update

[Guest guest]

In a message dated 11/3/00 6:15:37 PM Eastern Standard Time,

vainclusion4all@... writes:

<< we have another meeting

scheduled on weds......gotta reserve my energy...... take care and many

thanks to all of those that have supported me and prayed for me.....this has

been a rough week......ashton given diagnosis, me accepting diagnosis,

ashton

coming off meds, and now this....... please let there be some angels

circling

my way.........take care all, leah >>

Man oh Man Leah!!! I'm sorry about the abuse!!! It is so very scary to

think our kids can be manhandled like that. You did the right thing; I

wouldn't let Maddie back in that room with that nut either. Hang in there

dear!!! You're doing good!!

Donna

[Guest guest]

Leah,

Honey, I hope you get a break soon. You need to get something back for

all of your hard work!! I hope Ashton's new placement will work our great

and I'm so sorry about her teacher's attitude. You are doing an outstanding

job of standing up for your daughter's rights and education. Wishing you all

the best.

Marisa

[Guest guest]

Marisa,

thanks for the words of support....i saw richard villa today!!!!! he saw me

and said " your the troublemaker from the ndss conference " !!!!! lmao funny how

we mentally remember people...... i always feel good when i hear him

speak...... okay am off to drink that bottle of wine.....take care, leah

[Guest guest]

donna, thanks to you too for the support and prayers...i am just still

overwhelmed....first kki, then diagnosis and then this......... cps will be

involved since it took place on school grounds.....i just want it to go

away.......

[Guest guest]

Hi, Leah -

I just read your post from a few days ago about Ashton being yelled at and

handled so roughly at school. I'm so very sorry, Leah. This must break your

heart for her. You did the right thing by raising hell at the meeting and

taking the action that you did. Hang tough - we are all behind you. I know

you are going through a very rough period right now. Please know that you

and Ashton are in my prayers.

Maureen

[Guest guest]

maureen,

thanks for the prayers. we most definitely need them... i think everyone on

this list needs prayers and angels circling for some reason. when i read

about amanda's behaviors, it reminded me somewhat of ashton.. even though she

doesn't pull hair of bite, she stabbed a boy with ehr pencil the other day

and she has never been aggressive....but the more i think about it the more

it makes sense...she is ina place she doesnt want to be, nothing is in place

for her as in respect to modifications, supports, or adaptations. what do you

expect.... so i am trying to be patient and loving aand most of all

understanding.... hope amanda gets better and you get some peace....tcleah

[Guest guest]

HI Lana:

This sounds like a pretty tricky situation. I suggest you ask this

question of a skilled psychopharmacologist. YOu could ask it on the " Ask

the Experts " site on the OCF web site.

Anafranil is Chlorimipramine and the chlorine makes all the difference to

the molecule which then helps OCD. Do you think 's doc might

consider Anafranil instead of Imipramine?

Your son sounds like an excellent candidate for CBT since meds cause

allergies. I hope you can find him access to this kind of treatment.

Depression can get in the way of dealing with CBT but IMO once the OCD is

under control most people seem to get their depression under control too,

that is, their depressions are just secondary to having OCD.

Good luck, please keep us posted how handles his upcoming hernia

surgery. Take care, aloha, Kathy (H)

kathyh@...

P.S. Can the doc prescribe him something quick acting for anxiety when he

goes for surgery?

At 09:41 PM 11/09/2000 +0000, you wrote:

>Hi all! Well I told about his upcoming surgery, I wanted him

>to have a chance to talk with his psychiatrist beforehand if needed.

>He did not want too. Well he is scared and has feelings that he will

>die. It didnt comfort him at all to know that his dad, little brother

>and grandfather have all had hernia surgery. He wants to know

>why " this is happening to me? Why is everything after me? "

>The Psychiatrist wants to start him on a new med (getting away from

>the SSRI's since he gets allergic reactions). New medicine is

>IMIPRAMINE. I searched for this in the archives with no luck.

>Imipramine is supposed to help with depression, nervousness and

>anxiety, but not with OCD. Is anyone familiar with this? The docs

>thinking is to get his depression, nerves and anxiety under control

>then treat the OCD with additional meds (he mentioned Luvox) but that

>brings back in an SSRI.

