Re: Re: she's in the study!

[Guest guest]

Hi . Congratulations on getting into the study. Were you by any chance

given any ideas of what it could morph into? My daughter is 14 and has had

issues with recurrent depression and SI as well, along with the anxiety disorder

always running through. Thanks. Kim

In a message dated 3/5/2005 3:18:32 PM Central Standard Time,

firecooklmp@... writes:

We have also been told that it could very well morph into something else as

she matures. Dr. lin said that there just hasn't been enough study on

this form of OCD to accurately predict. Which is one reason why we are hoping

that he may follow her long-term, especially since it's a particular interest

of his.

[Guest guest]

L doesn't seem to have any of the bad thoughts that so many people on this list

describe -- guess I should be grateful for that! She mainly just does the

question/answer thing, to the point where she won't/can't acknowledge someone

who comes into the room unless she is informed they are there (eg, when I come

home from work, frequently either my husband or son has to " announce " that I am

there, can't accept from me). I don't know why it's considered rare, only that

that's what the psychologist at Penn said. As for answering the questions, well,

that's basically what we've done so far but I know that the therapy is going to

involve teaching her some techniques to " not have to ask all the questions. "

P. in NJ

angela1959ca wrote:

My daughter has the same type of ocd needs to have an answer yes or

no without anything else. Like yours her anxiety goes right up if you

don't answer. Should I answer her or should I leave the anxiety come

up. I'm not sure. I'm afraid of the meltdowns. Also had bad thoughts

ocd. What makes it rare??? Psychiatrist did not tell us anything

about that. What you are describing is the exact same thing my

daughter does with her questions? Sometimes the same one and most of

the time I know she knows the answer.

-- In , Price <firecooklmp@y...>

wrote:

> She asks a LOT of questions. Some are ritualized, others are

just " whatever pops into her head. " Regardless of which type it is,

she NEEDS to have the answer, usually in a yes/no format, or the

anxiety level goes way up. She will continue to repeat the question

until she gets the answer she wants/needs. The independent evaluator

that saw her at the initial stage called it a " need to know. " Often,

we are sure that she knows the answer before asking but is compelled

to ask and be answered. I could go into a lot more detail about

specific questions, but I hope that's enough to give you an idea of

how she presents.

>

> By the way, before she got the OCD diagnosis, not quite a year ago

they were testing her for early onset dementia, because she sounds

like someone with Alzheimer's in her insistence on repeating

questions.

>

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[Guest guest]

Oh, yeah, we've been through the can't make a decision stuff. Still there

sometimes, but not as bad as it was! I once told her (before we had the dx) on a

Sunday to put something in her backpack for Monday. She then proceeded to have

about an hour meltdown over whether or not to zip the backpack when I told her I

didn't care and she could decide.

We have also been told that it could very well morph into something else as she

matures. Dr. lin said that there just hasn't been enough study on this form

of OCD to accurately predict. Which is one reason why we are hoping that he may

follow her long-term, especially since it's a particular interest of his.

Glad to hear that your daughter is doing relatively well now. Hope that trend

continues.

P. in NJ

Sandy wrote:

--

,

My daughter use to ask alot of questions. She needed the reassurance

of an answer even if she knew the answer. She couldn't even decide

what to have for breakfast because it might be the wrong choice and

she would regret it! She questioned everything. Now I know why they

call it the " doubting disease " . Then it morphed into bad thoughts

and that is how we found out about OCD. I use to think she did it to

drive me crazy! Now I am just glad she is getting help and doing

better. I am glad your daughter is in the study! Keep us posted.

Sandy

- In , Price <firecooklmp@y...>

wrote:

> She asks a LOT of questions. Some are ritualized, others are

just " whatever pops into her head. " Regardless of which type it is,

she NEEDS to have the answer, usually in a yes/no format, or the

anxiety level goes way up. She will continue to repeat the question

until she gets the answer she wants/needs. The independent evaluator

that saw her at the initial stage called it a " need to know. " Often,

we are sure that she knows the answer before asking but is compelled

to ask and be answered. I could go into a lot more detail about

specific questions, but I hope that's enough to give you an idea of

how she presents.

>

> By the way, before she got the OCD diagnosis, not quite a year ago

they were testing her for early onset dementia, because she sounds

like someone with Alzheimer's in her insistence on repeating

questions.

>

> P. in NJ

>

> klwicklund77 <k777thorpe@a...> wrote:

>

> That's terrific! To have something like that available must help

you

> feel less alone in your community - knowing there are people

working

> around you trying to find solutions.

