Re: Just right OCD - a few questions...

[Guest guest]

This sounds clearly like Just right stuff and " it starts to feel like an

emergency " is fear- It doesnt have to be tied to a specific fear of something

particular happening. Who isnt affraid in an emergency? She just is having

trouble identifying exactly what the emergency is.

Quick thoughts_

Qvernight appearaance _ have you looked into PANS/ PANDAS?

Yes, they can stay on meds long term, but sometimes need to try several

different ones to find the right ones

Is she doing CBT/ERP on the behaviors?

I find that as you start to get a handle on one compulsion a new one often will

spring up or the same one in a new way, ( ie OCD often worsens for a period of

time after you start to treat it) but also once you start to get better that

" betterness " also generalizes- you dont have to treat EVERY compulsion

individually (thank God)

[Guest guest]

My daughter who is 7 has the just right OCD...it's very hard to understand. She

also exhibits anger towards me when something doesn't feel right to her. Anyone

else have that part? Im not sure typically what others with this respond like

with their parents. Are they crying for help? Using anger and bad words like

mine? I understand the OCD part but the anger and mean words to me in those high

anxiety times is worse at the moment

Sent from my iPhone

On May 20, 2012, at 6:24 AM, " Trabulsy, "

wrote:

> This sounds clearly like Just right stuff and " it starts to feel like an

emergency " is fear- It doesnt have to be tied to a specific fear of something

particular happening. Who isnt affraid in an emergency? She just is having

trouble identifying exactly what the emergency is.

> Quick thoughts_

> Qvernight appearaance _ have you looked into PANS/ PANDAS?

> Yes, they can stay on meds long term, but sometimes need to try several

different ones to find the right ones

> Is she doing CBT/ERP on the behaviors?

>

> I find that as you start to get a handle on one compulsion a new one often

will spring up or the same one in a new way, ( ie OCD often worsens for a period

of time after you start to treat it) but also once you start to get better that

" betterness " also generalizes- you dont have to treat EVERY compulsion

individually (thank God)

>

>

>

>

>

>

[Guest guest]

Hi ,

Not sure if this is your first post or not, but since you mention mostly just

reading posts, I wanted to say welcome!

Our son has " just right " OCD too. We had overnight severe onset, but I realized

after diagnosis that is was there in some form all along. The just right stuff

came out as crazy tantrums, hard to transition, rigid/stubborn behavior, which I

now suspect was driven by OCD. We never saw any rituals at all, but our son has

told us that he did pray, tap and check, but not often. He was always anxious

though, and we had a diagnosis of GAD at about 9yrs.

The needing to have things match up is called " symmetry " type OCD.

High IQ/intelligence and very creative/artistic is apparently quite common I

have read.

Re the anxiety, if you ask your daughter not to do the compulsion you will most

likely see the anxiety shoot up, and this part will become clearer. It does not

need to be about worrying, and with " just right " OCD it is more just a feeling

of something being " off " , and if you ask them to explain they can't. It just

" is " , and doesn't feel right.

Even when someone can " justify " their compulsion, ie. germs I'll get sick so I

can't be around someone who is sick, the concerns/fears won't stop when they

avoid, in fact they'll grow, they'll still obsess that the germs will reach them

somehow, can never be sure etc.

By talking about it, they might gain insight into not giving so much power to

the thought, but it will still be there, unless they stop the compulsion

attached to it, ie avoidance, as it reinforces that the thought has

meaning/truth, and makes it grow in intensity.

The thoughts are not the problem, it's the belief in the thought, and what they

do about them. Treatment is about taking the power away from the thoughts,

being willing to just let them be there and not answer them. Not at all easy

for them.

Our son would say he was not anxious/afraid, but that was because he was

avoiding whatever would trigger his OCD. If we pushed him on something, or he

was exposed somehow, we would see anger more than anxiety, as a teen boy he was

invested in not looking " weak " . He also developed strategies, and had mental

rituals(a form of compulsion), so there was nothing to see. I'd know it though,

because he would become angry, rude, demanding, just generally difficult, and

usually there was what felt like an electrical charge attached - much like in an

emergency as your daughter describes.

Medication can lose it's effectiveness, and can be switched. But if you are

finding results from increasing the dose, then I would suspect a higher dose was

needed. However, ERP therapy is the treatment that is needed to manage OCD.

Medication rarely works to fully manage it, and often when ERP is learned and

used less or no medication is necessary. Just depends.

You don't mention ERP therapy. Is this being done? Unless she learns this tool

to manage the OCD it is an endless marathon of chasing after OCD. Well, it will

feel like this either way, but with ERP being done, diligently, there is a

dialing back of the OCD, and it becomes quieter and less life intrusive. So,

there is an endpoint, in the sense that it is managed, not managing you.

OCD IS generally an ongoing concern, as OCD is a chronic disorder that needs to

be managed. Some have quiet times, and then it will reemerge and even be

bigger, often during times of stress, illness, or just ages and stages. There

is a range of experience on this though, mild to severe, dependent on many

things. It is referred to as waxing and waning, and it can also occur for no

apparent reason, we see this too.

Keep posting your questions. Information is your best defense against OCD.

Knowing how it works, and understanding how it manifests within your own child,

is everything.

Warmly,

Barb

Canada

Son, 20, OCD, LD Plus

>

> I joined this group a while back and mostly read posts. I feel that I am a

little too new to all of this to be very knowledgeable or helpful! My heart goes

out to each and everyone one of you dealing with this insidious disorder.

>

> My daughter (8) seemed to develop OCD this past fall overnight after starting

second grade, though she has always been a complicated child This has been a

very eye opening year for us. After a litany of diagnoses over the years, she

was ultimately dx with combination type ADHD and more recently, OCD. We seem to

have the ADHD fairly well controlled with Intuniv, and she has been taking

Celexa since October for OCD. We recently did some psychoeducational testing

done with the same psychologist she sees for her OCD. We were shocked to hear

that her Full Scale IQ came back at 150 and all of her achievement testing put

her between 4-7 grade. I don't know if, in your expeience, there is a

correlation between high intelligence and OCD?

>

> In all of the reading I have done (including the workbooks we do together) OCD

has been described as an Anxiety Based (what if) disorder. We don't have

that...at all. There doesn't seem to be any anxiety attached to the

compulsions. She is not and never has been a worrier in any sense of the word.

Only, in her words, " it starts to feel like an emergency if she tries to not do

what OCD wants her to do. Is this typical? In the beginning, she did a lot of

weird walking (counting cracks, looking for colors on the path - her school is

tiled and was a total nightmare for her). She also had many rituals surrounding

making her body feel equal,ie. blowing/sucking air out of one side of her mouth

then needing to the other, touching her right leg and then left in the same

spot, etc. After we started celexa, these things went away, but after a few

months she started cracking and pulling on her hands and feet (and wanting to do

other people's hands and feet to, which I pitched a fit about and she dropped).

The hand wringing the therapist told us to live with - that it wasn't hurting

anybody, but it seemed to just get worse and worse, and then she confided in my

that she had started having the urge to rub her teeth on her desk at school - so

we decided to up her level of celexa and now those behaviors seem to be waning.

Does the celexa stop working? Is it realistic to think we can keep her on it

long term? I'm afraid that if we try to stamp out all the behaviors, new ones

will just emerge that could be worse.

> I'm just confused because it seems like most of the OCD I hear about is much

different than our experience. Any insight? Thanks, Nanci

>

[Guest guest]

The anxiety would come in (feeling anxious/uneasy) if she didn't complete her

compulsions (like not touching the other leg when she feels the need to). There

may be no anxiety leading up to actually doing a compulsion, just a " feeling. "

had the " have to do or something bad will happen to me " kind. He could

be relaxing, watching a fav TV show and smiling and suddenly *have* to do a

compulsion, it just pops up in his head, body, whatever.

