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Hi group

Our second issue is OCD. It is so out of hand.

It has always been present through specific stims, but it has gone verbal big

time in the last months. It started when

he caught a virus at school along with most of the kids. They threw-up and had

high fevers/extremely sick for days. He only threw up and had not other issues.

Does HBOT help with this? Any suggestions? I have tried so many supplements. Is

there something I have missed ? His OCD is literally the worse part of his

autism at this moment.

I would appreciate any advice

Thanks,

Alice

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so when you guys are saying OCD you include verbal scripting of movies/tv/books/music etc as an example. I've reviewed the PANDAS info in the past and never thought it really applied to us, but like the initial email below, scripting for us is the number one characteristic my son has that significantly interferes with his ability to be "present" in the real world. We are trying homeopathy now and have tried non stimulant ADHD medication (which worked for 2-3 weeks then stopped). I'm at my wits end for trying to figure out how to get it to stop. It's like the flood gate is open in his brain in a certain area and the neurotransmitters are gushing through without anything to stop it and his brain is on hyper mode with all his movies and he just CANT turn them off. I've

mentioned PANDAS to his DAN but she never went anywhere with it or seemed to give my concern about it much thought. any thoughts from you guys?To: mb12 valtrex Sent: Tue, January 11, 2011 11:16:08 AMSubject: Re: OCD

OCD is generally caused by PANDAS which is the result of the body building antibodies to strep. You need to learn about the symptoms and treatments for PANDAS. www.pandasnetwork.org After each exposure to strep PANDAS gets worse and worse so it needs to be treated before it gets completely unbearable.

Subject: OCDTo: mb12 valtrex Date: Tuesday, January 11, 2011, 12:10 PM

Hi groupOur second issue is OCD. It is so out of hand. It has always been present through specific stims, but it has gone verbal big time in the last months. It started whenhe caught a virus at school along with most of the kids. They threw-up and had high fevers/extremely sick for days. He only threw up and had not other issues. Does HBOT help with this? Any suggestions? I have tried so many supplements. Is there something I have missed ? His OCD is literally the worse part of his autism at this moment. I would appreciate any advice Thanks,Alice

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Have you run a comprehensive stool analysis (CDSA) w/ your DAN? Does it show strep. Every PANDAS kid has a positive CDSA. You can also get your DAN to check his AASO/DNASE titers (keep in mind though that 50% of PANDAS kids do not have high titers). Maybe your DAN would be willing to do a course of azithromycin......see if the symptoms subside.

Subject: OCDTo: mb12 valtrex Date: Tuesday, January 11, 2011, 12:10 PM

Hi groupOur second issue is OCD. It is so out of hand. It has always been present through specific stims, but it has gone verbal big time in the last months. It started whenhe caught a virus at school along with most of the kids. They threw-up and had high fevers/extremely sick for days. He only threw up and had not other issues. Does HBOT help with this? Any suggestions? I have tried so many supplements. Is there something I have missed ? His OCD is literally the worse part of his autism at this moment. I would appreciate any advice Thanks,Alice

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Have you run a comprehensive stool analysis (CDSA) w/ your DAN? Does it show strep. Every PANDAS kid has a positive CDSA. You can also get your DAN to check his AASO/DNASE titers (keep in mind though that 50% of PANDAS kids do not have high titers). Maybe your DAN would be willing to do a course of azithromycin......see if the symptoms subside.

Subject: OCDTo: mb12 valtrex Date: Tuesday, January 11, 2011, 12:10 PM

Hi groupOur second issue is OCD. It is so out of hand. It has always been present through specific stims, but it has gone verbal big time in the last months. It started whenhe caught a virus at school along with most of the kids. They threw-up and had high fevers/extremely sick for days. He only threw up and had not other issues. Does HBOT help with this? Any suggestions? I have tried so many supplements. Is there something I have missed ? His OCD is literally the worse part of his autism at this moment. I would appreciate any advice Thanks,Alice

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Just got done with a consult this morning with our DAN for my son w PANDAS one

of my complaints today was scripting out of control, does not seem to be yeast

but that interferes, as you described w his ability to be present. His OCD has

gotten quite interfering in the last three weeks since he had a fever/virus.

