Re: Reassurance questions and relapse

[Guest guest]

Hi Sue,

Could your daughter have PANDAS? An untreated (sometimes with no symptoms) case

of strep could be the problem. Look around at the forums for PANDAS at

www.latitudes.org and see if any of that makes sense to you.

Best wishes,

>

> My 11-year-old daughter was diagnosed with OCD a little over a year ago. We

have a terrific, nationally-known therapist who specializes in children with

OCD. My daughter mainly has contamination fears, as well as some

socially-oriented fears. Lately the number of reassurance questions she asks

have gone back up to near the point they were when she first was diagnosed. I

do know how to respond (or rather how to avoid responding). However, there's

not much decrease. She knows she is supposed to boss back " OC " but she seems to

not want to or care about bossing " OC " back. She doesn't seem to apply what she

has learned in therapy, either. For example, tonight she was all worried that

she touched pee that had run down her leg. She should know from therapy that

touching pee is not actually harmful. Earlier, she was worried that she touched

my arm just after my hand had touched raw chicken (as if germs could run up my

arm and into her body). It is driving me crazy!

>

> Perhaps this is a relapse, and as it is the first since we started therapy

over a year ago, I am not used to dealing with that. Would love some

suggestions as to how to cope with relapses or just stories about the waxing and

waning of OCD so that I do not feel so much like all the time and money spent on

therapy is for naught. It bothers me that she does not seem to want to boss

back her OCD anymore. It does not seem to bother her much, but it sure does

bother me!

>

> Sue

>

[Guest guest]

Sue,

Not what you are looking for maybe, but perhaps if your daughter isn't going

to therapy now, it's time for a tune up. Maybe she just needs some

encouragement to fight it back.

Not sure really, but I've read of the need to occasionally see a therapist

again after doing well for a long time.

Good luck.

[Guest guest]

OCD is not a logical disorder.? I'm sure your daughter knows that her OCD

thoughts do not make sense to others but to her they are very real--to her, pee

is dirty even though she has?been told it isn't.? Managing OCD is difficult and

tiring.? She might be experiencing an especially tough time or she might? be

trying to deal with the thought that she has a life-long disorder.? I have OCD,

as do my two daughters.? The three of us have gone through many ups and downs.?

Sometimes I don't feel like dealing with the OCD and when times are stressful,

it is much harder to deal with.? My kids have gone through times when they " boss

back " effectively and the other times when it is more difficult.? Accept it for

what it is and don't think about what she knows and doesn't know because what

she knows doesn't matter. OCD is cruel and has a way of working its way in when

it has been thwarted.? Even when it is comletely under control, it is something

your daughter will always? be dealing with.? Let her know that you can see that

she is struggling and that you are proud of her for working so hard to fight

it.? Gently remind her that she has tools to deal with it and that she was

really good at dealing with it before.? Battling OCD is hard and she is probably

feeling powerless since her OCD is? back and bothering.? She needs to know that

she isn't to blame and that she can fight is successfully again.? Hang in

there--ups and downs are very normal and she is still very young.? Kelley in NV

RE: Reassurance questions and relapse

Sue,

Not what you are looking for maybe, but perhaps if your daughter isn't going

to therapy now, it's time for a tune up. Maybe she just needs some

encouragement to fight it back.

Not sure really, but I've read of the need to occasionally see a therapist

again after doing well for a long time.

Good luck.

[Guest guest]

Poor kid. It's so scary for them, I can't imagine the dread she feels. Perhaps

your daughter is feeling so much anxiety that she is having trouble remembering

how much therapy helped her before. Sometimes anxious people can only think of

the here and now. Can you make a list of the things she's been able to do when

stable and help her see that she can get better? Explain that the symptoms have

returned because she is stressed for some reason and having a hard time coping.

Tell her that the sooner she takes charge, the quicker and easier it will be.

Sometimes with my son, I go through the questions from Wagner's " Worried No

More " ...How am I feeling (score of 1-10)?; what am I thinking?; what could

possibly happen?; is it likely to happen or has it ever happened before; even if

it did?, what would I do about it?; how am I feeling now? Then he takes deep

breaths and keeps talking himself through it...it's just my anxiety, it's never

happened before and probably won't; even if it did, I will be OK (won't die)

because I know what to do; so there's nothing to be afraid of. The thoughts

will challenge our kids over and over and each time, they can do the self talk,

take a deep breath, get involved in something else to " reset " their thoughts.

Eating and sleeping and exercise are very important too.

Giving reassurance doesn't help, it feeds into the irrational fears and

validates them. Tell her that when her anxiety gets that high over something

not likely to happen, it's OCD and tell her that you can't feed that OCD monster

because that will make things worse.

