Re: Nighttime problems

[Guest guest]

Hi Cheryl,

I'm sorry you're going through such challenging times. It's so hard to

watch your child hurt! I haven't dealt with depression but my daughter

Kelsey has troubles going to sleeep too. While she has made great progress

on OCD during the day, her anxiety seems to well up at bedtime. I resisted

making bedtime concessions at first because she's always been great about

going to bed and I was worried she'd get accustomed to too much extra

attention at bedtime and take advantage.

Finally, I realized she really was scared to be alone and now my husband

and I just take turns staying with her. I get a book (for myself) and get

in bed with her! We did this nightly for a few weeks and it has started to

take the fear away. Finally I told her that I thought we should work on her

getting to sleep by herself or we'd have to refuse sleepover invitations

this summer. She agreed, so now I stay for a little while and turn on a

bedtime tape and so far it's working.

Do you think could be upset at bedtime because she doesn't like to be

alone with her thoughts? If so, maybe you could try staying with her until

she sleeps for awhile to comfort her. It's hard to sort out the

manipulative behavior from the real issues, but it sounds to me like she

needs to share her feelings about being depressed. I think your journals

are a great idea and will build the closeness that can only help.

Take care of yourself,

in San Diego

[Guest guest]

Hi Cheryl, much of what you wrote in your post is familiar in our home. My

daughter is 5 and has also spoken of giving up, feeling like a failure, not

believing anyone or anything can help, etc., and she is completely unaware

of levels of severity of this disorder. I believe this is can be plain

discouragement and the constant struggle with ocd, it could also be

depression. When on Prozac my daughter took a higher dose, 50 mg before we

decided to take her off of it due to side-effects. Your child may need a

dose increase, cbt would help a lot, I was glad to read you have an

appointment soon and plan to discuss these things with her doctor.

Regarding the sleeping problems, my daughter also becomes very anxious

toward bedtime, tries to initiate long conversations, and does everything

she can to delay the inevitable. Once in bed, she tosses and turns,

performs compulsions, etc., and it was taking 2 hours or more before she

could fall asleep. I began sitting with her, I insist she keep her eyes

closed, no talking, lie still, etc.; since I began doing this she usually is

asleep in 15 minutes or so and sleeps through the night. This may not be

the ideal solution but it works for us and allows everyone to get a decent

night's sleep, plus I get a couple of hours in the evening to myself to

recharge my own batteries . . . I believe no one can do their best when

chronically short of sleep and felt that we needed to go with whatever

worked to solve this particular problem ocd brought into our lives.

Kathy R. in Indiana

Nighttime problems

> From: Glenn Kathe <cmckim@...>

>

> Hi Everyone

> I have written you a few times and all of you are so helpful,

> Thank-You. To bring you up to date, My daughter 10 years old is

> on Prozac. She first responded very well to it until we increased it

> from 10mg. to 20mg. Her doctor Ellen said to bring it back down to

> 10mg. We did that but noticed she was still feeling very edgy, almost

> like she wasn't even taking it. so now she is back up to 20mg.

> and I had a talk the other night and she said she just feels like

> giving up. She thinks that she has done something really terrible to be

> " cursed " with OCD and Depression. For the last week she seems to be

> doing fine then at bedtime she starts crying and wants to talk. I am at

> a loss for what to say to her, I feel she is trying to see how long she

> can put off going to bed. So I give her 5 minutes of discussion then

> tell her she has to try to go to sleep, of course then I get the " what

> if " I can't go to sleep and so on.

> When she told me she feels like giving up, I felt like I was going to

> die. I told her she can't give up because then she is giving up on me

> and her family, and that she has done nothing terrible to deserve this

> it is just something that happened, and be grateful you can't die from

> this disease! I have also told her we are going to get thru this

> together, all of us. I want her to write down her feelings whether sad

> or happy mad or glad, and I will do the same thing as to my feelings and

> how I feel she is,then we can get together once a week and talk about

> it.

> Anyway, 1} How do you deal with someone who says they just want to give

> up? 2}How do I make bedtime easier for her? She always comments on how

> she hates to go to sleep.