His antibiotic (Zithromax) it seems is no longer up to the task so we're

switching to a new one today/tomorrow. The doctor thinks its bacterial related

not necessarily strep, could but it could be any type including Lyme, unresolved

food poisoning etc. Bacteria is thought to reside in clusters, exposed as we

treat yeast.

>

> so when you guys are saying OCD you include verbal scripting of

> movies/tv/books/music etc as an example. I've reviewed the PANDAS info in the

> past and never thought it really applied to us, but like the initial email

> below, scripting for us is the number one characteristic my son has that

> significantly in....

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Just got done with a consult this morning with our DAN for my son w PANDAS one

of my complaints today was scripting out of control, does not seem to be yeast

but that interferes, as you described w his ability to be present. His OCD has

gotten quite interfering in the last three weeks since he had a fever/virus.

His antibiotic (Zithromax) it seems is no longer up to the task so we're

switching to a new one today/tomorrow. The doctor thinks its bacterial related

not necessarily strep, could but it could be any type including Lyme, unresolved

food poisoning etc. Bacteria is thought to reside in clusters, exposed as we

treat yeast.

>

> so when you guys are saying OCD you include verbal scripting of

> movies/tv/books/music etc as an example. I've reviewed the PANDAS info in the

> past and never thought it really applied to us, but like the initial email

> below, scripting for us is the number one characteristic my son has that

> significantly in....

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OCD is not scripting, usually. OCD is the feeling that one must do

something a certain way or over and over and feels compelled to it

no matter what. If you Google, you will commonly see the example of

repeatedly handwashing. In the autism population, what I see is the

need to have things a certain way, like sameness, no changes, biting

nails, pulling/picking on themselves - their skin or hair, and fits

whenever there are changes or when they are not able to continue the

repetitive behavior. Hoarding follows under OCD, as well. Counting

constantly is also a sign, such as counting bricks, lights, or

whatever else is in your environment. Often, counting is done

silently so others don't know about it. OCD is accompanied with

anxiety, an impending doom of sorts if they don't follow their urge

to do a behavior or don't follow their same routine. So, it can be

tricky to figure out what is OCD and what isn't. I think the odd

speech is more a sign of their attempts to speak, but having to use

other parts of their brain to help out instead of the main speech

area. So, one might kind of sing their words in rhythm, or talk in

sentences from cartoons. They are probably using the creative parts

of their brain in conjunction with their under-working speech area

to get themselves to try to develop their speech. I have one that

did this, and he went from using sentences from the TV to sing-songy

speech to sounding monotone and serious and then to normal speech.

Turmeric, cod liver oil, digestive enzymes started the path for him

in developing normal speech. Many other anti-inflammatories

(natural and gentle), and anti-microbials, and things for toxins

were also used to keep him on his healing path. It's all about

rebuilding the immune system, which includes also digestive and

liver support.

Love and prayers,

Heidi N

so when you guys are saying OCD you include verbal scripting of

movies/tv/books/

music etc as an example. I've

reviewed the PANDAS info in the

past and never thought it really applied to us, but like the

initial email

below, scripting for us is the number one characteristic my son

has that

significantly interferes with his ability to be "present" in the

real world. We

are trying homeopathy now and have tried non stimulant ADHD

medication (which

worked for 2-3 weeks then stopped). I'm at my wits end for trying

to figure out

how to get it to stop. It's like the flood gate is open in his

brain in a

certain area and the neurotransmitters are gushing through without

anything to

stop it and his brain is on hyper mode with all his movies and he

just CANT turn

them off.

I've mentioned PANDAS to his DAN but she never went anywhere with

it or seemed

to give my concern about it much thought. any thoughts from you

guys?

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Share on other sites

OCD is not scripting, usually. OCD is the feeling that one must do

something a certain way or over and over and feels compelled to it

no matter what. If you Google, you will commonly see the example of

repeatedly handwashing. In the autism population, what I see is the

need to have things a certain way, like sameness, no changes, biting

nails, pulling/picking on themselves - their skin or hair, and fits

whenever there are changes or when they are not able to continue the

repetitive behavior. Hoarding follows under OCD, as well. Counting

constantly is also a sign, such as counting bricks, lights, or

whatever else is in your environment. Often, counting is done

silently so others don't know about it. OCD is accompanied with

anxiety, an impending doom of sorts if they don't follow their urge

to do a behavior or don't follow their same routine. So, it can be

tricky to figure out what is OCD and what isn't. I think the odd

speech is more a sign of their attempts to speak, but having to use

other parts of their brain to help out instead of the main speech

area. So, one might kind of sing their words in rhythm, or talk in

sentences from cartoons. They are probably using the creative parts

of their brain in conjunction with their under-working speech area

to get themselves to try to develop their speech. I have one that

did this, and he went from using sentences from the TV to sing-songy

speech to sounding monotone and serious and then to normal speech.