>(He is not to start the new med until after his surgery, because

>there can be complications with imipramine and a general anesthetic.)

>Any thoughts?

>

>Lana in GA

[Guest guest]

Hello Lana, thanks for letting us know how is doing post-surgery.

I'm sorry I don't remember why is not taking an SSRI, but the

symptoms you mention are common OCD worries and compulsions and may be

increasing because of his being switched off an SSRI (if this is the case.)

I know in the past when it seemed a med wasn't doing much for Kellen, when

we lowered the dose we found it had been!

The type of testing you describe is not commonly done before beginning CBT.

Why does 's psychologist feel it's necessary? The tests you mention

are not used to diagnose bipolar or ADHD, I believe these are clinical

diagnoses as is OCD.

Yes anger and mood swings can be part of OCD, they can also be side-effects

of meds. Has had these symptoms a long while, or are they new since

Imipramine?

Has the psychologist said when he intends to start honest-to-goodness CBT?

Remember Kathy H's 5-visit rule--if CBT has not begun within this number of

visits, it's time to move on.

Kathy R in Indiana

update

> Hi! I havent written in awhile, thought I'd give an update on .

> We started the Imipramine after his hernia surgery, no big side

> effects that I have noticed. Park says he " feels " hyper, but other

> than that no help to his depression or OCD. (This is not an SSRI)This

> med doesnt help OCD but does help anxiety. He has been on this 3-4

> weeks now and worries have been on the increase. He is starting to

> worry about school work and leaving things at school, being afraid

> he's not going to remember what the teacher said etc. This is new to

> us, he has never shown school fears before. His OCD in the past has

> not affected his schooling or grades. He is now bringing home B's and

> alot more C's. Can this possibly be the medicine? He cries alot more

> and apologizes for things that he did YEARS ago (literally years

> ago). I am ready for him to start bossing back but the psychologist

> is still " testing " . He has done an IQ test, a developmental test and

> an academic test. Is this common to do before starting therapy? I

> just think that we should be further along with therapy and not

> looking for other problems. Am I wrong? The doc is thinking possibly

> ADHD and Bipolar. Teachers and counselors have not noticed symptoms

> of either of these disorders in . I know that OCD can be

> a " secret " but can ADHD and Bipolar be kept hidden as well? He does

> have mood swings and alot of anger but cant that be apart of OCD too?

[Guest guest]

tried 2 (zoloft and Paxil) SSRI's and had an

allergic reaction to both. The Psychiatrist wanted to

relieve his anxiety and depression but also give

a break from having an itchy rash. (between the

2 meds he had a rash for 4-5 weeks). The plan is to

add in Lovux with the imipramine, but I dont think

imipramine is helping any longer.

has always been an angry child and has mood

swings regularly.That did improve after we started the

imipramine, but has now returned full force!

The Psychologist told me these tests would help him

determine if there were other problems we needed to

consider. I had to meet with him 4 times to give

background info and came home with pages and pages of

questions on his behavior etc. has seen him 3

times now but only to do tests. I did question the doc

and he said he really needed to continue with the test

before starting therapy and there should be 2 more

appts for tests. He cant say if there are other

problems until he can review all the results. I am so

confused at this point. It took me awhile to find him,

but I feel I need to start my search again. CBT

therapist are hard to find and insists on

having a male, that makes it that more difficult.

--- Kathy <klr@...> wrote:

> Hello Lana, thanks for letting us know how is

> doing post-surgery.

> I'm sorry I don't remember why is not taking

> an SSRI, but the

> symptoms you mention are common OCD worries and

> compulsions and may be

> increasing because of his being switched off an SSRI

> (if this is the case.)

> I know in the past when it seemed a med wasn't doing

> much for Kellen, when

> we lowered the dose we found it had been!

>

> The type of testing you describe is not commonly

> done before beginning CBT.

> Why does 's psychologist feel it's necessary?

> The tests you mention

> are not used to diagnose bipolar or ADHD, I believe

> these are clinical

> diagnoses as is OCD.

>

> Yes anger and mood swings can be part of OCD, they

> can also be side-effects

> of meds. Has had these symptoms a long

> while, or are they new since

> Imipramine?

>

> Has the psychologist said when he intends to start

> honest-to-goodness CBT?

> Remember Kathy H's 5-visit rule--if CBT has not

> begun within this number of

> visits, it's time to move on.

