Re: Doctor's comments on PANDAS

[Guest guest]

I don't really understand this statement about CBT alone being equal to meds

and CBT, but that combined treatment may seem like the best approach. It seems

contradictory to me. Can anyone explain what the doc meant? Thank you. Kim

In a message dated 8/12/2006 6:59:01 PM Central Standard Time,

pba1221d@... writes:

In children CBT alone may be enough to bring

about remission and in general the evidence supports the idea that

combined treatment is usually about equal to CBT alone although in

many cases a combined treatment will seem like the best choice.

[Guest guest]

thank you - I don't think she really fit the other things - so.we'll

see!!!!!!!! -I'll look in Dr Chansky's book again - thanks

Eileen

Quoting Dana <pba1221d@...>:

> ***I had asked the doctors on another group site what is the

> difference between PANDAS OCD and other OCD. Also I asked him if

> there was a feel for one SSRI being better than another when

> treating OCD> Here is the answer that he gave me***

>

> *******************************************************************

>

> The difference between PANDAS associated OCD and most OCD is that we

> think we know what causes it for PANDAS. There is a tendency for the

> symptoms to come on suddenly and or worsen dramatically in a short

> time.

>

> Acute treatment with antibiotics may lead to remission or rapid

> improvement. Once the OCD is established however there is no evidence

> that I am aware of that it will respond any differently to treatment.

>

> In the case of established OCD the proven treatments are SRI

> medications and CBT. In children CBT alone may be enough to bring

> about remission and in general the evidence supports the idea that

> combined treatment is usually about equal to CBT alone although in

> many cases a combined treatment will seem like the best choice.

>

> There is no one drug that has been shown to be better than any other

> so a trial and error approach is needed. Usually reasonably high

> dosages of medications are needed over an extended period of time to

> really know how well it is going to work.

>

>

>

>

>

>

[Guest guest]

Our son fit the Pandas symptoms pretty much head on, but he had no sign of strep

in his blood. He did have an initial slight positive for strep on the swipe

test. He took the antibiotic and then the blood test. The doctor said he had

never had strep, and did not have Pandas, but regular OCD. We still feel it is

Pandas, because of the exact match of symptoms, sudden onset, other symptoms,

and then gradual improvement. Can you get negative strep and still have Pandas?

J

Doctor's comments on PANDAS

***I had asked the doctors on another group site what is the

difference between PANDAS OCD and other OCD. Also I asked him if

there was a feel for one SSRI being better than another when

treating OCD> Here is the answer that he gave me***

*******************************************************************

The difference between PANDAS associated OCD and most OCD is that we

think we know what causes it for PANDAS. There is a tendency for the

symptoms to come on suddenly and or worsen dramatically in a short

time.

Acute treatment with antibiotics may lead to remission or rapid

improvement. Once the OCD is established however there is no evidence

that I am aware of that it will respond any differently to treatment.

In the case of established OCD the proven treatments are SRI

medications and CBT. In children CBT alone may be enough to bring

about remission and in general the evidence supports the idea that

combined treatment is usually about equal to CBT alone although in

many cases a combined treatment will seem like the best choice.

There is no one drug that has been shown to be better than any other

so a trial and error approach is needed. Usually reasonably high

dosages of medications are needed over an extended period of time to

really know how well it is going to work.

[Guest guest]

yes as dana mentioned the could have just been in contact and not

ever have gotten it -a carrier more or less - my dd throat is always

fine but could be strep somewhere else just as we moms get tested

vaginally bedfore giving birth etc?? more confusion!! sorry

Eileen

Quoting <lauraj2@...>:

> Our son fit the Pandas symptoms pretty much head on, but he had no

> sign of strep in his blood. He did have an initial slight positive

> for strep on the swipe test. He took the antibiotic and then the

> blood test. The doctor said he had never had strep, and did not have

> Pandas, but regular OCD. We still feel it is Pandas, because of the

> exact match of symptoms, sudden onset, other symptoms, and then

> gradual improvement. Can you get negative strep and still have

> Pandas?

> J

> Doctor's comments on PANDAS

>

>

> ***I had asked the doctors on another group site what is the

> difference between PANDAS OCD and other OCD. Also I asked him if

> there was a feel for one SSRI being better than another when

> treating OCD> Here is the answer that he gave me***

>

> *******************************************************************

>

> The difference between PANDAS associated OCD and most OCD is that we

> think we know what causes it for PANDAS. There is a tendency for the

> symptoms to come on suddenly and or worsen dramatically in a short

> time.

>

> Acute treatment with antibiotics may lead to remission or rapid

> improvement. Once the OCD is established however there is no evidence

> that I am aware of that it will respond any differently to treatment.

>

> In the case of established OCD the proven treatments are SRI

> medications and CBT. In children CBT alone may be enough to bring

> about remission and in general the evidence supports the idea that

> combined treatment is usually about equal to CBT alone although in

> many cases a combined treatment will seem like the best choice.

>

> There is no one drug that has been shown to be better than any other

> so a trial and error approach is needed. Usually reasonably high

> dosages of medications are needed over an extended period of time to

> really know how well it is going to work.

>

>

>

>

>

>

[Guest guest]

From what I have read, studies show that CBT alone and CBT with meds

have about the same overall results in treating OCD (both giving

better long-term results than meds alone), but in some cases where

anxiety is too high to do CBT alone and/or the patient is unwilling

to attempt CBT/ERP, meds and CBT may be the best choice for that

patient.

>

> I don't really understand this statement about CBT alone being

equal to meds

> and CBT, but that combined treatment may seem like the best

approach. It seems

> contradictory to me. Can anyone explain what the doc meant? Thank

you. Kim

>

> In a message dated 8/12/2006 6:59:01 PM Central Standard Time,

> pba1221d@... writes:

> In children CBT alone may be enough to bring

> about remission and in general the evidence supports the idea that

> combined treatment is usually about equal to CBT alone although in

> many cases a combined treatment will seem like the best choice.

>

>

>

[Guest guest]

Hi ,

When our daughter first had OCD symptoms, we felt strongly that it was Pandas.

She never did test positive for strep, although she first became sick after

having the flu. She had two blood test before the third one (two and a half

months later) showed very elevated strep titers. So I guess in our daughter's

case, yes her doctor believes she has PANDAS but she's never tested positive for

strep only elevated titers. (or even increasing titers) Take care, nne

<lauraj2@...> wrote:

Our son fit the Pandas symptoms pretty much head on, but he had no

sign of strep in his blood. He did have an initial slight positive for strep on

the swipe test. He took the antibiotic and then the blood test. The doctor said

he had never had strep, and did not have Pandas, but regular OCD. We still feel

it is Pandas, because of the exact match of symptoms, sudden onset, other

symptoms, and then gradual improvement. Can you get negative strep and still

have Pandas?

J

Doctor's comments on PANDAS

***I had asked the doctors on another group site what is the

difference between PANDAS OCD and other OCD. Also I asked him if

there was a feel for one SSRI being better than another when

treating OCD> Here is the answer that he gave me***

*******************************************************************

The difference between PANDAS associated OCD and most OCD is that we

think we know what causes it for PANDAS. There is a tendency for the

symptoms to come on suddenly and or worsen dramatically in a short

time.

Acute treatment with antibiotics may lead to remission or rapid

improvement. Once the OCD is established however there is no evidence

that I am aware of that it will respond any differently to treatment.

In the case of established OCD the proven treatments are SRI

medications and CBT. In children CBT alone may be enough to bring

about remission and in general the evidence supports the idea that

combined treatment is usually about equal to CBT alone although in

many cases a combined treatment will seem like the best choice.

There is no one drug that has been shown to be better than any other

so a trial and error approach is needed. Usually reasonably high

dosages of medications are needed over an extended period of time to

really know how well it is going to work.