With medication - what dose of Celexa is she on now? I think, and am no expert,

that as the body adjusts to the medication, there may be increases needed

sometimes. was on the liquid Celexa and so we seemed to end up with

" extra " before time for each prescription refill. He ended up on, I think, 50

mg. 40mg didn't do enough, 60mg didn't add to any benefit, so used 50mg. But

with the extra Celexa, I was able to give him an extra 5mg at times. Like when

the start of the school year was coming up, I knew he needed a little extra, so

would increase a little before school began and then stop a week after; the

general anxiety of school starting, and even " happy " excitement for things could

ramp up his OCD (like Christmas coming up).

For us, it was maybe the 16th week of being on Celexa when it seemed to start

helping the most, and the longer he was on it the more improvement we saw as

behaviors disappeared.

>

> I joined this group a while back and mostly read posts. I feel that I am a

little too new to all of this to be very knowledgeable or helpful! My heart goes

out to each and everyone one of you dealing with this insidious disorder.

>

> My daughter (8) seemed to develop OCD this past fall overnight after starting

second grade, though she has always been a complicated child This has been a

very eye opening year for us. After a litany of diagnoses over the years, she

was ultimately dx with combination type ADHD and more recently, OCD. We seem to

have the

[Guest guest]

Completely relate to this! Same here. No great answers on it either. Tried

to stay calm to not further inflame the situation. Planned for next time, what

could be said or done that would be ok - have to be careful to not develop this

into a ritual though.

When they are " in it " , they are stuck and anxiety ramped up, so there can be no

reasoning on anything, including behavior or language. But if you plan for it,

let them know you will remind them of the plan in the moment, you can at least

feel like you are both on the same page with it.

Our son could tell us he knew what he was doing or saying was wrong but could

not stop himself. I'm not sure if this was a form of compulsion in some cases

or not. We would have him remove himself, and come back when he'd calmed down,

or I would remove myself. We learned to focus on the absolute boundaries, ie

safety and harm, and had to let quite a lot go, until the OCD was better

managed. Not sure where you are at with that.

I find now that our son knows how to manage the OCD, and I know he knows, I can

call " OCD " , tell him to stop or remove himself, or I remove myself, and I can

walk away and not worry that something would happen. I couldn't be sure of that

before, and it was not fun.

I also think anger feels more powerful than anxiety. I know this is the case

with our son, he feels less a victim, he is " fighting " , going outward rather

than inward and self blaming. It does feels like you are being attacked by

them, just as they probably feel the OCD is attacking them. I think you make a

good point, wondering if it is a form of wanting help. I think that makes

sense, as they can feel so out of control. I think it is perhaps about

temperament too, ours has always been pretty intense.

Interested to see others replies on this.

Warmly,

Barb

>

> > This sounds clearly like Just right stuff and " it starts to feel like an

emergency " is fear- It doesnt have to be tied to a specific fear of something

particular happening. Who isnt affraid in an emergency? She just is having

trouble identifying exactly what the emergency is.

> > Quick thoughts_

> > Qvernight appearaance _ have you looked into PANS/ PANDAS?

> > Yes, they can stay on meds long term, but sometimes need to try several

different ones to find the right ones

> > Is she doing CBT/ERP on the behaviors?

> >

> > I find that as you start to get a handle on one compulsion a new one often

will spring up or the same one in a new way, ( ie OCD often worsens for a period

of time after you start to treat it) but also once you start to get better that

" betterness " also generalizes- you dont have to treat EVERY compulsion

individually (thank God)

> >

> >

>

> >

>

>

[Guest guest]

She probably is more outward with her emotions. Feels anxious and then responds

by becoming angry at you for not being to make it better. Then gets stuck with

the OCD. I don't know if she then escalates to an all out tantrum or meltdown.

My son is more inward, tends to put anger towards self and then gets depressed.

He is easier for me to help b/c he doesn't engage me in so much anger, like my

husband (Bipolar, ADD). My husband cannot help him b/c he gets too emotional and

reactive.

I do see the pattern you describe with my husband and some kids at work.

Prevention works well at work and using a plan. Once they escalate, it is best

not to engage b/c at least with my husband and kids at work, they are really not

rational and are stuck in their anger. I know with my husband he wants me to

fix the problem and he doesn't like to feel anxious or uncomfortable. I try to

get him to stay with the emotion and not try to escape out of it. It is easier

for him to control and get angry then feel uncomfortable. He tells me he wants

me to also be angry/fight back b/c that is how his family interacted. I see this

as avoidance of feeling the anxiety/uncomfortable feeling.If your daughter is

used to pushing your buttons, she draws you in, in an attention holding pattern.

If she is looking for help from you to fix her problem (feeling anxious), try to

throw it back at her and keep reminding her that she has the power to fix this

or fight back the OCD. She has to sit with the uncomfortable emotion. " I know

that you can do this. Remember when you... " I have always tried to be the fixer

with my husband so I am trying to set my boundaries, especially with the anger

stuff. She will prob. continue to deflect but keep firm and unemotional and not

get drawn in. I put my hand up for the stop sign and turn around or leave the

room. You want to help her to learn to help herself, if that makes sense. It

is not easy.

>

> > This sounds clearly like Just right stuff and " it starts to feel like an

emergency " is fear- It doesnt have to be tied to a specific fear of something

particular happening. Who isnt affraid in an emergency? She just is having

trouble identifying exactly what the emergency is.

> > Quick thoughts_

> > Qvernight appearaance _ have you looked into PANS/ PANDAS?

> > Yes, they can stay on meds long term, but sometimes need to try several

different ones to find the right ones

> > Is she doing CBT/ERP on the behaviors?

> >

> > I find that as you start to get a handle on one compulsion a new one often

will spring up or the same one in a new way, ( ie OCD often worsens for a period

of time after you start to treat it) but also once you start to get better that

" betterness " also generalizes- you dont have to treat EVERY compulsion

individually (thank God)

> >

> >

> >

> >

> >

> >

>

>

[Guest guest]

Great help . I like the stop sign and remove myself. I am finally realizing

that engaging with her only makes it worse. It feels like two seperate problems

anger and then the OCD. I can't help her because she has so much anger with me.

I'm at a loss will this get better?

Sent from my iPhone

> She probably is more outward with her emotions. Feels anxious and then

responds by becoming angry at you for not being to make it better. Then gets

stuck with the OCD. I don't know if she then escalates to an all out tantrum or

meltdown. My son is more inward, tends to put anger towards self and then gets

depressed. He is easier for me to help b/c he doesn't engage me in so much

anger, like my husband (Bipolar, ADD). My husband cannot help him b/c he gets

too emotional and reactive.

>

> I do see the pattern you describe with my husband and some kids at work.

Prevention works well at work and using a plan. Once they escalate, it is best

not to engage b/c at least with my husband and kids at work, they are really not

rational and are stuck in their anger. I know with my husband he wants me to fix

the problem and he doesn't like to feel anxious or uncomfortable. I try to get

him to stay with the emotion and not try to escape out of it. It is easier for

him to control and get angry then feel uncomfortable. He tells me he wants me to

also be angry/fight back b/c that is how his family interacted. I see this as

avoidance of feeling the anxiety/uncomfortable feeling.If your daughter is used

to pushing your buttons, she draws you in, in an attention holding pattern.

>

> If she is looking for help from you to fix her problem (feeling anxious), try

to throw it back at her and keep reminding her that she has the power to fix

this or fight back the OCD. She has to sit with the uncomfortable emotion. " I

know that you can do this. Remember when you... " I have always tried to be the

fixer with my husband so I am trying to set my boundaries, especially with the

anger stuff. She will prob. continue to deflect but keep firm and unemotional

and not get drawn in. I put my hand up for the stop sign and turn around or

leave the room. You want to help her to learn to help herself, if that makes

sense. It is not easy.

