Pandas Mom's - need advice

[Guest guest]

I have a question – Meg has been so much worse since her camp experience -

about 4x where she was the week before. This is exactly what happened last

year, when this all started (well, I'm not sure that is true - I can see little

things before then, but I would never have known it was anything more than mild

anxiety when tired, if the bottom had not dropped out at the end of May). Part

of me feels that this is coincidence, but I am wondering about 2 things –

1.Last year, her best friend had strep right after camp. I had Meg tested for

antibodies about a month later – they were not high.

2.I found out today, that this year, another good friend had Impetigo at camp.

When I googled this tonight, in case Meg ends up with sores (none yet), I found

that this can also be a strep virus?

I'm not sure that this would matter to her treatment, or her life, if something

" causes " her to get worse, but thought I would ask if there is a connection –

and if so, does it make a difference – or do we just continue to deal with it as

we are now (therapy, which helps a lot - she is much " better " this time around -

but it is still such a huge change from a week ago).

It seems odd that this came up last year in a huge way – and that it got so much

worse so quickly this year, despite all her hard work with exposure. I had

wondered if allergies at this time of year might contribute (although she shows

no signs of anything).

in NC

[Guest guest]

,

I don't know if this is even right, but my son's ocd came on strong and I, too,

thought it to be Pandas.  Still don't know if it is or not, but he was treated

with Mindsoothe, Jr (Native Remedies.com) with great success.  The Mindsoothe,

Jr. is basically St. 's Wort and I recently read that St. 's wort is an

anti-histimine and that if it works well for your child, then it can be that the

ocd is a high histimine reaction ... perhaps this goes along with allergy-like

symptoms?

Subject: Pandas Mom's - need advice

To:

Date: Friday, May 29, 2009, 11:05 PM

I have a question – Meg has been so much worse since her camp experience -

about 4x where she was the week before. This is exactly what happened last year,

when this all started (well, I'm not sure that is true - I can see little things

before then, but I would never have known it was anything more than mild anxiety

when tired, if the bottom had not dropped out at the end of May). Part of me

feels that this is coincidence, but I am wondering about 2 things –

1.Last year, her best friend had strep right after camp. I had Meg tested for

antibodies about a month later – they were not high.

2.I found out today, that this year, another good friend had Impetigo at camp.

When I googled this tonight, in case Meg ends up with sores (none yet), I found

that this can also be a strep virus?

I'm not sure that this would matter to her treatment, or her life, if something

" causes " her to get worse, but thought I would ask if there is a connection –

and if so, does it make a difference – or do we just continue to deal with it

as we are now (therapy, which helps a lot - she is much " better " this time

around - but it is still such a huge change from a week ago).

It seems odd that this came up last year in a huge way – and that it got so

much worse so quickly this year, despite all her hard work with exposure. I had

wondered if allergies at this time of year might contribute (although she shows

no signs of anything).

in NC

[Guest guest]

Do you mean last year when she went to camp and returned she was highly anxious

too.

I wonder ..the experience of being away from home at camp

can make a person feel very vulnerable and disconnected

from there support at home. I always felt so safe at

home as a child. I wanted to go to camp but when I was there I realized how

frightening it was to be disconnected from my family and

it shook me up to my core. I would never have admitted this to my family. The

whole experience scared me so. I distracted myself from the idea.

Now my daughter is sick on or after vacations unless we keep the

vacation very structured and similar to home. I think we have a

good plan not to stress her out anymore on vacation or we will

have some kind of OCD like issues.

On vacations my husband too is very obsessed as a way to cope

with the change of not being home.

I wondered too is it the sickness that causes the anxiety or the

anxiety that stresses her out and then gets sick.

Here is what I noticed. In stressful situations my daughter's

immunity is reduced and she catches stuff, first it was pinkeye, then it was

stomach viruses, then it was coaxsacke viruses, now it

is colds turning to sinus infections. The stress triggers illness and then I see

the OCD stuff emerge. In our case the stress is triggering

the OCD.

All winter she was stressed at school, gets sick and a sinus

infection and then OCD stuff, then school refusal as anxiety

is peaked. As she is out of the stressful setting no illnesses even

though she is around family with colds etc.

I think sickness can cause OCD symptoms in that being sick

can be a stress too. Seeing doctors etc.