>

> What type of unique symptoms does your daughter have?

>

>

>

>

>

>

>

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

accessed at: http://health.groups.yahoo.com/group// .

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

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

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

moderators are Birkhan, Castle, Fowler, Kathy

Hammes, Joye, Kathy Mac, Gail Pesses, and Kathy

. Subscription issues or suggestions may be addressed to

Louis Harkins, list owner, at louisharkins@y... ,

louisharkins@h... , louisharkins@g... .

>

>

>

>

>

[Guest guest]

Nope, no clue at all. I think the truth is that he/we just don't know and can't

know.

P. in NJ

mnmomof1@... wrote:

Hi . Congratulations on getting into the study. Were you by any chance

given any ideas of what it could morph into? My daughter is 14 and has had

issues with recurrent depression and SI as well, along with the anxiety disorder

always running through. Thanks. Kim

In a message dated 3/5/2005 3:18:32 PM Central Standard Time,

firecooklmp@... writes:

We have also been told that it could very well morph into something else as

she matures. Dr. lin said that there just hasn't been enough study on

this form of OCD to accurately predict. Which is one reason why we are hoping

that he may follow her long-term, especially since it's a particular interest

of his.

[Guest guest]

She is already on 50 mg Prozac and stable. Although there will be med

management, the study guidelines don't allow for increase (which is OK, as we

saw real regression when the psych she was seeing tried to raise it to 60 mg),

although they can reduce if it seems appropriate. I think the real purpose of

the study is to compare CBT by the psychiatrist with CBT by the psychologist.

P. in NJ

wrote:

Hi , I'm so glad she's in! I hope she's excited about being in

a " study " also! You might have said, but what " med " are they

planning to use, do they say?

I just know she's going to make such huge progress! Keep us updated

when you can.

> It's official now. My 9yo dd was assigned to a group for the study

at Penn (University of Pennsylvania) this week. There were 3 possible

groups she could have been in: med management only with a

psychiatrist; med management and CBT with the psychiatrist; or med

management with the psychiatrist and CBT with the psychologist. She

has been randomly assigned to the " both with the psychiatrist " group.

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

http://health.groups.yahoo.com/group// .

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

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

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

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

Pesses, and Kathy . Subscription issues or suggestions may be

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

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

[Guest guest]

She is already on 50 mg Prozac and stable. Although there will be med

management, the study guidelines don't allow for increase (which is OK, as we

saw real regression when the psych she was seeing tried to raise it to 60 mg),

although they can reduce if it seems appropriate. I think the real purpose of

the study is to compare CBT by the psychiatrist with CBT by the psychologist.

P. in NJ

wrote:

Hi , I'm so glad she's in! I hope she's excited about being in

a " study " also! You might have said, but what " med " are they

planning to use, do they say?

I just know she's going to make such huge progress! Keep us updated

when you can.

> It's official now. My 9yo dd was assigned to a group for the study

at Penn (University of Pennsylvania) this week. There were 3 possible

groups she could have been in: med management only with a

psychiatrist; med management and CBT with the psychiatrist; or med

management with the psychiatrist and CBT with the psychologist. She

has been randomly assigned to the " both with the psychiatrist " group.

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

http://health.groups.yahoo.com/group// .

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

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

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

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

Pesses, and Kathy . Subscription issues or suggestions may be

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

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

[Guest guest]

Yes, definitions are definitely another part of the story with L. I should

probably clarify, though, that it's not always yes/no, it can also be either/or

(eg, just a few minutes ago she wanted to know whether to put the skirt she wore

to church in the closet or in the hamper). These also have to be answered with

one-word answers (in this case, " closet " ). And heaven help you if you add any

additional information, explanations, etc. She'll just repeat the question until

you " get it right. "

She does also have some other OCD issues. She doesn't appear to have

contamination issues, but does like things to be clean. I am the first to admit

that I have never been a world champion housekeeper, so she's constantly finding

dust to remove, fuzzies/dog hair to pick at, etc. The other night my husband

discovered her cleaning out the toilet -- with her hands! We were both pretty

grossed out and helped her consider what people put in there and why it was a

bad idea. (Of course, we also made her wash her hands THOROUGHLY in the warmest

water she could stand!)

There are also a few sensory issues, the biggest of which is probably the fact

that we're still looking for underwear that she won't tug at (and have a

drawerful of several different sizes and types of nearly-new panties to show for

it). She prefers her showers, etc, on the cool side. And she is very afraid of

heights -- doesn't like being in tall buildings if she can see out the window,

freaked out a few months ago at the prospect of a flight (we opted not to).