I hope your therapist can help you convince her to work on these things. Even

if it were PANDAS, traditional therapy has been shown to help.

Best wishes,

Bonnie

>

> My 11-year-old daughter was diagnosed with OCD a little over a year ago. We

have a terrific, nationally-known therapist who specializes in children with

OCD. My daughter mainly has contamination fears, as well as some

socially-oriented fears. Lately the number of reassurance questions she asks

have gone back up to near the point they were when she first was diagnosed. I

do know how to respond (or rather how to avoid responding). However, there's

not much decrease. She knows she is supposed to boss back " OC " but she seems to

not want to or care about bossing " OC " back. She doesn't seem to apply what she

has learned in therapy, either. For example, tonight she was all worried that

she touched pee that had run down her leg. She should know from therapy that

touching pee is not actually harmful. Earlier, she was worried that she touched

my arm just after my hand had touched raw chicken (as if germs could run up my

arm and into her body). It is driving me crazy!

>

> Perhaps this is a relapse, and as it is the first since we started therapy

over a year ago, I am not used to dealing with that. Would love some

suggestions as to how to cope with relapses or just stories about the waxing and

waning of OCD so that I do not feel so much like all the time and money spent on

therapy is for naught. It bothers me that she does not seem to want to boss

back her OCD anymore. It does not seem to bother her much, but it sure does

bother me!

>

> Sue

>

[Guest guest]

Our daughter (8) has PANDAS. We treat her with antibiotics and ERP therapy. We

find that each episode is easier due to the ERP tools she has learned. But each

episode is SO intense at onset, that it can be difficult to get her motivated to

start working again. I think it is hard either way, but it must be discouraging

to feel completely great, and then have it come back. Meg is usually very

resistant to therapy at first. At to top it off, frankly, so am I!

As parents, when we are not in an OCD episode, life is so much easier - I find

myself very frustrated initially when it " comes back " . I think I'd feel that

way whether it was regular OCD flares or PANDAS. It is a huge drain on our

family when it is happening.

So I have to find strength in myself each time, because so long as I am

frustrated, this makes her job that much harder. It's not her fault and it is a

cruel disease that makes an illness seem like a behavorial issue. She has to

externalize the disease and so do I. It did help us to know that this was a

disease based illness, as it helped us understand that it was not just " not

fighting " on her part - that episodes are a much more intense sensation for her,

and it does take more work. My understanding of " regular " OCD is that it can

also have periods of intensity caused by life changes, such as starting back to

school.

Your daughter's obsessions are identical to our dd's.

[Guest guest]

Our daughter is 11 too. OCD thoughts are always just under the surface waiting

to bubble up. Do you notice triggers?

For our daughter there are very predictable triggers that build up.

First I see an increase in checking. If I see panic surface I know the

medication is not working as it should to keep the anxiety

in check.

As long as there is not severe anxiety (panic over a thought)

we use behavior methods to crowd out the OCD.

It is just horrible if the anxiety is severe, any behavior

method (distraction and reward reinforcements)

is not going to work if our daughter is this upset.

Since our daughter does not want to participate in therapy,

I am weekly working with a behavorist to keep her day very

structured and keep her obsessing to a managable level.

Pam

Pam

>

> My 11-year-old daughter was diagnosed with OCD a little over a year ago. We

have a terrific, nationally-known therapist who specializes in children with

OCD. My daughter mainly has contamination fears, as well as some

socially-oriented fears. Lately the number of reassurance questions she asks

have gone back up to near the point they were when she first was diagnosed. I

do know how to respond (or rather how to avoid responding). However, there's

not much decrease. She knows she is supposed to boss back " OC " but she seems to

not want to or care about bossing " OC " back. She doesn't seem to apply what she

has learned in therapy, either. For example, tonight she was all worried that

she touched pee that had run down her leg. She should know from therapy that

touching pee is not actually harmful. Earlier, she was worried that she touched

my arm just after my hand had touched raw chicken (as if germs could run up my

arm and into her body). It is driving me crazy!

>

> Perhaps this is a relapse, and as it is the first since we started therapy

over a year ago, I am not used to dealing with that. Would love some

suggestions as to how to cope with relapses or just stories about the waxing and

waning of OCD so that I do not feel so much like all the time and money spent on

therapy is for naught. It bothers me that she does not seem to want to boss

back her OCD anymore. It does not seem to bother her much, but it sure does

bother me!