Pam

- , " susangalway " wrote:

>

> I have a question – Meg has been so much worse since her camp experience -

about 4x where she was the week before. This is exactly what happened last

year, when this all started (well, I'm not sure that is true - I can see little

things before then, but I would never have known it was anything more than mild

anxiety when tired, if the bottom had not dropped out at the end of May). Part

of me feels that this is coincidence, but I am wondering about 2 things –

>

> 1.Last year, her best friend had strep right after camp. I had Meg tested for

antibodies about a month later – they were not high.

> 2.I found out today, that this year, another good friend had Impetigo at camp.

When I googled this tonight, in case Meg ends up with sores (none yet), I found

that this can also be a strep virus?

>

> I'm not sure that this would matter to her treatment, or her life, if

something " causes " her to get worse, but thought I would ask if there is a

connection – and if so, does it make a difference – or do we just continue to

deal with it as we are now (therapy, which helps a lot - she is much " better "

this time around - but it is still such a huge change from a week ago).

>

> It seems odd that this came up last year in a huge way – and that it got so

much worse so quickly this year, despite all her hard work with exposure. I had

wondered if allergies at this time of year might contribute (although she shows

no signs of anything).

>

> in NC

>

[Guest guest]

I have similar thoughts about at times, but then again, I wonder if

being around sick people is enough stress to trigger obsessive thougths? Could

go either way I guess.

Bonnie

>

> I have a question � Meg has been so much worse since her camp experience -

about 4x where she was the week before. This is exactly what happened last

year, when this all started (well, I'm not sure that is true - I can see little

things before then, but I would never have known it was anything more than mild

anxiety when tired, if the bottom had not dropped out at the end of May). Part

of me feels that this is coincidence, but I am wondering about 2 things �

>

> 1.Last year, her best friend had strep right after camp. I had Meg tested for

antibodies about a month later � they were not high.

> 2.I found out today, that this year, another good friend had Impetigo at camp.

When I googled this tonight, in case Meg ends up with sores (none yet), I found

that this can also be a strep virus?

>

> I'm not sure that this would matter to her treatment, or her life, if

something " causes " her to get worse, but thought I would ask if there is a

connection � and if so, does it make a difference � or do we just continue

to deal with it as we are now (therapy, which helps a lot - she is much " better "

this time around - but it is still such a huge change from a week ago).

>

> It seems odd that this came up last year in a huge way � and that it got so

much worse so quickly this year, despite all her hard work with exposure. I had

wondered if allergies at this time of year might contribute (although she shows

no signs of anything).

>

> in NC

>

[Guest guest]

Just thought I'd jump in - I joined this group because I thought my daughter was

strictly OCD- though certain things didn't make sense about her behavior - turns

out she has Tourettes with mild OCD - or at least, she had OCD. She came to us

in Kindergarten last year and said she had a " touching problem " - if her hand

touched something, the other hand had to touch the same thing, or she'd get a

" bad feeling " - as she put it. So we also put her on Mindsoothe Jr., played

around with the doseage, and the OCD came & went - just today, she said it is

gone when I asked her. (Tourettes still the big issue.) I do think Mindsoothe

Jr. can work wonders. And the allergy connection - I think yes. My daughter was

just diagnosed with food allergies to eggs and glutens. She has had severe

eczema behind her ear since she was 2. She also had impetigo in kindergarten,

but never strep throat. That possible impetigo connection is new info for me.

She is on a rotation diet now, homeopathic detox was just completed, and she is

taking a variety of other vitamins/supplements. Today she just took a customized

homeopathic constitutional remedy sent to us by her naturopath. She's discovered

yoga and LOVES it. I'm seeing a shift in her with all of this - less explosive

meltdowns, more calm - but tics still there, may always be - but I think changes

are happening. I really see that a holistic approach is necessary - healing

needs to occur on so many levels, all systems affect one another.

>

>

>

> Subject: Pandas Mom's - need advice

> To:

> Date: Friday, May 29, 2009, 11:05 PM

>

>

>

>

>

>

>

>

> I have a question †" Meg has been so much worse since her camp experience -

about 4x where she was the week before. This is exactly what happened last year,

when this all started (well, I'm not sure that is true - I can see little things

before then, but I would never have known it was anything more than mild anxiety

when tired, if the bottom had not dropped out at the end of May). Part of me

feels that this is coincidence, but I am wondering about 2 things †"

>

> 1.Last year, her best friend had strep right after camp. I had Meg tested for

antibodies about a month later †" they were not high.