>

> Kathy R in Indiana

>

> update

>

>

> > Hi! I havent written in awhile, thought I'd give

> an update on .

> > We started the Imipramine after his hernia

> surgery, no big side

> > effects that I have noticed. Park says he " feels "

> hyper, but other

> > than that no help to his depression or OCD. (This

> is not an SSRI)This

> > med doesnt help OCD but does help anxiety. He has

> been on this 3-4

> > weeks now and worries have been on the increase.

> He is starting to

> > worry about school work and leaving things at

> school, being afraid

> > he's not going to remember what the teacher said

> etc. This is new to

> > us, he has never shown school fears before. His

> OCD in the past has

> > not affected his schooling or grades. He is now

> bringing home B's and

> > alot more C's. Can this possibly be the medicine?

> He cries alot more

> > and apologizes for things that he did YEARS ago

> (literally years

> > ago). I am ready for him to start bossing back but

> the psychologist

> > is still " testing " . He has done an IQ test, a

> developmental test and

> > an academic test. Is this common to do before

> starting therapy? I

> > just think that we should be further along with

> therapy and not

> > looking for other problems. Am I wrong? The doc is

> thinking possibly

> > ADHD and Bipolar. Teachers and counselors have not

> noticed symptoms

> > of either of these disorders in . I know

> that OCD can be

> > a " secret " but can ADHD and Bipolar be kept hidden

> as well? He does

> > have mood swings and alot of anger but cant that

> be apart of OCD too?

>

>

>

__________________________________________________

[Guest guest]

Lana,

> The Psychologist told me these tests would help him determine

if there were other problems we needed to consider. I had to

meet with him 4 times to give background info and came home

with pages and pages of questions on his behavior etc.

has seen him 3 times now but only to do tests. He cant say if

there are other problems until he can review all the results.

I am so confused at this point. <

I do agree that the length of time is long for the psychological

assessment, but if he's being thorough, I would stick with it. It appears

that the doc is considering multi-diagnosis for and it really helps

before starting any treatment to know what you are getting involved in! For

example, his ocd may be moderate, while the bi-polar may be severe - so the

bi-polar would have priority for treatment. Once the assessment is complete,

you should expect to begin treatment right away, and that's when the " 5

Visit Rule " may apply. The prescribing physician (psychiatrist?) will be

able to suggest medications much more efficiently based on an accurate

diagnosis.

Take care, wendy in canada

________________________________________________________________________________\

_____

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Hi:

Thanks for the update on . Of course I am not a doc but it sounds

like OCD is really bossing around right now. Getting an accurate

diagnosis is essential and this is often difficult in children because they

usually don't have just one disorder. Often OCD can seem like other

disorders and it can be misdiagnosed as something else.

Textbook cases of only OCD do not need a lot of testing prior to diagnosis.

The diagnosis is made based on a structured interview. Dr. Ian Osborn

gave a talk I attended a few years ago and stated that OCD is the easiest

diagnosis in psychiatry. On the other hand I have met several people with

OCD who were misdiagnosed. This is hopefully becoming less common as more

and more people are recognizing the symptoms of OCD. When there are no

overt symptoms and the sufferer is very ashamed and secretive, diagnosis

can become much more difficult.

What I have learned Lana is to trust my intuition. Yours is telling you

something pretty clearly and you may want to trust it. OCD is a mean

disorder and will mess with things that are closest to the sufferer. SO if

likes school it can mess with that too. About 50% of kids, from

what I have read, find that OCD messes with school enough to need an IEP.

I imagine the number might even be higher, if there were not more barriers

to getting IEPs. My son, STeve, is classified 504 and has an MP which can

allow him accommodations when OCD interferes with school. OCD can

interfere with cognitive function and more research needs to be done to

determine what the effects are.

What we found was that when Steve was very ill, school could not be part of

his life. As he got better, he was able to enjoy school as much as anyone

his age would, and when he is interested in something he functions as well

as ever. Of course teenagerhood has really changed his enthusiasm for

school.

Good luck, take care, please say hi to for me, aloha, Kathy (H)

kathyh@...

You wrote:

>Hi! I havent written in awhile, thought I'd give an update on .

