PANDAS

[Guest guest]

Vivian said:

> Your post about the Drs. office visit was

>interesting. Even though the sore throat was not

>conclusive to strep by swab culture, the Dr. put him

>on a short course of antibiotics. Was that at your

>request?

No, that was the doc's idea - 2 days of amoxicillin while we wait for the

strep culture to come back, with more after that if it is positive.

>Does your son have PANDAs related OCD?

Yes, he was diagnosed with PANDAS about a year & a half ago and did

almost a year of prophylactic antibiotics as a result.

>Do you

>know if it should be a standard practice to do the

>blood titre?

IMHO, it should be with kids who are diagnosed PANDAS. It isn;t necessary

for garden-variety strep throat of course, the swab will usually do the

trick.

> My children have never tested positive

>for strep. My son has OCD. Today I am home from work

>with a SORETHROAT. One child at the school where I

>work was out with strep this week. I will be calling

>the Dr. to see if they recommend I be cultured. BUT,

>what I hear you saying is that the PANDAS has more to

>do with the antibodies?

The only thing exposure to the strep bacteria does is start off the

process. It works sort of like this:

1. person is exposed to strep and starts producing anti-strep antibodies.

2. anti-strep antibodies go to work on the strep bacteria.

3. anti-strep bacteria then start going to work on the basal ganglia in

the brain, which for some reason they mistake for strep bacteria.

Presumably this causes inflammation of the basal ganglia (it may cause

actual damage, nobody knows yet)

4. OCD symptoms and/or tics appear or worsen suddenly

Note that by the time steps 3 and 4 come around, the strep bacteria may

be long gone, since the immune system has been activated against them and

has gone into overdrive.

>Will the antibiotics going to

>take care of Ian and his OCD issues if it is PANDAs

>related?

Well, if there is a residual strep infection, it'll knock that out. When

he was on prophylactic antibiotics the idea was to prevent his getting

strep at all so that the PANDAS process would not get started. But when

it has already started unless you are going to do something to the

antibodies in the bloodstream via IVIG or plasmapheresis, their activity

will probably have to run its course :-(

Ian's pediatrician suspects that he was a chronic strep carrier for many

years before his diagnosis - multiple ear infections but usually no other

symptoms. Hopefully the antibiotics cleared that stuff, and anything that

comes along now is a new infection, not reactivation.

>I imagine there is alot of excitement

>generating around this fun trip you have planned. Hope

>the next week flies by and you all can go off and

>ENJOY!

Honestly, he's not very hyped up about it - I am surprised. He is afraid

of flying right now, for one thing. But I think once we get there it'll

be fun. I know I'm sure as heck ready for a break!!!

Mitzi Waltz * Author and Editor * http://www.teleport.com/~infobahn

[Guest guest]

What is PANDAS??

Thanks

Re:PANDAS

> From: Mitzi Waltz <infobahn@...>

>

> Vivian said:

> > Your post about the Drs. office visit was

> >interesting. Even though the sore throat was not

> >conclusive to strep by swab culture, the Dr. put him

> >on a short course of antibiotics. Was that at your

> >request?

>

> No, that was the doc's idea - 2 days of amoxicillin while we wait for the

> strep culture to come back, with more after that if it is positive.

>

> >Does your son have PANDAs related OCD?

> Yes, he was diagnosed with PANDAS about a year & a half ago and did

> almost a year of prophylactic antibiotics as a result.

>

> >Do you

> >know if it should be a standard practice to do the

> >blood titre?

> IMHO, it should be with kids who are diagnosed PANDAS. It isn;t necessary

> for garden-variety strep throat of course, the swab will usually do the

> trick.

>

> > My children have never tested positive

> >for strep. My son has OCD. Today I am home from work

> >with a SORETHROAT. One child at the school where I

> >work was out with strep this week. I will be calling

> >the Dr. to see if they recommend I be cultured. BUT,

> >what I hear you saying is that the PANDAS has more to

> >do with the antibodies?

>

> The only thing exposure to the strep bacteria does is start off the

> process. It works sort of like this:

> 1. person is exposed to strep and starts producing anti-strep antibodies.

> 2. anti-strep antibodies go to work on the strep bacteria.

> 3. anti-strep bacteria then start going to work on the basal ganglia in

> the brain, which for some reason they mistake for strep bacteria.

> Presumably this causes inflammation of the basal ganglia (it may cause

> actual damage, nobody knows yet)

> 4. OCD symptoms and/or tics appear or worsen suddenly

>

> Note that by the time steps 3 and 4 come around, the strep bacteria may

> be long gone, since the immune system has been activated against them and

> has gone into overdrive.

>

> >Will the antibiotics going to

> >take care of Ian and his OCD issues if it is PANDAs

> >related?

>

> Well, if there is a residual strep infection, it'll knock that out. When

> he was on prophylactic antibiotics the idea was to prevent his getting

> strep at all so that the PANDAS process would not get started. But when

> it has already started unless you are going to do something to the

> antibodies in the bloodstream via IVIG or plasmapheresis, their activity

> will probably have to run its course :-(

> Ian's pediatrician suspects that he was a chronic strep carrier for many

> years before his diagnosis - multiple ear infections but usually no other

> symptoms. Hopefully the antibiotics cleared that stuff, and anything that

> comes along now is a new infection, not reactivation.