> 2.I found out today, that this year, another good friend had Impetigo at camp.

When I googled this tonight, in case Meg ends up with sores (none yet), I found

that this can also be a strep virus?

>

> I'm not sure that this would matter to her treatment, or her life, if

something " causes " her to get worse, but thought I would ask if there is a

connection †" and if so, does it make a difference †" or do we just continue

to deal with it as we are now (therapy, which helps a lot - she is much " better "

this time around - but it is still such a huge change from a week ago).

>

> It seems odd that this came up last year in a huge way †" and that it got so

much worse so quickly this year, despite all her hard work with exposure. I had

wondered if allergies at this time of year might contribute (although she shows

no signs of anything).

>

> in NC

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

,

Here is a very good starting point to help you decide if you're dealing with

PANDAS or traditional OCD or tics:

http://www.webpediatrics.com/pandas.html

It's a good diagnostic chart to help you sort out symptoms.

Many are under the impression that it makes no difference whether the cause of

your child's OCD is strep or some other thing. That you still have to treat the

OCD. But the cause makes a huge difference in course of treatment.

As for a negative titer last year, that carries little weight. My son had a

severe case of strep when we realized he had PANDAS - the rapid culture turned

positive in 30 seconds - and three weeks later had a negative titer result.

Titers only have meaning if you do a series of them and have numeric results,

not positive/negative.

One final link to help you separate PANDAS from OCD -

http://www.webpediatrics.com/pandasclinicalcases.html

The stories are striking and really illustrate why the difference between PANDAS

and OCD or Tourettes is so important.

If you'd like more resources, let me know.

[Guest guest]

That is great, a! I'm so glad you found some things that are helping her.

)

BJ

>

> Just thought I'd jump in - I joined this group because I thought my daughter

was strictly OCD- though certain things didn't make sense about her behavior -

turns out she has Tourettes with mild OCD - or at least, she had OCD. She came

to us in Kindergarten last year and said she had a " touching problem " - if her

hand touched something, the other hand had to touch the same thing, or she'd get

a " bad feeling " - as she put it.

[Guest guest]

Thanks to everyone for advice. These websites were helpful, I emailed the site

with questions (hopefully, I don't receive e-mail for the rest of my life!). I

think the more I read, the more I think that Meg is on the edge of this, but not

sure what to do about it - I may see if I can get her on a regular schedule of

testing for antibodies once a month, so I have a record - is that what you

recommend? Or is that over-reacting?

I think her OCD is multiplied by a dramatic effect with exposure to illness -

but that often she does not even know they are sick (not showing yet), so I

don't think it is the ick factor (we have that too, but not so dramatic). I

continue to wonder about the role that antibodies have on her brains ability to

function, and wish I could find a local doctor that shared my interest in this,

so that I could have a true medical perspective to what I read vs what she

experiences. She is rarely sick - it's like she has a super ability to resist

(or maybe it's all that darn handwashing!!! ha!) I have this feeling that in 20

years, we'll be amazed at what we have learned. In the meantime, we continue to

focus on therapy and staying positive about her abilities - and when I cannot

sleep at night, I continue to haunt the internet looking for answers. Thanks

all - I am so grateful to have this group - I think it is my sanity on some

days. I also blog about this experience - I was never one to write a letter

before all this, but I find it just pouring out lately. Good thing I have a few

outlets!!!

>

> ,

> Here is a very good starting point to help you decide if you're dealing with

PANDAS or traditional OCD or tics:

>

> http://www.webpediatrics.com/pandas.html

> It's a good diagnostic chart to help you sort out symptoms.

>

> Many are under the impression that it makes no difference whether the cause of

your child's OCD is strep or some other thing. That you still have to treat the

OCD. But the cause makes a huge difference in course of treatment.

>

> As for a negative titer last year, that carries little weight. My son had a

severe case of strep when we realized he had PANDAS - the rapid culture turned

positive in 30 seconds - and three weeks later had a negative titer result.

Titers only have meaning if you do a series of them and have numeric results,

not positive/negative.