[Guest guest]

marianne did antibiotics ever reduce ocd symptoms?

eileen

Quoting nne N <luv_yoga_2@...>:

> Hi ,

>

> When our daughter first had OCD symptoms, we felt strongly that it

> was Pandas. She never did test positive for strep, although she

> first became sick after having the flu. She had two blood test

> before the third one (two and a half months later) showed very

> elevated strep titers. So I guess in our daughter's case, yes her

> doctor believes she has PANDAS but she's never tested positive for

> strep only elevated titers. (or even increasing titers) Take care,

> nne

>

> <lauraj2@...> wrote:

> Our son fit the Pandas symptoms pretty much head on, but he

> had no sign of strep in his blood. He did have an initial slight

> positive for strep on the swipe test. He took the antibiotic and then

> the blood test. The doctor said he had never had strep, and did not

> have Pandas, but regular OCD. We still feel it is Pandas, because of

> the exact match of symptoms, sudden onset, other symptoms, and then

> gradual improvement. Can you get negative strep and still have Pandas?

> J

> Doctor's comments on PANDAS

>

> ***I had asked the doctors on another group site what is the

> difference between PANDAS OCD and other OCD. Also I asked him if

> there was a feel for one SSRI being better than another when

> treating OCD> Here is the answer that he gave me***

>

> *******************************************************************

>

> The difference between PANDAS associated OCD and most OCD is that we

> think we know what causes it for PANDAS. There is a tendency for the

> symptoms to come on suddenly and or worsen dramatically in a short

> time.

>

> Acute treatment with antibiotics may lead to remission or rapid

> improvement. Once the OCD is established however there is no evidence

> that I am aware of that it will respond any differently to treatment.

>

> In the case of established OCD the proven treatments are SRI

> medications and CBT. In children CBT alone may be enough to bring

> about remission and in general the evidence supports the idea that

> combined treatment is usually about equal to CBT alone although in

> many cases a combined treatment will seem like the best choice.

>

> There is no one drug that has been shown to be better than any other

> so a trial and error approach is needed. Usually reasonably high

> dosages of medications are needed over an extended period of time to

> really know how well it is going to work.

>

>

[Guest guest]

Eileen,

I was strep B positive during my pregnancy with my dd

with OCD. I did receive IV antibiotics during labor

which were supposed to protect her. I also however

received multiple medications during pregnancy for

premature labor. I wonder if pregnancy complications

increase your chances of OCD, esp when strep B is

involved. I know too that my dd says her symptoms

started in K although we didn't really realize there

were big problems until 2nd grade. I remember her

having a horrible case of strep in the beginning of K

with a high fever. If you have PANDAS, does it go away

after the strep goes away?

Darletta

--- " autumn71A@... "

<autumn71A@...> wrote:

> yes as dana mentioned the could have just been

> in contact and not

> ever have gotten it -a carrier more or less - my dd

> throat is always

> fine but could be strep somewhere else just as we

> moms get tested

> vaginally bedfore giving birth etc?? more

> confusion!! sorry

> Eileen

>

>

>

> Quoting <lauraj2@...>:

>

> > Our son fit the Pandas symptoms pretty much head

> on, but he had no

> > sign of strep in his blood. He did have an initial

> slight positive

> > for strep on the swipe test. He took the

> antibiotic and then the

> > blood test. The doctor said he had never had

> strep, and did not have

> > Pandas, but regular OCD. We still feel it is

> Pandas, because of the

> > exact match of symptoms, sudden onset, other

> symptoms, and then

> > gradual improvement. Can you get negative strep

> and still have

> > Pandas?

> > J

> > Doctor's comments on

> PANDAS

> >

> >

> > ***I had asked the doctors on another group site

> what is the

> > difference between PANDAS OCD and other OCD. Also

> I asked him if

> > there was a feel for one SSRI being better than

> another when

> > treating OCD> Here is the answer that he gave

> me***

> >

> >

>

*******************************************************************

> >

> > The difference between PANDAS associated OCD and

> most OCD is that we

> > think we know what causes it for PANDAS. There is

> a tendency for the

> > symptoms to come on suddenly and or worsen

> dramatically in a short

> > time.

> >

> > Acute treatment with antibiotics may lead to

> remission or rapid

> > improvement. Once the OCD is established however

> there is no evidence

> > that I am aware of that it will respond any

> differently to treatment.

> >

> > In the case of established OCD the proven

> treatments are SRI

> > medications and CBT. In children CBT alone may be

> enough to bring

> > about remission and in general the evidence

> supports the idea that

> > combined treatment is usually about equal to CBT

> alone although in

> > many cases a combined treatment will seem like

> the best choice.

> >

> > There is no one drug that has been shown to be

> better than any other

> > so a trial and error approach is needed. Usually

> reasonably high

> > dosages of medications are needed over an

> extended period of time to

> > really know how well it is going to work.

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

>

>

>

>

__________________________________________________

[Guest guest]

Hi Eileen,

Yes, I believe the antibiotics did help ...She took anitibiotics for 1 month

after being diagnosed. After the third week on antibiotics, she wasn't having

as many obsessive thoughts and she was more like her old self. She also

experienced those PANDAS characteristics like poor handwriting, age regression,

and difficulty with math - those problems seemed to just vanish after that first

month. We still battled OCD with CBT/Exposure for several more months,

although the symptoms gradually lessened.

On the doctor's advice, she took a low dose antibiotic throughout the school

year. She has virtually been symptom free for the last 7 months.

all the best, nne

" autumn71A@... " <autumn71A@...> wrote:

marianne did antibiotics ever reduce ocd symptoms?

eileen

Quoting nne N <luv_yoga_2@...>:

> Hi ,

>

> When our daughter first had OCD symptoms, we felt strongly that it

> was Pandas. She never did test positive for strep, although she

> first became sick after having the flu. She had two blood test

> before the third one (two and a half months later) showed very

> elevated strep titers. So I guess in our daughter's case, yes her

> doctor believes she has PANDAS but she's never tested positive for

> strep only elevated titers. (or even increasing titers) Take care,

> nne

>

> <lauraj2@...> wrote:

> Our son fit the Pandas symptoms pretty much head on, but he

> had no sign of strep in his blood. He did have an initial slight

> positive for strep on the swipe test. He took the antibiotic and then

> the blood test. The doctor said he had never had strep, and did not

> have Pandas, but regular OCD. We still feel it is Pandas, because of

> the exact match of symptoms, sudden onset, other symptoms, and then

> gradual improvement. Can you get negative strep and still have Pandas?

> J

> Doctor's comments on PANDAS

>

> ***I had asked the doctors on another group site what is the

> difference between PANDAS OCD and other OCD. Also I asked him if

> there was a feel for one SSRI being better than another when

> treating OCD> Here is the answer that he gave me***

>

> *******************************************************************

>

> The difference between PANDAS associated OCD and most OCD is that we

> think we know what causes it for PANDAS. There is a tendency for the

> symptoms to come on suddenly and or worsen dramatically in a short

> time.

>

> Acute treatment with antibiotics may lead to remission or rapid

> improvement. Once the OCD is established however there is no evidence

> that I am aware of that it will respond any differently to treatment.

>

> In the case of established OCD the proven treatments are SRI

> medications and CBT. In children CBT alone may be enough to bring

> about remission and in general the evidence supports the idea that

> combined treatment is usually about equal to CBT alone although in

> many cases a combined treatment will seem like the best choice.

>

> There is no one drug that has been shown to be better than any other

> so a trial and error approach is needed. Usually reasonably high

> dosages of medications are needed over an extended period of time to

> really know how well it is going to work.

>

>

[Guest guest]

Darletta, when I was pg with my OCD dd, I was on LOTS of different meds and

often wonder if they had any effects on her. I had horrible hyperemesis (severe

nausea and vomitting) and was on many different meds for that most of the

pregnancy. I also had preterm labor and was on meds for that. I was in and out

of the hospital for both things several times and on more meds there.

Everything was supposed to be safe for her, but I have to wonder.

