Our Doctors appt... I'M CONFUSED!!!!

[Guest guest]

Ok people... I'm MORE confused now than ever. Maybe confused AND frustrated.

First let me say that some of the information I was given by the gal in the

front office when I made our appointment in late February was incorrect.

This doc does NOT do ERP therapy. I was heartbroken. The doctor asked us what

we were coming to her for as far as treatment (of course she KNEW because it

was all in the written material we gave to her beforehand - I'm sure this was

just to " verbalize " it all) I said we wanted our daughter to start CBT &

ERP therapy. She replied, " I do cognitive behavioral therapy -- I don't do

ERP.... " then she launched into an explanation of why she doesn't do it. All

the while I was just thinking " HUH?? " My husband shot a glance at me, my

daughter shot a glance at me... both looking like " HUH? " because, naturally I

told them this woman did BOTH therapies & how very lucky we were to find her...

blah blah blah.

So, not wanting to start an issue right there in front of my daughter, I

just let it go. The doctor shared that the only place you can get that therapy

around here is Duke (4 hours south of here) and that she had worked with Dr.

March (or is that Marsh??) years ago on a study involving ERP. She said she

couldn't ever justify having a child fill out 5 pages of forms after

everything they did (eat a bowl of cereal, wash their hands, etc). I can only

assume

that she was exaggerating for effect when she said " 5 pages of forms every

time they do anything " ???

She went on to explain that she felt, while ERP concentrates on one specific

compulsion, it doesn't work as well (is not as all-encompassing) as CBT is

-- which she likened to an 'umbrella' type of treatment - you learn a

method/technique that you can then apply to any compulsion. She said that

using ERP

to treat, say, excessive hand washing would work on hand washing only - but

that compulsion could just pop up again as something else, then what?

She also said that she only handles " short term " patients. If you need

treatment for, say, years.... she would send you to someone else. She then

touched on a couple other less important issues that I thought had already been

addressed by the infamous " front office gal " .... but we know how that story

ends.... wrong.

Also, this 1st one-hour appt was just part 1 of the 'interview' when she

mostly talks to the parents -- 'part 2' is on May 12th (that's the soonest we

could get back in) is another 1 hour appt when she mostly talks to my daughter.

THEN treatment will start sometime in June. So basically, we STILL have no

help & have NO idea what to do until June.

OH - another thing she said.... when we were told how long we would have to

wait for the actual treatment to start, I asked her, " How do I know, in the

meantime, if I'm helping or hurting her with how we're handling this at

home.... " ( I included a brief explanation of what exactly I did to help my

daughter through showers, etc. ) The doctor said, " well, actually whatever you

do

really is inconsequential. By physically helping her, you're not making it

worse or better - you're more like just maintaining it. " (So, again... no

answers on WHAT we should or shouldn't be doing.... other than waiting for

nearly 2 MORE months.)

In any event, I just don't know WHAT to do now. Oh - also, now my husband

says he didn't hear her say this, but I swear I heard her say this - she said

that we need to decide which type of therapy we wanted our daughter to have,

the CBT that she does, or the ERP down at Duke, because the 2 can't be done

together because they are different types of treatment.

Someone needs to explain all this to me ..... PLEASE!!!!!!!! I'm more

screwed up on what to do now than I was before.

LT

[Guest guest]

In a message dated 4/26/2006 12:15:59 P.M. Eastern Standard Time,

mdonlon@... writes:

I don't see

where this dr. is coming from at all, how she made the decision that

ERP doesn't work - it DOES, and it must be done in conjunction with

CBT. ...........................................................As for the

5 pages to fill out ?????????? no idea what she's referring to on this,

either. I have NEVER filled out any forms like that, and neither has my

daughter.

nna -

That's kind of what I thought - I figured if anyone out there was doing THAT

much paperwork as a part of ERP, it would have to have been mentioned on

this board. As for ERP 'not working', she didn't actually say that - she said

that CBT was more effective in treating OCD across the board & since it

doesn't target specific compulsions alone, like ERP does, it's a better way/more

useful technique.

I am going to call her office today & go over a couple point that's I'm not

clear on -- one confirming that I heard her correctly about NOT doing ERP &

CBT together because they are different forms of treatment.... the paperwork

she says is involved..... and what the heck is with the " short term'

treatment deal?

Anyway, thanks for your comments. I'm putting off this phone call & I

shouldn't.