>

> >I imagine there is alot of excitement

> >generating around this fun trip you have planned. Hope

> >the next week flies by and you all can go off and

> >ENJOY!

> Honestly, he's not very hyped up about it - I am surprised. He is afraid

> of flying right now, for one thing. But I think once we get there it'll

> be fun. I know I'm sure as heck ready for a break!!!

>

>

> Mitzi Waltz * Author and Editor * http://www.teleport.com/~infobahn

>

> > You may subscribe to the OCD-L by emailing

> listserv@... .

> In the body of your message write:

> subscribe OCD-L your name.

> The archives for the OCD and

> Parenting List may be accessed by going to

> .

> Enter your email address and password.

> Click on the highlighted list name and then click on index.

>

[Guest guest]

There is only a test to show that a child has been exposed to strep and has

antibodies to it.(It is not regular strep test, something some doctors and

MANY labs haven't clued into). The diagnosis of PANDAS is based on a positive

antibody test and the medical history of the child (a history of severe

exacerbations associated with illness). The treatment doesn't change (yet,

though the research in this direction is hopeful). Antibiotics are used to

treat the strep infection, which then can reduce the exacerbated symptoms,

but doesn't cure the OCD.

The research on this area is done at the National Institute of Mental Health

and they have excellent info about PANDAS on their website, but unfortunately

it is difficult to access. You have to get to the home page of NIMH and then

find PANDAS, or you're likely to end up looking at the pandacam at the

National Zoo! I thought I had it bookmarked, but apparently not.

And as for sore throats and OCD, I have a daughter whose OCD was rapid onset

after a viral illness, and is severely exacerbated by illness but does not,

apparently have PANDAS. This November we went to therapy one week and

marveled at how amazingly well she was doing, and her psychiatrist said we

could try stopping meds pretty soon and see if she stayed well. The next day

she had a sore throat and fever, and within two days her OCD was so out of

control we were back in the pdoc's office on an emergency basis. We have done

the antibody tests three times now in 2 years and it is always negative,

though everyone involved (neurologist, pediatrician, psychiatrist) have

always said she seems to be the textbook PANDAS case from day one. So there

is something else going on. I wonder whether anyone else has a similar

history?

[Guest guest]

My daughter developed ocd symtoms suddenly about two and a half years

ago. She did get treated for a sore throat but it was not strep.

After a couple of months her symptoms went away and did not return

until this fall. At that time she had an infected tooth and was

treated with two rounds of antibiotics. After reading about PANDAS I

had her tested for antibodies and the doctor said she had none. But

again her symptoms went away though much more slowly and less

completely this time. I have not taken her to have the OCD treated

because given her current behavior I doubt anyone would think she had

it and I can't find anyone in our town who treats children familiar

with it. But I worry when/ or if the behaviors will return.

-- In @y..., xslav@a... wrote:

> There is only a test to show that a child has been exposed to strep

and has

> antibodies to it.(It is not regular strep test, something some

doctors and

> MANY labs haven't clued into). The diagnosis of PANDAS is based on a

positive

> antibody test and the medical history of the child (a history of

severe

> exacerbations associated with illness). The treatment doesn't change

(yet,

> though the research in this direction is hopeful). Antibiotics are

used to

> treat the strep infection, which then can reduce the exacerbated

symptoms,

> but doesn't cure the OCD.

>

> The research on this area is done at the National Institute of

Mental Health

> and they have excellent info about PANDAS on their website, but

unfortunately

> it is difficult to access. You have to get to the home page of NIMH

and then

> find PANDAS, or you're likely to end up looking at the pandacam at

the

> National Zoo! I thought I had it bookmarked, but apparently not.

>

> And as for sore throats and OCD, I have a daughter whose OCD was

rapid onset

> after a viral illness, and is severely exacerbated by illness but

does not,

> apparently have PANDAS. This November we went to therapy one week

and

> marveled at how amazingly well she was doing, and her psychiatrist

said we

> could try stopping meds pretty soon and see if she stayed well. The

next day

> she had a sore throat and fever, and within two days her OCD was so

out of

> control we were back in the pdoc's office on an emergency basis. We

have done

> the antibody tests three times now in 2 years and it is always

negative,

> though everyone involved (neurologist, pediatrician, psychiatrist)

have

> always said she seems to be the textbook PANDAS case from day one.

So there

> is something else going on. I wonder whether anyone else has a

similar

> history?

>

[Guest guest]

Dear Kathy,

Thanks for the response - it's nice to know someone else out there is

waiting for those " other viruses/bacteria " to be uncovered. I follow Dr.

Swedo's research like a fanatic because I know sooner or later she's going to

discover something that will explain our situation!! By the way, Anne's

friend got sick with the same flu - same week, same symptoms - and she had a

stroke and is paralyzed on one side. I feel we got off easy with just (?)

personality changes and OCD! But it is terribly frustrating that we don't

really understand what happened inside her brain!

[Guest guest]

Hi Jeanie, there isn't a test for PANDAS per se. A child who is sick with

sore throat can have a throat culture test which will show whether there is

a current strep infection. There are two of these tests, one a rapid strep

test and the other takes a day for results. According to my daughter's ped

and her psych, the rapid strep test has a high false negative rate. If a

child has an active strep infection, antibiotics are prescribed to kill the

infection.