Sharon

Doctor's comments on

> PANDAS

> >

> >

> > ***I had asked the doctors on another group site

> what is the

> > difference between PANDAS OCD and other OCD. Also

> I asked him if

> > there was a feel for one SSRI being better than

> another when

> > treating OCD> Here is the answer that he gave

> me***

> >

> >

>

*******************************************************************

> >

> > The difference between PANDAS associated OCD and

> most OCD is that we

> > think we know what causes it for PANDAS. There is

> a tendency for the

> > symptoms to come on suddenly and or worsen

> dramatically in a short

> > time.

> >

> > Acute treatment with antibiotics may lead to

> remission or rapid

> > improvement. Once the OCD is established however

> there is no evidence

> > that I am aware of that it will respond any

> differently to treatment.

> >

> > In the case of established OCD the proven

> treatments are SRI

> > medications and CBT. In children CBT alone may be

> enough to bring

> > about remission and in general the evidence

> supports the idea that

> > combined treatment is usually about equal to CBT

> alone although in

> > many cases a combined treatment will seem like

> the best choice.

> >

> > There is no one drug that has been shown to be

> better than any other

> > so a trial and error approach is needed. Usually

> reasonably high

> > dosages of medications are needed over an

> extended period of time to

> > really know how well it is going to work.

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

> >

>

>

>

>

__________________________________________________

[Guest guest]

thanks nne - I may do the one month thing - I did start exposure

here today though because it was just sneaking in, in too many places

- dd doesn't have those other issues you mentioned - do you think

she's PANDAS - she has bad handwriting but so do dh and I and that was

always - did your dd's get worse after the diagnosis

Eileen

??Quoting nne N <luv_yoga_2@...>:

> Hi Eileen,

>

> Yes, I believe the antibiotics did help ...She took anitibiotics for

> 1 month after being diagnosed. After the third week on antibiotics,

> she wasn't having as many obsessive thoughts and she was more like

> her old self. She also experienced those PANDAS characteristics like

> poor handwriting, age regression, and difficulty with math - those

> problems seemed to just vanish after that first month. We still

> battled OCD with CBT/Exposure for several more months, although the

> symptoms gradually lessened.

>

> On the doctor's advice, she took a low dose antibiotic throughout

> the school year. She has virtually been symptom free for the last 7

> months.

>

> all the best, nne

>

>

>

> " autumn71A@... " <autumn71A@...> wrote:

> marianne did antibiotics ever reduce ocd symptoms?

> eileen

>

> Quoting nne N <luv_yoga_2@...>:

>

>> Hi ,

>>

>> When our daughter first had OCD symptoms, we felt strongly that it

>> was Pandas. She never did test positive for strep, although she

>> first became sick after having the flu. She had two blood test

>> before the third one (two and a half months later) showed very

>> elevated strep titers. So I guess in our daughter's case, yes her

>> doctor believes she has PANDAS but she's never tested positive for

>> strep only elevated titers. (or even increasing titers) Take care,

>> nne

>>

>> <lauraj2@...> wrote:

>> Our son fit the Pandas symptoms pretty much head on, but he

>> had no sign of strep in his blood. He did have an initial slight

>> positive for strep on the swipe test. He took the antibiotic and then

>> the blood test. The doctor said he had never had strep, and did not

>> have Pandas, but regular OCD. We still feel it is Pandas, because of

>> the exact match of symptoms, sudden onset, other symptoms, and then

>> gradual improvement. Can you get negative strep and still have Pandas?

>> J

>> Doctor's comments on PANDAS

>>

>> ***I had asked the doctors on another group site what is the

>> difference between PANDAS OCD and other OCD. Also I asked him if

>> there was a feel for one SSRI being better than another when

>> treating OCD> Here is the answer that he gave me***

>>

>> *******************************************************************

>>

>> The difference between PANDAS associated OCD and most OCD is that we

>> think we know what causes it for PANDAS. There is a tendency for the

>> symptoms to come on suddenly and or worsen dramatically in a short

>> time.

>>

>> Acute treatment with antibiotics may lead to remission or rapid

>> improvement. Once the OCD is established however there is no evidence

>> that I am aware of that it will respond any differently to treatment.

>>

>> In the case of established OCD the proven treatments are SRI

>> medications and CBT. In children CBT alone may be enough to bring

>> about remission and in general the evidence supports the idea that

>> combined treatment is usually about equal to CBT alone although in

>> many cases a combined treatment will seem like the best choice.

>>

>> There is no one drug that has been shown to be better than any other

>> so a trial and error approach is needed. Usually reasonably high

>> dosages of medications are needed over an extended period of time to

>> really know how well it is going to work.

>>

>>

[Guest guest]

I'm no expert but what I've read and heard that whether it's OCD or

PANDAS OCD the treatment is the same minus the antibiotic issue - hope

that helps??? Eileen

I'm sure she was protected by the antibiotic in labor -at least that's

why they do that anyhow

thanks Eileen

Quoting Darletta Jaycox <darlettaj@...>:

> Eileen,

> I was strep B positive during my pregnancy with my dd

> with OCD. I did receive IV antibiotics during labor

> which were supposed to protect her. I also however

> received multiple medications during pregnancy for

> premature labor. I wonder if pregnancy complications

> increase your chances of OCD, esp when strep B is

> involved. I know too that my dd says her symptoms

> started in K although we didn't really realize there

> were big problems until 2nd grade. I remember her

> having a horrible case of strep in the beginning of K

> with a high fever. If you have PANDAS, does it go away

> after the strep goes away?

> Darletta

>

> --- " autumn71A@... "

> <autumn71A@...> wrote:

>

>> yes as dana mentioned the could have just been

>> in contact and not

>> ever have gotten it -a carrier more or less - my dd

>> throat is always

>> fine but could be strep somewhere else just as we

>> moms get tested

>> vaginally bedfore giving birth etc?? more

>> confusion!! sorry

>> Eileen

>>

>>

>>

>> Quoting <lauraj2@...>:

>>

>> > Our son fit the Pandas symptoms pretty much head

>> on, but he had no

>> > sign of strep in his blood. He did have an initial

>> slight positive

>> > for strep on the swipe test. He took the

>> antibiotic and then the

>> > blood test. The doctor said he had never had

>> strep, and did not have

>> > Pandas, but regular OCD. We still feel it is

>> Pandas, because of the

>> > exact match of symptoms, sudden onset, other

>> symptoms, and then

>> > gradual improvement. Can you get negative strep

>> and still have

>> > Pandas?

>> > J

>> > Doctor's comments on

>> PANDAS

>> >

>> >

>> > ***I had asked the doctors on another group site

>> what is the

>> > difference between PANDAS OCD and other OCD. Also

>> I asked him if

>> > there was a feel for one SSRI being better than

>> another when

>> > treating OCD> Here is the answer that he gave

>> me***

>> >

>> >

>>

> *******************************************************************

>> >

>> > The difference between PANDAS associated OCD and

>> most OCD is that we

>> > think we know what causes it for PANDAS. There is

>> a tendency for the

>> > symptoms to come on suddenly and or worsen

>> dramatically in a short

>> > time.

>> >

>> > Acute treatment with antibiotics may lead to

>> remission or rapid

>> > improvement. Once the OCD is established however

>> there is no evidence

>> > that I am aware of that it will respond any

>> differently to treatment.

>> >

>> > In the case of established OCD the proven

>> treatments are SRI

>> > medications and CBT. In children CBT alone may be

>> enough to bring

>> > about remission and in general the evidence

>> supports the idea that

>> > combined treatment is usually about equal to CBT

>> alone although in

>> > many cases a combined treatment will seem like

>> the best choice.

>> >

>> > There is no one drug that has been shown to be

>> better than any other

>> > so a trial and error approach is needed. Usually

>> reasonably high

>> > dosages of medications are needed over an

>> extended period of time to

>> > really know how well it is going to work.

>> >

>> >

>> >

>> >

>> >

>> > [Non-text portions of this message have been

>> removed]

>> >

>> >

>>

>>

>>

>>

>

>

> __________________________________________________

>

[Guest guest]

Eileen,

The only way we got the PANDAS diagnosis was my daughter's increasing strep

titers. We were suspect because she had all the symptoms. We had to keep

pushing the doctor for blood tests, because they wouldn't give her the

antibiotics even though she had the classic PANDAS symptoms. As for her

handwriting, when she was very ill, it was almost illegible. Even she would

say, " I don't know what wrong...I can't even write " You can see the difference

in her school books.