>>We started the Imipramine after his hernia surgery, no big side

>>effects that I have noticed. Park says he " feels " hyper, but other

>>than that no help to his depression or OCD. (This is not an SSRI)This

>>med doesnt help OCD but does help anxiety. He has been on this 3-4

>>weeks now and worries have been on the increase. He is starting to

>>worry about school work and leaving things at school, being afraid

>>he's not going to remember what the teacher said etc. This is new to

>>us, he has never shown school fears before. His OCD in the past has

>>not affected his schooling or grades. He is now bringing home B's and

>>alot more C's. Can this possibly be the medicine? He cries alot more

>>and apologizes for things that he did YEARS ago (literally years

>>ago). I am ready for him to start bossing back but the psychologist

>>is still " testing " . He has done an IQ test, a developmental test and

>>an academic test. Is this common to do before starting therapy? I

>>just think that we should be further along with therapy and not

>>looking for other problems. Am I wrong? The doc is thinking possibly

>>ADHD and Bipolar. Teachers and counselors have not noticed symptoms

>>of either of these disorders in . I know that OCD can be

>>a " secret " but can ADHD and Bipolar be kept hidden as well? He does

>>have mood swings and alot of anger but cant that be apart of OCD too?

[Guest guest]

Hey all,

Our new insurance went into effect Jan 1, our new doc called the psych hospital late yesterday, a bed was available, insurance approved, and stunningly quickly, we brought in this afternoon to be admitted.

Right now I am feeling a bit in shock, our hopes riding on this, but not daring to believe. The hospital seems like a decent place, the staff loving and helpful, already losing points over an infraction, we left her crying a bit, and scared, and we felt just the same.

I know we had to do this, know we were out of other options, but do feel as if I am missing a piece of myself. I thank all of you for your thoughts and good wishes and prayers. All who have written as we struggled with this decision have helped me to rest easier tonight. Will continue updating as we learn anything. Visiting hours tomorrow afternoon, during which is also homework time-- hey, wasn't this supposed to be a bit of a respite for Mom? Naturally, it is important that they see the interactions, and how they can make it work better.

Again, I am so grateful for everyone here.

Ellen/NY

[Guest guest]

Hello Ellen, I know how hard it must be for you with your daughter

going in the hospital for treatment. My son went in the hospital

last year at this time. I felt so lost, lonely, scared, and just

couldn't believe it. My mom had just recently died, so it was double

grieving for me. Well, HE coped better than I did! He really was OK

with it, and the stay helped him in many ways. I will keep you and

in my prayers. Take care and hang in there.

Jan

[Guest guest]

Dear Ellen:

Wow, what news! I am sending you all the good vibes and karma I can muster. I can only imagine how hard this must be. I absolutely think you are doing the right thing and I admire your bravery and strength (and 's) for giving it a shot. While all 3 of my kids have been hospitalized for health reasons, Avery was the only one I couldn't stay with. She was put in NICU when she was 2 days old for projectile vomiting. Going home without her was one of the two worst nights of my life. Have a good therapeutic cry, then try to take a little time for yourself. She's in the hands of professionals who, hopefully, can help. Know that you're not alone and we're all crying and hoping with you.

in Texas

Re: update

Hey all, Our new insurance went into effect Jan 1, our new doc called the psych hospital late yesterday, a bed was available, insurance approved, and stunningly quickly, we brought in this afternoon to be admitted. Right now I am feeling a bit in shock, our hopes riding on this, but not daring to believe. The hospital seems like a decent place, the staff loving and helpful, already losing points over an infraction, we left her crying a bit, and scared, and we felt just the same. I know we had to do this, know we were out of other options, but do feel as if I am missing a piece of myself. I thank all of you for your thoughts and good wishes and prayers. All who have written as we struggled with this decision have helped me to rest easier tonight. Will continue updating as we learn anything. Visiting hours tomorrow afternoon, during which is also homework time-- hey, wasn't this supposed to be a bit of a respite for Mom? Naturally, it is important that they see the interactions, and how they can make it work better. Again, I am so grateful for everyone here. Ellen/NY You may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD . You may access the files, links, and archives for our list at . Our list advisors are Tamar Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy , Roman, and Jackie Stout. Subscription issues or suggestions may be addressed to Louis Harkins, list owner, at harkins@... .

[Guest guest]

Ellen, I can't imagine what you must be feeling right now! I will be praying for great successes with . Keep us updated please. Did they say how long this would be for? Hugs, Nikki in O'town

[Guest guest]

Hi Ellen,

A friend of mine ,actually, my little godson's () mother, spent

some time in a psychiatric hospital when she was 13. At that time

they said she had conduct disorder and oppositional disorder (this was

17 years ago) so she didn't get any help for what was really bi-polar disorder

and depression. But nonetheless she remembers her time there as helpful,

once she adjusted to it. She even chose to stay longer and ended

up staying 8 months. So even though they didn't really get it "right",

they got it right enough and she was able to continue in a regular school

after that. Her later problems with substance abuse were related

to her self-medicating what she really had, the bi-polar disorder and depression.

She also had undiagnosed panic attacks and maybe even a little OCD.

Her mother wishes that she knew what we know now. is so

incredible lucky to have a mom who has information and the willingness

to advocate for her in the incredible way that you do. I have faith

in her because she is your daughter.

Dana in NC

You may subscribe to the OCD-L by

emailing listserv@... . In the body of your message

write: subscribe OCD-L your name. You may subscribe to

the Parents of Adults with OCD List at parentsofadultswithOCD

.. You may access the files, links, and archives for our list

at

.. Our list advisors are Tamar Chansky, Ph.D., and Aureen Pinto

Wagner, Ph.D. Our list moderators are Birkhan, Kathy

Hammes, Jule Monnens, Gail Pesses, Kathy , Roman, and Jackie

Stout. Subscription issues or suggestions may be addressed

to Louis Harkins, list owner, at harkins@... .

[Guest guest]

Hello Ellen, I'm thinking of you and your brave girl tonight. I hope today's visit went well and that by now both of you are feeling positive about this decision.

Nothing ventured, nothing gained. No matter how things are going so far, or how they play out, I applaud you both for moving forward toward 's recovery. A big step that still must feel weird for now--but which can hopefully benefit not only your daughter but your whole family.

Keep us updated, (((hugs Ellen)))

Kathy R in Indiana

----- Original Message -----

From: elan214@...

Our new insurance went into effect Jan 1, our new doc called the psych hospital late yesterday, a bed was available, insurance approved, and stunningly quickly, we brought in this afternoon to be admitted. <snip>

[Guest guest]

Hi Ellen,

That was fast!! I'm glad that things did move at this pace, it left less

chances for to worry unnecessarily. Lets take it as a good omen of

things to come!

big hugs, take care, eh? wendy in canada

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

Ellen,

I haven't posting lately, but your email really touched

me and I just wanted to

tell you that I know first hand what you are going through

and what you are

experiencing. My heart goes out to you and your

family and I will keep you

all in my prayers.

I didn't rest the entire time that my son was in

the hospital, and this was

the beginning of a huge weight loss for me. I was

so distraut that I couldn't

eat. I will write more of our experience later.

Just wanted you to know that you will get past this and

I pray that things will

look brighter for all of you soon!

Big Hugs!

mary from La.

----- Original Message -----

From:elan214@...

Our new insurance went into

effect Jan 1, our new doc called the psych

hospital late yesterday,

a bed was available, insurance approved, and

stunningly quickly, we brought

in this afternoon to be admitted.

<snip>

[Guest guest]

Hey All,

Thanks all for your good wishes and thoughts and words. Not writing individual thank you's as Jackie did so well though!!!

seems to be doing okay, after a good first day where she was just fine, no spitting for more than 24 hours, no time outs, sat in school all day, etc., second day was a little rougher (thank goodness, I was starting to worry about what she was doing there).

The one med that had seemed to be doing her any good was Anafranil. They did an EKG and found some possible problems with her heart, which is a possible side effect of this med. So, they are taking her off of it. In its stead , they are putting her on Celexa, which upsets me as she has had such terrible behavioral side effects with 3 other SSRI's , and I had worked hard titrating her off the Luvox, and adding Klonipin as well.

If anyone out there has any experience with Klonipin, I would appreciate some feedback. I looked it up, it is an anti-anxiety drug, which is good, but they also say about 25% of people who take it have behavioral problems. I feel as if we are back to trying anything, and maybe something might possibly work. But she has been hospitalized for the behavior, so giving her meds that make her worse seems, well, just wrong. Don't know what else to suggest.