Turmeric, cod liver oil, digestive enzymes started the path for him

in developing normal speech. Many other anti-inflammatories

(natural and gentle), and anti-microbials, and things for toxins

were also used to keep him on his healing path. It's all about

rebuilding the immune system, which includes also digestive and

liver support.

Love and prayers,

Heidi N

so when you guys are saying OCD you include verbal scripting of

movies/tv/books/

music etc as an example. I've

reviewed the PANDAS info in the

past and never thought it really applied to us, but like the

initial email

below, scripting for us is the number one characteristic my son

has that

significantly interferes with his ability to be "present" in the

real world. We

are trying homeopathy now and have tried non stimulant ADHD

medication (which

worked for 2-3 weeks then stopped). I'm at my wits end for trying

to figure out

how to get it to stop. It's like the flood gate is open in his

brain in a

certain area and the neurotransmitters are gushing through without

anything to

stop it and his brain is on hyper mode with all his movies and he

just CANT turn

them off.

I've mentioned PANDAS to his DAN but she never went anywhere with

it or seemed

to give my concern about it much thought. any thoughts from you

guys?

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Share on other sites

OCD is not scripting, usually. OCD is the feeling that one must do

something a certain way or over and over and feels compelled to it

no matter what. If you Google, you will commonly see the example of

repeatedly handwashing. In the autism population, what I see is the

need to have things a certain way, like sameness, no changes, biting

nails, pulling/picking on themselves - their skin or hair, and fits

whenever there are changes or when they are not able to continue the

repetitive behavior. Hoarding follows under OCD, as well. Counting

constantly is also a sign, such as counting bricks, lights, or

whatever else is in your environment. Often, counting is done

silently so others don't know about it. OCD is accompanied with

anxiety, an impending doom of sorts if they don't follow their urge

to do a behavior or don't follow their same routine. So, it can be

tricky to figure out what is OCD and what isn't. I think the odd

speech is more a sign of their attempts to speak, but having to use

other parts of their brain to help out instead of the main speech

area. So, one might kind of sing their words in rhythm, or talk in

sentences from cartoons. They are probably using the creative parts

of their brain in conjunction with their under-working speech area

to get themselves to try to develop their speech. I have one that

did this, and he went from using sentences from the TV to sing-songy

speech to sounding monotone and serious and then to normal speech.

Turmeric, cod liver oil, digestive enzymes started the path for him

in developing normal speech. Many other anti-inflammatories

(natural and gentle), and anti-microbials, and things for toxins

were also used to keep him on his healing path. It's all about

rebuilding the immune system, which includes also digestive and

liver support.

Love and prayers,

Heidi N

so when you guys are saying OCD you include verbal scripting of

movies/tv/books/

music etc as an example. I've

reviewed the PANDAS info in the

past and never thought it really applied to us, but like the

initial email

below, scripting for us is the number one characteristic my son

has that

significantly interferes with his ability to be "present" in the

real world. We

are trying homeopathy now and have tried non stimulant ADHD

medication (which

worked for 2-3 weeks then stopped). I'm at my wits end for trying

to figure out

how to get it to stop. It's like the flood gate is open in his

brain in a

certain area and the neurotransmitters are gushing through without

anything to

stop it and his brain is on hyper mode with all his movies and he

just CANT turn

them off.

I've mentioned PANDAS to his DAN but she never went anywhere with

it or seemed

to give my concern about it much thought. any thoughts from you

guys?

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Share on other sites

This obsessive verbal scripting is included in PANDAS definitions particularly

in our case when it " must be done " it's then tripped over in to category of

ritualistic behavior and when it's episodic or sudden onset it meets criteria

for PANDAS, though multiple criteria are required.