>

>

>

> >

> > > This sounds clearly like Just right stuff and " it starts to feel like an

emergency " is fear- It doesnt have to be tied to a specific fear of something

particular happening. Who isnt affraid in an emergency? She just is having

trouble identifying exactly what the emergency is.

> > > Quick thoughts_

> > > Qvernight appearaance _ have you looked into PANS/ PANDAS?

> > > Yes, they can stay on meds long term, but sometimes need to try several

different ones to find the right ones

> > > Is she doing CBT/ERP on the behaviors?

> > >

> > > I find that as you start to get a handle on one compulsion a new one often

will spring up or the same one in a new way, ( ie OCD often worsens for a period

of time after you start to treat it) but also once you start to get better that

" betterness " also generalizes- you dont have to treat EVERY compulsion

individually (thank God)

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

[Guest guest]

Barb- thanks for your input. I'm so tired of being pushed around by her. At this

point I can't do much with her because if her response to me. I'm not sure if it

is her age being so young and not understanding how to handle. Whatever it is

has to stop because it is hard to handle

Sent from my iPhone

> Completely relate to this! Same here. No great answers on it either. Tried to

stay calm to not further inflame the situation. Planned for next time, what

could be said or done that would be ok - have to be careful to not develop this

into a ritual though.

>

> When they are " in it " , they are stuck and anxiety ramped up, so there can be

no reasoning on anything, including behavior or language. But if you plan for

it, let them know you will remind them of the plan in the moment, you can at

least feel like you are both on the same page with it.

>

> Our son could tell us he knew what he was doing or saying was wrong but could

not stop himself. I'm not sure if this was a form of compulsion in some cases or

not. We would have him remove himself, and come back when he'd calmed down, or I

would remove myself. We learned to focus on the absolute boundaries, ie safety

and harm, and had to let quite a lot go, until the OCD was better managed. Not

sure where you are at with that.

>

> I find now that our son knows how to manage the OCD, and I know he knows, I

can call " OCD " , tell him to stop or remove himself, or I remove myself, and I

can walk away and not worry that something would happen. I couldn't be sure of

that before, and it was not fun.

>

> I also think anger feels more powerful than anxiety. I know this is the case

with our son, he feels less a victim, he is " fighting " , going outward rather

than inward and self blaming. It does feels like you are being attacked by them,

just as they probably feel the OCD is attacking them. I think you make a good

point, wondering if it is a form of wanting help. I think that makes sense, as

they can feel so out of control. I think it is perhaps about temperament too,

ours has always been pretty intense.

>

> Interested to see others replies on this.

>

> Warmly,

> Barb

>

>

> >

> > > This sounds clearly like Just right stuff and " it starts to feel like an

emergency " is fear- It doesnt have to be tied to a specific fear of something

particular happening. Who isnt affraid in an emergency? She just is having

trouble identifying exactly what the emergency is.

> > > Quick thoughts_

> > > Qvernight appearaance _ have you looked into PANS/ PANDAS?

> > > Yes, they can stay on meds long term, but sometimes need to try several

different ones to find the right ones

> > > Is she doing CBT/ERP on the behaviors?

> > >

> > > I find that as you start to get a handle on one compulsion a new one often

will spring up or the same one in a new way, ( ie OCD often worsens for a period

of time after you start to treat it) but also once you start to get better that

" betterness " also generalizes- you dont have to treat EVERY compulsion

individually (thank God)

> > >

> > >

> >

> > >

> >

> >

[Guest guest]

Any ideas on how else to handle anger while young child suffers with whatever

OCD is going through their head? Anyone live in Chicago area suburbs looking for

a support group for moms of kids with OCD??

Sent from my iPhone

> Completely relate to this! Same here. No great answers on it either. Tried to

stay calm to not further inflame the situation. Planned for next time, what

could be said or done that would be ok - have to be careful to not develop this

into a ritual though.

>

> When they are " in it " , they are stuck and anxiety ramped up, so there can be

no reasoning on anything, including behavior or language. But if you plan for

it, let them know you will remind them of the plan in the moment, you can at

least feel like you are both on the same page with it.

>

> Our son could tell us he knew what he was doing or saying was wrong but could

not stop himself. I'm not sure if this was a form of compulsion in some cases or

not. We would have him remove himself, and come back when he'd calmed down, or I

would remove myself. We learned to focus on the absolute boundaries, ie safety

and harm, and had to let quite a lot go, until the OCD was better managed. Not

sure where you are at with that.

>

> I find now that our son knows how to manage the OCD, and I know he knows, I

can call " OCD " , tell him to stop or remove himself, or I remove myself, and I

can walk away and not worry that something would happen. I couldn't be sure of

that before, and it was not fun.

>

> I also think anger feels more powerful than anxiety. I know this is the case

with our son, he feels less a victim, he is " fighting " , going outward rather

than inward and self blaming. It does feels like you are being attacked by them,

just as they probably feel the OCD is attacking them. I think you make a good

point, wondering if it is a form of wanting help. I think that makes sense, as

they can feel so out of control. I think it is perhaps about temperament too,

ours has always been pretty intense.

>

> Interested to see others replies on this.

>

> Warmly,

> Barb

>

>

> >

> > > This sounds clearly like Just right stuff and " it starts to feel like an

emergency " is fear- It doesnt have to be tied to a specific fear of something

particular happening. Who isnt affraid in an emergency? She just is having

trouble identifying exactly what the emergency is.

> > > Quick thoughts_

> > > Qvernight appearaance _ have you looked into PANS/ PANDAS?

> > > Yes, they can stay on meds long term, but sometimes need to try several

different ones to find the right ones

> > > Is she doing CBT/ERP on the behaviors?

> > >

> > > I find that as you start to get a handle on one compulsion a new one often

will spring up or the same one in a new way, ( ie OCD often worsens for a period

of time after you start to treat it) but also once you start to get better that

" betterness " also generalizes- you dont have to treat EVERY compulsion

individually (thank God)

> > >

> > >

> >

> > >

> >

> >

[Guest guest]

I am wondering about the lack of anxiety and your daughter's rituals.  Is there

any ritual she likes that she is NOT allowed to do?  My son at a younger age (4

and 5) used to count and write numbers compulsively- we walked the numbered

parking spots (123, 124, 125) - we just thought he was a brilliant kid, and he

was pretty happy to be doing that stuff.  He also wanted us to do things a

certain way - mom kiss both cheeks, and also kiss Daddy goodbye, and baby

brother...  Or answer questions using exactly the words he told us to say...

 

He is really smart and tests off the charts academically.  But later his rituals

became more fear based - looking at the clock and having to calculate how many

minutes until the next hour - RIGHT NOW and when he wasn't fast enough he

burst into tears.  When we get rituals plus a tantrum and he needs our help to

get it done, we know OCD is in the room.

 

OCD is so freaking bossy!  I would just keep a watch out to see if your

daughter's rituals become stressful.  You can ask, " Do you WANT to be doing this

or do you feel like you HAVE to be doing this? "   You don't have to intervene in

every behavior, just the really disruptive stuff.  This also has a continuum,

she may just be a lot milder on the spectrum.

 

Good luck,

Tara

[Guest guest]

I'm in the Chicago suburbs (near Oakbrook, Hinsdale), and would love to know

about any support groups nearby.

Re: Re: " Just right " OCD - a few questions...

Any ideas on how else to handle anger while young child suffers with whatever

OCD is going through their head? Anyone live in Chicago area suburbs looking for

a support group for moms of kids with OCD??

