I know this is

>> pretty

>> controversial and not recommended unless a child has PANDAS without

>> benefit

>> from other meds.

>>

>> Thanks for your advice in advance!

>> Esther

>>

Posted March 30, 2011 · March 30, 2011

Like most ASD kids with PANDAS my son has strep on his stool test. Hehas bot

alpha and gamm haemolytic step. We do not use probiotics with strep.

> >>

> >> Dr. G recommends Kyodophilus for a probiotic and I believe he

> >> recommends one

> >> for most, if not all, of his patients.

> >>

> >> The all-new website is in development. I got a sneak peak this

> >> morning,

> >> but I'm not sure if it's all live just yet. It should be in the next

> >> week.

> >>

> >> Kristy Nardini

> >>

> >> Tazzini Stainless Steel Bottles

> >>

> >> www.tazzini.com

> >>

> >> kristy@

> >>

> >> 858.243.1929

> >>

> >> <http://www.facebook.com/tazzinicompany> Find us on Facebook!

> >>

> >> <http://www.twitter.com/tazzini> Follow us on Twitter!

> >>

> >> From: [mailto: ] On Behalf Of

> >> ebrooksasplund

> >> Sent: Tuesday, March 29, 2011 6:31 AM

> >>

> >> Subject: new member--tics and probiotics and practitioners

> >>

> >> Hello,

> >>

> >> My name is Esther and I have a young boy (nearly 9 years) on the autism

> >> spectrum. We are in Indiana. After reading Dr. G's book, I have been

> >> thinking of switching him to the protocol in the future. My only

> >> hesitation is that he definitely showed signs of distress/ASD right

> >> from the

> >> beginning (no obvious regression at any point due to some type of

> >> infection). We've only done the dietary (mainly SCD, but with little to

> >> no

> >> nuts) and supplement portion of the DAN protocol, and he is doing

> >> excellent

> >> (no behavioral problems and in regular class without support and

> >> friends!).

> >> However, he has a tic and persistant perservations (maybe OCD) that I

> >> believe are immune related (like PANDAS or PITANDS). He's seeing an

> >> internationally recognized pediatric neurologist at Cincinnati

> >> Children's

> >> hospital who should be able to determine if he has PANDAS or TS or

> >> something

> >> else, so I am not switching anything until that appointment in June. I'm

> >> also waiting for the website to be updated enough so that I can

> >> have my

> >> pediatrician review the information and maybe get " on board " with Dr.

> >> G's

> >> protocol or give me a referral.

> >>

> >> I've been following this listserv for a short time. I have a few

> >> questions

> >> to the veterans:

> >> 1. Are any of your children drug free and recovered? How long, on

> >> average,

> >> do these children have to be on these types of meds? One thing that

> >> appeals

> >> to me with NID protocol is finally getting my son off supplements in

> >> future.

> >> 2. I'm really curious about the probiotics. I really like them but it

> >> looks

> >> like they are not recommended on Dr. G's protocol. I think my son has

> >> greatly benefited from these. He has used a super-potent probiotic

> >> (VSL#3).

> >> Since using this probiotic, he has no GI issues now, absorbs foods and

> >> is

> >> growing better (after years of failure to thrive), no yeast, lower

> >> bacteria,

> >> lower oxalates and great health. This winter, he was my only child (of

> >> 4)

> >> who did not get the rotavirus--and my other children had 3 rounds of

> >> vomiting!! He shares a bedroom with them and even a water bottle with

> >> one of

> >> them and still did not get these viruses. It was amazing. He almost

> >> never

> >> gets sick. Therefore, I'm really hesistant to ever stop using a

> >> probiotic.

> >> 3. Do any of you know when the site will be fully updated? It has

> >> a lot

> >> of broken links and old forms. Another thing that I noticed is that the

> >>

> >> advisory board list was removed. I think that I could possibly convince

> >> my

> >> pediatrician to run some of these tests or get a referral to Dr. G, but

> >> having an updated site would be of great benefit. Just wondering.

> >> 4. Do any of you know what Dr. G thinks about IVIG? I know this is

> >> pretty

> >> controversial and not recommended unless a child has PANDAS without

> >> benefit

> >> from other meds.

> >>

> >> Thanks for your advice in advance!

> >> Esther

> >>

Posted March 30, 2011 · March 30, 2011

Thanks Kersten and Kristy for your comments.

I've wondered about the strep strain and definitely haven't ruled this out.