I do agree that all scripting is not OCD and some particularly with autism it

can be a stim or something close to a menomic, etc.

So it depends.

Maddening isn't it?

Best wishes.

>

> OCD is not scripting, usually. OCD is the feeling that one must do

> something a certain way or over and over and feels compelled to it no

> matter what. If you Google, you will commonly see the example of

> repeatedly handwashing. In the autism population, what I see is the

> need to have things a certain way, like sameness, no changes, biting

> nails, pulling/picking on themselves - their skin or hair, and fits

> whenever there are changes or when they are not able to continue the

> repetitive behavior. Hoarding follows under OCD, as well. Counting

> constantly is also a sign, such as counting bricks, lights, or whatever

> else is in your environment. Often, counting is done silently so others

> don't know about it. OCD is accompanied with anxiety, an impending doom

> of sorts if they don't follow their urge to do a behavior or don't

> follow their same routine. So, it can be tricky to figure out what is

> OCD and what isn't. I think the odd speech is more a sign of their

> attempts to speak, but having to use other parts of their brain to help

> out instead of the main speech area. So, one might kind of sing their

> words in rhythm, or talk in sentences from cartoons. They are probably

> using the creative parts of their brain in conjunction with their

> under-working speech area to get themselves to try to develop their

> speech. I have one that did this, and he went from using sentences from

> the TV to sing-songy speech to sounding monotone and serious and then to

> normal speech. Turmeric, cod liver oil, digestive enzymes started the

> path for him in developing normal speech. Many other

> anti-inflammatories (natural and gentle), and anti-microbials, and

> things for toxins were also used to keep him on his healing path. It's

> all about rebuilding the immune system, which includes also digestive

> and liver support.

>

> Love and prayers,

>

> Heidi N

>

>

>

>

> so when you guys are saying OCD you include verbal scripting of

> movies/tv/books/

> music etc as an example. I've reviewed the PANDAS info in the

> past and never thought it really applied to us, but like the initial email

> below, scripting for us is the number one characteristic my son has that

> significantly interferes with his ability to be " present " in the real

> world. We

> are trying homeopathy now and have tried non stimulant ADHD medication

> (which

> worked for 2-3 weeks then stopped). I'm at my wits end for trying to

> figure out

> how to get it to stop. It's like the flood gate is open in his brain in a

> certain area and the neurotransmitters are gushing through without

> anything to

> stop it and his brain is on hyper mode with all his movies and he just

> CANT turn

> them off.

>

> I've mentioned PANDAS to his DAN but she never went anywhere with it or

> seemed

> to give my concern about it much thought. any thoughts from you guys?

>

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Share on other sites

This obsessive verbal scripting is included in PANDAS definitions particularly

in our case when it " must be done " it's then tripped over in to category of

ritualistic behavior and when it's episodic or sudden onset it meets criteria

for PANDAS, though multiple criteria are required.

I do agree that all scripting is not OCD and some particularly with autism it

can be a stim or something close to a menomic, etc.

So it depends.

Maddening isn't it?

Best wishes.

>

> OCD is not scripting, usually. OCD is the feeling that one must do

> something a certain way or over and over and feels compelled to it no

> matter what. If you Google, you will commonly see the example of

> repeatedly handwashing. In the autism population, what I see is the

> need to have things a certain way, like sameness, no changes, biting

> nails, pulling/picking on themselves - their skin or hair, and fits

> whenever there are changes or when they are not able to continue the

> repetitive behavior. Hoarding follows under OCD, as well. Counting

> constantly is also a sign, such as counting bricks, lights, or whatever

> else is in your environment. Often, counting is done silently so others

> don't know about it. OCD is accompanied with anxiety, an impending doom

> of sorts if they don't follow their urge to do a behavior or don't

> follow their same routine. So, it can be tricky to figure out what is

> OCD and what isn't. I think the odd speech is more a sign of their

> attempts to speak, but having to use other parts of their brain to help

> out instead of the main speech area. So, one might kind of sing their

> words in rhythm, or talk in sentences from cartoons. They are probably

> using the creative parts of their brain in conjunction with their

> under-working speech area to get themselves to try to develop their

> speech. I have one that did this, and he went from using sentences from

> the TV to sing-songy speech to sounding monotone and serious and then to

> normal speech. Turmeric, cod liver oil, digestive enzymes started the

> path for him in developing normal speech. Many other

> anti-inflammatories (natural and gentle), and anti-microbials, and

> things for toxins were also used to keep him on his healing path. It's

> all about rebuilding the immune system, which includes also digestive

> and liver support.