Another test is a blood test called an ASO titer. This measures blood

antibody levels to strep bacteria, and if elevated, shows that the child had

a strep infection in the recent past. However antibodies can remain

elevated for some time after an active infection has been cleared.

It is the elevated strep titers found *at the same time* as an abrupt

worsening of OCD symptoms that suggests a cause/effect relationship called

PANDAS. If memory serves, three abrupt worsenings in conjunction with

elevated strep titers is needed for a working diagnosis of PANDAS.

At this point unfortunately PANDAS OCD is not treated differently than

" regular " or non-strep-antibody-related OCD. The NIMH has been

investigating blood-cleansing procedures (to remove circulating strep

antibodies and hopefully short-circuit the associated OCD worsening.) A

study where PANDAS kids took antibiotics long-term to avoid getting strep in

the first place had disappointing results in that some kids got sick and had

abrupt worsenings of their OCD despite antibiotic therapy.

Hope this helps,

Kathy R in Indiana

----- Original Message -----

From: " Jeanie Vella " <jeaniev@...>

> Is there a test for PANDAS? My daughter has had quite a few strep

throats.

> She was recently tested for one, but it was negative. She often still

> complains of a sore throat, though.

>

> If the OCD is from PANDAS, does that change anything in the treatment of

> the OCD?

[Guest guest]

----- Original Message -----

From: <xslav@...>

> And as for sore throats and OCD, I have a daughter whose OCD was rapid

onset

> after a viral illness, and is severely exacerbated by illness but does

not,

> apparently have PANDAS. This November we went to therapy one week and

> marveled at how amazingly well she was doing, and her psychiatrist said we

> could try stopping meds pretty soon and see if she stayed well. The next

day

> she had a sore throat and fever, and within two days her OCD was so out of

> control we were back in the pdoc's office on an emergency basis. We have

done

> the antibody tests three times now in 2 years and it is always negative,

> though everyone involved (neurologist, pediatrician, psychiatrist) have

> always said she seems to be the textbook PANDAS case from day one. So

there

> is something else going on. I wonder whether anyone else has a similar

> history?

Though I don't have the article at hand, I read recently that Dr.

Swedo of the NIMH (who has been at the head of the PANDAS/strep research

efforts there) believes other bacteria and/or viruses will be found to also

play a part as well in PANDAS OCD and TS.

My daughter is PANDAS, she was found to have elevated antibodies to strep

three times that she had overnight and dramatic worsenings, including the

original onset. However, she also had abrupt worsening two times when she

had been recently vaguely ill with cold/flu symptoms, and did not have

elevated strep titers. Kel's psych says almost certainly other bugs are

involved, but what exactly remains to be discovered. Which IMO they cannot

do too soon.

Kathy R in Indiana

[Guest guest]

Hello bsr, I can imagine you do worry about if or when the OCD behaviors may

return. Some children with PANDAS do have complete or nearly complete

remissions of symptoms between worsenings, though my child has not been this

fortunate.

You could have your daughter's OCD traits evaluated, this would provide a

background against which you could measure her next worsening, if there is

one. As someone who was caught flatfooted by my daughter's abrupt and

severe OCD onset, I can see some value in having already formed a

relationship with a psychiatrist.

Welcome to the list.

Kathy R in Indiana

----- Original Message -----

From: <bsr3@...>

> My daughter developed ocd symtoms suddenly about two and a half years

> ago. She did get treated for a sore throat but it was not strep.

> After a couple of months her symptoms went away and did not return

> until this fall. At that time she had an infected tooth and was

> treated with two rounds of antibiotics. After reading about PANDAS I

> had her tested for antibodies and the doctor said she had none. But

> again her symptoms went away though much more slowly and less

> completely this time. I have not taken her to have the OCD treated

> because given her current behavior I doubt anyone would think she had

> it and I can't find anyone in our town who treats children familiar

> with it. But I worry when/ or if the behaviors will return.

[Guest guest]

> Will some of you who have PANDAS kids tell me what to look for as early

> symptoms?  My older daughter has strep throat right now, and the

> younger

> one was really bouncy and " on edge " today. She is probably

> " incubating "

> the strep virus.  We already have concerns about her (maybe selective

> mutism, OCD-like symptoms and general anxiety-- nothing diagnosed yet

> due to waiting list).  When I told the pediatrician last night that we

> have OCD in the family he brought up PANDAS and told me it would be

> " interesting " to see if something happens due to the strep in our

> home.

> Thanks,

> Kim in IA ( 15 OCD, Collena 9 " something " )

>

>

Let's just put it this way, if it's PANDAS, you won't be wondering when

it hits. It's pretty hard to miss <rueful laugh>

Jeanne

[Guest guest]

I would have to agree with Jeanne. You won't have to be looking for signs,

they will make themselves impossible to ignore. With my son, it's like an

overnight change. One day, it seems as if his OCD is nonexistent and then

suddenly we wake up one morning and he is totally miserable. His obsessions

and

compulsions skyrocket! The reassurance questions are endless. He will ask

the same questions over and over and over and over....... all day long. He

quickly becomes tortured by his worries!