Sent from my iPhone

On May 20, 2012, at 11:43 AM, " bnesrallah " < barbnesrallah@... > wrote:

> Completely relate to this! Same here. No great answers on it either. Tried to

stay calm to not further inflame the situation. Planned for next time, what

could be said or done that would be ok - have to be careful to not develop this

into a ritual though.

>

> When they are " in it " , they are stuck and anxiety ramped up, so there can be

no reasoning on anything, including behavior or language. But if you plan for

it, let them know you will remind them of the plan in the moment, you can at

least feel like you are both on the same page with it.

>

> Our son could tell us he knew what he was doing or saying was wrong but could

not stop himself. I'm not sure if this was a form of compulsion in some cases or

not. We would have him remove himself, and come back when he'd calmed down, or I

would remove myself. We learned to focus on the absolute boundaries, ie safety

and harm, and had to let quite a lot go, until the OCD was better managed. Not

sure where you are at with that.

>

> I find now that our son knows how to manage the OCD, and I know he knows, I

can call " OCD " , tell him to stop or remove himself, or I remove myself, and I

can walk away and not worry that something would happen. I couldn't be sure of

that before, and it was not fun.

>

> I also think anger feels more powerful than anxiety. I know this is the case

with our son, he feels less a victim, he is " fighting " , going outward rather

than inward and self blaming. It does feels like you are being attacked by them,

just as they probably feel the OCD is attacking them. I think you make a good

point, wondering if it is a form of wanting help. I think that makes sense, as

they can feel so out of control. I think it is perhaps about temperament too,

ours has always been pretty intense.

>

> Interested to see others replies on this.

>

> Warmly,

> Barb

>

>

> >

> > > This sounds clearly like Just right stuff and " it starts to feel like an

emergency " is fear- It doesnt have to be tied to a specific fear of something

particular happening. Who isnt affraid in an emergency? She just is having

trouble identifying exactly what the emergency is.

> > > Quick thoughts_

> > > Qvernight appearaance _ have you looked into PANS/ PANDAS?

> > > Yes, they can stay on meds long term, but sometimes need to try several

different ones to find the right ones

> > > Is she doing CBT/ERP on the behaviors?

> > >

> > > I find that as you start to get a handle on one compulsion a new one often

will spring up or the same one in a new way, ( ie OCD often worsens for a period

of time after you start to treat it) but also once you start to get better that

" betterness " also generalizes- you dont have to treat EVERY compulsion

individually (thank God)

> > >

> > >

> >

> > >

> >

> >

[Guest guest]

I'm in the Chicago suburbs (near Oakbrook, Hinsdale), and would love to know

about any support groups nearby.

Re: Re: " Just right " OCD - a few questions...

Any ideas on how else to handle anger while young child suffers with whatever

OCD is going through their head? Anyone live in Chicago area suburbs looking for

a support group for moms of kids with OCD??

Sent from my iPhone

On May 20, 2012, at 11:43 AM, " bnesrallah " < barbnesrallah@... > wrote:

> Completely relate to this! Same here. No great answers on it either. Tried to

stay calm to not further inflame the situation. Planned for next time, what

could be said or done that would be ok - have to be careful to not develop this

into a ritual though.

>

> When they are " in it " , they are stuck and anxiety ramped up, so there can be

no reasoning on anything, including behavior or language. But if you plan for

it, let them know you will remind them of the plan in the moment, you can at

least feel like you are both on the same page with it.

>

> Our son could tell us he knew what he was doing or saying was wrong but could

not stop himself. I'm not sure if this was a form of compulsion in some cases or

not. We would have him remove himself, and come back when he'd calmed down, or I

would remove myself. We learned to focus on the absolute boundaries, ie safety

and harm, and had to let quite a lot go, until the OCD was better managed. Not

sure where you are at with that.

>

> I find now that our son knows how to manage the OCD, and I know he knows, I

can call " OCD " , tell him to stop or remove himself, or I remove myself, and I

can walk away and not worry that something would happen. I couldn't be sure of

that before, and it was not fun.

>

> I also think anger feels more powerful than anxiety. I know this is the case

with our son, he feels less a victim, he is " fighting " , going outward rather

than inward and self blaming. It does feels like you are being attacked by them,

just as they probably feel the OCD is attacking them. I think you make a good

point, wondering if it is a form of wanting help. I think that makes sense, as

they can feel so out of control. I think it is perhaps about temperament too,

ours has always been pretty intense.

>

> Interested to see others replies on this.

>

> Warmly,

> Barb

>

>

> >

> > > This sounds clearly like Just right stuff and " it starts to feel like an

emergency " is fear- It doesnt have to be tied to a specific fear of something

particular happening. Who isnt affraid in an emergency? She just is having

trouble identifying exactly what the emergency is.

> > > Quick thoughts_

> > > Qvernight appearaance _ have you looked into PANS/ PANDAS?

> > > Yes, they can stay on meds long term, but sometimes need to try several

different ones to find the right ones

> > > Is she doing CBT/ERP on the behaviors?

> > >

> > > I find that as you start to get a handle on one compulsion a new one often

will spring up or the same one in a new way, ( ie OCD often worsens for a period

of time after you start to treat it) but also once you start to get better that

" betterness " also generalizes- you dont have to treat EVERY compulsion

individually (thank God)

> > >

> > >

> >

> > >

> >

> >

[Guest guest]

My 8 yr old son also has the 'just right' OCD and has a Full Scale IQ of 158.

I've noticed his OCD since he was 2 (my husband also has OCD). His anxiety

isn't necessarily apparent either until he gets to 'meltdown' mode. I try to

'manage' things as much as I can so we don't get there, because once he gets to

meltdown mode, there is no reasoning with him. He gets very angry & it's like

dealing with a 2 yr old's temper tantrum. I have to try to distract him to get

him past it. And sometimes we even 'redo' whatever set him off so it was now

done 'correctly'. As he's getting older, he seems to be internalizing more, but

still has meltdowns occasionally.

One time I can visably see his anxiety is if I try to get him to bless himself

at church (we're Catholic). If I bless him or make him do it, he needs to

'undo' it (go backwards). Since blessing yourself backwards is supposedly a

'sign of the devil', I'd rather he not actually do it during Mass (don't need to

upset any little old ladies). But a few weeks ago, I was encouraging him to

bless himself & wait as long as possible before 'undoing' it. He made it over

full minute, but as time went on, you could see the tension coming off of him.

He was getting more & more tense & anxious, until he 'undid' it & completely

relaxed.

I think there is a correlation between high intelligence & OCD. Partially

because a lot of highly intelligent people just think differently than the

'average person'.

Dani

>

We recently did some psychoeducational testing done with the same psychologist

she sees for her OCD. We were shocked to hear that her Full Scale IQ came back

at 150 and all of her achievement testing put her between 4-7 grade. I don't

know if, in your expeience, there is a correlation between high intelligence and

OCD?

>

[Guest guest]

My 8 yr old son also has the 'just right' OCD and has a Full Scale IQ of 158.

I've noticed his OCD since he was 2 (my husband also has OCD). His anxiety

isn't necessarily apparent either until he gets to 'meltdown' mode. I try to

'manage' things as much as I can so we don't get there, because once he gets to

meltdown mode, there is no reasoning with him. He gets very angry & it's like

dealing with a 2 yr old's temper tantrum. I have to try to distract him to get

him past it. And sometimes we even 'redo' whatever set him off so it was now

done 'correctly'. As he's getting older, he seems to be internalizing more, but

still has meltdowns occasionally.