>

> Love and prayers,

>

> Heidi N

>

>

>

>

> so when you guys are saying OCD you include verbal scripting of

> movies/tv/books/

> music etc as an example. I've reviewed the PANDAS info in the

> past and never thought it really applied to us, but like the initial email

> below, scripting for us is the number one characteristic my son has that

> significantly interferes with his ability to be " present " in the real

> world. We

> are trying homeopathy now and have tried non stimulant ADHD medication

> (which

> worked for 2-3 weeks then stopped). I'm at my wits end for trying to

> figure out

> how to get it to stop. It's like the flood gate is open in his brain in a

> certain area and the neurotransmitters are gushing through without

> anything to

> stop it and his brain is on hyper mode with all his movies and he just

> CANT turn

> them off.

>

> I've mentioned PANDAS to his DAN but she never went anywhere with it or

> seemed

> to give my concern about it much thought. any thoughts from you guys?

>

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Share on other sites

This obsessive verbal scripting is included in PANDAS definitions particularly

in our case when it " must be done " it's then tripped over in to category of

ritualistic behavior and when it's episodic or sudden onset it meets criteria

for PANDAS, though multiple criteria are required.

I do agree that all scripting is not OCD and some particularly with autism it

can be a stim or something close to a menomic, etc.

So it depends.

Maddening isn't it?

Best wishes.

>

> OCD is not scripting, usually. OCD is the feeling that one must do

> something a certain way or over and over and feels compelled to it no

> matter what. If you Google, you will commonly see the example of

> repeatedly handwashing. In the autism population, what I see is the

> need to have things a certain way, like sameness, no changes, biting

> nails, pulling/picking on themselves - their skin or hair, and fits

> whenever there are changes or when they are not able to continue the

> repetitive behavior. Hoarding follows under OCD, as well. Counting

> constantly is also a sign, such as counting bricks, lights, or whatever

> else is in your environment. Often, counting is done silently so others

> don't know about it. OCD is accompanied with anxiety, an impending doom

> of sorts if they don't follow their urge to do a behavior or don't

> follow their same routine. So, it can be tricky to figure out what is

> OCD and what isn't. I think the odd speech is more a sign of their

> attempts to speak, but having to use other parts of their brain to help

> out instead of the main speech area. So, one might kind of sing their

> words in rhythm, or talk in sentences from cartoons. They are probably

> using the creative parts of their brain in conjunction with their

> under-working speech area to get themselves to try to develop their

> speech. I have one that did this, and he went from using sentences from

> the TV to sing-songy speech to sounding monotone and serious and then to

> normal speech. Turmeric, cod liver oil, digestive enzymes started the

> path for him in developing normal speech. Many other

> anti-inflammatories (natural and gentle), and anti-microbials, and

> things for toxins were also used to keep him on his healing path. It's

> all about rebuilding the immune system, which includes also digestive

> and liver support.

>

> Love and prayers,

>

> Heidi N

>

>

>

>

> so when you guys are saying OCD you include verbal scripting of

> movies/tv/books/

> music etc as an example. I've reviewed the PANDAS info in the

> past and never thought it really applied to us, but like the initial email

> below, scripting for us is the number one characteristic my son has that

> significantly interferes with his ability to be " present " in the real

> world. We

> are trying homeopathy now and have tried non stimulant ADHD medication

> (which

> worked for 2-3 weeks then stopped). I'm at my wits end for trying to

> figure out

> how to get it to stop. It's like the flood gate is open in his brain in a

> certain area and the neurotransmitters are gushing through without

> anything to

> stop it and his brain is on hyper mode with all his movies and he just

> CANT turn

> them off.

>

> I've mentioned PANDAS to his DAN but she never went anywhere with it or

> seemed

> to give my concern about it much thought. any thoughts from you guys?