They have the kids on a point system, you earn priviliges if you get a certain number of points, you get them for doing the things you are supposed to do, and lose if you don't. Yesterday, asked for a clock for her room, I asked if this would be okay, they said no, its not allowed, she explained her reasons, they explained theirs, she kept disagreeing, they agreed it perhaps wasn't fair, but it was the rules, she kept disagreeing, she was warned about arguing, would lose points if she said one more word. I just loved this. Can you imagine if the kids stopped arguing about every little thing??????

On the other hand, how fair is it if they give her meds that cause her to behave badly and then consequence her for that? They don't seem to care about OCD at all, or Tourettes, if she spits, she is in her room for 2 hours, alone with nothing to do. She says this isn't fair, and I am sort of inclined to agree-- if it is a tic, she can't help it, if it is a compulsion, then it needs to be worked on, not consequenced. Trying not to get too involved, I am pretty sure it is a compulsion most of the time, but perhaps she will find a different one, and we can again go out in public. I have to let them work on this, what we have been doing so far certainly hasn't worked.

But if she can't help it.....

She doesn't seem to mind being there so far, couldn't stand being home bored out of her mind, and there are other kids and things to do, and so far, so good, even a very bad day yesterday didn't bother her too much. We shall see, I guess. and I still somewhat in shock and depressed that it has come to this, but that is too be expected.

Again, thank you all for your good wishes and kind thoughts.

EllenNY

[Guest guest]

Ellen,

It was good to read your update on . She had been in my

thoughts a lot recently. My experience when has been in this

hospital is, that it is nice to have her angry at someone else rather

than me. For , communicating emotions has been a long-time

problem. So the hospital was a good place for her try on expressing

negative feelings.

I know 's situation is quite different, but I wouldn't get too

concerned about the " fair " / " unfair " thing. Life is not fair, OCD is

not fair, weight problems are not fair (my own personal issue). But

we all have to learn how to work within a system. It might be

interesting to see how well she can adjust her behavior, even tho'

she doesn't want to. If after some time, she is still unable to

control herself, even with the negative consequences, then I would

say it is time to address whether the meds are counterproductive for

her.

And don't be too hard on yourself that " it has come to this " . You

are doing the best you can for her by trying whatever might work. I

know for me, I rest better knowing that I tried something and it

failed, rather than not having tried at all.

Take care. My prayers are with you all.

Greta in Oregon

> Hey All,

>

> Thanks all for your good wishes and thoughts and words. Not

writing

> individual thank you's as Jackie did so well though!!!

>

> seems to be doing okay, after a good first day where she

was just

> fine, no spitting for more than 24 hours, no time outs, sat in

school all

> day, etc., second day was a little rougher (thank goodness, I was

starting to

> worry about what she was doing there).

>

> The one med that had seemed to be doing her any good was

Anafranil. They did

> an EKG and found some possible problems with her heart, which is a

possible

> side effect of this med. So, they are taking her off of it. In

its stead ,

> they are putting her on Celexa, which upsets me as she has had such

terrible

> behavioral side effects with 3 other SSRI's , and I had worked hard

titrating

> her off the Luvox, and adding Klonipin as well.

>

> If anyone out there has any experience with Klonipin, I would

appreciate some

> feedback. I looked it up, it is an anti-anxiety drug, which is

good, but

> they also say about 25% of people who take it have behavioral

problems. I

> feel as if we are back to trying anything, and maybe something

might possibly

> work. But she has been hospitalized for the behavior, so giving

her meds

> that make her worse seems, well, just wrong. Don't know what else

to suggest.

>

> They have the kids on a point system, you earn priviliges if you

get a

> certain number of points, you get them for doing the things you are

supposed

> to do, and lose if you don't. Yesterday, asked for a clock

for her

> room, I asked if this would be okay, they said no, its not allowed,

she

> explained her reasons, they explained theirs, she kept disagreeing,

they

> agreed it perhaps wasn't fair, but it was the rules, she kept

disagreeing,

> she was warned about arguing, would lose points if she said one

more word. I

> just loved this. Can you imagine if the kids stopped arguing about

every

> little thing??????