One time I can visably see his anxiety is if I try to get him to bless himself

at church (we're Catholic). If I bless him or make him do it, he needs to

'undo' it (go backwards). Since blessing yourself backwards is supposedly a

'sign of the devil', I'd rather he not actually do it during Mass (don't need to

upset any little old ladies). But a few weeks ago, I was encouraging him to

bless himself & wait as long as possible before 'undoing' it. He made it over

full minute, but as time went on, you could see the tension coming off of him.

He was getting more & more tense & anxious, until he 'undid' it & completely

relaxed.

I think there is a correlation between high intelligence & OCD. Partially

because a lot of highly intelligent people just think differently than the

'average person'.

Dani

>

We recently did some psychoeducational testing done with the same psychologist

she sees for her OCD. We were shocked to hear that her Full Scale IQ came back

at 150 and all of her achievement testing put her between 4-7 grade. I don't

know if, in your expeience, there is a correlation between high intelligence and

OCD?

>

[Guest guest]

My 8 yr old son also has the 'just right' OCD and has a Full Scale IQ of 158.

I've noticed his OCD since he was 2 (my husband also has OCD). His anxiety

isn't necessarily apparent either until he gets to 'meltdown' mode. I try to

'manage' things as much as I can so we don't get there, because once he gets to

meltdown mode, there is no reasoning with him. He gets very angry & it's like

dealing with a 2 yr old's temper tantrum. I have to try to distract him to get

him past it. And sometimes we even 'redo' whatever set him off so it was now

done 'correctly'. As he's getting older, he seems to be internalizing more, but

still has meltdowns occasionally.

One time I can visably see his anxiety is if I try to get him to bless himself

at church (we're Catholic). If I bless him or make him do it, he needs to

'undo' it (go backwards). Since blessing yourself backwards is supposedly a

'sign of the devil', I'd rather he not actually do it during Mass (don't need to

upset any little old ladies). But a few weeks ago, I was encouraging him to

bless himself & wait as long as possible before 'undoing' it. He made it over

full minute, but as time went on, you could see the tension coming off of him.

He was getting more & more tense & anxious, until he 'undid' it & completely

relaxed.

I think there is a correlation between high intelligence & OCD. Partially

because a lot of highly intelligent people just think differently than the

'average person'.

Dani

>

We recently did some psychoeducational testing done with the same psychologist

she sees for her OCD. We were shocked to hear that her Full Scale IQ came back

at 150 and all of her achievement testing put her between 4-7 grade. I don't

know if, in your expeience, there is a correlation between high intelligence and

OCD?

>

[Guest guest]

My daughter doesn't have the meltdowns or tantrums but anger and demands

directed at me. If I start even a sentence with her she cuts me off and says

something mean to me. I am at the point where I can't be around her. Tara- what

do u mean continuum of milder OCD?

Sent from my iPhone

> I am wondering about the lack of anxiety and your daughter's rituals. Is

there any ritual she likes that she is NOT allowed to do? My son at a younger

age (4 and 5) used to count and write numbers compulsively- we walked the

numbered parking spots (123, 124, 125) - we just thought he was a brilliant kid,

and he was pretty happy to be doing that stuff. He also wanted us to do things

a certain way - mom kiss both cheeks, and also kiss Daddy goodbye, and baby

brother... Or answer questions using exactly the words he told us to say...

>

> He is really smart and tests off the charts academically. But later his

rituals became more fear based - looking at the clock and having to calculate

how many minutes until the next hour - RIGHT NOW and when he wasn't fast enough

he burst into tears. When we get rituals plus a tantrum and he needs our help

to get it done, we know OCD is in the room.

>

> OCD is so freaking bossy! I would just keep a watch out to see if your

daughter's rituals become stressful. You can ask, " Do you WANT to be doing this

or do you feel like you HAVE to be doing this? " You don't have to intervene in

every behavior, just the really disruptive stuff. This also has a continuum,

she may just be a lot milder on the spectrum.

>

> Good luck,

> Tara

>

>

[Guest guest]

My daughter doesn't have the meltdowns or tantrums but anger and demands

directed at me. If I start even a sentence with her she cuts me off and says

something mean to me. I am at the point where I can't be around her. Tara- what

do u mean continuum of milder OCD?

Sent from my iPhone

> I am wondering about the lack of anxiety and your daughter's rituals. Is

there any ritual she likes that she is NOT allowed to do? My son at a younger

age (4 and 5) used to count and write numbers compulsively- we walked the

numbered parking spots (123, 124, 125) - we just thought he was a brilliant kid,

and he was pretty happy to be doing that stuff. He also wanted us to do things

a certain way - mom kiss both cheeks, and also kiss Daddy goodbye, and baby

brother... Or answer questions using exactly the words he told us to say...

>

> He is really smart and tests off the charts academically. But later his

rituals became more fear based - looking at the clock and having to calculate

how many minutes until the next hour - RIGHT NOW and when he wasn't fast enough

he burst into tears. When we get rituals plus a tantrum and he needs our help

to get it done, we know OCD is in the room.

>

> OCD is so freaking bossy! I would just keep a watch out to see if your

daughter's rituals become stressful. You can ask, " Do you WANT to be doing this

or do you feel like you HAVE to be doing this? " You don't have to intervene in

every behavior, just the really disruptive stuff. This also has a continuum,

she may just be a lot milder on the spectrum.

>

> Good luck,

> Tara

>

>

[Guest guest]

My daughter doesn't have the meltdowns or tantrums but anger and demands

directed at me. If I start even a sentence with her she cuts me off and says

something mean to me. I am at the point where I can't be around her. Tara- what

do u mean continuum of milder OCD?

Sent from my iPhone

> I am wondering about the lack of anxiety and your daughter's rituals. Is

there any ritual she likes that she is NOT allowed to do? My son at a younger

age (4 and 5) used to count and write numbers compulsively- we walked the

numbered parking spots (123, 124, 125) - we just thought he was a brilliant kid,

and he was pretty happy to be doing that stuff. He also wanted us to do things

a certain way - mom kiss both cheeks, and also kiss Daddy goodbye, and baby

brother... Or answer questions using exactly the words he told us to say...

>

> He is really smart and tests off the charts academically. But later his

rituals became more fear based - looking at the clock and having to calculate

how many minutes until the next hour - RIGHT NOW and when he wasn't fast enough

he burst into tears. When we get rituals plus a tantrum and he needs our help

to get it done, we know OCD is in the room.

>

> OCD is so freaking bossy! I would just keep a watch out to see if your

daughter's rituals become stressful. You can ask, " Do you WANT to be doing this

or do you feel like you HAVE to be doing this? " You don't have to intervene in

every behavior, just the really disruptive stuff. This also has a continuum,

she may just be a lot milder on the spectrum.

>

> Good luck,

> Tara

>

>

[Guest guest]

Thanks for your response! This is such a helpful group!  My daughter doesn't

have the temper tantrums, but does get quite upset if I remind her to try to

fight those urges.  I agree, that people with that level or intelligence, are

wired to think very differently! 

To:

Sent: Monday, May 21, 2012 10:39 AM

Subject: Re: " Just right " OCD - a few questions...

 

My 8 yr old son also has the 'just right' OCD and has a Full Scale IQ of 158.

I've noticed his OCD since he was 2 (my husband also has OCD). His anxiety isn't

necessarily apparent either until he gets to 'meltdown' mode. I try to 'manage'

things as much as I can so we don't get there, because once he gets to meltdown

mode, there is no reasoning with him. He gets very angry & it's like dealing

with a 2 yr old's temper tantrum. I have to try to distract him to get him past

it. And sometimes we even 'redo' whatever set him off so it was now done

'correctly'. As he's getting older, he seems to be internalizing more, but still

has meltdowns occasionally.

One time I can visably see his anxiety is if I try to get him to bless himself

at church (we're Catholic). If I bless him or make him do it, he needs to 'undo'

it (go backwards). Since blessing yourself backwards is supposedly a 'sign of

the devil', I'd rather he not actually do it during Mass (don't need to upset

any little old ladies). But a few weeks ago, I was encouraging him to bless

himself & wait as long as possible before 'undoing' it. He made it over full

minute, but as time went on, you could see the tension coming off of him. He was

getting more & more tense & anxious, until he 'undid' it & completely relaxed.

I think there is a correlation between high intelligence & OCD. Partially

because a lot of highly intelligent people just think differently than the

'average person'.

Dani

>

We recently did some psychoeducational testing done with the same psychologist

she sees for her OCD. We were shocked to hear that her Full Scale IQ came back

at 150 and all of her achievement testing put her between 4-7 grade. I don't

know if, in your expeience, there is a correlation between high intelligence and

OCD?

>

[Guest guest]

Thanks for your response! This is such a helpful group!  My daughter doesn't

have the temper tantrums, but does get quite upset if I remind her to try to

fight those urges.  I agree, that people with that level or intelligence, are

wired to think very differently! 

To:

Sent: Monday, May 21, 2012 10:39 AM

Subject: Re: " Just right " OCD - a few questions...

 

My 8 yr old son also has the 'just right' OCD and has a Full Scale IQ of 158.

I've noticed his OCD since he was 2 (my husband also has OCD). His anxiety isn't

necessarily apparent either until he gets to 'meltdown' mode. I try to 'manage'

things as much as I can so we don't get there, because once he gets to meltdown

mode, there is no reasoning with him. He gets very angry & it's like dealing

with a 2 yr old's temper tantrum. I have to try to distract him to get him past

it. And sometimes we even 'redo' whatever set him off so it was now done

'correctly'. As he's getting older, he seems to be internalizing more, but still

has meltdowns occasionally.

One time I can visably see his anxiety is if I try to get him to bless himself

at church (we're Catholic). If I bless him or make him do it, he needs to 'undo'

it (go backwards). Since blessing yourself backwards is supposedly a 'sign of

the devil', I'd rather he not actually do it during Mass (don't need to upset

any little old ladies). But a few weeks ago, I was encouraging him to bless

himself & wait as long as possible before 'undoing' it. He made it over full

minute, but as time went on, you could see the tension coming off of him. He was

getting more & more tense & anxious, until he 'undid' it & completely relaxed.

I think there is a correlation between high intelligence & OCD. Partially

because a lot of highly intelligent people just think differently than the

'average person'.

Dani

>

We recently did some psychoeducational testing done with the same psychologist

she sees for her OCD. We were shocked to hear that her Full Scale IQ came back

at 150 and all of her achievement testing put her between 4-7 grade. I don't

know if, in your expeience, there is a correlation between high intelligence and

OCD?

>

[Guest guest]

Hi

She was on 20 mg of celexa for several months.  At first we saw marked

improvement, then OCD snuck back in.  We just upped it to 30 mg.  She is 8

years old and weighs about 65 lbs.  I hate giving her medication, but I know

that she needs it.  I think I see some improvement but it has only been

increased for a few days. We tried inositol (750 in morning and 1500 in

evening).  I did not see any benefit, and actually things got worse, though

that could have been purely coincidental.  Thanks for the reqponse!  Nanci

To:

Sent: Sunday, May 20, 2012 11:26 AM

Subject: Re: " Just right " OCD - a few questions...

 

The anxiety would come in (feeling anxious/uneasy) if she didn't complete her

compulsions (like not touching the other leg when she feels the need to). There

may be no anxiety leading up to actually doing a compulsion, just a " feeling. "

had the " have to do or something bad will happen to me " kind. He could

be relaxing, watching a fav TV show and smiling and suddenly *have* to do a

compulsion, it just pops up in his head, body, whatever.

With medication - what dose of Celexa is she on now? I think, and am no expert,

that as the body adjusts to the medication, there may be increases needed

sometimes. was on the liquid Celexa and so we seemed to end up with

" extra " before time for each prescription refill. He ended up on, I think, 50

mg. 40mg didn't do enough, 60mg didn't add to any benefit, so used 50mg. But

with the extra Celexa, I was able to give him an extra 5mg at times. Like when

the start of the school year was coming up, I knew he needed a little extra, so

would increase a little before school began and then stop a week after; the

general anxiety of school starting, and even " happy " excitement for things could

ramp up his OCD (like Christmas coming up).

For us, it was maybe the 16th week of being on Celexa when it seemed to start

helping the most, and the longer he was on it the more improvement we saw as

behaviors disappeared.

>

> I joined this group a while back and mostly read posts. I feel that I am a

little too new to all of this to be very knowledgeable or helpful! My heart goes

out to each and everyone one of you dealing with this insidious disorder.

>

> My daughter (8) seemed to develop OCD this past fall overnight after starting

second grade, though she has always been a complicated child This has been a

very eye opening year for us. After a litany of diagnoses over the years, she

was ultimately dx with combination type ADHD and more recently, OCD. We seem to

have the

[Guest guest]

Thank you, Barb, for your thoughtful reply and welcome.  I'm so glad I found

this group.  We have been through a lot with our daughter, and I have to say, I

never saw this coming!  At first we thought that the behaviors were tics

perhaps caused by stimulant medication for ADHD.  It's been a long learning

process!  Thankfully, my daughter is very open to discussing it, working on it,

and being honest about her feelings.  I know this might not be the case as she

gets older.  This all seems so much for an 8 year old to deal with! 

Just right and symmetry OCD are definitely what we are dealing with.  Do the

other typed often follow suit?  Every time she tells me somthing she feels

guilty about or mentions the word germ I start to internally panic. 

Thankfully, we have a wonderful doctor and therapist on board.  As far as ERP

- she did see a psychologist about 6 times and they worked on ERP and ways to

talk back to OCD.  She knows, in theory how to do this.  I guess I'm not sure

how much to intervene in seeing it through.  She is much improved, and the

psychologist thought she was stable enough and that the few things that remained

(ie cracking knuckles/feet, though pretty constant) weren't too intrusive or

disruptive to her life.  Like everyone, we're so busy!  I have three kids. 

She plays softball, soccer, dances, and additionally has homework/playdates,

etc.  It's hard to know how much of an issue to make out of it.  That's what I

struggle with.  Do I leave it

alone and trust that she's doing her best to manage it, or do I stay an active

part of the process?  Any advice?  Thanks, nanci

To:

Sent: Sunday, May 20, 2012 11:25 AM

Subject: Re: " Just right " OCD - a few questions...

 

Hi ,

Not sure if this is your first post or not, but since you mention mostly just

reading posts, I wanted to say welcome!

Our son has " just right " OCD too. We had overnight severe onset, but I realized

after diagnosis that is was there in some form all along. The just right stuff

came out as crazy tantrums, hard to transition, rigid/stubborn behavior, which I

now suspect was driven by OCD. We never saw any rituals at all, but our son has

told us that he did pray, tap and check, but not often. He was always anxious

though, and we had a diagnosis of GAD at about 9yrs.

The needing to have things match up is called " symmetry " type OCD.

High IQ/intelligence and very creative/artistic is apparently quite common I

have read.

Re the anxiety, if you ask your daughter not to do the compulsion you will most

likely see the anxiety shoot up, and this part will become clearer. It does not

need to be about worrying, and with " just right " OCD it is more just a feeling

of something being " off " , and if you ask them to explain they can't. It just

" is " , and doesn't feel right.

Even when someone can " justify " their compulsion, ie. germs I'll get sick so I

can't be around someone who is sick, the concerns/fears won't stop when they

avoid, in fact they'll grow, they'll still obsess that the germs will reach them

somehow, can never be sure etc.