Corinna

[Guest guest]

I would have to agree with Jeanne. You won't have to be looking for signs,

they will make themselves impossible to ignore. With my son, it's like an

overnight change. One day, it seems as if his OCD is nonexistent and then

suddenly we wake up one morning and he is totally miserable. His obsessions

and

compulsions skyrocket! The reassurance questions are endless. He will ask

the same questions over and over and over and over....... all day long. He

quickly becomes tortured by his worries!

Corinna

[Guest guest]

Hi Kim,

Some symptoms that we experienced were emotional lability and sudden

onset of OCD symptoms.

Robin

[Guest guest]

Sorry this is so late--we noticed weird fears, out of character

emotional swings and outbursts, irritability, agitation, new onset

of sleep disturbance/nightmares, off-and-on low fevers, and bladder

infection symptoms (urgency) though she did not have an infection--

in the days leading up to her onset. Then on a certain day, she

woke up with severe obsessions and compulsions, and was completely

incapacitated by these. As someone else mentioned, this is the part

you can't miss, it is so dramatic.

If your child has these symptoms or has experienced an onset, you

may want to see if her doctor will prescribe an antibiotic. After

my child's onset her ped did do this " just to see " and her symptoms

abated dramatically on the eighth day of a 10-day course of

amoxicillin. Unfortunately they returned full-force a few days

later. There is some reason to think that an antibiotic at onset

may reduce/shorten the initial episode's severity and may even

effect the severity of PANDAS reaction and OCD over time.

Good luck, take care,

Kathy R. in Indiana

> Will some of you who have PANDAS kids tell me what to look for as

early

> symptoms? My older daughter has strep throat right now, and the

younger

> one was really bouncy and " on edge " today. She is

probably " incubating "

> the strep virus. We already have concerns about her (maybe

selective

> mutism, OCD-like symptoms and general anxiety-- nothing diagnosed

yet

> due to waiting list). When I told the pediatrician last night

that we

> have OCD in the family he brought up PANDAS and told me it would

be

> " interesting " to see if something happens due to the strep in our

home.

> Thanks,

> Kim in IA ( 15 OCD, Collena 9 " something " )

>

>

>

[Guest guest]

I am very new to the group... My child was diagnosed with PANDAS about 4

weeks ago. He met all 5 of the NIMH criteria. I do wonder if my son's

issues are somehow immune related. He is 8 now but I still remember back to

when he was only two years old before he was ever diagnosed with sensory

integration dysfunction or OCD. He was absolutely inconsolable when he was

sick and always has been. It is like he gets sick and he completely

decompensates.

In my son's case I do believe that the OCD/TIC symptoms that he has now are

related to his recent bout of strep. There is just too much evidence

proving it for me to think otherwise.

Good Luck...

PANDAS

> I'm wondering how many people who belong to this group have a child

> diagnosed with PANDAS? What was the age of onset of sx?

>

> Has anyone participated in a study at NIMH?

>

> Also, does anyone feel that onset of sx in their child is immune

> related, but not necessarily correlated with strep?

>

> My son, almost 11, had a bad sore throat (now believed to be strep)

> four years ago. He was sick for three days, and on the fourth day we

> saw and explosion of tics, OCD, mood lability, separation anxiety,

> etc. Around this time symptoms of Asperger's also became apparent

> (conincidence - or not?). The onset of sx was abrupt and very

> concerning. No prior history of tics or OCD.

>

> We have been tracking ASO and antiDNAse levels over the years and ds

> also takes prophylactic antibiotics. His most recent exacerbation of

> sx was over a year ago (when we had taken him off antibiotics and he

> was exposed to strep at school). He is doing well at this time.

>

> Thanks!

>

> Khris

>

>

>

>

>

> Our list archives, bookmarks, files, and chat feature may be accessed at:

> / .

> Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

> http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner,

> Ph.D., ( http://www.lighthouse-press.com ). Our list moderators are

> Birkhan, Castle, Fowler, Kathy Hammes, Joye, Kathy

> Mac, Gail Pesses, and Kathy . Subscription issues or

> suggestions may be addressed to Louis Harkins, list owner, at

> louisharkins@... , louisharkins@... ,

> louisharkins@... .

>

>

>

>

>

>

[Guest guest]

My daughter was diagnosed with Pandas a year ago in June. She is now almost 7

years old and it happened just as most of you explained. A strep infection

followed by severe OCD. Also, I am just sure that my daughter's issues are

immune related because over x-mas this year, she was diagnosed with Himophluous

Influenza, which she shouldn't have been able to get because it has a routine

vaccination and she received it when she was very little. I really don't know

quite what to do for her. She is taking Zoloft now and is doing a bit better

but for a long while, it was horrible for all of us.

PANDAS is the worst thing for a child to have to endure alone and

unfortunately a lot of therapists out there think that the only way for a child

to work through the OCD is to learn to deal with it on their own. I believe

this maybe for an adult, but a 6 year old? Come on.

Darcie

Judy Mendoza <judy@...> wrote:

I am very new to the group... My child was diagnosed with PANDAS about 4

weeks ago. He met all 5 of the NIMH criteria. I do wonder if my son's

issues are somehow immune related. He is 8 now but I still remember back to

when he was only two years old before he was ever diagnosed with sensory

integration dysfunction or OCD. He was absolutely inconsolable when he was

sick and always has been. It is like he gets sick and he completely

decompensates.