>

> Sue

>

[Guest guest]

Sue,

It sounds like your daughter's anxiety/stress level may be flaring for some

reason (return to school, problems at school, friendship issues, family

problems, illness, etc). Has she started middle school? It does sound to me like

it could be a relapse. OCD, even non-PANDAS OCD, does wax and wane; although

stress does not cause OCD, it certainly can make it worse. Sometimes kids get so

tired of fighting OCD that they just don't want to or can't at a given moment.

This past summer, my 9 yo daughter kept telling us she didn't have a reason to

try harder to get out of the bathroom (ie, stop washing). We ended up taking

pictures of the good times (which she still had some of) and posting them in the

bathroom as well as in a photo album for her. We kept reminding her that these

were some of the things she could be doing if she were not washing. Sometimes

kids truly forget that life used to be better or could be better again when they

are feeling lousy right

now (heck, even some of us adults do that, and I speak only for myself here).

Sometimes it is easier for kids to fight mom and dad than to fight this

invisible thing within them called OCD. Also, I can tell you that it is not

that your daughter has forgotten the things she learned in therapy, but that OCD

is illogical. What her logical mind knows (raw chicken cannot travel from your

arm to hers), her OCD mind does not " know. " I can say this from my own personal

experience as I have OCD myself. I can remember telling a therapist that I knew

(while sitting in her office) that checking the stove once was sufficient to

make sure it was off, but that did not help me in my kitchen when my OCD took

charge (this was before ERP was being done). When fears that had decreased

begin to resurface for my daughter or myself, it is generally an indicator of

increased stress/anxiety.

Finally, kids seem to reach a stage when they are feeling a bit better where it

is " good enough " for them and they don't want to work. Our daughter now feels

that washing for 10-12 minutes is " good enough " for her and it is our problem if

we don't like it. We are working to convince her that it is still her problem

as she cannot currently go on sleepovers or extended playdates at someone else's

house. We use a reward system to motivate her to work.

Hope some of this is helpful.

(mom w/ OCD, 9 yo daughter w/ OCD)

>

> Subject: Re: Reassurance questions and relapse

> To:

> Date: Tuesday, October 13, 2009, 6:51 AM

> Hi Sue,

>

> Could your daughter have PANDAS? An untreated (sometimes

> with no symptoms) case of strep could be the problem. Look

> around at the forums for PANDAS at www.latitudes.org and see

> if any of that makes sense to you.

>

> Best wishes,

>

>

>

>

> >

> > My 11-year-old daughter was diagnosed with OCD a

> little over a year ago.  We have a terrific,

> nationally-known therapist who specializes in children with

> OCD.  My daughter mainly has contamination fears, as

> well as some socially-oriented fears.  Lately the

> number of reassurance questions she asks have gone back up

> to near the point they were when she first was

> diagnosed.  I do know how to respond (or rather how to

> avoid responding).  However, there's not much

> decrease.  She knows she is supposed to boss back " OC "

> but she seems to not want to or care about bossing " OC "

> back.  She doesn't seem to apply what she has learned

> in therapy, either.  For example, tonight she was all

> worried that she touched pee that had run down her

> leg.  She should know from therapy that touching pee is

> not actually harmful.  Earlier, she was worried that

> she touched my arm just after my hand had touched raw

> chicken (as if germs could run up my arm and into her

> body).  It is driving me crazy! 

> >

> > Perhaps this is a relapse, and as it is the first

> since we started therapy over a year ago, I am not used to

> dealing with that.  Would love some suggestions as to

> how to cope with relapses or just stories about the waxing

> and waning of OCD so that I do not feel so much like all the

> time and money spent on therapy is for naught.  It

> bothers me that she does not seem to want to boss back her

> OCD anymore.  It does not seem to bother her much, but

> it sure does bother me!

> >

> > Sue

> >

>

>

>

>

> ------------------------------------

>

> Our list archives feature may be accessed at: 

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

> by scrolling down to the archives calendar .  Our links

> may be accessed at http://health.groups.yahoo.com/group//links

> .  Our files may be accessed at

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

> .

> Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ),

Tamar Chansky, Ph.D.( http://www.worrywisekids.org ), and Dan Geller, M.D.

> (http://www2.massgeneral.org/pediatricpsych/staff/geller.html

> ). You may ask a question of any of these mental health

> professionals by inserting the words " Ask Dr.(insert name) "

> in the subject line of a post to the list.  Our list

> moderators are Castle, Judy Chabot, BJ Closner, and

> Barb Nesrallah.   Subscription issues or

> suggestions may be addressed to Louis Harkins, list

> administrator, at louisharkins@...

> .   Our group and related groups are listed

> at http://health.groups.yahoo.com/group/ocdsupportgroups/links

> .  OCF treatment providers list may be viewed at

http://www.ocfoundation.info/treatment-providers-list.php

> .