When she first started therapy and exposure, the psychologist limited the

exposure to one fear or worry at a time. Gradually we started to work on a

couple a week.

Yes, her symptoms got worse before they got better. Where we live in Canada,

there are no child psychiatrists. We had to wait 2 months before she could be

diagnosed in the US. By that time, her symptoms were severe, and she was unable

to go to school.

With therapy, time and the antibiotics she has greatly improved. It's been 7

months without one worry. We have our fingers crossed.

All I can say is you know your daughter better than anyone else. If you

believe it's PANDAs then it may not have shown up in her bloodwork just yet.

wishing you well, nne

I also remember reading something about PITANDS - OCD not caused by strep but

other viruses. If you'd like I can try and find my information.

" autumn71A@... " <autumn71A@...> wrote:

thanks nne - I may do the one month thing - I did start exposure

here today though because it was just sneaking in, in too many places

- dd doesn't have those other issues you mentioned - do you think

she's PANDAS - she has bad handwriting but so do dh and I and that was

always - did your dd's get worse after the diagnosis

Eileen

??Quoting nne N <luv_yoga_2@...>:

> Hi Eileen,

>

> Yes, I believe the antibiotics did help ...She took anitibiotics for

> 1 month after being diagnosed. After the third week on antibiotics,

> she wasn't having as many obsessive thoughts and she was more like

> her old self. She also experienced those PANDAS characteristics like

> poor handwriting, age regression, and difficulty with math - those

> problems seemed to just vanish after that first month. We still

> battled OCD with CBT/Exposure for several more months, although the

> symptoms gradually lessened.

>

> On the doctor's advice, she took a low dose antibiotic throughout

> the school year. She has virtually been symptom free for the last 7

> months.

>

> all the best, nne

>

>

>

> " autumn71A@... " <autumn71A@...> wrote:

> marianne did antibiotics ever reduce ocd symptoms?

> eileen

>

> Quoting nne N <luv_yoga_2@...>:

>

>> Hi ,

>>

>> When our daughter first had OCD symptoms, we felt strongly that it

>> was Pandas. She never did test positive for strep, although she

>> first became sick after having the flu. She had two blood test

>> before the third one (two and a half months later) showed very

>> elevated strep titers. So I guess in our daughter's case, yes her

>> doctor believes she has PANDAS but she's never tested positive for

>> strep only elevated titers. (or even increasing titers) Take care,

>> nne

>>

>> <lauraj2@...> wrote:

>> Our son fit the Pandas symptoms pretty much head on, but he

>> had no sign of strep in his blood. He did have an initial slight

>> positive for strep on the swipe test. He took the antibiotic and then

>> the blood test. The doctor said he had never had strep, and did not

>> have Pandas, but regular OCD. We still feel it is Pandas, because of

>> the exact match of symptoms, sudden onset, other symptoms, and then

>> gradual improvement. Can you get negative strep and still have Pandas?

>> J

>> Doctor's comments on PANDAS

>>

>> ***I had asked the doctors on another group site what is the

>> difference between PANDAS OCD and other OCD. Also I asked him if

>> there was a feel for one SSRI being better than another when

>> treating OCD> Here is the answer that he gave me***

>>

>> *******************************************************************

>>

>> The difference between PANDAS associated OCD and most OCD is that we

>> think we know what causes it for PANDAS. There is a tendency for the

>> symptoms to come on suddenly and or worsen dramatically in a short

>> time.

>>

>> Acute treatment with antibiotics may lead to remission or rapid

>> improvement. Once the OCD is established however there is no evidence

>> that I am aware of that it will respond any differently to treatment.

>>

>> In the case of established OCD the proven treatments are SRI

>> medications and CBT. In children CBT alone may be enough to bring

>> about remission and in general the evidence supports the idea that

>> combined treatment is usually about equal to CBT alone although in

>> many cases a combined treatment will seem like the best choice.

>>

>> There is no one drug that has been shown to be better than any other

>> so a trial and error approach is needed. Usually reasonably high

>> dosages of medications are needed over an extended period of time to

>> really know how well it is going to work.

>>

>>

[Guest guest]

thanks marianne - I'm actually a bit confused - your dd had the

symptoms but they wouldn't call it PANDAS without high titers??? - all

my dd's bloodwork shows are high titers - but not really any of those

other symptoms seem true - maybe sudden onset - but looking back ,It

may have been there and wasn't being noticed by me yet? - hard to tell

- didn't I read some people just have high titers no problems??? - I'll

hold off on the other virus info for now - knock wood she's healthy as

a horse that's why the high titers almost made sense that maybe she's

exposed to stuff but always fighting it off due to high titers??? -

does anyone know if that's true?

Eileen

Quoting nne N <luv_yoga_2@...>:

> Eileen,

>

> The only way we got the PANDAS diagnosis was my daughter's

> increasing strep titers. We were suspect because she had all the

> symptoms. We had to keep pushing the doctor for blood tests, because

> they wouldn't give her the antibiotics even though she had the

> classic PANDAS symptoms. As for her handwriting, when she was very

> ill, it was almost illegible. Even she would say, " I don't know what

> wrong...I can't even write " You can see the difference in her school

> books.

>

> When she first started therapy and exposure, the psychologist

> limited the exposure to one fear or worry at a time. Gradually we

> started to work on a couple a week.

>

> Yes, her symptoms got worse before they got better. Where we live

> in Canada, there are no child psychiatrists. We had to wait 2 months

> before she could be diagnosed in the US. By that time, her symptoms

> were severe, and she was unable to go to school.

>

> With therapy, time and the antibiotics she has greatly improved.

> It's been 7 months without one worry. We have our fingers crossed.

>

> All I can say is you know your daughter better than anyone else. If

> you believe it's PANDAs then it may not have shown up in her

> bloodwork just yet.

>

> wishing you well, nne

>

> I also remember reading something about PITANDS - OCD not caused by

> strep but other viruses. If you'd like I can try and find my

> information.

>

> " autumn71A@... " <autumn71A@...> wrote:

> thanks nne - I may do the one month thing - I did start

> exposure

> here today though because it was just sneaking in, in too many places

> - dd doesn't have those other issues you mentioned - do you think

> she's PANDAS - she has bad handwriting but so do dh and I and that was

> always - did your dd's get worse after the diagnosis

> Eileen

>

> ??Quoting nne N <luv_yoga_2@...>:

>

>> Hi Eileen,

>>

>> Yes, I believe the antibiotics did help ...She took anitibiotics for

>> 1 month after being diagnosed. After the third week on antibiotics,

>> she wasn't having as many obsessive thoughts and she was more like

>> her old self. She also experienced those PANDAS characteristics like

>> poor handwriting, age regression, and difficulty with math - those

>> problems seemed to just vanish after that first month. We still

>> battled OCD with CBT/Exposure for several more months, although the

>> symptoms gradually lessened.

>>

>> On the doctor's advice, she took a low dose antibiotic throughout

>> the school year. She has virtually been symptom free for the last 7

>> months.

>>

>> all the best, nne

>>

>>

>>

>> " autumn71A@... " <autumn71A@...> wrote:

>> marianne did antibiotics ever reduce ocd symptoms?

>> eileen

>>

>> Quoting nne N <luv_yoga_2@...>:

>>

>>> Hi ,

>>>

>>> When our daughter first had OCD symptoms, we felt strongly that it

>>> was Pandas. She never did test positive for strep, although she

>>> first became sick after having the flu. She had two blood test

>>> before the third one (two and a half months later) showed very

>>> elevated strep titers. So I guess in our daughter's case, yes her

>>> doctor believes she has PANDAS but she's never tested positive for

>>> strep only elevated titers. (or even increasing titers) Take care,

>>> nne

>>>

>>> <lauraj2@...> wrote:

>>> Our son fit the Pandas symptoms pretty much head on, but he

>>> had no sign of strep in his blood. He did have an initial slight

>>> positive for strep on the swipe test. He took the antibiotic and then

>>> the blood test. The doctor said he had never had strep, and did not

>>> have Pandas, but regular OCD. We still feel it is Pandas, because of

>>> the exact match of symptoms, sudden onset, other symptoms, and then

>>> gradual improvement. Can you get negative strep and still have Pandas?