In my son's case I do believe that the OCD/TIC symptoms that he has now are

related to his recent bout of strep. There is just too much evidence

proving it for me to think otherwise.

Good Luck...

PANDAS

> I'm wondering how many people who belong to this group have a child

> diagnosed with PANDAS? What was the age of onset of sx?

>

> Has anyone participated in a study at NIMH?

>

> Also, does anyone feel that onset of sx in their child is immune

> related, but not necessarily correlated with strep?

>

> My son, almost 11, had a bad sore throat (now believed to be strep)

> four years ago. He was sick for three days, and on the fourth day we

> saw and explosion of tics, OCD, mood lability, separation anxiety,

> etc. Around this time symptoms of Asperger's also became apparent

> (conincidence - or not?). The onset of sx was abrupt and very

> concerning. No prior history of tics or OCD.

>

> We have been tracking ASO and antiDNAse levels over the years and ds

> also takes prophylactic antibiotics. His most recent exacerbation of

> sx was over a year ago (when we had taken him off antibiotics and he

> was exposed to strep at school). He is doing well at this time.

>

> Thanks!

>

> Khris

>

>

>

>

>

> Our list archives, bookmarks, files, and chat feature may be accessed at:

> / .

> Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

> http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner,

> Ph.D., ( http://www.lighthouse-press.com ). Our list moderators are

> Birkhan, Castle, Fowler, Kathy Hammes, Joye, Kathy

> Mac, Gail Pesses, and Kathy . Subscription issues or

> suggestions may be addressed to Louis Harkins, list owner, at

> louisharkins@... , louisharkins@... ,

> louisharkins@... .

>

>

>

>

>

>

[Guest guest]

My daughter was diagnosed with Pandas a year ago in June. She is now almost 7

years old and it happened just as most of you explained. A strep infection

followed by severe OCD. Also, I am just sure that my daughter's issues are

immune related because over x-mas this year, she was diagnosed with Himophluous

Influenza, which she shouldn't have been able to get because it has a routine

vaccination and she received it when she was very little. I really don't know

quite what to do for her. She is taking Zoloft now and is doing a bit better

but for a long while, it was horrible for all of us.

PANDAS is the worst thing for a child to have to endure alone and

unfortunately a lot of therapists out there think that the only way for a child

to work through the OCD is to learn to deal with it on their own. I believe

this maybe for an adult, but a 6 year old? Come on.

Darcie

Judy Mendoza <judy@...> wrote:

I am very new to the group... My child was diagnosed with PANDAS about 4

weeks ago. He met all 5 of the NIMH criteria. I do wonder if my son's

issues are somehow immune related. He is 8 now but I still remember back to

when he was only two years old before he was ever diagnosed with sensory

integration dysfunction or OCD. He was absolutely inconsolable when he was

sick and always has been. It is like he gets sick and he completely

decompensates.

In my son's case I do believe that the OCD/TIC symptoms that he has now are

related to his recent bout of strep. There is just too much evidence

proving it for me to think otherwise.

Good Luck...

PANDAS

> I'm wondering how many people who belong to this group have a child

> diagnosed with PANDAS? What was the age of onset of sx?

>

> Has anyone participated in a study at NIMH?

>

> Also, does anyone feel that onset of sx in their child is immune

> related, but not necessarily correlated with strep?

>

> My son, almost 11, had a bad sore throat (now believed to be strep)

> four years ago. He was sick for three days, and on the fourth day we

> saw and explosion of tics, OCD, mood lability, separation anxiety,

> etc. Around this time symptoms of Asperger's also became apparent

> (conincidence - or not?). The onset of sx was abrupt and very

> concerning. No prior history of tics or OCD.

>

> We have been tracking ASO and antiDNAse levels over the years and ds

> also takes prophylactic antibiotics. His most recent exacerbation of

> sx was over a year ago (when we had taken him off antibiotics and he

> was exposed to strep at school). He is doing well at this time.

>

> Thanks!

>

> Khris

>

>

>

>

>

> Our list archives, bookmarks, files, and chat feature may be accessed at:

> / .

> Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

> http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner,

> Ph.D., ( http://www.lighthouse-press.com ). Our list moderators are

> Birkhan, Castle, Fowler, Kathy Hammes, Joye, Kathy

> Mac, Gail Pesses, and Kathy . Subscription issues or

> suggestions may be addressed to Louis Harkins, list owner, at

> louisharkins@... , louisharkins@... ,

> louisharkins@... .

>

>

>

>

>

>

[Guest guest]

Khris,

My son was diagnosed with Pandas at age 5. He had strep in late November. Then

he went to get the MMR and DPT shot on Dec 31. The next day he got TICs, OCD,

separation anxiety, funny hand movements, high pitched crying, and a host of

other symptoms. He did have elevated strep titres. Most symptoms faded over the

following months but still has OCD & Tics although more mild now as he has been

on prophylactic penicillin and CBT ERP. He is in the pandas study at Univ of Fla

Gainesville which is similar to the NIMH study.

>

> From: " dinosaurkidsmom " <supernova8675309@...>

> Date: 2006/02/19 Sun PM 03:28:57 EST

>

> Subject: PANDAS

>

> I'm wondering how many people who belong to this group have a child

> diagnosed with PANDAS? What was the age of onset of sx?