I'm sure there are other things, too, that I'm not thinking of. But the main

issue with her is the yes/no, either/or, " I need the answer RIGHT NOW from the

right person " stuff. And that's the part that we've been told is relatively

rare.

FYI, there is also Tourette's in the family (probably me, although no official

diagnosis, definitely my brother and my son). My son, we recently found out,

also has some OCDish type issues going on with his tics (mainly symmetry stuff).

I am also on another support group where people have been talking about constant

questioning associated with the particular LD (NLD) that my son has. It's really

striking me how much crossover there is among and between the various diagnoses

that my kids have.

P.

questlnda wrote:

---

Interesting about the rare type of OCD. My 13 yo son has the need to

hear yes/no responses. He gets anxious if you don't answer within

1000 of a second! Sometimes he has to hear it from one person over

the other. He also will ask questions about the definitions of words

that I really thinks he already know, or if he doesn't, can't even

allow himself to figure out what it means. He admitted some time ago

that asking the meaning of things was an OCD thing. He has the " just

right " ocd along with everthing is touched too softly and he muct

touch himself hard. Sometime I think it his tics. Again, his OCD and

TS are difficult at times to tease apart!

I wish some of the OCD researchers would come to lists like this and

take a informal poll to see how rare it really is. We could such a

wealth of information to these people!

Los Angeles

In , Price <firecooklmp@y...>

wrote:

> She asks a LOT of questions. Some are ritualized, others are

just " whatever pops into her head. " Regardless of which type it is,

she NEEDS to have the answer, usually in a yes/no format, or the

anxiety level goes way up. She will continue to repeat the question

until she gets the answer she wants/needs. The independent evaluator

that saw her at the initial stage called it a " need to know. " Often,

we are sure that she knows the answer before asking but is compelled

to ask and be answered. I could go into a lot more detail about

specific questions, but I hope that's enough to give you an idea of

how she presents.

>

> By the way, before she got the OCD diagnosis, not quite a year ago

they were testing her for early onset dementia, because she sounds

like someone with Alzheimer's in her insistence on repeating

questions.

>

> P. in NJ

>

> klwicklund77 <k777thorpe@a...> wrote:

>

> That's terrific! To have something like that available must help

you

> feel less alone in your community - knowing there are people

working

> around you trying to find solutions.

>

> What type of unique symptoms does your daughter have?

>

>

>

>

>

>

>

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

accessed at: http://health.groups.yahoo.com/group// .

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

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

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

Birkhan, Castle, Fowler, Kathy Hammes, Joye,

Kathy Mac, Gail Pesses, and Kathy . Subscription

issues or suggestions may be addressed to Louis Harkins, list owner,

at louisharkins@y... , louisharkins@h... , louisharkins@g... .

>

>

>

>

>

[Guest guest]

Yes, definitions are definitely another part of the story with L. I should

probably clarify, though, that it's not always yes/no, it can also be either/or

(eg, just a few minutes ago she wanted to know whether to put the skirt she wore

to church in the closet or in the hamper). These also have to be answered with

one-word answers (in this case, " closet " ). And heaven help you if you add any

additional information, explanations, etc. She'll just repeat the question until

you " get it right. "

She does also have some other OCD issues. She doesn't appear to have

contamination issues, but does like things to be clean. I am the first to admit

that I have never been a world champion housekeeper, so she's constantly finding

dust to remove, fuzzies/dog hair to pick at, etc. The other night my husband

discovered her cleaning out the toilet -- with her hands! We were both pretty

grossed out and helped her consider what people put in there and why it was a

bad idea. (Of course, we also made her wash her hands THOROUGHLY in the warmest

water she could stand!)

There are also a few sensory issues, the biggest of which is probably the fact

that we're still looking for underwear that she won't tug at (and have a

drawerful of several different sizes and types of nearly-new panties to show for

it). She prefers her showers, etc, on the cool side. And she is very afraid of

heights -- doesn't like being in tall buildings if she can see out the window,

freaked out a few months ago at the prospect of a flight (we opted not to).

I'm sure there are other things, too, that I'm not thinking of. But the main

issue with her is the yes/no, either/or, " I need the answer RIGHT NOW from the

right person " stuff. And that's the part that we've been told is relatively

rare.

FYI, there is also Tourette's in the family (probably me, although no official

diagnosis, definitely my brother and my son). My son, we recently found out,

also has some OCDish type issues going on with his tics (mainly symmetry stuff).