LT

[Guest guest]

In a message dated 4/26/2006 12:34:32 P.M. Eastern Standard Time,

firecooklmp@... writes:

We did have to fill out forms and so forth, but -- except for intake -- only

in connection with her involvement in a treatment study. I think this study

is also being done at Duke (we participated through Penn), so maybe this is

what the doctor is thinking about?

P -

I was wondering that myself because she did say she worked with Dr. March on

a 'study' - but then, in the same breath, I had to wonder how a doctor could

be confused between a 'study' and 'treatment'????

LT

[Guest guest]

In a message dated 4/26/2006 1:39:33 P.M. Eastern Standard Time,

nmlinnen@... writes:

In reference to paperwork and Duke, was there a study going on?

-

Thanks for your comments. The study at Duke which the doctor was referring

to was years ago - nothing current. She just brought that up when I

mentioned the ERP. However, there is no mistake that she said she just

couldn't see

making kids fill out " 5 pages of paperwork forms every time they did

something like eat a bowl of cereal or wash their hands. " That comment was

straight

from the doctor.

Thinking about it, I even commented to my husband that it was probably

because it was a 'study' and not just regular old 'treatment'. Again --- how

could a doctor confuse the two???

LT

[Guest guest]

The OCD Foundation sent out a packet this week. I don't know if you got it.

It had a book that says what to look for in a therapist who treats OCD. You

could ask them to send you the packet if you didn't get it. It says Questions

and Answers.

1 What is your treatment orientation?-- The answer you want to get is

behavioral or cognitive-behavioral.

2. Do you do exposure and response prevention therapy (ERP) with your OCD

patients? " Yes " is the answer you want. This is the MOST essential aspect of

therapy for OCD. It is very important that you get a " yes " answer to this

question, because some behavior therapist use other behavioral techniques, but

do

not use ERP.

It goes on to three other questions to ask. You could mention this article

to the doctor or move on to another doctor. The OCD foundation also sent me a

list of doctor's in our area who treat OCD. You might want to give them a

call.

Sheree

[Guest guest]

In a message dated 4/26/2006 2:09:46 P.M. Eastern Standard Time,

Skbradfield@... writes:

The OCD foundation also sent me a

list of doctor's in our area who treat OCD. You might want to give them a

call.

Sheree -

Thanks for the info. Yes, I received the booklet, not recently though. I

got it when I first joined on their website. The problem is when I asked those

questions, I was told by the office staff that this doctor could help with

CBT & ERP. Apparently she was NOT in possession of the community brain that

day.

I received all my initial (new member) information from OC Foundation back

in early February when I joined.... I haven't gotten anything since then. Is

there regular mailings I should be getting?

LT

[Guest guest]

LT,

I am flabbergasted by this, and so disheartened for you. I don't see

where this dr. is coming from at all, how she made the decision that

ERP doesn't work - it DOES, and it must be done in conjunction with

CBT. You work on exposures one compulsion at at time, and yes, new

ones can keep popping up, but you learn how to jump on them quickly

and take control of it. After awhile (maybe weeks, maybe months), you

will see all of the compulsions lessening because the child has

learned how to " boss back " the OCD.

I know the 4 hour drive to Duke must sound crazy, but if that is

absolutely the only place you can turn to, you may want to try it.

Either that or find a good manual that can help YOU learn the

techniques to teach your daughter. This would be a huge undertaking

for you, though; I know a few on this site have done this and maybe

can shed some light on what's involved.

As for the 5 pages to fill out ?????????? no idea what she's

referring to on this, either. I have NEVER filled out any forms like

that, and neither has my daughter. The most she ever had to do was in

the very beginning she had to rate her anxiety level for all her

compulsions/obsessions. I had to keep a journal, listing all her

issues, documenting what compulsion we were working on, and note how

the anxiety level was decreasing. This was not much of a chore, in

fact it was just practical and common sense.

Wish I had more to offer, hope you find some answers.

nna.

NY

>

> Ok people... I'm MORE confused now than ever. Maybe confused AND

frustrated.

>

> First let me say that some of the information I was given by the gal

in the

> front office when I made our appointment in late February was

incorrect.

> This doc does NOT do ERP therapy.

[Guest guest]

LT,

I am not sure. To be honest I remember years ago signing up but I haven't

been receiving the information on a regular basis. We have moved and I don't

even know how they got my new address. HA. All I know is I got two in the mail

today. I thought the information packet on what to look for in a doctor was

VERY interesting.. If they don't send you that packet just e-mail me direct

with your address and I will send you mine..