> Thursday she see's her doctor, and I will make sure she knows about

> this. 's father thinks it is a case of she has heard to much and

> knows to much about the different severities of this disorder, so she is

> trying to get more attention by saying she feels like giving up, because

> she knows that will break me down {and she can stay up longer}. I am

> not sure what to think!!

> Also I have noticed can have an absolutley wonderful weekend with

> no problems then all of sudden Sunday night comes and she is so upset

> and crying {it's bedtime again}. Sometimes I wonder if her brain is

> somehow telling her she should feel guilty for having such a good, fun

> time?

> Suggestions PLEASE, I am soo confused

> Thanks again for listening!!!

> Cheryl

> cmckim@...

>

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[Guest guest]

Nighttime problems

>From: Glenn Kathe <cmckim@...>

>

>Hi Everyone

>I have written you a few times and all of you are so helpful,

>Thank-You. To bring you up to date, My daughter 10 years old is

>on Prozac. She first responded very well to it until we increased it

>from 10mg. to 20mg. Her doctor Ellen said to bring it back down to

>10mg. We did that but noticed she was still feeling very edgy, almost

>like she wasn't even taking it. so now she is back up to 20mg.

> and I had a talk the other night and she said she just feels like

>giving up. She thinks that she has done something really terrible to be

> " cursed " with OCD and Depression. For the last week she seems to be

>doing fine then at bedtime she starts crying and wants to talk. I am at

>a loss for what to say to her, I feel she is trying to see how long she

>can put off going to bed. So I give her 5 minutes of discussion then

>tell her she has to try to go to sleep, of course then I get the " what

>if " I can't go to sleep and so on.

>When she told me she feels like giving up, I felt like I was going to

>die. I told her she can't give up because then she is giving up on me

>and her family, and that she has done nothing terrible to deserve this

>it is just something that happened, and be grateful you can't die from

>this disease! I have also told her we are going to get thru this

>together, all of us. I want her to write down her feelings whether sad

>or happy mad or glad, and I will do the same thing as to my feelings and

>how I feel she is,then we can get together once a week and talk about

>it.

>Anyway, 1} How do you deal with someone who says they just want to give

>up? 2}How do I make bedtime easier for her? She always comments on how

>she hates to go to sleep.

>Thursday she see's her doctor, and I will make sure she knows about

>this. 's father thinks it is a case of she has heard to much and

>knows to much about the different severities of this disorder, so she is

>trying to get more attention by saying she feels like giving up, because

>she knows that will break me down {and she can stay up longer}. I am

>not sure what to think!!

>Also I have noticed can have an absolutley wonderful weekend with

>no problems then all of sudden Sunday night comes and she is so upset

>and crying {it's bedtime again}. Sometimes I wonder if her brain is

>somehow telling her she should feel guilty for having such a good, fun

>time?

>Suggestions PLEASE, I am soo confused

>Thanks again for listening!!!

>Cheryl

>cmckim@...

>

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

>ONElist members are using Shared Files in great ways!

>

>Are you? If not, see our homepage for details.

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

>You may subscribe to the OCD-L by emailing

>listserv@... .

>In the body of your message write:

>subscribe OCD-L your name.

>The archives for the OCD and

>Parenting List may be accessed

>by going to the member center.

>Enter your username and password,

>then click on " list name " , then

>click on " view archives " , and

>then click on " archives index " .

>You may then view archives by

>date of entry.

>

[Guest guest]

Dear Cheryl,

I think our OCD children are naturally anxious about bedtime, as giving in to

sleep represents a certain loss of control, which they struggle so desperately

to maintain during the day. (Also, their medications can have various effects

on their ability to fall asleep, of course.) I do notice that my daughter

becomes anxious around this time. We use some relaxation techniques suggested

by her therapist (nothing fancy, just tightening different muscles and relaxing,

calming breaths, followed by some positive imagery) and it really does seem to

help her " turn off. " (She's 5.)