I've also thought that his tic is related to an overactive innate immune system.

Since starting the probiotis, my child is never sick! His tics have worsened in

response to several innate immune system stimulators--high-dose probiotics

(definitely the SCD yogurt and VSL#3 with its 225 billion CFUs per capsule!),

Enhansa (concentrated curcumin that purportedly " wakes up the immune system " )

and exposure to viruses. In a recent publication entitled " Immunopathogenic

Mechanisms in Tourette Syndrome " , the authors indicate that recent data show

that there is a subset of TS patients whose overactive innate/cell-mediated

immune system cause tics/OCD. Fortunately, my son is going to see one of the

MDs who authored this paper because I am convinced his problem is immunological.

This is why I'm so intrigued by the approach.

> >

> > Dr. G recommends Kyodophilus for a probiotic and I believe he recommends one

> > for most, if not all, of his patients.

> >

> > The all-new website is in development. I got a sneak peak this morning,

> > but I'm not sure if it's all live just yet. It should be in the next week.

> >

> > Kristy Nardini

> >

> > Tazzini Stainless Steel Bottles

> >

> > www.tazzini.com

> >

> > kristy@

> >

> > 858.243.1929

> >

> > <http://www.facebook.com/tazzinicompany> Find us on Facebook!

> >

> > <http://www.twitter.com/tazzini> Follow us on Twitter!

> >

> > From: [mailto: ] On Behalf Of

> > ebrooksasplund

> > Sent: Tuesday, March 29, 2011 6:31 AM

> >

> > Subject: new member--tics and probiotics and practitioners

> >

> > Hello,

> >

> > My name is Esther and I have a young boy (nearly 9 years) on the autism

> > spectrum. We are in Indiana. After reading Dr. G's book, I have been

> > thinking of switching him to the protocol in the future. My only

> > hesitation is that he definitely showed signs of distress/ASD right from the

> > beginning (no obvious regression at any point due to some type of

> > infection). We've only done the dietary (mainly SCD, but with little to no

> > nuts) and supplement portion of the DAN protocol, and he is doing excellent

> > (no behavioral problems and in regular class without support and friends!).

> > However, he has a tic and persistant perservations (maybe OCD) that I

> > believe are immune related (like PANDAS or PITANDS). He's seeing an

> > internationally recognized pediatric neurologist at Cincinnati Children's

> > hospital who should be able to determine if he has PANDAS or TS or something

> > else, so I am not switching anything until that appointment in June. I'm

> > also waiting for the website to be updated enough so that I can have my

> > pediatrician review the information and maybe get " on board " with Dr. G's

> > protocol or give me a referral.

> >

> > I've been following this listserv for a short time. I have a few questions

> > to the veterans:

> > 1. Are any of your children drug free and recovered? How long, on average,

> > do these children have to be on these types of meds? One thing that appeals

> > to me with NID protocol is finally getting my son off supplements in future.

> > 2. I'm really curious about the probiotics. I really like them but it looks

> > like they are not recommended on Dr. G's protocol. I think my son has

> > greatly benefited from these. He has used a super-potent probiotic (VSL#3).

> > Since using this probiotic, he has no GI issues now, absorbs foods and is

> > growing better (after years of failure to thrive), no yeast, lower bacteria,

> > lower oxalates and great health. This winter, he was my only child (of 4)

> > who did not get the rotavirus--and my other children had 3 rounds of

> > vomiting!! He shares a bedroom with them and even a water bottle with one of

> > them and still did not get these viruses. It was amazing. He almost never

> > gets sick. Therefore, I'm really hesistant to ever stop using a probiotic.

> > 3. Do any of you know when the site will be fully updated? It has a lot

> > of broken links and old forms. Another thing that I noticed is that the

> > advisory board list was removed. I think that I could possibly convince my

> > pediatrician to run some of these tests or get a referral to Dr. G, but

> > having an updated site would be of great benefit. Just wondering.

> > 4. Do any of you know what Dr. G thinks about IVIG? I know this is pretty

> > controversial and not recommended unless a child has PANDAS without benefit

> > from other meds.

> >

> > Thanks for your advice in advance!

> > Esther

> >

Posted March 31, 2011 · March 31, 2011

Our son never got pick either but to me that was not because he was

healthy it was because his body did not recognise and fight of there

infections and viruses since starting ldn he now gets sick when

siblings do and is able to fight them of naturally. Just a thought

On 3/29/11, ebrooksasplund <esther.asplund@...> wrote: