Re: Austim according Stop Calling It Autism! (SCIA)

December 31, 2010

I never said that what was doing didn't work, but I also think that our

kids are more complex than this and what is doing is not only dangerous but

presumptive! is not a doctor and only has experience with his child. What

works for one child will most definitely not work for all. We need

immunologists and infectious disease doctors taking on kids with autism. But

for now we are blessed to have doctors like Dr. and Dr. Goldberg who

understand autism as a neuroimmune disease.

Another thing, I would love to know the names of the " researchers around the

globe " who are working on this with him.

All that aside, how do we know that its the motrin that was what recovered his

son? His son is also on a number of other medications that are effective in

treating neuroinflammation.

I have a daughter who is recovered from autism thanks to Dr. and Kathy

at the NNY Autism Center. But I know for a fact that what we did for our

daughter does not work for every child. Our biggest obstacle was dealing with

chemical sensitivities and inflammation to foods/pollens and more. Valtrex and

Famvir were also a huge help for her! She did absolutely horrible on the

Lexapro so we had to forego SSRI therapy but we are still doing great! I am so

grateful I had people helping us who knew what to do when things got unbearable

around here. They had experience.

We still don't even know all of our children's inflammatory trigger sources, I

believe that retroviruses (namely XMRV) are going to be an important piece in

treating children with autism, along with immunemodulating drugs. Motrin is not

going to be enough for our very sick children.

As rude as this sounds, Mr. seems like another Stan Kurtz to me. A

non-doctor giving advice to desperate parents. Our kids need real help, and

this is not the way to go.

-Jen

> > >

> > > ,

> > > How did you know about Glial activation? Are there biomarkers for it?

> > >

> > > Thanks,

> > > Kay

> > >

> > > ________________________________

> > > From: <jrodrig6605@>

> > >

> > > Sent: Tue, December 28, 2010 9:20:21 PM

> > > Subject: Austim according Stop Calling It Autism! (SCIA)

> > >

> > > Hello all,

> > > Below is a link to a new page just created at the Stop Calling It Autism!

> > > website. It describes the science SCIA believes in and helps explain most

of

> >

> > > the medical, cognitive and behavioral problems that children with autism

> >suffer

> >

> > > from. This is the same science that helped my son improve from a

> > > severely autistic child to a child that is doing as well as any child that

> >never

> >

> > > suffered from autism. is doing so well that we were able to take

him

> >off

> >

> > > many of the medications he was taking including Tenex, Paxil and Diflucan.

> >How

> >

> > > did we do that? By inhibiting microglial activation as suggested as a

> >possible

> >

> > > treatment for mental illnesses by the Nobel Prize-winning University of

Utah

>

> > > geneticist Capecchi in his recent study.

> > >

> > > Nobel winner ties mental illness to immune defect

> > > http://tinyurl.com/373k5mr

> > >

> > > It doesn't matter if you treat the infections that activated the

microglial

> > > cells in the first place; the microglial cells will remain active for

years

> > > after the infections have been treated. That is the reason of why many

> >children

> >

> > > that are being treated for infections don't improve like doctors and the

> >parents

> >

> > > expect.

> > >

> > > Many people ask me how I was able to inhibit my son 's microglial

> > > activation. I did it by using Non-Steroidal Anti-Inflammatory Drugs.

Many

>

> > > research studies have proposed the use of NSAIDs as a possible treatment

to

> > > target the microglia. The problem is that currently, there are no doctors

> >that

> >

> > > will risk prescribing the dose that needs to be given for it to be able to

> > > inhibit the microglial activation. That is why I decided to form Stop

> >Calling

> >

> > > It Autism! If we can provide large amounts of evidence that children with

> > > autism suffer from immune system dysfunction and microglial activation

maybe

> >we

> >

> > > could expedite the development of medications that can target the

microglia

> >and

> >

> > > be safe at the same time.

> > >

> > > Non-Steroidal Anti-Inflammatory Drugs and Brain Inflammation: Effects on

> > > Microglial Functions

> > > http://www.mdpi.com/1424-8247/3/6/1949/pdf

> > >

> > > SCIA is working very hard and it is in the final medical approval stage

for a

> >

> > > nationwide medical disease registry that will provide evidence that

children

>

> > > with autism suffer from immune system dysfunction and microglial

activation.

>

> > >

> > > Autism according to SCIA

> > > http://www.stopcallingitautism.org/autism.html

> > >

> > > Regards,

> > >

> > > Stop Calling It Autism!

> > > http://www.stopcallingitautism.org

> > >

December 31, 2010

I am always interested in what treatment works for families. Thanks for

sharing, .

Caryn

> > >

> > > ,

> > > How did you know about Glial activation? Are there biomarkers for it?

> > >

> > > Thanks,

> > > Kay

> > >

> > > ________________________________

> > > From: <jrodrig6605@>

> > >

> > > Sent: Tue, December 28, 2010 9:20:21 PM

> > > Subject: Austim according Stop Calling It Autism! (SCIA)

> > >

> > > Hello all,

> > > Below is a link to a new page just created at the Stop Calling It Autism!

> > > website. It describes the science SCIA believes in and helps explain most

of

>

> > > the medical, cognitive and behavioral problems that children with autism

> >suffer

> >

> > > from. This is the same science that helped my son improve from a

> > > severely autistic child to a child that is doing as well as any child that

> >never

> >

> > > suffered from autism. is doing so well that we were able to take

him

> >off

> >

> > > many of the medications he was taking including Tenex, Paxil and Diflucan.

> >How

> >

> > > did we do that? By inhibiting microglial activation as suggested as a

> >possible

> >

> > > treatment for mental illnesses by the Nobel Prize-winning University of

Utah

>

> > > geneticist Capecchi in his recent study.

> > >

> > > Nobel winner ties mental illness to immune defect

> > > http://tinyurl.com/373k5mr

> > >

> > > It doesn't matter if you treat the infections that activated the

microglial

> > > cells in the first place; the microglial cells will remain active for

years

> > > after the infections have been treated. That is the reason of why many

> >children

> >

> > > that are being treated for infections don't improve like doctors and the

> >parents

> >

> > > expect.

> > >

> > > Many people ask me how I was able to inhibit my son 's microglial

> > > activation. I did it by using Non-Steroidal Anti-Inflammatory Drugs. Many

> > > research studies have proposed the use of NSAIDs as a possible treatment

to

> > > target the microglia. The problem is that currently, there are no doctors

> >that

> >

> > > will risk prescribing the dose that needs to be given for it to be able to

> > > inhibit the microglial activation. That is why I decided to form Stop

Calling

> >

> > > It Autism! If we can provide large amounts of evidence that children with

> > > autism suffer from immune system dysfunction and microglial activation

maybe

> >we

> >

> > > could expedite the development of medications that can target the

microglia

> >and

> >

> > > be safe at the same time.

> > >

> > > Non-Steroidal Anti-Inflammatory Drugs and Brain Inflammation: Effects on

> > > Microglial Functions

> > > http://www.mdpi.com/1424-8247/3/6/1949/pdf

> > >

> > > SCIA is working very hard and it is in the final medical approval stage

for a

> >

> > > nationwide medical disease registry that will provide evidence that

children

>

> > > with autism suffer from immune system dysfunction and microglial

activation.

>

> > >

> > > Autism according to SCIA

> > > http://www.stopcallingitautism.org/autism.html

> > >

> > > Regards,

> > >

> > > Stop Calling It Autism!

> > > http://www.stopcallingitautism.org

> > >

December 31, 2010

Thank you,

We need this info NOW.

From: Caryn_Reid <caryn_reid@...>

Subject: Re: Austim according Stop Calling It Autism! (SCIA)

Date: Friday, December 31, 2010, 12:54 PM

Â

I am always interested in what treatment works for families. Thanks for sharing,

.

Caryn

> > >

> > > ,

> > > How did you know about Glial activation? Are there biomarkers for it?

> > >

> > > Thanks,

> > > Kay

> > >

> > > ________________________________

> > > From: <jrodrig6605@>

> > >

> > > Sent: Tue, December 28, 2010 9:20:21 PM

> > > Subject: Austim according Stop Calling It Autism! (SCIA)

> > >

> > > Hello all,

> > > Below is a link to a new page just created at the Stop Calling It Autism!

> > > website. It describes the science SCIA believes in and helps explain most

of

>

> > > the medical, cognitive and behavioral problems that children with autism

> >suffer

> >

> > > from. This is the same science that helped my son improve from a

> > > severely autistic child to a child that is doing as well as any child that

> >never

> >

> > > suffered from autism. is doing so well that we were able to take

him

> >off

> >

> > > many of the medications he was taking including Tenex, Paxil and Diflucan.

> >How

> >

> > > did we do that? By inhibiting microglial activation as suggested as a

> >possible

> >

> > > treatment for mental illnesses by the Nobel Prize-winning University of

Utah

>

> > > geneticist Capecchi in his recent study.

> > >

> > > Nobel winner ties mental illness to immune defect

> > > http://tinyurl.com/373k5mr

> > >

> > > It doesn't matter if you treat the infections that activated the

microglial

> > > cells in the first place; the microglial cells will remain active for

years

> > > after the infections have been treated. That is the reason of why many

> >children

> >

> > > that are being treated for infections don't improve like doctors and the

> >parents

> >

> > > expect.

> > >

> > > Many people ask me how I was able to inhibit my son 's microglial

> > > activation. I did it by using Non-Steroidal Anti-Inflammatory Drugs. Many

> > > research studies have proposed the use of NSAIDs as a possible treatment

to

> > > target the microglia. The problem is that currently, there are no doctors

> >that

> >

> > > will risk prescribing the dose that needs to be given for it to be able to

> > > inhibit the microglial activation. That is why I decided to form Stop

Calling

> >

> > > It Autism! If we can provide large amounts of evidence that children with

> > > autism suffer from immune system dysfunction and microglial activation

maybe

> >we

> >

> > > could expedite the development of medications that can target the

microglia

> >and

> >

> > > be safe at the same time.

> > >

> > > Non-Steroidal Anti-Inflammatory Drugs and Brain Inflammation: Effects on

> > > Microglial Functions

> > > http://www.mdpi.com/1424-8247/3/6/1949/pdf

> > >

> > > SCIA is working very hard and it is in the final medical approval stage

for a

> >

> > > nationwide medical disease registry that will provide evidence that

children

>

> > > with autism suffer from immune system dysfunction and microglial

activation.

>

> > >

> > > Autism according to SCIA

> > > http://www.stopcallingitautism.org/autism.html

> > >

> > > Regards,

> > >

> > > Stop Calling It Autism!

> > > http://www.stopcallingitautism.org

> > >

December 31, 2010

Oh how easy it is to sit back and judge someone, especially a parent that has

been successful on recovering their child--when we have not---maybe that is why

people have problems with Dana from danasview and Stan Kurtz---thank you for

making it clear.Â Have a Happy New Year.

Â

From: Caryn_Reid <caryn_reid@...>

Subject: Re: Austim according Stop Calling It Autism! (SCIA)

Date: Friday, December 31, 2010, 12:54 PM

Â

I am always interested in what treatment works for families. Thanks for sharing,

.

Caryn

> > >

> > > ,

> > > How did you know about Glial activation? Are there biomarkers for it?

> > >

> > > Thanks,

> > > Kay

> > >

> > > ________________________________

> > > From: <jrodrig6605@>

> > >

> > > Sent: Tue, December 28, 2010 9:20:21 PM

> > > Subject: Austim according Stop Calling It Autism! (SCIA)

> > >

> > > Hello all,

> > > Below is a link to a new page just created at the Stop Calling It Autism!

> > > website. It describes the science SCIA believes in and helps explain most

of

>

> > > the medical, cognitive and behavioral problems that children with autism

> >suffer

> >

> > > from. This is the same science that helped my son improve from a

> > > severely autistic child to a child that is doing as well as any child that

> >never

> >

> > > suffered from autism. is doing so well that we were able to take

him

> >off

> >

> > > many of the medications he was taking including Tenex, Paxil and Diflucan.

> >How

> >

> > > did we do that? By inhibiting microglial activation as suggested as a

> >possible

> >

> > > treatment for mental illnesses by the Nobel Prize-winning University of

Utah

>

> > > geneticist Capecchi in his recent study.

> > >

> > > Nobel winner ties mental illness to immune defect

> > > http://tinyurl.com/373k5mr

> > >

> > > It doesn't matter if you treat the infections that activated the

microglial

> > > cells in the first place; the microglial cells will remain active for

years

> > > after the infections have been treated. That is the reason of why many

> >children

> >

> > > that are being treated for infections don't improve like doctors and the

> >parents

> >

> > > expect.

> > >

> > > Many people ask me how I was able to inhibit my son 's microglial

> > > activation. I did it by using Non-Steroidal Anti-Inflammatory Drugs. Many

> > > research studies have proposed the use of NSAIDs as a possible treatment

to

> > > target the microglia. The problem is that currently, there are no doctors

> >that

> >

> > > will risk prescribing the dose that needs to be given for it to be able to

> > > inhibit the microglial activation. That is why I decided to form Stop

Calling

> >

> > > It Autism! If we can provide large amounts of evidence that children with

> > > autism suffer from immune system dysfunction and microglial activation

maybe

> >we

> >

> > > could expedite the development of medications that can target the

microglia

> >and

> >

> > > be safe at the same time.

> > >

> > > Non-Steroidal Anti-Inflammatory Drugs and Brain Inflammation: Effects on

> > > Microglial Functions

> > > http://www.mdpi.com/1424-8247/3/6/1949/pdf

> > >

> > > SCIA is working very hard and it is in the final medical approval stage

for a

> >

> > > nationwide medical disease registry that will provide evidence that

children

>

> > > with autism suffer from immune system dysfunction and microglial

activation.

>

> > >

> > > Autism according to SCIA

> > > http://www.stopcallingitautism.org/autism.html

> > >

> > > Regards,

> > >

> > > Stop Calling It Autism!

> > > http://www.stopcallingitautism.org

> > >

January 1, 2011

I understand the desperation of parents, I was there too! I am not your enemy,

in fact I really care about children that is why I took a chance and spoke out

against this.

There are definite inherent dangers here and is playing doctor and giving

false impressions. It seems like he is selling something, his ideas, why do

people not see this? He puts down people who have been treating and recovering

children for years on this list and everyone defends him?

I am entitled to my opinion, and hopefully I helped someone think twice before

trying something like this. We live in a free world and I would speak out

against this again! How many desperate parents are going to go home and give

their kids an OTC medicine now, at a high dose nonetheless!

people need GOOD and CARING DOCTORS who know what they are doing. There

are changes coming for the autism community within this next year and they will

be huge. Motrin is not going to be enough for many children, they will need

something totally different and stronger. Our children are very sick and need

help immediately, not dangerous suggestions. I wish healing for all of our

children, and I believe more answers are on the horizon. THIS YEAR things are

going to change. I know this.

Take care,

Jen

> > > >

> > > > ,

> > > > How did you know about Glial activation? Are there biomarkers for it?

> > > >

> > > > Thanks,

> > > > Kay

> > > >

> > > > ________________________________

> > > > From: <jrodrig6605@>

> > > >

> > > > Sent: Tue, December 28, 2010 9:20:21 PM

> > > > Subject: Austim according Stop Calling It Autism! (SCIA)

> > > >

> > > > Hello all,

> > > > Below is a link to a new page just created at the Stop Calling It

Autism!

> > > > website. It describes the science SCIA believes in and helps explain

most of

> >

> > > > the medical, cognitive and behavioral problems that children with autism

> > >suffer

> > >

> > > > from. This is the same science that helped my son improve from a

> > > > severely autistic child to a child that is doing as well as any child

that

> > >never

> > >

> > > > suffered from autism. is doing so well that we were able to take

him

> > >off

> > >

> > > > many of the medications he was taking including Tenex, Paxil and

Diflucan.

> > >How

> > >

> > > > did we do that? By inhibiting microglial activation as suggested as a

> > >possible

> > >

> > > > treatment for mental illnesses by the Nobel Prize-winning University of

Utah

> >

> > > > geneticist Capecchi in his recent study.

> > > >

> > > > Nobel winner ties mental illness to immune defect

> > > > http://tinyurl.com/373k5mr

> > > >

> > > > It doesn't matter if you treat the infections that activated the

microglial

> > > > cells in the first place; the microglial cells will remain active for

years

> > > > after the infections have been treated. That is the reason of why many

> > >children

> > >

> > > > that are being treated for infections don't improve like doctors and the

> > >parents

> > >

> > > > expect.

> > > >

> > > > Many people ask me how I was able to inhibit my son 's microglial

> > > > activation. I did it by using Non-Steroidal Anti-Inflammatory Drugs.

Many

> > > > research studies have proposed the use of NSAIDs as a possible treatment

to

> > > > target the microglia. The problem is that currently, there are no

doctors

> > >that

> > >

> > > > will risk prescribing the dose that needs to be given for it to be able

to

> > > > inhibit the microglial activation. That is why I decided to form Stop

Calling

> > >

> > > > It Autism! If we can provide large amounts of evidence that children

with

> > > > autism suffer from immune system dysfunction and microglial activation

maybe

> > >we

> > >

> > > > could expedite the development of medications that can target the

microglia

> > >and

> > >

> > > > be safe at the same time.

> > > >

> > > > Non-Steroidal Anti-Inflammatory Drugs and Brain Inflammation: Effects on

> > > > Microglial Functions

> > > > http://www.mdpi.com/1424-8247/3/6/1949/pdf

> > > >

> > > > SCIA is working very hard and it is in the final medical approval stage

for a

> > >

> > > > nationwide medical disease registry that will provide evidence that

children

> >

> > > > with autism suffer from immune system dysfunction and microglial

activation.

> >

> > > >

> > > > Autism according to SCIA

> > > > http://www.stopcallingitautism.org/autism.html

> > > >

> > > > Regards,

> > > >

> > > > Stop Calling It Autism!

> > > > http://www.stopcallingitautism.org

> > > >

January 3, 2011

IHMO-while I do agree that there is inflammation going on in my son's extremely

complex brain, some of it should be going on but not necessarily the amount that

is. These cells do not only activate in autistic children, they have a purpose

throughout the cellular life of a human and playing around with them without

proper efficacy is asking for more problems, not necessarily less. There are

too many variables and the NSAID's is promoting is treating a symptom, not

the problem because we don't know what the problem is as we are just learning

the role of these cells.

More research is needed definitely, but that research can also be hindered by

inappropriate medications that will skew the data rendering all the time,

effort, and money useless. One of the biggest problems is that people don't

think of Motrin, etc as medicine...you can buy it at any convenience store for

goodness sake. So what happens when your child goes in for tests or you sign

them up for a research data-base and don't disclose ALL the vital

elements...that research is useless. It not only dashes the hope others, it

destroys the confidence that was given to the organization doing the research.

Honestly, I wish something as simple as an NSAID would fix our problems....it

would serve the drug companies and insurance companies well the way they gouge

but the cynic in me says they'd only manage to make it a prescription med again

if it did. In our case, we can't take NSAIDs anyway but an alternative we have

found to be extremely useful until they do find a cure is Cranio-Sacral Therapy.

This reduces the inflammation, the cranial pressure, helps the plates move more

smoothly, and relaxes him in a way no medication ever has without any side

effects. The effects usually last for 3-4 weeks and I don't know about any one

else, but our insurance covers it.

Best,

Robin

From 's own post from Hopkins...

" If there is neuroinflammation in the brain of some autistic patients, is

treatment with anti-inflammatory or immunomodulatory medications indicated?

At present, THERE IS NO indication for using anti-inflammatory medications in

patients with autism. Immunomodulatory or anti-inflammatory medications such as

steroids (e.g. prednisone or methylprednisolone), immunosupressants (e.g.

Azathioprine, methotrexate, cyclophosphamide) or modulators of immune reactions

(e.g. intravenous immunoglobulins, IVIG) WOULD NOT HAVE a significant effect on

neuroglial activation because these drugs work mostly on adaptive immunity by

reducing the production of immunoglobulins, decreasing the production of T cells

and limiting the infiltration of inflammatory cells into areas of tissue injury.

Our study demonstrated NO EVIDENCE at all for these types of immune reactions.

There are ongoing experimental studies to examine the effect of drugs that limit

the activation of microglia and astrocytes, but their use in humans must await

further evidence of their efficacy and safety. "

http://www.neuro.jhmi.edu/neuroimmunopath/autism_faqs.htm

> > > >

> > > > ,

> > > > How did you know about Glial activation? Are there biomarkers for it?

> > > >

> > > > Thanks,

> > > > Kay

> > > >

> > > > ________________________________

> > > > From: <jrodrig6605@>

> > > >

> > > > Sent: Tue, December 28, 2010 9:20:21 PM

> > > > Subject: Austim according Stop Calling It Autism! (SCIA)

> > > >

> > > > Hello all,

> > > > Below is a link to a new page just created at the Stop Calling It

Autism!

> > > > website. It describes the science SCIA believes in and helps explain

most of

> >

> > > > the medical, cognitive and behavioral problems that children with autism

> > >suffer

> > >

> > > > from. This is the same science that helped my son improve from a

> > > > severely autistic child to a child that is doing as well as any child

that

> > >never

> > >

> > > > suffered from autism. is doing so well that we were able to take

him

> > >off

> > >

> > > > many of the medications he was taking including Tenex, Paxil and

Diflucan.

> > >How

> > >

> > > > did we do that? By inhibiting microglial activation as suggested as a

> > >possible

> > >

> > > > treatment for mental illnesses by the Nobel Prize-winning University of

Utah

> >

> > > > geneticist Capecchi in his recent study.

> > > >

> > > > Nobel winner ties mental illness to immune defect

> > > > http://tinyurl.com/373k5mr

> > > >

> > > > It doesn't matter if you treat the infections that activated the

microglial

> > > > cells in the first place; the microglial cells will remain active for

years

> > > > after the infections have been treated. That is the reason of why many

> > >children

> > >

> > > > that are being treated for infections don't improve like doctors and the

> > >parents

> > >

> > > > expect.

> > > >

> > > > Many people ask me how I was able to inhibit my son 's microglial

> > > > activation. I did it by using Non-Steroidal Anti-Inflammatory Drugs.

Many

> > > > research studies have proposed the use of NSAIDs as a possible treatment

to

> > > > target the microglia. The problem is that currently, there are no

doctors

> > >that

> > >

> > > > will risk prescribing the dose that needs to be given for it to be able

to

> > > > inhibit the microglial activation. That is why I decided to form Stop

Calling

> > >

> > > > It Autism! If we can provide large amounts of evidence that children

with

> > > > autism suffer from immune system dysfunction and microglial activation

maybe

> > >we

> > >

> > > > could expedite the development of medications that can target the

microglia

> > >and

> > >

> > > > be safe at the same time.

> > > >

> > > > Non-Steroidal Anti-Inflammatory Drugs and Brain Inflammation: Effects on

> > > > Microglial Functions

> > > > http://www.mdpi.com/1424-8247/3/6/1949/pdf

> > > >

> > > > SCIA is working very hard and it is in the final medical approval stage

for a

> > >

> > > > nationwide medical disease registry that will provide evidence that

children

> >

> > > > with autism suffer from immune system dysfunction and microglial

activation.

> >

> > > >

> > > > Autism according to SCIA

> > > > http://www.stopcallingitautism.org/autism.html

> > > >

> > > > Regards,

> > > >

> > > > Stop Calling It Autism!

> > > > http://www.stopcallingitautism.org

> > > >

January 3, 2011

Thanks for putting Cranial Sacral therapy back on my radar. We haven't done it

for my son since he was a baby. It helped him every time. Anything that can

safely reduce brain inflammation until we get the underlying cause treated, I'm

all for. Sometimes I have so many balls in the air at once, I drop one and don't

even notice!

Sheryl

Sent from my iPhone

On Jan 3, 2011, at 2:50 AM, " RobinW " <thelancienfamily@...> wrote:

IHMO-while I do agree that there is inflammation going on in my son's extremely

complex brain, some of it should be going on but not necessarily the amount that

is. These cells do not only activate in autistic children, they have a purpose

throughout the cellular life of a human and playing around with them without

proper efficacy is asking for more problems, not necessarily less. There are too

many variables and the NSAID's is promoting is treating a symptom, not the

problem because we don't know what the problem is as we are just learning the

role of these cells.