>

> One final link to help you separate PANDAS from OCD -

> http://www.webpediatrics.com/pandasclinicalcases.html

> The stories are striking and really illustrate why the difference between

PANDAS and OCD or Tourettes is so important.

>

> If you'd like more resources, let me know.

>

>

[Guest guest]

in NC-

I wanted to comment on the impetigo. Impetigo is a strep infection on the skin

and can trigger a PANDAS reaction exactly the same way a strep throat infection

triggers it. You described two incidences when your daughter's behaviors

escalated after being exposed to strep which is very suspiciuous of PANDAS. As

far as the antibody titer levels- titers can be perfectly normal in the midst of

a strep infection. There is a lot of misinformation where this is concerned.

You DO NOT need elevated titers to have PANDAS and if a physician claims that

you do, he/she is completely wrong.Unfortunately b/c some physicians are

practicing under this false assumption, children are being misdiagnosed. Many

PANDAS children will have normal titers during a PANDAS episode, even WITH a

poasitive culture. I would suggest having a 72 hour throat culture done ASAP.

Good luck. If you want more info, let me know.

Colleen

>

> I have a question – Meg has been so much worse since her camp experience -

about 4x where she was the week before. This is exactly what happened last

year, when this all started (well, I'm not sure that is true - I can see little

things before then, but I would never have known it was anything more than mild

anxiety when tired, if the bottom had not dropped out at the end of May). Part

of me feels that this is coincidence, but I am wondering about 2 things –

>

> 1.Last year, her best friend had strep right after camp. I had Meg tested for

antibodies about a month later – they were not high.

> 2.I found out today, that this year, another good friend had Impetigo at camp.

When I googled this tonight, in case Meg ends up with sores (none yet), I found

that this can also be a strep virus?

>

> I'm not sure that this would matter to her treatment, or her life, if

something " causes " her to get worse, but thought I would ask if there is a

connection – and if so, does it make a difference – or do we just continue to

deal with it as we are now (therapy, which helps a lot - she is much " better "

this time around - but it is still such a huge change from a week ago).

>

> It seems odd that this came up last year in a huge way – and that it got so

much worse so quickly this year, despite all her hard work with exposure. I had

wondered if allergies at this time of year might contribute (although she shows

no signs of anything).

>

> in NC

>

[Guest guest]

> >

> > I have a question – Meg has been so much worse since her camp experience -

about 4x where she was the week before. This is exactly what happened last

year, when this all started (well, I'm not sure that is true - I can see little

things before then, but I would never have known it was anything more than mild

anxiety when tired, if the bottom had not dropped out at the end of May). Part

of me feels that this is coincidence, but I am wondering about 2 things –

> >

> > 1.Last year, her best friend had strep right after camp. I had Meg tested

for antibodies about a month later – they were not high.

> > 2.I found out today, that this year, another good friend had Impetigo at

camp. When I googled this tonight, in case Meg ends up with sores (none yet), I

found that this can also be a strep virus?

> >

> > I'm not sure that this would matter to her treatment, or her life, if

something " causes " her to get worse, but thought I would ask if there is a

connection – and if so, does it make a difference – or do we just continue to

deal with it as we are now (therapy, which helps a lot - she is much " better "

this time around - but it is still such a huge change from a week ago).

> >

> > It seems odd that this came up last year in a huge way – and that it got so

much worse so quickly this year, despite all her hard work with exposure. I had

wondered if allergies at this time of year might contribute (although she shows

no signs of anything).

> >

> > in NC

> >

>

[Guest guest]

Hi Colleen & - I read this on my blackberry today, and thank God, I was

alone for a second. I sat down on the stairs and cried. It's not so much that

I am hoping for one thing or another - but the very idea that someone could

possibly consult & help me rule Pandas in or out, so that I'd better understand

what direction to take this in. Well, it's just overwelmingly awesome. Thank

you. I have nearly given up on ever knowing this, although I have continued to

stalk the NIMH & the internet about it. I live in Charlotte area as well. Is

this where you are? If you are ever comfortable sharing a phone number, my

email is susan@.... Hopefully, Colleen will come back on-line as well,

as I am interested to see what other sites she recommends. Thanks again -

in NC

> >

> > Ok, sometimes my posts don't work. I have taken to saving them f I'd love a

referral & maybe that will lead me somewhere. And I'll take any info that you

have - everything I have read makes me feel like we are close to something, but

maybe not close enough. Thanks again - in NC

>

[Guest guest]