>>> J

>>> Doctor's comments on PANDAS

>>>

>>> ***I had asked the doctors on another group site what is the

>>> difference between PANDAS OCD and other OCD. Also I asked him if

>>> there was a feel for one SSRI being better than another when

>>> treating OCD> Here is the answer that he gave me***

>>>

>>> *******************************************************************

>>>

>>> The difference between PANDAS associated OCD and most OCD is that we

>>> think we know what causes it for PANDAS. There is a tendency for the

>>> symptoms to come on suddenly and or worsen dramatically in a short

>>> time.

>>>

>>> Acute treatment with antibiotics may lead to remission or rapid

>>> improvement. Once the OCD is established however there is no evidence

>>> that I am aware of that it will respond any differently to treatment.

>>>

>>> In the case of established OCD the proven treatments are SRI

>>> medications and CBT. In children CBT alone may be enough to bring

>>> about remission and in general the evidence supports the idea that

>>> combined treatment is usually about equal to CBT alone although in

>>> many cases a combined treatment will seem like the best choice.

>>>

>>> There is no one drug that has been shown to be better than any other

>>> so a trial and error approach is needed. Usually reasonably high

>>> dosages of medications are needed over an extended period of time to

>>> really know how well it is going to work.

>>>

>>>

[Guest guest]

is she still on a low dose during school?? I couldn't remeber - I'm not

a fan of antibiotics and hadn't used them until now - is this going to

ruin her awesome immune system - which would mean more sickness/more

OCD??? AAUUGGHH! so confusing!

Eileen

Quoting nne N <luv_yoga_2@...>:

> Eileen,

>

> The only way we got the PANDAS diagnosis was my daughter's

> increasing strep titers. We were suspect because she had all the

> symptoms. We had to keep pushing the doctor for blood tests, because

> they wouldn't give her the antibiotics even though she had the

> classic PANDAS symptoms. As for her handwriting, when she was very

> ill, it was almost illegible. Even she would say, " I don't know what

> wrong...I can't even write " You can see the difference in her school

> books.

>

> When she first started therapy and exposure, the psychologist

> limited the exposure to one fear or worry at a time. Gradually we

> started to work on a couple a week.

>

> Yes, her symptoms got worse before they got better. Where we live

> in Canada, there are no child psychiatrists. We had to wait 2 months

> before she could be diagnosed in the US. By that time, her symptoms

> were severe, and she was unable to go to school.

>

> With therapy, time and the antibiotics she has greatly improved.

> It's been 7 months without one worry. We have our fingers crossed.

>

> All I can say is you know your daughter better than anyone else. If

> you believe it's PANDAs then it may not have shown up in her

> bloodwork just yet.

>

> wishing you well, nne

>

> I also remember reading something about PITANDS - OCD not caused by

> strep but other viruses. If you'd like I can try and find my

> information.

>

> " autumn71A@... " <autumn71A@...> wrote:

> thanks nne - I may do the one month thing - I did start

> exposure

> here today though because it was just sneaking in, in too many places

> - dd doesn't have those other issues you mentioned - do you think

> she's PANDAS - she has bad handwriting but so do dh and I and that was

> always - did your dd's get worse after the diagnosis

> Eileen

>

> ??Quoting nne N <luv_yoga_2@...>:

>

>> Hi Eileen,

>>

>> Yes, I believe the antibiotics did help ...She took anitibiotics for

>> 1 month after being diagnosed. After the third week on antibiotics,

>> she wasn't having as many obsessive thoughts and she was more like

>> her old self. She also experienced those PANDAS characteristics like

>> poor handwriting, age regression, and difficulty with math - those

>> problems seemed to just vanish after that first month. We still

>> battled OCD with CBT/Exposure for several more months, although the

>> symptoms gradually lessened.

>>

>> On the doctor's advice, she took a low dose antibiotic throughout

>> the school year. She has virtually been symptom free for the last 7

>> months.

>>

>> all the best, nne

>>

>>

>>

>> " autumn71A@... " <autumn71A@...> wrote:

>> marianne did antibiotics ever reduce ocd symptoms?

>> eileen

>>

>> Quoting nne N <luv_yoga_2@...>:

>>

>>> Hi ,

>>>

>>> When our daughter first had OCD symptoms, we felt strongly that it

>>> was Pandas. She never did test positive for strep, although she

>>> first became sick after having the flu. She had two blood test

>>> before the third one (two and a half months later) showed very

>>> elevated strep titers. So I guess in our daughter's case, yes her

>>> doctor believes she has PANDAS but she's never tested positive for

>>> strep only elevated titers. (or even increasing titers) Take care,

>>> nne

>>>

>>> <lauraj2@...> wrote:

>>> Our son fit the Pandas symptoms pretty much head on, but he

>>> had no sign of strep in his blood. He did have an initial slight

>>> positive for strep on the swipe test. He took the antibiotic and then

>>> the blood test. The doctor said he had never had strep, and did not

>>> have Pandas, but regular OCD. We still feel it is Pandas, because of

>>> the exact match of symptoms, sudden onset, other symptoms, and then

>>> gradual improvement. Can you get negative strep and still have Pandas?

>>> J

>>> Doctor's comments on PANDAS

>>>

>>> ***I had asked the doctors on another group site what is the

>>> difference between PANDAS OCD and other OCD. Also I asked him if

>>> there was a feel for one SSRI being better than another when

>>> treating OCD> Here is the answer that he gave me***

>>>

>>> *******************************************************************

>>>

>>> The difference between PANDAS associated OCD and most OCD is that we

>>> think we know what causes it for PANDAS. There is a tendency for the

>>> symptoms to come on suddenly and or worsen dramatically in a short

>>> time.

>>>

>>> Acute treatment with antibiotics may lead to remission or rapid

>>> improvement. Once the OCD is established however there is no evidence

>>> that I am aware of that it will respond any differently to treatment.

>>>

>>> In the case of established OCD the proven treatments are SRI

>>> medications and CBT. In children CBT alone may be enough to bring

>>> about remission and in general the evidence supports the idea that

>>> combined treatment is usually about equal to CBT alone although in

>>> many cases a combined treatment will seem like the best choice.

>>>

>>> There is no one drug that has been shown to be better than any other

>>> so a trial and error approach is needed. Usually reasonably high

>>> dosages of medications are needed over an extended period of time to

>>> really know how well it is going to work.

>>>

>>>

[Guest guest]

kim I thought that too - I read that in a book as well and basically it

said they don't know yet - but if CBT alone works and it does in

75-80% I think then do that and use meds only if needed -that's why I'm

shocked that so many seem to be put right on??? Eileen

- Quoting mnmomof1@...:

> I don't really understand this statement about CBT alone being equal to meds

> and CBT, but that combined treatment may seem like the best approach.

> It seems

> contradictory to me. Can anyone explain what the doc meant? Thank you. Kim

>

> In a message dated 8/12/2006 6:59:01 PM Central Standard Time,

> pba1221d@... writes:

> In children CBT alone may be enough to bring

> about remission and in general the evidence supports the idea that

> combined treatment is usually about equal to CBT alone although in

> many cases a combined treatment will seem like the best choice.

>

>

>

[Guest guest]

Hi Eileen,

She took antibiotics last school year. This year we are going to try and go

it without. She has been off the antibiotics since May...School starts here

after Labour Day. We'll see how it goes. nne

" autumn71A@... " <autumn71A@...> wrote:

is she still on a low dose during school?? I couldn't remeber - I'm

not

a fan of antibiotics and hadn't used them until now - is this going to

ruin her awesome immune system - which would mean more sickness/more

OCD??? AAUUGGHH! so confusing!