>

> Has anyone participated in a study at NIMH?

>

> Also, does anyone feel that onset of sx in their child is immune

> related, but not necessarily correlated with strep?

>

> My son, almost 11, had a bad sore throat (now believed to be strep)

> four years ago. He was sick for three days, and on the fourth day we

> saw and explosion of tics, OCD, mood lability, separation anxiety,

> etc. Around this time symptoms of Asperger's also became apparent

> (conincidence - or not?). The onset of sx was abrupt and very

> concerning. No prior history of tics or OCD.

>

> We have been tracking ASO and antiDNAse levels over the years and ds

> also takes prophylactic antibiotics. His most recent exacerbation of

> sx was over a year ago (when we had taken him off antibiotics and he

> was exposed to strep at school). He is doing well at this time.

>

> Thanks!

>

> Khris

>

>

>

>

>

> Our list archives, bookmarks, files, and chat feature may be accessed at:

/ .

> Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner, Ph.D., (

http://www.lighthouse-press.com ). Our list moderators are Birkhan,

Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail

Pesses, and Kathy . Subscription issues or suggestions may be

addressed to Louis Harkins, list owner, at louisharkins@... ,

louisharkins@... , louisharkins@... .

>

>

>

[Guest guest]

The PANDAS diagnosis is the result of the study done confirming a

link between sudden onset ocd and strep infection.

But, reading the study results yourself is worthwhile. Because the

doctor started with over 200 sudden onset patients found by referral

and by looking around - then after after a phone interview about 100

were brought in for a more thorough interview . . .the doctor finally

settled on " the first 50 " to do the study with . . .

After I read this study - valuable as it may be - I have always

intensely wondered about the other 150 or so sudden onset.

They weren't included in the study - and I understand how their

exclusion made the study more valid and workable -

But WHAT ABOUT the other 150!!!!

Many of us have children with sudden onset - and many of us have

children where we have seen the signs since early on - many of us see

flare up of symptoms with viral/bacterial infection -

The follow up study of the other 150 as well as those who were not

sudden onset have not been done.

So, at this point, a PANDAS diagnosis in relation to strep is the

only one possible . . . we as parents of these children know better.

The PANDAS diagnosis is unique primarily because it is the only

alternative available to plain old OCD - I believe more will be

discovered through research once the research is done.

>

> I'm wondering how many people who belong to this group have a child

> diagnosed with PANDAS? What was the age of onset of sx?

>

> Has anyone participated in a study at NIMH?

>

> Also, does anyone feel that onset of sx in their child is immune

> related, but not necessarily correlated with strep?

>

> My son, almost 11, had a bad sore throat (now believed to be strep)

> four years ago. He was sick for three days, and on the fourth day

we

> saw and explosion of tics, OCD, mood lability, separation anxiety,

> etc. Around this time symptoms of Asperger's also became apparent

> (conincidence - or not?). The onset of sx was abrupt and very

> concerning. No prior history of tics or OCD.

>

> We have been tracking ASO and antiDNAse levels over the years and

ds

> also takes prophylactic antibiotics. His most recent exacerbation

of

> sx was over a year ago (when we had taken him off antibiotics and

he

> was exposed to strep at school). He is doing well at this time.

>

> Thanks!

>

> Khris

>

[Guest guest]

Sorry if this is late - I missed the original post.

My daughter, who is now 13, had a sudden onset of OCD (and ADHD and tics,

although we didn't recognize these additional things at the time) when she

was four. She had a bad viral illness which caused encephalitis (basically the

virus got into her central nervous system) and on the third day of the illness

she became a different child. She had exacerbations of it on a yearly basis in

late fall until a couple of years ago. The explanation we received for this

was that her immune system was fighting off all the bugs that go around at that

time of year, and the overload caused her OCD to flare up. Who knows if

that's really what happened. At any rate, she is considered a PITANDS case -

basically PANDAS but caused by a viral or bacterial infection other than strep.

She was in therapy for many years (hasn't been for nearly a year!!!!) and

has been on medication since she was 7, when she was finally correctly

diagnosed. She is doing very, very well these days. Her ADHD is the main problem

-

we see almost no OCD or tics at this point. She is still not the child she was

before her onset, particularly because she is so unable to focus on one thing

at a time, but she is a happy, healthy, more or less normal teenager

(whatever that is).

in NV

[Guest guest]

>

> Sorry if this is late - I missed the original post.

> My daughter, who is now 13, had a sudden onset of OCD (and ADHD

and tics,

> although we didn't recognize these additional things at the time)

when she

> was four. She had a bad viral illness which caused encephalitis

(basically the

> virus got into her central nervous system) and on the third day of

the illness

> she became a different child. She had exacerbations of it on a

yearly basis in

> late fall until a couple of years ago. The explanation we received

for this

> was that her immune system was fighting off all the bugs that go

around at that

> time of year, and the overload caused her OCD to flare up. Who

knows if

> that's really what happened. At any rate, she is considered a

PITANDS case -

> basically PANDAS but caused by a viral or bacterial infection other

than strep.