Sheree

[Guest guest]

We did have to fill out forms and so forth, but -- except for intake -- only in

connection with her involvement in a treatment study. I think this study is also

being done at Duke (we participated through Penn), so maybe this is what the

doctor is thinking about?

P.

nna <mdonlon@...> wrote:

As for the 5 pages to fill out ?????????? no idea what she's

referring to on this, either. I have NEVER filled out any forms like

that, and neither has my daughter. The most she ever had to do was in

the very beginning she had to rate her anxiety level for all her

compulsions/obsessions. I had to keep a journal, listing all her

issues, documenting what compulsion we were working on, and note how

the anxiety level was decreasing. This was not much of a chore, in

fact it was just practical and common sense.

---------------------------------

Celebrate Earth Day everyday! Discover 10 things you can do to help slow

climate change. Earth Day

[Guest guest]

In our case, it was a treatment study where they were comparing the

" traditional " model of CBT/ERP being administered by a psychologist vs being

administered by a psychiatrist, and included a " control " group receiving no

therapy and maintaining status quo as far as any meds they were already on. Our

dd was randomized into the " trial " group with the psychiatrist. Consequently,

when her 12 weeks was up and they felt further progress could be made, she was

offered additional sessions with the psychologist at no cost to us. And, as I

mentioned before, he is particularly interested in her " flavor " of OCD so might

want to continue longer than protocol offers. If not, we might seriously look

into continuing with him on a paying basis -- we hope we could convince our ins

co that it would be in her (and their) best interest to keep her there due to

his specialization and established relationship. But we'll deal with that issue

if/when it arises.

P.

jtlt@... wrote:

In a message dated 4/26/2006 12:34:32 P.M. Eastern Standard Time,

firecooklmp@... writes:

We did have to fill out forms and so forth, but -- except for intake -- only

in connection with her involvement in a treatment study. I think this study

is also being done at Duke (we participated through Penn), so maybe this is

what the doctor is thinking about?

P -

I was wondering that myself because she did say she worked with Dr. March on

a 'study' - but then, in the same breath, I had to wonder how a doctor could

be confused between a 'study' and 'treatment'????

LT

---------------------------------

New Messenger with Voice. Call regular phones from your PC and save big.

[Guest guest]

In reference to paperwork and Duke, was there a study going on? We

participated in a research study and my kids did fill out pages of

questionnaires and some release forms, but it was voluntary, and

treatment follow up was offered but optional.

As for whether or not ERP is effective-she seems to just have no real

knowledge on the subject, but not a big surprise. I think CBT

encompasses a more generalized approach using " exposures " vs

actual " ERP " .

I contacted a list of therapists initially for my dd, and ALL said

they did CBT, and that it could be helpful for ocd and anxiety, but

then turns out they were not familar with " ERP " . What they talked

about was " exposure based therapy " for phobias and anxiety, in a

more generalized way than what is addressed specifically with ERP.

CBT is more encompassing than ERP, but both are needed for ocd. ERP

is specifically aimed at ocd behaviors -what is wroing with tackling

specific behviors?

Not to say a person with ocd cannot receive CBT as well for other

anxieties, social phobia, depressed mood etc.

I have alko heard this idea that " just " getting rid of a compulsion

means it will only crop back in another form if you don't get to

the " root " cause.

I think this is backwards. Blocking/preventing the compulsion IS

exactly what diminishes the " root " (i.e the obsession). Many people

are thinking that rationally tackling the obssession or " root " fear

by discussing the fear or what led to etc, will then diminish the

compulsion- well, ocd is just not that rational.

nancy grace

>

> Ok people... I'm MORE confused now than ever. Maybe confused AND

frustrated.

>

> First let me say that some of the information I was given by the

gal in the

> front office when I made our appointment in late February was

incorrect.

> This doc does NOT do ERP therapy. I was heartbroken. The doctor

asked us what

> we were coming to her for as far as treatment (of course she KNEW

because it

> was all in the written material we gave to her beforehand - I'm

sure this was

> just to " verbalize " it all) I said we wanted our daughter to

start CBT &

> ERP therapy. She replied, " I do cognitive behavioral therapy -- I

don't do

> ERP.... " then she launched into an explanation of why she doesn't

do it. All

> the while I was just thinking " HUH?? " My husband shot a glance at

me, my

> daughter shot a glance at me... both looking like " HUH? " because,

naturally I

> told them this woman did BOTH therapies & how very lucky we were

to find her...