>

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My son makes " uuummmhh " sound and it is immediately followed by a sound coming very deep from the throat. Like grunting,or llike he is clearing his throat. This always confuses me. Is this a tic or stim. He shakes a rope all day and I definitely know that it is stimming. But what about the vocals he makes all day long. " immh, uhhh,etc " . Are there different approaches for these two, medicationwise.? He also have some obsessions about sameness. Can anyone clear mind mind on this issue? Thanks

 

yes if it's controling to where he can't do something else then it's obsessive and compulsive, so OCD< but side note kids with measels in the gut that is a common one as well, we got rid of that one in our house with simple vit A

 

From: becky rogalski

Sent: Wednesday, January 12, 2011 12:04 PM

To: mb12 valtrex

Subject: Re: OCD

 

so when you guys are saying OCD you include verbal scripting of movies/tv/books/music etc as an example.  I've reviewed the PANDAS info in the past and never thought it really applied to us, but like the initial email below, scripting for us is the number one characteristic my son has that significantly interferes with his ability to be " present " in the real world. We are trying homeopathy now and have tried non stimulant ADHD medication (which worked for 2-3 weeks then stopped).  I'm at my wits end for trying to figure out how to get it to stop.  It's like the flood gate is open in his brain in a certain area and the neurotransmitters are gushing through without anything to stop it and his brain is on hyper mode with all his movies and he just CANT turn them off.

I've mentioned PANDAS to his DAN but she never went anywhere with it or seemed to give my concern about it much thought.  any thoughts from you guys?

To: mb12 valtrex

Sent: Tue, January 11, 2011 11:16:08 AMSubject: Re: OCD 

OCD is generally caused by PANDAS which is the result of the body building antibodies to strep. You need to learn about the symptoms and treatments for PANDAS. www.pandasnetwork.org  After each exposure to strep PANDAS gets worse and worse so it needs to be treated before it gets completely unbearable.

 

 

Subject: OCDTo: mb12 valtrex Date: Tuesday, January 11, 2011, 12:10 PM

 

Hi groupOur second issue is OCD. It is so out of hand. It has always been present through specific stims, but it has gone verbal big time in the last months. It started whenhe caught a virus at school along with most of the kids. They threw-up and had high fevers/extremely sick for days. He only threw up and had not other issues. Does HBOT help with this? Any suggestions? I have tried so many supplements. Is there something I have missed ? His OCD is literally the worse part of his autism at this moment. I would appreciate any advice Thanks,Alice

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Thank you . I did not know throat clearing could be a sign of PANDAS. I will definitely search more about this. Thanks again..Ayse

 

The throa clearing sounds like a tic. Have you looked into PANDAS? You can get info about it at www.pandasnetwork.org  Maybe your doc can give you a trial of azithromycin and see if the symptoms subside. There is also a yahoo group autism_pandas.

 

Subject: OCDTo: mb12 valtrex Date: Tuesday, January 11, 2011, 12:10 PM

 

Hi groupOur second issue is OCD. It is so out of hand. It has always been present through specific stims, but it has gone verbal big time in the last months. It started whenhe caught a virus at school along with most of the kids. They threw-up and had high fevers/extremely sick for days. He only threw up and had not other issues.

Does HBOT help with this? Any suggestions? I have tried so many supplements. Is there something I have missed ? His OCD is literally the worse part of his autism at this moment. I would appreciate any advice

Thanks,Alice

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Share on other sites

Thank you . I did not know throat clearing could be a sign of PANDAS. I will definitely search more about this. Thanks again..Ayse

 

The throa clearing sounds like a tic. Have you looked into PANDAS? You can get info about it at www.pandasnetwork.org  Maybe your doc can give you a trial of azithromycin and see if the symptoms subside. There is also a yahoo group autism_pandas.

 

Subject: OCDTo: mb12 valtrex Date: Tuesday, January 11, 2011, 12:10 PM

 

Hi groupOur second issue is OCD. It is so out of hand. It has always been present through specific stims, but it has gone verbal big time in the last months. It started whenhe caught a virus at school along with most of the kids. They threw-up and had high fevers/extremely sick for days. He only threw up and had not other issues.

Does HBOT help with this? Any suggestions? I have tried so many supplements. Is there something I have missed ? His OCD is literally the worse part of his autism at this moment. I would appreciate any advice

Thanks,Alice

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