> She was in therapy for many years (hasn't been for nearly a

year!!!!) and

> has been on medication since she was 7, when she was finally

correctly

> diagnosed. She is doing very, very well these days. Her ADHD is the

main problem -

> we see almost no OCD or tics at this point. She is still not the

child she was

> before her onset, particularly because she is so unable to focus on

one thing

> at a time, but she is a happy, healthy, more or less normal

teenager

> (whatever that is).

> in NV

>

>

>

[Guest guest]

>

> Sorry if this is late - I missed the original post.

> My daughter, who is now 13, had a sudden onset of OCD (and ADHD

and tics,

> although we didn't recognize these additional things at the time)

when she

> was four. She had a bad viral illness which caused encephalitis

(basically the

> virus got into her central nervous system) and on the third day of

the illness

> she became a different child. She had exacerbations of it on a

yearly basis in

> late fall until a couple of years ago. The explanation we received

for this

> was that her immune system was fighting off all the bugs that go

around at that

> time of year, and the overload caused her OCD to flare up. Who

knows if

> that's really what happened. At any rate, she is considered a

PITANDS case -

> basically PANDAS but caused by a viral or bacterial infection other

than strep.

> She was in therapy for many years (hasn't been for nearly a

year!!!!) and

> has been on medication since she was 7, when she was finally

correctly

> diagnosed. She is doing very, very well these days. Her ADHD is the

main problem -

> we see almost no OCD or tics at this point. She is still not the

child she was

> before her onset, particularly because she is so unable to focus on

one thing

> at a time, but she is a happy, healthy, more or less normal

teenager

> (whatever that is).

> in NV

>

>

>

[Guest guest]

Dear Cybele,

We are also seeing Dr. Hoffman since April 2006. My son got sudden onset OCD on

Jan 1 2006 at age 5. He is in Dr. 's research study for PANDAS and also is

in their prophylactic penicillin research also. So he is taking penicillin all

the time. He was very severe at onset (with no symptoms prior) as it occurred

the day after MMR and DPT shot. He also had strep the month before. He

experienced almost all the symptoms you describe plus some others such as

magical thinking, fear of getting fat (while weighing 35 lbs!), repetitive

talking, repetitive questioning, repetitive touching,pinching himself, etc. Most

of the symptoms gradually disappeared but he still has some TICS/OCD. He is much

better, I believe due to penicillin and the CBT ERP therapy. The OCD still

affects him daily but it is much more in the background. I think it is also a

good idea to read a few books about how to help your child with OCD, I know this

really helped me to watch out for new issues and take action before they are out

of control. I think PANDAS is not better or worse just different. It is not

really yet a completely accepted theory although some prominent universities

such as Duke are studying it. You still need to treat the OCD anyway with CBT

ERP because then they will be prepared for whatever is around the next corner.

My son has had chronic sinus,ear,throat infections and I think you can have

strep in the nose that doesn't show up on throat swabs. He did have elevated

strep titres at the time of his onset. We are also now treating him with NAET

allergy in hopes of reducing the opportunities for infection.

>

> From: " cybelebotran " <cybelebotran@...>

> Date: 2006/03/25 Sat PM 01:42:32 EST

>

> Subject: PANDAS

>

> Dear All,

>

> We just received a blood test results of my son and we found

> out that his ASO TITER was 393. This blood test was done 1 ½ month

> ago, after a sudden and dramatic onset of very severe OCD, where he

> was " frozen " at home for a few days. His OCD continues to be severe.

> Furthermore my son 's presents the following signs and

> symptoms:

>

> Presence of tics and hyperactivity (psychiatrists have suggested

> that he has the Triad of Tics/ADD/OCD).

> Involuntary and irregular movements of his face and arms (chin and

> arms trembles)

> Irritability, temper tantrums and mood liability: dramatic increase

> in teasing and fighting with brother, aggression towards self (used

> knife to threatened stabbing self, choking self) and unusual

> roughness with pets (cats) and younger sister

> Age regression: wetting the bed, sucking his thumb

> Separation anxiety: very clingy, wanting to sleep with parents,

> worried when we leave room or go to out.

> Nighttime difficulties: mentioned above

> New bedtime fears and nightmares: minimal nightmares and sleeps well

> (10 hours), sometimes wakes at 4 am to use bathroom

>

> Everything started when, at the end of November, 2005, when he had a

> sudden fear of food poisoning, he started showing very strange

> behaviors around the house; not wanting to step onto lines or

> carpets or under doorways, not wanting to go through imaginary lines

> between points (creating a portal), needing to return from a place

> the same way he went, many things did not feel right, clothes,

> shoes, towels, sheets. His principle fears are that he will go into

> a different dimension; or go back in time, and that something bad

> will happen to us, his parents. His compulsions are repetitions, not

> stepping onto the rugs, lines etc, sweeping his feet to

> clean " stains " . In just few days we went from strange behaviors, to

> being " frozen " and not be able to do anything; his feet seemed glued

> to the floor, in a " safe " spot he chose in the house.

>

> According to his pediatric records, had Strep throat 2 years

> ago. Now retrospectively we realized that at the time some of his

> behaviors were OCD but we did not realized because not only we did

> not know anything about OCD but also as it appears in a couple of

> weeks was gone. Equally when we was 4 years old we remember he was

> very ill when we moved to Mexico City and weeks later his teacher

> told us that after a higyne class he was cleaning his hands

> compulsively. Again this was during a couple of weeks and it went

> away so we never gave it any importance. Now in this sudden onset he

> was not ill with strep throat recently and although the ASO Titer

> blood work indicated high levels, as stated before, his throat

> culture for strep came out negative. However I had step throat which

> he could have passed to me and his was with not symtomps.