> blah blah blah.

>

> So, not wanting to start an issue right there in front of my

daughter, I

> just let it go. The doctor shared that the only place you can get

that therapy

> around here is Duke (4 hours south of here) and that she had worked

with Dr.

> March (or is that Marsh??) years ago on a study involving ERP.

She said she

> couldn't ever justify having a child fill out 5 pages of forms

after

> everything they did (eat a bowl of cereal, wash their hands, etc).

I can only assume

> that she was exaggerating for effect when she said " 5 pages of

forms every

> time they do anything " ???

>

> She went on to explain that she felt, while ERP concentrates on

one specific

> compulsion, it doesn't work as well (is not as all-encompassing) as

CBT is

> -- which she likened to an 'umbrella' type of treatment - you learn

a

> method/technique that you can then apply to any compulsion. She

said that using ERP

> to treat, say, excessive hand washing would work on hand washing

only - but

> that compulsion could just pop up again as something else, then

what?

>

> She also said that she only handles " short term " patients. If you

need

> treatment for, say, years.... she would send you to someone else.

She then

> touched on a couple other less important issues that I thought had

already been

> addressed by the infamous " front office gal " .... but we know how

that story

> ends.... wrong.

>

> Also, this 1st one-hour appt was just part 1 of the 'interview'

when she

> mostly talks to the parents -- 'part 2' is on May 12th (that's the

soonest we

> could get back in) is another 1 hour appt when she mostly talks to

my daughter.

> THEN treatment will start sometime in June. So basically, we

STILL have no

> help & have NO idea what to do until June.

>

> OH - another thing she said.... when we were told how long we would

have to

> wait for the actual treatment to start, I asked her, " How do I

know, in the

> meantime, if I'm helping or hurting her with how we're handling

this at

> home.... " ( I included a brief explanation of what exactly I did

to help my

> daughter through showers, etc. ) The doctor said, " well, actually

whatever you do

> really is inconsequential. By physically helping her, you're not

making it

> worse or better - you're more like just maintaining it. " (So,

again... no

> answers on WHAT we should or shouldn't be doing.... other than

waiting for

> nearly 2 MORE months.)

>

> In any event, I just don't know WHAT to do now. Oh - also, now my

husband

> says he didn't hear her say this, but I swear I heard her say this -

she said

> that we need to decide which type of therapy we wanted our daughter

to have,

> the CBT that she does, or the ERP down at Duke, because the 2 can't

be done

> together because they are different types of treatment.

>

> Someone needs to explain all this to me ..... PLEASE!!!!!!!! I'm

more

> screwed up on what to do now than I was before.

> LT

>

>

>

[Guest guest]

My dd only recently completed the treatment study at Penn, which I think is also

occurring at Duke and one other place (sorry, forget where). It's on a rolling

basis, so each participant is actively involved for 12 weeks, with a couple of

follow-ups over the next year. So it could still be going on.

P.

jtlt@... wrote:

In a message dated 4/26/2006 1:39:33 P.M. Eastern Standard Time,

nmlinnen@... writes:

In reference to paperwork and Duke, was there a study going on?

-

Thanks for your comments. The study at Duke which the doctor was referring

to was years ago - nothing current. She just brought that up when I

mentioned the ERP. However, there is no mistake that she said she just

couldn't see

making kids fill out " 5 pages of paperwork forms every time they did

something like eat a bowl of cereal or wash their hands. " That comment was

straight

from the doctor.

Thinking about it, I even commented to my husband that it was probably

because it was a 'study' and not just regular old 'treatment'. Again --- how

could a doctor confuse the two???

LT

---------------------------------

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using

Messenger with Voice.

[Guest guest]

In fact, here's a link to the info about the study my dd was in, and is still

recruiting: http://www.clinicaltrials.gov/ct/show/NCT00074815?order=19. Duke is

one of the participating facilities. This info came from the clinicaltrials.gov

site, where I simply searched for OCD.

P.

Price <firecooklmp@...> wrote:

My dd only recently completed the treatment study at Penn, which I think is

also occurring at Duke and one other place (sorry, forget where). It's on a

rolling basis, so each participant is actively involved for 12 weeks, with a

couple of follow-ups over the next year. So it could still be going on.

P.

---------------------------------

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.