,

I still wonder if 's OCD might be PANDAS too.? When I talked to the new

therapist about making an appointment I mentioned it to her.? She was completely

receptive and said whenever she has a sore throat we should have it cultured and

the titers measured (still don't really get that).? When I mentioned PANDAS to

her current therapist she simply said she didn't know much about it.? I'm so

glad I've made this appointment.? Anyway, I don't have any advice just empathy

as I'm as confused as you are and am pretty much in the same boat.

Missy

Re: Pandas Mom's - need advice

Thanks to everyone for advice. These websites were helpful, I emailed the site

with questions (hopefully, I don't receive e-mail for the rest of my life!). I

think the more I read, the more I think that Meg is on the edge of this, but not

sure what to do about it - I may see if I can get her on a regular schedule of

testing for antibodies once a month, so I have a record - is that what you

recommend? Or is that over-reacting?

I think her OCD is multiplied by a dramatic effect with exposure to illness -

but that often she does not even know they are sick (not showing yet), so I

don't think it is the ick factor (we have that too, but not so dramatic). I

continue to wonder about the role that antibodies have on her brains ability to

function, and wish I could find a local doctor that shared my interest in this,

so that I could have a true medical perspective to what I read vs what she

experiences. She is rarely sick - it's like she has a super ability to resist

(or maybe it's all that darn handwashing!!! ha!) I have this feeling that in 20

years, we'll be amazed at what we have learned. In the meantime, we continue to

focus on therapy and staying positive about her abilities - and when I cannot

sleep at night, I continue to haunt the internet looking for answers. Thanks

all - I am so grateful to have this group - I think it is my sanity on some

days. I also blog about this experience - I was never one to write a letter

before all this, but I find it just pouring out lately. Good thing I have a few

outlets!!!

>

> ,

> Here is a very good starting point to help you decide if you're dealing with

PANDAS or traditional OCD or tics:

>

> http://www.webpediatrics.com/pandas.html

> It's a good diagnostic chart to help you sort out symptoms.

>

> Many are under the impression that it makes no difference whether the cause of

your child's OCD is strep or some other thing. That you still have to treat the

OCD. But the cause makes a huge difference in course of treatment.

>

> As for a negative titer last year, that carries little weight. My son had a

severe case of strep when we realized he had PANDAS - the rapid culture turned

positive in 30 seconds - and three weeks later had a negative titer result.

Titers only have meaning if you do a series of them and have numeric results,

not positive/negative.

>

> One final link to help you separate PANDAS from OCD -

> http://www.webpediatrics.com/pandasclinicalcases.html

> The stories are striking and really illustrate why the difference between

PANDAS and OCD or Tourettes is so important.

>

> If you'd like more resources, let me know.

>

>

________________________________________________________________________

Email message sent from CompuServe - visit us today at http://www.cs.com

[Guest guest]

Well, we can be clueless together! I'll post whatever I learn on the site, so

check there for updates. Maybe you can add anything new from your end. I am

very excited to have 2 names to call, so that will be my day tomorrow. Thanks

& Colleen!!! Have a great night - how is doing? in NC

>

>

> ,

>

> I still wonder if 's OCD might be PANDAS too.? When I talked to the new

therapist about making an appointment I mentioned it to her.? She was completely

receptive and said whenever she has a sore throat we should have it cultured and

the titers measured (still don't really get that).? When I mentioned PANDAS to

her current therapist she simply said she didn't know much about it.? I'm so

glad I've made this appointment.? Anyway, I don't have any advice just empathy

as I'm as confused as you are and am pretty much in the same boat.

>

> Missy

[Guest guest]

We are just going to begin ERP therapy with my daughter who is 15. I also have

this lingering doubt about whether her OCD is related to viral or bacterial

issues. But she is already 15 (almost 16) so I don't even know if they would

call it PANDAS. She also never gets sick but often (almost every day) has some

physical symptoms - headache, stomach ache, gas, itchy. I have just about given

up on this side of things as she has not had a positive throat culture or titers

and hasn't been truly " sick " in a very long time though, as I said, she always

has some physical symptoms and does not look very well.