I am also on another support group where people have been talking about constant

questioning associated with the particular LD (NLD) that my son has. It's really

striking me how much crossover there is among and between the various diagnoses

that my kids have.

P.

questlnda wrote:

---

Interesting about the rare type of OCD. My 13 yo son has the need to

hear yes/no responses. He gets anxious if you don't answer within

1000 of a second! Sometimes he has to hear it from one person over

the other. He also will ask questions about the definitions of words

that I really thinks he already know, or if he doesn't, can't even

allow himself to figure out what it means. He admitted some time ago

that asking the meaning of things was an OCD thing. He has the " just

right " ocd along with everthing is touched too softly and he muct

touch himself hard. Sometime I think it his tics. Again, his OCD and

TS are difficult at times to tease apart!

I wish some of the OCD researchers would come to lists like this and

take a informal poll to see how rare it really is. We could such a

wealth of information to these people!

Los Angeles

In , Price <firecooklmp@y...>

wrote:

> She asks a LOT of questions. Some are ritualized, others are

just " whatever pops into her head. " Regardless of which type it is,

she NEEDS to have the answer, usually in a yes/no format, or the

anxiety level goes way up. She will continue to repeat the question

until she gets the answer she wants/needs. The independent evaluator

that saw her at the initial stage called it a " need to know. " Often,

we are sure that she knows the answer before asking but is compelled

to ask and be answered. I could go into a lot more detail about

specific questions, but I hope that's enough to give you an idea of

how she presents.

>

> By the way, before she got the OCD diagnosis, not quite a year ago

they were testing her for early onset dementia, because she sounds

like someone with Alzheimer's in her insistence on repeating

questions.

>

> P. in NJ

>

> klwicklund77 <k777thorpe@a...> wrote:

>

> That's terrific! To have something like that available must help

you

> feel less alone in your community - knowing there are people

working

> around you trying to find solutions.

>

> What type of unique symptoms does your daughter have?

>

>

>

>

>

>

>

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

accessed at: http://health.groups.yahoo.com/group// .

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

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

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

Birkhan, Castle, Fowler, Kathy Hammes, Joye,

Kathy Mac, Gail Pesses, and Kathy . Subscription

issues or suggestions may be addressed to Louis Harkins, list owner,

at louisharkins@y... , louisharkins@h... , louisharkins@g... .

>

>

>

>

>

[Guest guest]

My brother and I both have OCD. When my brother was younger he had to hear you

say please or thank you. He would make you say it. He also had to have my mom

say, Good night, love you, a certain amount of times. At the time, neither of us

were diagnosised with OCD and it drove my parents crazy. It was interesting to

hear you talk about how your children have similiar rituals. My brother went to

a psychiatrists when he was 6. They never diagnosised him with anything. I was

not diagnosised until I was 16 or 17. It is interesting to look back now and

know that we were not crazy.

Pagie

questlnda wrote:

---

Interesting about the rare type of OCD. My 13 yo son has the need to

hear yes/no responses. He gets anxious if you don't answer within

1000 of a second! Sometimes he has to hear it from one person over

the other. He also will ask questions about the definitions of words

that I really thinks he already know, or if he doesn't, can't even

allow himself to figure out what it means. He admitted some time ago

that asking the meaning of things was an OCD thing. He has the " just

right " ocd along with everthing is touched too softly and he muct

touch himself hard. Sometime I think it his tics. Again, his OCD and

TS are difficult at times to tease apart!

I wish some of the OCD researchers would come to lists like this and

take a informal poll to see how rare it really is. We could such a

wealth of information to these people!

Los Angeles

In , Price <firecooklmp@y...>

wrote:

> She asks a LOT of questions. Some are ritualized, others are

just " whatever pops into her head. " Regardless of which type it is,

she NEEDS to have the answer, usually in a yes/no format, or the

anxiety level goes way up. She will continue to repeat the question

until she gets the answer she wants/needs. The independent evaluator

that saw her at the initial stage called it a " need to know. " Often,

we are sure that she knows the answer before asking but is compelled

to ask and be answered. I could go into a lot more detail about

specific questions, but I hope that's enough to give you an idea of

how she presents.

>

> By the way, before she got the OCD diagnosis, not quite a year ago

they were testing her for early onset dementia, because she sounds

like someone with Alzheimer's in her insistence on repeating

questions.

>

> P. in NJ

>

> klwicklund77 <k777thorpe@a...> wrote:

>

> That's terrific! To have something like that available must help

you

> feel less alone in your community - knowing there are people

working

> around you trying to find solutions.

>

> What type of unique symptoms does your daughter have?

>

>

>

>

>

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