Take care,

Lesli

[Guest guest]

Thank-You to everyone who responded.

's psychiatrist has not mentioned anything about CBT, I guess I am

going to have to bring it up on Thursday. I am confused about CBT and

how it works. I keep forgetting to put myself in her shoes and think

about what she is going thru, I know it is difficult. I am going to try

your suggestions about laying down with her at night, especially when

she is upset, hope it works.

This coming weekend is going to be very interesting, has Girl

Scout Camporee, her troop will be spending 2 nights at camp. I know she

can do it and she knows that she can do it, However I can just wait for

Sunday night, when she comes home and the let down from having a great

weekend is going to be horrific.

Anyway, if someone could tell me about CBT, I would greatly appreciate

it. I will keep you up to date on what happens with her Doctor.

Thanks so much, you are all wonderful!

Cheryl

[Guest guest]

Hi Cheryl:

You are right OCD can be very difficult and confusing. I know I sound like

someone in sales but I really believe that CBT (tough as it is) is the best

treatment for many of our beloved OCD kids. In my family's experience

pscyhiatrists generally are not trained in CBT, we have found that

psychologists and other therapists are more likely to provide this

treatment. After spending literally thousands and thousands of dollars on

docs we have decided to go the psychiatrists only for med management.

Last July we were lucky enough to finally form a treatment team for our

son, . This really works best, his psychologist is the head of the

treatment team and has trained his CBT therapist and supervises and designs

Steve's treatment protocols, he has also found a psychiatrist to work as

part of the team doing med management only. We found it hard to find mental

health professionals who would work together but it was well worth the

battle. It involves a lot of flying around and extra expense but the

results have been nothing short of spectacular.

The best form of CBT for OCD involves exposure and response prevention.

Basically our OCDers learn to confront their fears and postpone then stop

their rituals which they hope will reduce the anxiety. Books have been

written on what CBT is so it is hard to describe in a short email. Do you

have Dr. March's book on OCD in children and adolescents? This is a very

important book for any parent whose child is doing CBT. Our kids learn in

a graduated way to face their fears, it needs to be done at their pace and

is best done by someone with experience in the technique and who likes

working with kids.

Hearing our child tell us they want to die because the OCD is so hard to

lilve with is unbearably painful and frightening. Steve had major

depressive disorder as well as OCD and I would look at him and see all his

facial muscles fallen in on themselves and see how unbelievably depressed

he was. It scared me as did his suicide attempts. We would watch him

around the clock, including taking him to work with us as he was too sick

to go to school for a couple of months. Luckily Paxil helped considerably

with his depression. What I found helped was that I would tell Steve that

I would find a doctor to help and that no matter what I would never, ever

give up and I was there for him no matter what.

As far as helping them sleep - I did not completely comply with the doc's

suggestion of leaving my son alone to get to sleep. Keeping him company

would help him, sometimes it would take hours and hours before he would

drop off to sleep, the obsessions were really grinding him down. When he

couldn't sleep due to meds we used Benadryl and that helped quite a bit.

Relaxation tapes and routines did not help him at all, in fact they seemed

to make him even more irritable. Slowly as he got a bit better I weaned

him off being helped to sleep. Even now sometimes when the obsessions are

bothersome on a bad day he will join us in bed for a snuggle and back rub.

Then after about 10-15 minutes of being calmed down we tell him it is time

for him to get into his own bed.

Have you watched the video " The Touching Tree " ? This video does an

excellent job of explaining OCD from the sufferer's point of view and helps

us understand problems we cannot see. Good luck with 's girl scout

camporee, sending her there sends her a strong message that you know she

can cope and this is very important, even if it is so nerve wracking to

you. Take care, aloha, Kathy (Ha)

kathyh@...

At 10:04 AM 6/8/99 -0400, you wrote:

>From: Glenn Kathe <cmckim@...>

>

>Thank-You to everyone who responded.

>'s psychiatrist has not mentioned anything about CBT, I guess I am

>going to have to bring it up on Thursday. I am confused about CBT and

>how it works. I keep forgetting to put myself in her shoes and think

>about what she is going thru, I know it is difficult. I am going to try

>your suggestions about laying down with her at night, especially when

>she is upset, hope it works.