Eileen

Quoting nne N <luv_yoga_2@...>:

> Eileen,

>

> The only way we got the PANDAS diagnosis was my daughter's

> increasing strep titers. We were suspect because she had all the

> symptoms. We had to keep pushing the doctor for blood tests, because

> they wouldn't give her the antibiotics even though she had the

> classic PANDAS symptoms. As for her handwriting, when she was very

> ill, it was almost illegible. Even she would say, " I don't know what

> wrong...I can't even write " You can see the difference in her school

> books.

>

> When she first started therapy and exposure, the psychologist

> limited the exposure to one fear or worry at a time. Gradually we

> started to work on a couple a week.

>

> Yes, her symptoms got worse before they got better. Where we live

> in Canada, there are no child psychiatrists. We had to wait 2 months

> before she could be diagnosed in the US. By that time, her symptoms

> were severe, and she was unable to go to school.

>

> With therapy, time and the antibiotics she has greatly improved.

> It's been 7 months without one worry. We have our fingers crossed.

>

> All I can say is you know your daughter better than anyone else. If

> you believe it's PANDAs then it may not have shown up in her

> bloodwork just yet.

>

> wishing you well, nne

>

> I also remember reading something about PITANDS - OCD not caused by

> strep but other viruses. If you'd like I can try and find my

> information.

>

> " autumn71A@... " <autumn71A@...> wrote:

> thanks nne - I may do the one month thing - I did start

> exposure

> here today though because it was just sneaking in, in too many places

> - dd doesn't have those other issues you mentioned - do you think

> she's PANDAS - she has bad handwriting but so do dh and I and that was

> always - did your dd's get worse after the diagnosis

> Eileen

>

> ??Quoting nne N <luv_yoga_2@...>:

>

>> Hi Eileen,

>>

>> Yes, I believe the antibiotics did help ...She took anitibiotics for

>> 1 month after being diagnosed. After the third week on antibiotics,

>> she wasn't having as many obsessive thoughts and she was more like

>> her old self. She also experienced those PANDAS characteristics like

>> poor handwriting, age regression, and difficulty with math - those

>> problems seemed to just vanish after that first month. We still

>> battled OCD with CBT/Exposure for several more months, although the

>> symptoms gradually lessened.

>>

>> On the doctor's advice, she took a low dose antibiotic throughout

>> the school year. She has virtually been symptom free for the last 7

>> months.

>>

>> all the best, nne

>>

>>

>>

>> " autumn71A@... " <autumn71A@...> wrote:

>> marianne did antibiotics ever reduce ocd symptoms?

>> eileen

>>

>> Quoting nne N <luv_yoga_2@...>:

>>

>>> Hi ,

>>>

>>> When our daughter first had OCD symptoms, we felt strongly that it

>>> was Pandas. She never did test positive for strep, although she

>>> first became sick after having the flu. She had two blood test

>>> before the third one (two and a half months later) showed very

>>> elevated strep titers. So I guess in our daughter's case, yes her

>>> doctor believes she has PANDAS but she's never tested positive for

>>> strep only elevated titers. (or even increasing titers) Take care,

>>> nne

>>>

>>> <lauraj2@...> wrote:

>>> Our son fit the Pandas symptoms pretty much head on, but he

>>> had no sign of strep in his blood. He did have an initial slight

>>> positive for strep on the swipe test. He took the antibiotic and then

>>> the blood test. The doctor said he had never had strep, and did not

>>> have Pandas, but regular OCD. We still feel it is Pandas, because of

>>> the exact match of symptoms, sudden onset, other symptoms, and then

>>> gradual improvement. Can you get negative strep and still have Pandas?

>>> J

>>> Doctor's comments on PANDAS

>>>

>>> ***I had asked the doctors on another group site what is the

>>> difference between PANDAS OCD and other OCD. Also I asked him if

>>> there was a feel for one SSRI being better than another when

>>> treating OCD> Here is the answer that he gave me***

>>>

>>> *******************************************************************

>>>

>>> The difference between PANDAS associated OCD and most OCD is that we

>>> think we know what causes it for PANDAS. There is a tendency for the

>>> symptoms to come on suddenly and or worsen dramatically in a short

>>> time.

>>>

>>> Acute treatment with antibiotics may lead to remission or rapid

>>> improvement. Once the OCD is established however there is no evidence

>>> that I am aware of that it will respond any differently to treatment.

>>>

>>> In the case of established OCD the proven treatments are SRI

>>> medications and CBT. In children CBT alone may be enough to bring

>>> about remission and in general the evidence supports the idea that

>>> combined treatment is usually about equal to CBT alone although in

>>> many cases a combined treatment will seem like the best choice.

>>>

>>> There is no one drug that has been shown to be better than any other

>>> so a trial and error approach is needed. Usually reasonably high

>>> dosages of medications are needed over an extended period of time to

>>> really know how well it is going to work.

>>>

>>>

[Guest guest]

just to bug you again - what was she on for that first month and how

much - we're doing 2 tsp a.m. and 2 tsp p.m. now but doc is

investigating if it's ok to continue that for a whole month

thanks Eileen

Quoting nne N <luv_yoga_2@...>:

> Hi Eileen,

>

> She took antibiotics last school year. This year we are going to

> try and go it without. She has been off the antibiotics since

> May...School starts here after Labour Day. We'll see how it goes.

> nne

>

> " autumn71A@... " <autumn71A@...> wrote:

> is she still on a low dose during school?? I couldn't

> remeber - I'm not

> a fan of antibiotics and hadn't used them until now - is this going to

> ruin her awesome immune system - which would mean more sickness/more

> OCD??? AAUUGGHH! so confusing!

> Eileen

>

> Quoting nne N <luv_yoga_2@...>:

>

>> Eileen,

>>

>> The only way we got the PANDAS diagnosis was my daughter's

>> increasing strep titers. We were suspect because she had all the

>> symptoms. We had to keep pushing the doctor for blood tests, because

>> they wouldn't give her the antibiotics even though she had the

>> classic PANDAS symptoms. As for her handwriting, when she was very

>> ill, it was almost illegible. Even she would say, " I don't know what

>> wrong...I can't even write " You can see the difference in her school

>> books.

>>

>> When she first started therapy and exposure, the psychologist

>> limited the exposure to one fear or worry at a time. Gradually we

>> started to work on a couple a week.

>>

>> Yes, her symptoms got worse before they got better. Where we live

>> in Canada, there are no child psychiatrists. We had to wait 2 months

>> before she could be diagnosed in the US. By that time, her symptoms

>> were severe, and she was unable to go to school.

>>

>> With therapy, time and the antibiotics she has greatly improved.

>> It's been 7 months without one worry. We have our fingers crossed.

>>

>> All I can say is you know your daughter better than anyone else. If

>> you believe it's PANDAs then it may not have shown up in her

>> bloodwork just yet.

>>

>> wishing you well, nne

>>

>> I also remember reading something about PITANDS - OCD not caused by

>> strep but other viruses. If you'd like I can try and find my

>> information.

>>

>> " autumn71A@... " <autumn71A@...> wrote:

>> thanks nne - I may do the one month thing - I did start

>> exposure

>> here today though because it was just sneaking in, in too many places

>> - dd doesn't have those other issues you mentioned - do you think

>> she's PANDAS - she has bad handwriting but so do dh and I and that was

>> always - did your dd's get worse after the diagnosis

>> Eileen

>>

>> ??Quoting nne N <luv_yoga_2@...>:

>>

>>> Hi Eileen,

>>>

>>> Yes, I believe the antibiotics did help ...She took anitibiotics for

>>> 1 month after being diagnosed. After the third week on antibiotics,

>>> she wasn't having as many obsessive thoughts and she was more like

>>> her old self. She also experienced those PANDAS characteristics like

>>> poor handwriting, age regression, and difficulty with math - those

>>> problems seemed to just vanish after that first month. We still

>>> battled OCD with CBT/Exposure for several more months, although the

>>> symptoms gradually lessened.