I guess my question is, if the OCD is due to PANDAS/PITANDS, will the child

respond to ERP therapy? It would be so sad if she worked up the courage to do

this but there was something physical that needed to be addressed in order for

the therapy to work. We just recently did some homeopathic drops for viral

issues and she immediately got detox symptoms (the physical complaints got more

intense especially stomach issues). We stopped after two weeks because she

wouldn't take them anymore as they made her feel bad. But after they were done

is when she agreed to do the ERP therapy - a big change as she was adamantly

refusing before. Could the drops have helped? If so, what does that mean?

Any thoughts on this?

Sandy

[Guest guest]

There's speculation that medications for OCD aren't particularly effective for

PANDAS kids and Haldol and other meds for tics can have disastrous effects.

However, ERP can still be very effective.

The difficulty with ERP for PANDAS kids is that when they're not sick, they

don't have OCD an so there's nothing to work on. So it's hard to do ERP on

symptoms that are intermittent. But learning how to quell irrational fears is a

skill that will always come in handy, even for just us nutty mothers who worry

constantly but don't have OCD.

So by all means, pursue the ERP. It may help and certainly won't hurt. As for

your daughter's age, it is generally thought that kids outgrow it when they hit

puberty. But there is a question about whether there's an adult version. You may

want to browse Dr. Kovacovic's webpediatrics.com site for some additional info.

>

> > I guess my question is, if the OCD is due to PANDAS/PITANDS, will the child

respond to ERP therapy?

[Guest guest]

Aside from antibiotics, I do believe that the psychological/psychiatric

treatment is the same and also recommended.

Bonnie

>

> We are just going to begin ERP therapy with my daughter who is 15. I also have

this lingering doubt about whether her OCD is related to viral or bacterial

issues. But she is already 15 (almost 16) so I don't even know if they would

call it PANDAS. She also never gets sick but often (almost every day) has some

physical symptoms - headache, stomach ache, gas, itchy. I have just about given

up on this side of things as she has not had a positive throat culture or titers

and hasn't been truly " sick " in a very long time though, as I said, she always

has some physical symptoms and does not look very well.

>

> I guess my question is, if the OCD is due to PANDAS/PITANDS, will the child

respond to ERP therapy? It would be so sad if she worked up the courage to do

this but there was something physical that needed to be addressed in order for

the therapy to work. We just recently did some homeopathic drops for viral

issues and she immediately got detox symptoms (the physical complaints got more

intense especially stomach issues). We stopped after two weeks because she

wouldn't take them anymore as they made her feel bad. But after they were done

is when she agreed to do the ERP therapy - a big change as she was adamantly

refusing before. Could the drops have helped? If so, what does that mean?

>

> Any thoughts on this?

>

> Sandy

>

[Guest guest]

's symptoms wax and wane like this. Sometimes I wonder however, if he

really is having intrusive thoughts, but they aren't affecting him as severely

at times? It's so strange he is normal and then not.

Bonnie

> >

>

> > > I guess my question is, if the OCD is due to PANDAS/PITANDS, will the

child respond to ERP therapy?

>

[Guest guest]

> > >

> > > in NC-

> > > I wanted to comment on the impetigo. Impetigo is a strep infection on the

skin and can trigger a PANDAS reaction exactly the same way a strep throat

infection triggers it. You described two incidences when your daughter's

behaviors escalated after being exposed to strep which is very suspiciuous of

PANDAS. As far as the antibody titer levels- titers can be perfectly normal in

the midst of a strep infection. There is a lot of misinformation where this is

concerned. You DO NOT need elevated titers to have PANDAS and if a physician

claims that you do, he/she is completely wrong.Unfortunately b/c some physicians

are practicing under this false assumption, children are being misdiagnosed.

Many PANDAS children will have normal titers during a PANDAS episode, even WITH

a poasitive culture. I would suggest having a 72 hour throat culture done ASAP.

Good luck. If you want more info, let me know.