By talking about it, they might gain insight into not giving so much power to

the thought, but it will still be there, unless they stop the compulsion

attached to it, ie avoidance, as it reinforces that the thought has

meaning/truth, and makes it grow in intensity.

The thoughts are not the problem, it's the belief in the thought, and what they

do about them. Treatment is about taking the power away from the thoughts, being

willing to just let them be there and not answer them. Not at all easy for them.

Our son would say he was not anxious/afraid, but that was because he was

avoiding whatever would trigger his OCD. If we pushed him on something, or he

was exposed somehow, we would see anger more than anxiety, as a teen boy he was

invested in not looking " weak " . He also developed strategies, and had mental

rituals(a form of compulsion), so there was nothing to see. I'd know it though,

because he would become angry, rude, demanding, just generally difficult, and

usually there was what felt like an electrical charge attached - much like in an

emergency as your daughter describes.

Medication can lose it's effectiveness, and can be switched. But if you are

finding results from increasing the dose, then I would suspect a higher dose was

needed. However, ERP therapy is the treatment that is needed to manage OCD.

Medication rarely works to fully manage it, and often when ERP is learned and

used less or no medication is necessary. Just depends.

You don't mention ERP therapy. Is this being done? Unless she learns this tool

to manage the OCD it is an endless marathon of chasing after OCD. Well, it will

feel like this either way, but with ERP being done, diligently, there is a

dialing back of the OCD, and it becomes quieter and less life intrusive. So,

there is an endpoint, in the sense that it is managed, not managing you.

OCD IS generally an ongoing concern, as OCD is a chronic disorder that needs to

be managed. Some have quiet times, and then it will reemerge and even be bigger,

often during times of stress, illness, or just ages and stages. There is a range

of experience on this though, mild to severe, dependent on many things. It is

referred to as waxing and waning, and it can also occur for no apparent reason,

we see this too.

Keep posting your questions. Information is your best defense against OCD.

Knowing how it works, and understanding how it manifests within your own child,

is everything.

Warmly,

Barb

Canada

Son, 20, OCD, LD Plus

>

> I joined this group a while back and mostly read posts. I feel that I am a

little too new to all of this to be very knowledgeable or helpful! My heart goes

out to each and everyone one of you dealing with this insidious disorder.

>

> My daughter (8) seemed to develop OCD this past fall overnight after starting

second grade, though she has always been a complicated child This has been a

very eye opening year for us. After a litany of diagnoses over the years, she

was ultimately dx with combination type ADHD and more recently, OCD. We seem to

have the ADHD fairly well controlled with Intuniv, and she has been taking

Celexa since October for OCD. We recently did some psychoeducational testing

done with the same psychologist she sees for her OCD. We were shocked to hear

that her Full Scale IQ came back at 150 and all of her achievement testing put

her between 4-7 grade. I don't know if, in your expeience, there is a

correlation between high intelligence and OCD?

>

> In all of the reading I have done (including the workbooks we do together) OCD

has been described as an Anxiety Based (what if) disorder. We don't have

that...at all. There doesn't seem to be any anxiety attached to the compulsions.

She is not and never has been a worrier in any sense of the word. Only, in her

words, " it starts to feel like an emergency if she tries to not do what OCD

wants her to do. Is this typical? In the beginning, she did a lot of weird

walking (counting cracks, looking for colors on the path - her school is tiled

and was a total nightmare for her). She also had many rituals surrounding making

her body feel equal,ie. blowing/sucking air out of one side of her mouth then

needing to the other, touching her right leg and then left in the same spot,

etc. After we started celexa, these things went away, but after a few months she

started cracking and pulling on her hands and feet (and wanting to do other

people's hands and feet to,

which I pitched a fit about and she dropped). The hand wringing the therapist

told us to live with - that it wasn't hurting anybody, but it seemed to just get

worse and worse, and then she confided in my that she had started having the

urge to rub her teeth on her desk at school - so we decided to up her level of

celexa and now those behaviors seem to be waning. Does the celexa stop working?

Is it realistic to think we can keep her on it long term? I'm afraid that if we

try to stamp out all the behaviors, new ones will just emerge that could be

worse.

> I'm just confused because it seems like most of the OCD I hear about is much

different than our experience. Any insight? Thanks, Nanci

>

[Guest guest]

Thank you, Barb, for your thoughtful reply and welcome.  I'm so glad I found

this group.  We have been through a lot with our daughter, and I have to say, I

never saw this coming!  At first we thought that the behaviors were tics

perhaps caused by stimulant medication for ADHD.  It's been a long learning

process!  Thankfully, my daughter is very open to discussing it, working on it,

and being honest about her feelings.  I know this might not be the case as she

gets older.  This all seems so much for an 8 year old to deal with! 

Just right and symmetry OCD are definitely what we are dealing with.  Do the

other typed often follow suit?  Every time she tells me somthing she feels

guilty about or mentions the word germ I start to internally panic. 

Thankfully, we have a wonderful doctor and therapist on board.  As far as ERP

- she did see a psychologist about 6 times and they worked on ERP and ways to

talk back to OCD.  She knows, in theory how to do this.  I guess I'm not sure

how much to intervene in seeing it through.  She is much improved, and the

psychologist thought she was stable enough and that the few things that remained

(ie cracking knuckles/feet, though pretty constant) weren't too intrusive or

disruptive to her life.  Like everyone, we're so busy!  I have three kids. 

She plays softball, soccer, dances, and additionally has homework/playdates,

etc.  It's hard to know how much of an issue to make out of it.  That's what I

struggle with.  Do I leave it

alone and trust that she's doing her best to manage it, or do I stay an active

part of the process?  Any advice?  Thanks, nanci

To:

Sent: Sunday, May 20, 2012 11:25 AM

Subject: Re: " Just right " OCD - a few questions...

 

Hi ,

Not sure if this is your first post or not, but since you mention mostly just

reading posts, I wanted to say welcome!

Our son has " just right " OCD too. We had overnight severe onset, but I realized

after diagnosis that is was there in some form all along. The just right stuff

came out as crazy tantrums, hard to transition, rigid/stubborn behavior, which I

now suspect was driven by OCD. We never saw any rituals at all, but our son has

told us that he did pray, tap and check, but not often. He was always anxious

though, and we had a diagnosis of GAD at about 9yrs.

The needing to have things match up is called " symmetry " type OCD.

High IQ/intelligence and very creative/artistic is apparently quite common I

have read.

Re the anxiety, if you ask your daughter not to do the compulsion you will most

likely see the anxiety shoot up, and this part will become clearer. It does not

need to be about worrying, and with " just right " OCD it is more just a feeling

of something being " off " , and if you ask them to explain they can't. It just

" is " , and doesn't feel right.

Even when someone can " justify " their compulsion, ie. germs I'll get sick so I

can't be around someone who is sick, the concerns/fears won't stop when they

avoid, in fact they'll grow, they'll still obsess that the germs will reach them

somehow, can never be sure etc.

By talking about it, they might gain insight into not giving so much power to

the thought, but it will still be there, unless they stop the compulsion

attached to it, ie avoidance, as it reinforces that the thought has

meaning/truth, and makes it grow in intensity.

The thoughts are not the problem, it's the belief in the thought, and what they

do about them. Treatment is about taking the power away from the thoughts, being

willing to just let them be there and not answer them. Not at all easy for them.

Our son would say he was not anxious/afraid, but that was because he was

avoiding whatever would trigger his OCD. If we pushed him on something, or he

was exposed somehow, we would see anger more than anxiety, as a teen boy he was

invested in not looking " weak " . He also developed strategies, and had mental

rituals(a form of compulsion), so there was nothing to see. I'd know it though,

because he would become angry, rude, demanding, just generally difficult, and

usually there was what felt like an electrical charge attached - much like in an

emergency as your daughter describes.