>>>

>>> On the doctor's advice, she took a low dose antibiotic throughout

>>> the school year. She has virtually been symptom free for the last 7

>>> months.

>>>

>>> all the best, nne

>>>

>>>

>>>

>>> " autumn71A@... " <autumn71A@...> wrote:

>>> marianne did antibiotics ever reduce ocd symptoms?

>>> eileen

>>>

>>> Quoting nne N <luv_yoga_2@...>:

>>>

>>>> Hi ,

>>>>

>>>> When our daughter first had OCD symptoms, we felt strongly that it

>>>> was Pandas. She never did test positive for strep, although she

>>>> first became sick after having the flu. She had two blood test

>>>> before the third one (two and a half months later) showed very

>>>> elevated strep titers. So I guess in our daughter's case, yes her

>>>> doctor believes she has PANDAS but she's never tested positive for

>>>> strep only elevated titers. (or even increasing titers) Take care,

>>>> nne

>>>>

>>>> <lauraj2@...> wrote:

>>>> Our son fit the Pandas symptoms pretty much head on, but he

>>>> had no sign of strep in his blood. He did have an initial slight

>>>> positive for strep on the swipe test. He took the antibiotic and then

>>>> the blood test. The doctor said he had never had strep, and did not

>>>> have Pandas, but regular OCD. We still feel it is Pandas, because of

>>>> the exact match of symptoms, sudden onset, other symptoms, and then

>>>> gradual improvement. Can you get negative strep and still have Pandas?

>>>> J

>>>> Doctor's comments on PANDAS

>>>>

>>>> ***I had asked the doctors on another group site what is the

>>>> difference between PANDAS OCD and other OCD. Also I asked him if

>>>> there was a feel for one SSRI being better than another when

>>>> treating OCD> Here is the answer that he gave me***

>>>>

>>>> *******************************************************************

>>>>

>>>> The difference between PANDAS associated OCD and most OCD is that we

>>>> think we know what causes it for PANDAS. There is a tendency for the

>>>> symptoms to come on suddenly and or worsen dramatically in a short

>>>> time.

>>>>

>>>> Acute treatment with antibiotics may lead to remission or rapid

>>>> improvement. Once the OCD is established however there is no evidence

>>>> that I am aware of that it will respond any differently to treatment.

>>>>

>>>> In the case of established OCD the proven treatments are SRI

>>>> medications and CBT. In children CBT alone may be enough to bring

>>>> about remission and in general the evidence supports the idea that

>>>> combined treatment is usually about equal to CBT alone although in

>>>> many cases a combined treatment will seem like the best choice.

>>>>

>>>> There is no one drug that has been shown to be better than any other

>>>> so a trial and error approach is needed. Usually reasonably high

>>>> dosages of medications are needed over an extended period of time to

>>>> really know how well it is going to work.

>>>>

>>>>

[Guest guest]

Hi Eileen,

Sorry for not responding sooner. Our server has been down. I've gone through

my records, but I can't find the dosage. She was on a regular dose of

amoxycllin (sp?)...It was just a regular dose - not any higher than ususal. If

you'd like I can call our pharmacy to double check the dosage. nne

" autumn71A@... " <autumn71A@...> wrote:

just to bug you again - what was she on for that first month and how

much - we're doing 2 tsp a.m. and 2 tsp p.m. now but doc is

investigating if it's ok to continue that for a whole month

thanks Eileen

Quoting nne N <luv_yoga_2@...>:

> Hi Eileen,

>

> She took antibiotics last school year. This year we are going to

> try and go it without. She has been off the antibiotics since

> May...School starts here after Labour Day. We'll see how it goes.

> nne

>

> " autumn71A@... " <autumn71A@...> wrote:

> is she still on a low dose during school?? I couldn't

> remeber - I'm not

> a fan of antibiotics and hadn't used them until now - is this going to

> ruin her awesome immune system - which would mean more sickness/more

> OCD??? AAUUGGHH! so confusing!

> Eileen

>

> Quoting nne N <luv_yoga_2@...>:

>

>> Eileen,

>>

>> The only way we got the PANDAS diagnosis was my daughter's

>> increasing strep titers. We were suspect because she had all the

>> symptoms. We had to keep pushing the doctor for blood tests, because

>> they wouldn't give her the antibiotics even though she had the

>> classic PANDAS symptoms. As for her handwriting, when she was very

>> ill, it was almost illegible. Even she would say, " I don't know what

>> wrong...I can't even write " You can see the difference in her school

>> books.

>>

>> When she first started therapy and exposure, the psychologist

>> limited the exposure to one fear or worry at a time. Gradually we

>> started to work on a couple a week.

>>

>> Yes, her symptoms got worse before they got better. Where we live

>> in Canada, there are no child psychiatrists. We had to wait 2 months

>> before she could be diagnosed in the US. By that time, her symptoms

>> were severe, and she was unable to go to school.

>>

>> With therapy, time and the antibiotics she has greatly improved.

>> It's been 7 months without one worry. We have our fingers crossed.

>>

>> All I can say is you know your daughter better than anyone else. If

>> you believe it's PANDAs then it may not have shown up in her

>> bloodwork just yet.

>>

>> wishing you well, nne

>>

>> I also remember reading something about PITANDS - OCD not caused by

>> strep but other viruses. If you'd like I can try and find my

>> information.

>>

>> " autumn71A@... " <autumn71A@...> wrote:

>> thanks nne - I may do the one month thing - I did start

>> exposure

>> here today though because it was just sneaking in, in too many places

>> - dd doesn't have those other issues you mentioned - do you think

>> she's PANDAS - she has bad handwriting but so do dh and I and that was

>> always - did your dd's get worse after the diagnosis

>> Eileen

>>

>> ??Quoting nne N <luv_yoga_2@...>:

>>

>>> Hi Eileen,

>>>

>>> Yes, I believe the antibiotics did help ...She took anitibiotics for

>>> 1 month after being diagnosed. After the third week on antibiotics,

>>> she wasn't having as many obsessive thoughts and she was more like

>>> her old self. She also experienced those PANDAS characteristics like

>>> poor handwriting, age regression, and difficulty with math - those

>>> problems seemed to just vanish after that first month. We still

>>> battled OCD with CBT/Exposure for several more months, although the

>>> symptoms gradually lessened.

>>>

>>> On the doctor's advice, she took a low dose antibiotic throughout

>>> the school year. She has virtually been symptom free for the last 7

>>> months.

>>>

>>> all the best, nne

>>>

>>>

>>>

>>> " autumn71A@... " <autumn71A@...> wrote:

>>> marianne did antibiotics ever reduce ocd symptoms?

>>> eileen

>>>

>>> Quoting nne N <luv_yoga_2@...>:

>>>

>>>> Hi ,

>>>>

>>>> When our daughter first had OCD symptoms, we felt strongly that it

>>>> was Pandas. She never did test positive for strep, although she

>>>> first became sick after having the flu. She had two blood test

>>>> before the third one (two and a half months later) showed very

>>>> elevated strep titers. So I guess in our daughter's case, yes her

>>>> doctor believes she has PANDAS but she's never tested positive for

>>>> strep only elevated titers. (or even increasing titers) Take care,

>>>> nne

>>>>

>>>> <lauraj2@...> wrote:

>>>> Our son fit the Pandas symptoms pretty much head on, but he

>>>> had no sign of strep in his blood. He did have an initial slight

>>>> positive for strep on the swipe test. He took the antibiotic and then

>>>> the blood test. The doctor said he had never had strep, and did not

>>>> have Pandas, but regular OCD. We still feel it is Pandas, because of

>>>> the exact match of symptoms, sudden onset, other symptoms, and then

>>>> gradual improvement. Can you get negative strep and still have Pandas?