>This coming weekend is going to be very interesting, has Girl

>Scout Camporee, her troop will be spending 2 nights at camp. I know she

>can do it and she knows that she can do it, However I can just wait for

>Sunday night, when she comes home and the let down from having a great

>weekend is going to be horrific.

>Anyway, if someone could tell me about CBT, I would greatly appreciate

>it. I will keep you up to date on what happens with her Doctor.

>

>Thanks so much, you are all wonderful!

>Cheryl

[Guest guest]

Do you regurgitate or clear your esophagus before going to bed?

Sleeping as elevated as possible is best, so you avoid aspiration. Treatment

like surgery is the only option, for most to improve.

The good news is that my gi told me years ago, that those with the more severe

symptoms before surgery, early in the process often responded the best to

treatment.

I was like you, coughing, couldn't eat or drink and tons of foam and stuff.

Went away immediately after dialation, then later after surgery. That was five

years ago.

Severe symptoms suggest your esophagus may not have stretched as much yet, that

is why you have such strong symptoms. Those who are further on in the disease,

with a stretched esophagus often can eat and drink kind of normally.

When are you getting test results and hopefully treatment?

Sandy

>

> Although I suspect someday I'll be diagnosed with achalasia,I have not thus

far.

>

> My big issue right and new for me is nighttime problems. I now sleep on a

10-inch wedge pillow but still have goop in my throat, making me cough,

regurgitate (small amounts of kind of thick, clear, sometimes foamy stuff. I

clear my throat and wake frequently. I do not eat or drink for 3-4 hours before

bed. I will have the issues even when sitting in a chair and falling asleep.

>

> Obviously I feel I'm awake more than asleep and my hubby has even moved to the

couch just to get some sleep.

>

> This issue began about 2 months ago with choking at night. I've found relief

but even over this short period of time, it seems to be always changing so that

whatever I've done to relieve the issue, won't work and I have to find something

else. It doesn't matter if I lay on left or right side or back, flat or or

propped up.

>

> Any ideas or suggestions others have used? Its bad enough to not be able to

eat comfortably during the day but to not sleep also, is making it all the more

hard to manage. thanks

>

[Guest guest]

I have been clearing or regurging more often, when it just feels like that is

the only thing that will help. Last night I finally got up and tried to get

whatever I had in my throat out. Its never much at all, just feels like a lot.

I slept the rest of the night. I never bring much up except a little foam/froth

or liquid, very small amounts, but it sure feels better. I sleep with a 10-inch

wedge and pillow.

I've had an EGD with dilation 2 years ago although the narrowing was just

superficial and he did it because he was there. Everything else was fine.

Barium swallows have only shown slow motility. Manometry was negative for

achalasia 2 years ago. Diagnosis so far is unspecified motility disorder. Slow

and uncoordinated swallowing movements of esophagus.

Back to the GI specialist Tuesday.

Thanks.

b

> >

> > Although I suspect someday I'll be diagnosed with achalasia,I have not thus

far.

> >

> > My big issue right and new for me is nighttime problems. I now sleep on a

10-inch wedge pillow but still have goop in my throat, making me cough,

regurgitate (small amounts of kind of thick, clear, sometimes foamy stuff. I

clear my throat and wake frequently. I do not eat or drink for 3-4 hours before

bed. I will have the issues even when sitting in a chair and falling asleep.

> >

> > Obviously I feel I'm awake more than asleep and my hubby has even moved to

the couch just to get some sleep.

> >

> > This issue began about 2 months ago with choking at night. I've found

relief but even over this short period of time, it seems to be always changing

so that whatever I've done to relieve the issue, won't work and I have to find

something else. It doesn't matter if I lay on left or right side or back, flat

or or propped up.

> >

> > Any ideas or suggestions others have used? Its bad enough to not be able to

eat comfortably during the day but to not sleep also, is making it all the more

hard to manage. thanks

> >

>