> NLM-NIH Drug Information Portal may be viewed at

>

http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp?APPLICATION_NAME=drugporta\

l

> .  OCF recommended reading list may be viewed at

http://www.ocfoundation.org/ocd-oc-spectrum-disorders-book-list.html

> .

>

[Guest guest]

Yes, you're right, it is so illogical. It helps a lot to remember that. Also,

I think you are right about her thinking that she is doing good enough and that

she doesn't really feel like trying any harder now. The reassurance questions

(also skin picking, hand washing, etc.) are clearly bothering me more than her!

Probably stress and fatigue from school is bringing it on. (She doesn't start

middle school until next year and I am really worried about that!)She's also

approaching puberty and I understand that can trigger increased symptoms (not

looking forward to that either). I think rewards are a good idea for motivating

her. I think that more germ-related exposures, as someone else suggested, would

also probably help too. That would remind her of the feeling of being

successful in bossing back her OCD.

In a way, it is humorous, when it is not sad or frustrating. It is almost like

multiple personalities. I can be talking to Maggie one second, and the next

second, I am talking to " OC. " We were talking about a socially-oriented

exposure she is doing at school and she was saying it was actually pretty easy

and even fun. I was feeling really pleased, but then when I asked her if she

could do it tomorrow, she ( " OC " actually) said in a very timid voice " I don't

know, it's hard. " ( " OC " is always saying things are hard, when they really

aren't.) It's so odd the way she contradicts herself in such a short period of

time. It's hard to imagine what is going through her mind, but remembering that

it is illogical helps.

Thanks for all your responses. I am pretty sure it is not PANDAS... all that

germ avoiding and hand washing means that she is rarely sick. (Though I guess

it is possible to be sick with no symptoms.) Hasn't missed a day of school in 3

years. During flu season, I'm almost glad for OCD sometimes!

Sue

> > >

> > > My 11-year-old daughter was diagnosed with OCD a

> > little over a year ago.  We have a terrific,

> > nationally-known therapist who specializes in children with

> > OCD.  My daughter mainly has contamination fears, as

> > well as some socially-oriented fears.  Lately the

> > number of reassurance questions she asks have gone back up

> > to near the point they were when she first was

> > diagnosed.  I do know how to respond (or rather how to

> > avoid responding).  However, there's not much

> > decrease.  She knows she is supposed to boss back " OC "

> > but she seems to not want to or care about bossing " OC "

> > back.  She doesn't seem to apply what she has learned

> > in therapy, either.  For example, tonight she was all

> > worried that she touched pee that had run down her

> > leg.  She should know from therapy that touching pee is

> > not actually harmful.  Earlier, she was worried that

> > she touched my arm just after my hand had touched raw

> > chicken (as if germs could run up my arm and into her

> > body).  It is driving me crazy! 

> > >

> > > Perhaps this is a relapse, and as it is the first

> > since we started therapy over a year ago, I am not used to

> > dealing with that.  Would love some suggestions as to

> > how to cope with relapses or just stories about the waxing

> > and waning of OCD so that I do not feel so much like all the

> > time and money spent on therapy is for naught.  It

> > bothers me that she does not seem to want to boss back her

> > OCD anymore.  It does not seem to bother her much, but

> > it sure does bother me!

> > >

> > > Sue

> > >

> >

> >

> >

> >

> > ------------------------------------

> >

> > Our list archives feature may be accessed at: 

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

> > by scrolling down to the archives calendar .  Our links

> > may be accessed at

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

> > .  Our files may be accessed at

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

> > .

> > Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ),

Tamar Chansky, Ph.D.( http://www.worrywisekids.org ), and Dan Geller, M.D.

> > (http://www2.massgeneral.org/pediatricpsych/staff/geller.html

> > ). You may ask a question of any of these mental health

> > professionals by inserting the words " Ask Dr.(insert name) "

> > in the subject line of a post to the list.  Our list

> > moderators are Castle, Judy Chabot, BJ Closner, and

> > Barb Nesrallah.   Subscription issues or

> > suggestions may be addressed to Louis Harkins, list

> > administrator, at louisharkins@...

> > .   Our group and related groups are listed

> > at http://health.groups.yahoo.com/group/ocdsupportgroups/links

> > .  OCF treatment providers list may be viewed at

http://www.ocfoundation.info/treatment-providers-list.php

> > .

> > NLM-NIH Drug Information Portal may be viewed at

> >

http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp?APPLICATION_NAME=drugporta\

l

> > .  OCF recommended reading list may be viewed at

http://www.ocfoundation.org/ocd-oc-spectrum-disorders-book-list.html

> > .

> >