>

> On the other hand, how fair is it if they give her meds that cause

her to

> behave badly and then consequence her for that? They don't seem to

care

> about OCD at all, or Tourettes, if she spits, she is in her room

for 2 hours,

> alone with nothing to do. She says this isn't fair, and I am sort

of

> inclined to agree-- if it is a tic, she can't help it, if it is a

compulsion,

> then it needs to be worked on, not consequenced. Trying not to get

too

> involved, I am pretty sure it is a compulsion most of the time, but

perhaps

> she will find a different one, and we can again go out in public.

I have to

> let them work on this, what we have been doing so far certainly

hasn't worked.

> But if she can't help it.....

>

> She doesn't seem to mind being there so far, couldn't stand being

home bored

> out of her mind, and there are other kids and things to do, and so

far, so

> good, even a very bad day yesterday didn't bother her too much. We

shall

> see, I guess. and I still somewhat in shock and depressed

that it has

> come to this, but that is too be expected.

>

> Again, thank you all for your good wishes and kind thoughts.

>

> EllenNY

[Guest guest]

HI Ellen:

Thanks for the update on and on you and . My thoughts are

with all of you at this very difficult time.

I agree with you 110% that negative consequences for NBD symptoms are

harmful. Often the symptoms are their own negative consequence. Perhaps

you can hire an OCD expert to come to the hospital and give an inservice

training to the staff about effective responses to OCD. The OCD mom who

put me in touch with the doc that really got things going for us, found she

had to do this when her daughter with OCD was in the hospital. Perhaps you

can encourage the hospital staff to provide positive reinforcement instead

when is able to boss back her symptoms for a certain period of

time. We found that positive reinforcement of good behaviors was far more

effective and quicker (although not fast) at changing Steve's behavior than

negative reinforcement for difficult behaviors.

Good luck Ellen, hope you are treating yourself a bit during this respite.

Take care, aloha, Kathy (H)

kathyh@...

At 03:01 PM 01/06/2001 EST, you wrote:

>Hey All,

>

> Not writing

>individual thank you's as Jackie did so well though!!!

>

> seems to be doing okay, after a good first day where she was just

>fine, no spitting for more than 24 hours, no time outs, sat in school all

>day, etc., second day was a little rougher (thank goodness, I was starting

to

>worry about what she was doing there).

>

> They did

>an EKG and found some possible problems with her heart, which is a possible

> In its stead ,

>they are putting her on Celexa, which upsets me as she has had such terrible

>behavioral side effects with 3 other SSRI's , and I had worked hard

titrating

>

>

>If anyone out there has any experience with Klonipin, I would appreciate

some

> I looked it up, it is an anti-anxiety drug, which is good, but

> I

>feel as if we are back to trying anything, and maybe something might

possibly

> But she has been hospitalized for the behavior, so giving her meds

> Don't know what else to suggest.

>

>They have the kids on a point system, you earn priviliges if you get a

>certain number of points, you get them for doing the things you are supposed

> Yesterday, asked for a clock for her

>room, I asked if this would be okay, they said no, its not allowed, she

>explained her reasons, they explained theirs, she kept disagreeing, they

>agreed it perhaps wasn't fair, but it was the rules, she kept disagreeing,

> I

> Can you imagine if the kids stopped arguing about every

>little thing??????

>

>On the other hand, how fair is it if they give her meds that cause her to

> They don't seem to care

>about OCD at all, or Tourettes, if she spits, she is in her room for 2

hours,

> She says this isn't fair, and I am sort of

>inclined to agree-- if it is a tic, she can't help it, if it is a

compulsion,

> Trying not to get too

>involved, I am pretty sure it is a compulsion most of the time, but perhaps

> I have to

>let them work on this, what we have been doing so far certainly hasn't

worked.

>But if she can't help it.....

>

>She doesn't seem to mind being there so far, couldn't stand being home bored

>out of her mind, and there are other kids and things to do, and so far, so

> We shall

> and I still somewhat in shock and depressed that it has

>come to this, but that is too be expected.

>

>Again, thank you all for your good wishes and kind thoughts.

>

>EllenNY

>

[Guest guest]

Dear Ellen,

Sorry I didn't get your update on . i just read it from Greta's

reply. It sounds as though she isn't doing too badly if she is interested in

what is going on and in the other kids. And I agree, if she's going to be

mad at someone for resrticting her behavior, thank goodness it isn't you!