>

> For the 6 weeks he has been taking Prozac and Klonopin. He started

> on Prozac with 10 mg increasing to 20 and 30, increasing 10 mg each

> week, and now staying on 30 mg for the last four weeks. He started

> with Klonopin .25 mg morning and evening. During the crisis we went

> to three .25 mg Klonopin and currently he is only on one .25 mg in

> the morning, continuing with the 30 mg Prozac. He also has been

> going to CBT-ERP therapy with Doctor Hoffman and Dr.

> Spielman for the last six weeks. He started the first month with

> intensive therapy, every day, five times a week for 1 ½ hour. Now we

> are currently reduced to three days of which two of them are 1 ½

> hour and the other is 3/4 hour. Furthermore, we have changed our

> dynamics and communication in the family so we do not create

> codependence and reward negative behavior, i.e. we have started a

> reward system using a goals chart and use praise and positive

> discipline, following the guidelines of the psychologists.

>

> After all these efforts, is not frozen anymore but he still

> is in scale of 1 to 10, as said by his Psychiatrist, Dr.

> Cremer, in a very severe case of OCD between 7 and 8. His obsessions

> and rituals have changed, and his tics have dramatically increased

> and they are dozens of them.

>

> We have seen a video tape where and Wayne Goodman

> presented PANDAS at the OCD Foundation's annual meeting in 1997 and

> we are very interested in knowing more about PANDAS.

>

> Any one out there that their kid has been identified as PANDA?

> What treatment are you following? Is to be PANDA something positive

> because you can control more the OCD disorder or is negative because

> the antibodies responsible can also been damaging other helthy

> organs structures?

>

> We are looking forward to your comments.

>

>

>

> With gratitude,

>

> Cybele

>

>

>

>

>

>

>

>

> Our list archives, bookmarks, files, and chat feature may be accessed at:

/ .

> Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

http://www.worrywisekids.org ), Dan Geller, M.D.,Aureen Pinto Wagner, Ph.D., (

http://www.lighthouse-press.com ). Our list moderators are Birkhan,

Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail

Pesses, and Kathy . Subscription issues or suggestions may be

addressed to Louis Harkins, list owner, at louisharkins@... ,

louisharkins@... , louisharkins@... .

>

>

>

[Guest guest]

Hi Everyone,

Does anyone have any experience with PANDAS? How would you know if your ocd

was caused by this?

My dd was just diagnosed with a strep infection and scarlet fever.The only

reason she was even tested was because of the rash she had. The doctor said she

may have had it for months, and really has no idea how long she could have had

it.. Could it have anything to do with the ocd? She has had ocd for years, but

could this make it worse?

Any info would be appreciated.

Hugs

Judy

[Guest guest]

Hi Judy,

I have no experience w/ PANDAS, but I know others here have, and will

respond to your post. I just wanted to put my 2 cents in. There are

many kids whose OCD was brought to the forefront, or exacerbated (sp?)

by strep. I think in the years to come they will find other physical

ailments that bring it on. I firmly believe that the recent OCD

breakdown my daughter had was the result of a fever that lasted

several days. I know it wasn't strep, just a bad virus, but I'm

thinking the fever affected a part of her brain that also triggers

OCD. A common cold can bring out her OCD a bit, but nothing to the

degree this last virus did.

nna.

NY

>

>

>

> Hi Everyone,

> Does anyone have any experience with PANDAS? How would you know if

your ocd was caused by this?

> My dd was just diagnosed with a strep infection and scarlet

fever.The only reason she was even tested was because of the rash she

had. The doctor said she may have had it for months, and really has no

idea how long she could have had it.. Could it have anything to do

with the ocd? She has had ocd for years, but could this make it worse?

> Any info would be appreciated.

> Hugs

> Judy

>

>

>

[Guest guest]

-

My 4 year old- , was diagnosed with PANDAS a couple of months ago after

sudden onset of OCD symptoms. Like your son, she also tested negative for strep

(the rapid and overnight culture) but my older daughter did have strep when

's symptoms started. We had the bloodwork taken for PANDAS to test for

the titers and they came back within the normal range. BUT, we have a great

pediatrician and child psychiatrist and they both agreed that the " normal range "

of titers might not be normal for and they have been treating her as if

she has PANDAS.

We have found that when she is exposed to Strep at pre-school, her behavior is

definitely affected.

She has been on a prophylactic dose of an antibiotic and it seems to really

been helping. She's not tantruming anymore, she'll eat and brush her teeth

again (she wouldn't when things were at there worst) and she's just happier. We

told her that she is allergic to strep throat so she has to take her medicine or

she gets very cranky and thinks things are dirty when they aren't. We also met

with a therapist who specializes in OCD and anxiety in young children. I've

been doing a modified version of CBT with . That has been helpful in

giving us a common language to talk about her anxiety.

I would pursue the PANDAS diagnosis a little more with your providers given

the sudden onset.

Good Luck!

Jill

__________________________________________________