>>>> J

>>>> Doctor's comments on PANDAS

>>>>

>>>> ***I had asked the doctors on another group site what is the

>>>> difference between PANDAS OCD and other OCD. Also I asked him if

>>>> there was a feel for one SSRI being better than another when

>>>> treating OCD> Here is the answer that he gave me***

>>>>

>>>> *******************************************************************

>>>>

>>>> The difference between PANDAS associated OCD and most OCD is that we

>>>> think we know what causes it for PANDAS. There is a tendency for the

>>>> symptoms to come on suddenly and or worsen dramatically in a short

>>>> time.

>>>>

>>>> Acute treatment with antibiotics may lead to remission or rapid

>>>> improvement. Once the OCD is established however there is no evidence

>>>> that I am aware of that it will respond any differently to treatment.

>>>>

>>>> In the case of established OCD the proven treatments are SRI

>>>> medications and CBT. In children CBT alone may be enough to bring

>>>> about remission and in general the evidence supports the idea that

>>>> combined treatment is usually about equal to CBT alone although in

>>>> many cases a combined treatment will seem like the best choice.

>>>>

>>>> There is no one drug that has been shown to be better than any other

>>>> so a trial and error approach is needed. Usually reasonably high

>>>> dosages of medications are needed over an extended period of time to

>>>> really know how well it is going to work.

>>>>

>>>>

[Guest guest]

that would be wonderful - thanks - and also if they kept it the same

for 30 days- thanks so much!!!

Eileen

Quoting nne N <luv_yoga_2@...>:

> Hi Eileen,

>

> Sorry for not responding sooner. Our server has been down. I've

> gone through my records, but I can't find the dosage. She was on a

> regular dose of amoxycllin (sp?)...It was just a regular dose - not

> any higher than ususal. If you'd like I can call our pharmacy to

> double check the dosage. nne

>

> " autumn71A@... " <autumn71A@...> wrote:

> just to bug you again - what was she on for that first month and how

> much - we're doing 2 tsp a.m. and 2 tsp p.m. now but doc is

> investigating if it's ok to continue that for a whole month

> thanks Eileen

>

> Quoting nne N <luv_yoga_2@...>:

>

>> Hi Eileen,

>>

>> She took antibiotics last school year. This year we are going to

>> try and go it without. She has been off the antibiotics since

>> May...School starts here after Labour Day. We'll see how it goes.

>> nne

>>

>> " autumn71A@... " <autumn71A@...> wrote:

>> is she still on a low dose during school?? I couldn't

>> remeber - I'm not

>> a fan of antibiotics and hadn't used them until now - is this going to

>> ruin her awesome immune system - which would mean more sickness/more

>> OCD??? AAUUGGHH! so confusing!

>> Eileen

>>

>> Quoting nne N <luv_yoga_2@...>:

>>

>>> Eileen,

>>>

>>> The only way we got the PANDAS diagnosis was my daughter's

>>> increasing strep titers. We were suspect because she had all the

>>> symptoms. We had to keep pushing the doctor for blood tests, because

>>> they wouldn't give her the antibiotics even though she had the

>>> classic PANDAS symptoms. As for her handwriting, when she was very

>>> ill, it was almost illegible. Even she would say, " I don't know what

>>> wrong...I can't even write " You can see the difference in her school

>>> books.

>>>

>>> When she first started therapy and exposure, the psychologist

>>> limited the exposure to one fear or worry at a time. Gradually we

>>> started to work on a couple a week.

>>>

>>> Yes, her symptoms got worse before they got better. Where we live

>>> in Canada, there are no child psychiatrists. We had to wait 2 months

>>> before she could be diagnosed in the US. By that time, her symptoms

>>> were severe, and she was unable to go to school.

>>>

>>> With therapy, time and the antibiotics she has greatly improved.

>>> It's been 7 months without one worry. We have our fingers crossed.

>>>

>>> All I can say is you know your daughter better than anyone else. If

>>> you believe it's PANDAs then it may not have shown up in her

>>> bloodwork just yet.

>>>

>>> wishing you well, nne

>>>

>>> I also remember reading something about PITANDS - OCD not caused by

>>> strep but other viruses. If you'd like I can try and find my

>>> information.

>>>

>>> " autumn71A@... " <autumn71A@...> wrote:

>>> thanks nne - I may do the one month thing - I did start

>>> exposure

>>> here today though because it was just sneaking in, in too many places

>>> - dd doesn't have those other issues you mentioned - do you think

>>> she's PANDAS - she has bad handwriting but so do dh and I and that was

>>> always - did your dd's get worse after the diagnosis

>>> Eileen

>>>

>>> ??Quoting nne N <luv_yoga_2@...>:

>>>

>>>> Hi Eileen,

>>>>

>>>> Yes, I believe the antibiotics did help ...She took anitibiotics for

>>>> 1 month after being diagnosed. After the third week on antibiotics,

>>>> she wasn't having as many obsessive thoughts and she was more like

>>>> her old self. She also experienced those PANDAS characteristics like

>>>> poor handwriting, age regression, and difficulty with math - those

>>>> problems seemed to just vanish after that first month. We still

>>>> battled OCD with CBT/Exposure for several more months, although the

>>>> symptoms gradually lessened.

>>>>

>>>> On the doctor's advice, she took a low dose antibiotic throughout

>>>> the school year. She has virtually been symptom free for the last 7

>>>> months.

>>>>

>>>> all the best, nne

>>>>

>>>>

>>>>

>>>> " autumn71A@... " <autumn71A@...> wrote:

>>>> marianne did antibiotics ever reduce ocd symptoms?

>>>> eileen

>>>>

>>>> Quoting nne N <luv_yoga_2@...>:

>>>>

>>>>> Hi ,

>>>>>

>>>>> When our daughter first had OCD symptoms, we felt strongly that it

>>>>> was Pandas. She never did test positive for strep, although she

>>>>> first became sick after having the flu. She had two blood test

>>>>> before the third one (two and a half months later) showed very

>>>>> elevated strep titers. So I guess in our daughter's case, yes her

>>>>> doctor believes she has PANDAS but she's never tested positive for

>>>>> strep only elevated titers. (or even increasing titers) Take care,

>>>>> nne

>>>>>

>>>>> <lauraj2@...> wrote:

>>>>> Our son fit the Pandas symptoms pretty much head on, but he

>>>>> had no sign of strep in his blood. He did have an initial slight

>>>>> positive for strep on the swipe test. He took the antibiotic and then

>>>>> the blood test. The doctor said he had never had strep, and did not

>>>>> have Pandas, but regular OCD. We still feel it is Pandas, because of

>>>>> the exact match of symptoms, sudden onset, other symptoms, and then

>>>>> gradual improvement. Can you get negative strep and still have Pandas?

>>>>> J

>>>>> Doctor's comments on PANDAS

>>>>>

>>>>> ***I had asked the doctors on another group site what is the

>>>>> difference between PANDAS OCD and other OCD. Also I asked him if

>>>>> there was a feel for one SSRI being better than another when

>>>>> treating OCD> Here is the answer that he gave me***

>>>>>

>>>>> *******************************************************************

>>>>>

>>>>> The difference between PANDAS associated OCD and most OCD is that we

>>>>> think we know what causes it for PANDAS. There is a tendency for the

>>>>> symptoms to come on suddenly and or worsen dramatically in a short

>>>>> time.

>>>>>

>>>>> Acute treatment with antibiotics may lead to remission or rapid

>>>>> improvement. Once the OCD is established however there is no evidence

>>>>> that I am aware of that it will respond any differently to treatment.

>>>>>

>>>>> In the case of established OCD the proven treatments are SRI

>>>>> medications and CBT. In children CBT alone may be enough to bring

>>>>> about remission and in general the evidence supports the idea that

>>>>> combined treatment is usually about equal to CBT alone although in

>>>>> many cases a combined treatment will seem like the best choice.

>>>>>

>>>>> There is no one drug that has been shown to be better than any other

>>>>> so a trial and error approach is needed. Usually reasonably high

>>>>> dosages of medications are needed over an extended period of time to

>>>>> really know how well it is going to work.

>>>>>

>>>>>