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Re: PANDAS

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I am really intrigued by PANDAS as it fits my son, EXCEPT for the fact that he

rarely gets sick. Could it still be PANDAS?

I think the idea of PANDAS shows that researchers are at least looking outside

the box for commonalities and at least giving us parents some kind of hope. They

don't obviously have all the answers, but at least it gives another avenue to

pursue and it does fit in with the viral/bacterial underlying infection aspect

of autism. Just my 2 cents that I don't agree that it's a crock. :) I think open

discussion is healthy.

Nanci

> >

> > I suspect my son has Pandas, on the website it said there was no official

> test for Pandas. what supplements can I give him to try to see if I can get

> rid of some of the OCD behaviors?

> >

>

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Frequent illness is not a requirement for PANDAS. My son had a

history of Strep Throat. However, there have been diagnosed cases of PANDAS

where there was a never a diagnosed case of Strep. Dr. Bock discusses one such

case in his book. Dr. Swedo from NIH discussed PANDAS at the recent DAN!

Conference in Atlanta. You can watch for free here. www.autism.com/danwebcast

Pamela

From:

mb12 valtrex [mailto:mb12 valtrex ] On Behalf

Of smiths4him

Sent: Friday, July 10, 2009 5:25 PM

To: mb12 valtrex

Subject: Re: Pandas

I am really intrigued by PANDAS as it fits my

son, EXCEPT for the fact that he rarely gets sick. Could it still be PANDAS?

I think the idea of PANDAS shows that researchers are at least looking outside

the box for commonalities and at least giving us parents some kind of hope.

They don't obviously have all the answers, but at least it gives another avenue

to pursue and it does fit in with the viral/bacterial underlying infection

aspect of autism. Just my 2 cents that I don't agree that it's a crock. :) I

think open discussion is healthy.

Nanci

> >

> > I suspect my son has Pandas, on the website it said there was no

official

> test for Pandas. what supplements can I give him to try to see if I can

get

> rid of some of the OCD behaviors?

> >

>

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Thank you!

My son has never had strep.

Nanci

> > >

> > > I suspect my son has Pandas, on the website it said there was no

> official

> > test for Pandas. what supplements can I give him to try to see if I can

> get

> > rid of some of the OCD behaviors?

> > >

> >

>

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Guest guest

Thank you!

My son has never had strep.

Nanci

> > >

> > > I suspect my son has Pandas, on the website it said there was no

> official

> > test for Pandas. what supplements can I give him to try to see if I can

> get

> > rid of some of the OCD behaviors?

> > >

> >

>

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Guest guest

My son rarely gets sick. In fact his only major illness in the last 4-5 years has been the bout of strep that lead to his PANDAS.

Kerrie

I am really intrigued by PANDAS as it fits my son, EXCEPT for the fact that he rarely gets sick. Could it still be PANDAS

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My son never had strep but he is a PANDAS kid.

nne

> > > >

> > > > I suspect my son has Pandas, on the website it said there was no

> > official

> > > test for Pandas. what supplements can I give him to try to see if I can

> > get

> > > rid of some of the OCD behaviors?

> > > >

> > >

> >

>

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It is the immune system that's out of whack in PANDAs-- my kid had anti-strep titers thru the roof-- no wonder she never developed it. But her system is overacting to a perceived threat-- that's what's wrong. I'm among those moms who is happy when she develops a fever, a rash... anything that tells me her immune system is acting as it should-LuzMy son never had strep but he is a PANDAS kid.nne> > > >> > > > I suspect my son has Pandas, on the website it said there was no> > official> > > test for Pandas. what supplements can I give him to try to see if I can> > get> > > rid of some of the OCD behaviors?> > > >> > >> >>

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My son is almost never sick. I've read that is a sign that the immune system is

out of whack - don't have a referece handy.

Oh, man, strep exposures lead to bad, bad, bad OCD in our house.

>

>

> My son rarely gets sick. In fact his only major illness in the last 4-5

> years has been the bout of strep that lead to his PANDAS.

>

> Kerrie

>

> In a message dated 7/10/2009 5:31:53 P.M. Eastern Daylight Time,

> pamelaleigh99@... writes:

>

> I am really intrigued by PANDAS as it fits my son, EXCEPT for the fact

> that he rarely gets sick. Could it still be PANDAS

>

>

>

> **************A Good Credit Score is 700 or Above. See yours in just 2 easy

> steps!

>

(http://pr.atwola.com/promoclk/100126575x1221323031x1201367232/aol?redir=http://\

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Guest guest

My son is non-asd PANDAS/PITAND and was also never sick for years prior to onset

of PANDAS after a virus. His immune system is finally behaving normally this

year, he occasionally catches something, processes it and heals without

backlash. His DAN! doc agrees this is a very good sign.

Gayle

> >

> >

> > My son rarely gets sick. In fact his only major illness in the last 4-5

> > years has been the bout of strep that lead to his PANDAS.

> >

> > Kerrie

> >

> > In a message dated 7/10/2009 5:31:53 P.M. Eastern Daylight Time,

> > pamelaleigh99@ writes:

> >

> > I am really intrigued by PANDAS as it fits my son, EXCEPT for the fact

> > that he rarely gets sick. Could it still be PANDAS

> >

> >

> >

> > **************A Good Credit Score is 700 or Above. See yours in just 2 easy

> > steps!

> >

(http://pr.atwola.com/promoclk/100126575x1221323031x1201367232/aol?redir=http://\

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  • 1 year later...

Suzanne, ref the link below. L

http://pandasnetwork.org/

From: csb-autism-rx [mailto:csb-autism-rx ]

On Behalf Of Suzanne

Sent: Thursday, October 21, 2010 8:29 PM

To: csb-autism-rx

Subject: PANDAS

Can anyone tell me what their opinion on the best treatment for PANDAS? We

have tried using Xylitol, Neem, OLE, and probiotics to stop the Strep

infections, but have not been successful.

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My best results have been with using bi-cillin injections one a week for 4-6

weeks, 60,000iu for kids under 60#, 1,200,000 for kids over 60#.  However, I

must say there is no consensus, so trial and error as usual is the name of the

game, and PANDAS is tough.  Dr. JM

Subject: PANDAS

To: csb-autism-rx

Date: Thursday, October 21, 2010, 12:28 PM

 

Can anyone tell me what their opinion on the best treatment for PANDAS? We have

tried using Xylitol, Neem, OLE, and probiotics to stop the Strep infections, but

have not been successful.

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Dr. McCandless,

Are you using the new Cunningham tests? What about IVIG and/or steroids? After

doing multiple rounds of the bicillin injections and zithromax, and having my

child's tonsils removed, I feel a bit defeated, since the symptoms keep

returning. Are my child's ongoing autism symptoms related to PANDAS?

Thanks,

>

>

>

> Subject: PANDAS

> To: csb-autism-rx

> Date: Thursday, October 21, 2010, 12:28 PM

>

>

>  

>

>

>

> Can anyone tell me what their opinion on the best treatment for PANDAS? We

have tried using Xylitol, Neem, OLE, and probiotics to stop the Strep

infections, but have not been successful.

>

>

>

>

>

>

>

>

>

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