> > > Colleen

>

[Guest guest]

Ok, going there next - thank you. Ah -gotcha on the 72 hours - so much to

learn! Had good conversation with therapist today, who also felt that testing

would be wise - felt 50/50 on liklihood, as she is not as dramatic a

presentation as her other Pandas patients (she has 6). Suggested strongly that

EPR should be part of treatment either way, so at least I feel good that we are

part way there. she also warned that most pdocs don't " believe " in PANDAS.

in NC

> > > >

> > > > in NC-

> > > > I wanted to comment on the impetigo. Impetigo is a strep infection on

the skin and can trigger a PANDAS reaction exactly the same way a strep throat

infection triggers it. You described two incidences when your daughter's

behaviors escalated after being exposed to strep which is very suspiciuous of

PANDAS. As far as the antibody titer levels- titers can be perfectly normal in

the midst of a strep infection. There is a lot of misinformation where this is

concerned. You DO NOT need elevated titers to have PANDAS and if a physician

claims that you do, he/she is completely wrong.Unfortunately b/c some physicians

are practicing under this false assumption, children are being misdiagnosed.

Many PANDAS children will have normal titers during a PANDAS episode, even WITH

a poasitive culture. I would suggest having a 72 hour throat culture done ASAP.

Good luck. If you want more info, let me know.

> > > > Colleen

> >

>

[Guest guest]

Hi Sandy - ok, finally back on computer! Long day - we have a 5 hour comute to

therapy. Ugh, but worth it. Asked our therapist (who is also research dr) about

this very question. She said that ERP is also critical for Pandas kids, as they

need to be able to handle episodes as they arise & these tools are helpful if

they get strep again. From our own experience (OCD at 3, 6.8 and 7.7), this

seem accurate. I don't know if she has Pandas or not, but I do know that the

EPR is getting slightly easier each time, despite the presentation being more

intense initially. She is learning, even though there is no opportunity to

practice between times. I guess I'd like it to bike riding or piano playing -

at first, it's wierd, and then the skills come back. So not ideal maybe, but it

is easier. I also find that whatever this is, that we are writing out own

personal narrative for Meg - and that she is owning that story - that she is a

powerful kid that can overcome a lot - more than many adults! Today was a tough

therapy session, but I loved that as Meg listed what went well, she used the

language " I conquered " for the many things that she had defeated in the last

week. Still an amazing amount to go, but she was very proud.

On another interesting note - or at least I thought so - she also talked to us

about the importance of on-going detective work. That the idea is to find every

little thing that OCD has taken over, and try to boss it back. She mentioned

this because Meg was afraid to stay in a hotel (tonight it is necessary) if it

is only for one night - an OCD worry that could easily have been missed!

Anyway, then at dinner, Meg says " Mom, I think you need to know something. For

a long time now, I can't make a regular small " g " anymore. I can do a cursive

one, but not a regular. " Wow, for months I have noticed that she puts a

cursive g in the middle of her name, but just thought she was delighed with the

only letter of the alphabet that she can do in cursive! I told a good friend

about this tonight, and we got the gigggles over the " g " . We joked that no

wonder it's so hard to explain to other people, the seriousness of this disease!

Sometimes, laughter saves my day (but not in front of Meg!) Anyway, now I am

wondering what else in wandering around in this little world of ours! Best -

in NC

>

> We are just going to begin ERP therapy with my daughter who is 15. I also have

this lingering doubt about whether her OCD is related to viral or bacterial

issues. But she is already 15 (almost 16) so I don't even know if they would

call it PANDAS. She also never gets sick but often (almost every day) has some

physical symptoms - headache, stomach ache, gas, itchy. I have just about given

up on this side of things as she has not had a positive throat culture or titers

and hasn't been truly " sick " in a very long time though, as I said, she always

has some physical symptoms and does not look very well.

>

> I guess my question is, if the OCD is due to PANDAS/PITANDS, will the child

respond to ERP therapy? It would be so sad if she worked up the courage to do

this but there was something physical that needed to be addressed in order for

the therapy to work. We just recently did some homeopathic drops for viral

issues and she immediately got detox symptoms (the physical complaints got more

intense especially stomach issues). We stopped after two weeks because she

wouldn't take them anymore as they made her feel bad. But after they were done

is when she agreed to do the ERP therapy - a big change as she was adamantly

refusing before. Could the drops have helped? If so, what does that mean?

>

> Any thoughts on this?

>

> Sandy

>

[Guest guest]

*******

Anyway, now I am wondering what else in wandering around in this little world of

ours!