Medication can lose it's effectiveness, and can be switched. But if you are

finding results from increasing the dose, then I would suspect a higher dose was

needed. However, ERP therapy is the treatment that is needed to manage OCD.

Medication rarely works to fully manage it, and often when ERP is learned and

used less or no medication is necessary. Just depends.

You don't mention ERP therapy. Is this being done? Unless she learns this tool

to manage the OCD it is an endless marathon of chasing after OCD. Well, it will

feel like this either way, but with ERP being done, diligently, there is a

dialing back of the OCD, and it becomes quieter and less life intrusive. So,

there is an endpoint, in the sense that it is managed, not managing you.

OCD IS generally an ongoing concern, as OCD is a chronic disorder that needs to

be managed. Some have quiet times, and then it will reemerge and even be bigger,

often during times of stress, illness, or just ages and stages. There is a range

of experience on this though, mild to severe, dependent on many things. It is

referred to as waxing and waning, and it can also occur for no apparent reason,

we see this too.

Keep posting your questions. Information is your best defense against OCD.

Knowing how it works, and understanding how it manifests within your own child,

is everything.

Warmly,

Barb

Canada

Son, 20, OCD, LD Plus

>

> I joined this group a while back and mostly read posts. I feel that I am a

little too new to all of this to be very knowledgeable or helpful! My heart goes

out to each and everyone one of you dealing with this insidious disorder.

>

> My daughter (8) seemed to develop OCD this past fall overnight after starting

second grade, though she has always been a complicated child This has been a

very eye opening year for us. After a litany of diagnoses over the years, she

was ultimately dx with combination type ADHD and more recently, OCD. We seem to

have the ADHD fairly well controlled with Intuniv, and she has been taking

Celexa since October for OCD. We recently did some psychoeducational testing

done with the same psychologist she sees for her OCD. We were shocked to hear

that her Full Scale IQ came back at 150 and all of her achievement testing put

her between 4-7 grade. I don't know if, in your expeience, there is a

correlation between high intelligence and OCD?

>

> In all of the reading I have done (including the workbooks we do together) OCD

has been described as an Anxiety Based (what if) disorder. We don't have

that...at all. There doesn't seem to be any anxiety attached to the compulsions.

She is not and never has been a worrier in any sense of the word. Only, in her

words, " it starts to feel like an emergency if she tries to not do what OCD

wants her to do. Is this typical? In the beginning, she did a lot of weird

walking (counting cracks, looking for colors on the path - her school is tiled

and was a total nightmare for her). She also had many rituals surrounding making

her body feel equal,ie. blowing/sucking air out of one side of her mouth then

needing to the other, touching her right leg and then left in the same spot,

etc. After we started celexa, these things went away, but after a few months she

started cracking and pulling on her hands and feet (and wanting to do other

people's hands and feet to,

which I pitched a fit about and she dropped). The hand wringing the therapist

told us to live with - that it wasn't hurting anybody, but it seemed to just get

worse and worse, and then she confided in my that she had started having the

urge to rub her teeth on her desk at school - so we decided to up her level of

celexa and now those behaviors seem to be waning. Does the celexa stop working?

Is it realistic to think we can keep her on it long term? I'm afraid that if we

try to stamp out all the behaviors, new ones will just emerge that could be

worse.

> I'm just confused because it seems like most of the OCD I hear about is much

different than our experience. Any insight? Thanks, Nanci

>

[Guest guest]

Hi ,

Just wanted to answer your questions to me...

As far as other types of OCD following, no, this is not necessarily the case.

Some have certain types that remain, maybe other things come and go, or it can

switch to something different altogether. We've seen just about every form, but

the just right stuff and contamination seem to hang around the most, at least

that's the kind of thing I see, never know what all is going in inside that head

I've been told by someone with OCD since 3yrs, now 40, that it can become more

sophisticated. Ages and stages bring new concerns, and can attack core issues

like image, self worth, social concerns etc. Really no limit or boundary on

what the OCD can go after. BUT, if they have learned the tool of ERP they are

prepared, and learn how to work with whatever comes up.

In terms of staying on top of the ERP and " staying an active part of the

process " - I say YES, ABSOLUTELY stay on top of it. Not to make you fear the

worst, but what starts small can grow big so fast and just take over. So, it

pays to be proactive, big time! If I were you, I would check in with that ERP

therapist at the hint of things growing again, and I would check in with your

daughter weekly, if not daily to ask something like, where is the OCD between 0

and 10?

I really don't think you can rely on them to do the ERP diligently, without some

follow up, kind of surprised that the therapist did 6 visits and that was it,

would think there would be a check in again in a month, at minimum. Kids are

notorious for not doing their ERP homework - it's hard work!

By the way, her confessing to you about stuff she feels guilty about, is a form

of compulsion. You want to limit this, tell he she can tell you once, and see

what happens. If she " needs " to tell more, work on reducing the number of

times, or having her wait for 30sec-1min until she tells, and keep increasing.

These are things you can do to work the ERP.

With the just right stuff, and with anything really, it can be hidden, even to a

doctor. Sometimes you don't know what all is going on, or how big it has

gotten, until it has been going on for some time. Sometimes even the person

with OCD doesn't recognize something as OCD. So, again, you just can't be too

cautious on this front, is how I feel about it. AND it can be so much harder to

work with them the older they get - our local support group is filled with

parents of kids 14 and up, which tells the tale there

You mentioned in your first post, the hand wringing, and other compulsions, that

went away with the celexa. Thing is, the OCD will find something else to go

after, and if she is not actively doing ERP it will grow. Medication is not the

answer, only part of it for some. In fact if there are no O/C to work on, they

will often reduce the medication dose, so they can actively work the ERP. This

is critical to the long term management of OCD. Don't rely on the medication to

keep things in check.

Ok, I think I've got my point across, re ERP. Did I mention you can't be too

cautious....

The fact that your daughter is so active and functioning well is good. It means

that she is living her life, not too restricted, it sounds. Usually they are

" exposed " to OCD stuff throughout their day, which is what needs to happen, and

then they need to manage it. Just check in to see how this is for her, so you

can feel you are keeping track too.

Warmly,

Barb

>

> Thank you, Barb, for your thoughtful reply and welcome.  I'm so glad I found

this group.  We have been through a lot with our daughter, and I have to say, I

never saw this coming!  At first we thought that the behaviors were tics

perhaps caused by stimulant medication for ADHD.  It's been a long learning

process!  Thankfully, my daughter is very open to discussing it, working on it,

and being honest about her feelings.  I know this might not be the case as she

gets older.  This all seems so much for an 8 year old to deal with! 

> Just right and symmetry OCD are definitely what we are dealing with.  Do the

other typed often follow suit?  Every time she tells me somthing she feels

guilty about or mentions the word germ I start to internally panic. 

Thankfully, we have a wonderful doctor and therapist on board.  As far as ERP

- she did see a psychologist about 6 times and they worked on ERP and ways to

talk back to OCD.  She knows, in theory how to do this.  I guess I'm not sure

how much to intervene in seeing it through.  She is much improved, and the

psychologist thought she was stable enough and that the few things that remained

(ie cracking knuckles/feet, though pretty constant) weren't too intrusive or

disruptive to her life.  Like everyone, we're so busy!  I have three kids. 

She plays softball, soccer, dances, and additionally has homework/playdates,

etc.  It's hard to know how much of an issue to make out of it.  That's what I

struggle with.  Do I leave it

> alone and trust that she's doing her best to manage it, or do I stay an

active part of the process?  Any advice?  Thanks, nanci

>