*******

Isn't it amazing what our OCD kids come up with to worry about? We went out for

lunch today and Kate wanted more milk but she wouldn't get any . . . because? .

.. . that would be one more plastic container in the land fill! I told her we

could take the containers home and recycle them and she decided she'd have more

milk.

Beth

[Guest guest]

Oh! We have the waste ones too! So much for the poor kids in Africa, we have

to deliberately waste stuff sometimes. She has to just try to Just throw it

out! (I have to pretend that it does not bother me!) I think this is a little

piece of " hoarding " , that I understand is pretty common. I swear, our kids are

twins! in NC

>

> *******

> Anyway, now I am wondering what else in wandering around in this little world

of ours!

> *******

>

> Isn't it amazing what our OCD kids come up with to worry about? We went out

for lunch today and Kate wanted more milk but she wouldn't get any . . .

because? . . . that would be one more plastic container in the land fill! I

told her we could take the containers home and recycle them and she decided

she'd have more milk.

>

> Beth

>

>

>

[Guest guest]

Thanks so much for that. I am now thinking that does not have PANDAS as

her OCD, though it gets better and worse, has not really gone away for a few

years. She is starting therapy on Friday - hopefully it will work as well for

her as it does for your daughter. She is very resistant (probably because she is

so afraid - she thinks the OCD will " punish " her for addressing it) so I am

unsure how this will go.

Sandy

> >

> > We are just going to begin ERP therapy with my daughter who is 15. I also

have this lingering doubt about whether her OCD is related to viral or bacterial

issues. But she is already 15 (almost 16) so I don't even know if they would

call it PANDAS. She also never gets sick but often (almost every day) has some

physical symptoms - headache, stomach ache, gas, itchy. I have just about given

up on this side of things as she has not had a positive throat culture or titers

and hasn't been truly " sick " in a very long time though, as I said, she always

has some physical symptoms and does not look very well.

> >

> > I guess my question is, if the OCD is due to PANDAS/PITANDS, will the child

respond to ERP therapy? It would be so sad if she worked up the courage to do

this but there was something physical that needed to be addressed in order for

the therapy to work. We just recently did some homeopathic drops for viral

issues and she immediately got detox symptoms (the physical complaints got more

intense especially stomach issues). We stopped after two weeks because she

wouldn't take them anymore as they made her feel bad. But after they were done

is when she agreed to do the ERP therapy - a big change as she was adamantly

refusing before. Could the drops have helped? If so, what does that mean?

> >

> > Any thoughts on this?

> >

> > Sandy

> >

>

[Guest guest]

Hi Sandy - just an unrelated question, as I am noticing your notes about gas,

etc - have you had her tested for allergies? I am thinking wheat/celiac in

particular?

I'll have my fingers crossed on Friday - it feels really slow at first, so don't

be discouraged. Also, it is very common to have an OCD burst at first, so she

may need to be prepared for that by the therapist, especially given her fears.

in NC

[Guest guest]

Hi ,

's problems all actually started with stomach problems. She is now gluten

free and casein free. The gluten free diet did correct some major stomach pain

almost immediately. I have been reluctant to take away more foods though when we

see our doc for a physical, I may ask her to do an allergy blood test. We have

also done enzymes and probiotics for a long time. I think when we did these

homeopathic drops, they started some sort of detox and the stomach stuff started

up again. As I understand it, when heavy metals are released and excreted, as

they go through the gut, they can mess up the balance of flora and fauna so

maybe that happened with the drops. We have done a lot of biomedical supplements

and are taking somewhat of a break because her OCD got so bad. We are going to

try the ERP so that she can learn how to function with the OCD. I will probably

continue to try to address the biomedical issues later as she does have other

problems - primarily sensory processing disorder and possibly aspergers. But,

for now, we are hoping the ERP can give her some relief.

Sandy

>

> Hi Sandy - just an unrelated question, as I am noticing your notes about gas,

etc - have you had her tested for allergies? I am thinking wheat/celiac in

particular?

>

> I'll have my fingers crossed on Friday - it feels really slow at first, so

don't be discouraged. Also, it is very common to have an OCD burst at first, so

she may need to be prepared for that by the therapist, especially given her

fears.

>

> in NC

>