Hope she continues to progress. And enjoy the break!

Jackie

[Guest guest]

Hi Ellen, in NY! thanks for the progress report!

>The one med that had seemed to be doing her any

good was Anafranil.<

Too bad! This is the only med that works for Tom, too. Did you discuss

lowering her dose and augmenting it with something else?? Has she tried

Effexor? I have read many reports, aside from the success in our family, in

using it with ocd and/or depression.

>They have the kids on a point system, you earn priviliges

if you get a certain number of points, you get them for doing

the things you are supposed to do, and lose if you don't. <

This is quite common. Most group homes, hospitals and many treatment

places, try this form of behaviour modification. For most, this is the most

direct way to stop a behaviour. Many parenting professionals suggest this

system to out of control families.

For the most part, they work. Now, with kids like it might help

stop attention seeking behaviours, or perhaps help to stop her argueing, but

your right - she is there because the meds are not in place yet! You need to

discuss with the doc and his team how they intend to modify the regime to

accomodate this excessive stress. Make it a fact - they will modify - not,

will they modify!!

Even though its hard, what ever decision is made regarding dicipline, you

must follow along with it. has to learn to make some changes - with

this there is no arguement, but if you express distrust in the Centres

strategies, will pick up on this and resist the treatment. Think of

it as a kid going back and forth between parents trying to get his own way -

doesnt do anyone any good!!

My experience is that most treatment centres are using a form of cognitive

behavioural therapy, but that training a large staff in ERP is just not

feasable (think of the shifts and staff turn over). Even having staff attend

a lecture is a luxury in a hospital!! Of course this is my opinion. Your

probably safer asking the doc you have just begun to access, to begin

working on the ERP with , as soon as possible. The meds can be part

of the treatment proccess, rather than the sole effort. There should be a

social worker who can advocate and explain the behaviour mod stuff.... Use

words like " more holistic approach " !!

Take care, you guys are doing well! your supposed to be concerned! Try and

use this time for working on your own relationship with each other....

hugs, wendy, in canada

_________________________________________________________________________

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[Guest guest]

Hi Ellen, thank you for the update on . I'm pulled in two directions when the subject of consequencing compulsions comes up. I mostly believe compulsions are their own punishment, and it's not the kids' fault that compulsions can look like poor behavior sometimes. But otoh when compulsions are dangerous or unacceptable to others, I have stepped in to stop the behavior and asked questions later. I know a 5-year-old boy with compulsions to kick people, his parents stop him as often as they are able and if he kicks, they leave (the park or wherever) no second chances. The parents worry he will be hurt in retaliation one day.

I think you are smart to step back and not be too involved with the hospital's rules and procedures, at least for the first few days. It may not in the end be helpful, but it won't hurt to live under these rules for awhile, and you both may be surprised to find that some behaviors are more controllable than previously thought.

I know she's tried a lot of meds over time and has had difficult side-effects, but Celexa may be different in her, and if not she's in a safe place to try it out. Kel's doctor also "diagnoses" through medications, tries this or that just to see, and I get the impression it's not uncommon to do this. BTW he's pretty jazzed about Celexa and it's side-effect profile (supposedly less than other SSRIs) so perhaps there is room for hope that Celexa can be a good choice for . Regarding Klonopin, if 25% of those taking it experience behavior problems, then 75% taking it don't . . . pretty good odds, true? :-)

Hang in there and keep us updated,

Kathy R in Indiana

----- Original Message -----

From: elan214@...

seems to be doing okay, after a good first day where she was just fine, no spitting for more than 24 hours, no time outs, sat in school all day, etc., second day was a little rougher (thank goodness, I was starting to worry about what she was doing there). The one med that had seemed to be doing her any good was Anafranil. They did an EKG and found some possible problems with her heart, which is a possible side effect of this med. So, they are taking her off of it. In its stead , they are putting her on Celexa, which upsets me as she has had such terrible behavioral side effects with 3 other SSRI's , and I had worked hard titrating her off the Luvox, and adding Klonipin as well. If anyone out there has any experience with Klonipin, I would appreciate some feedback. I looked it up, it is an anti-anxiety drug, which is good, but they also say about 25% of people who take it have behavioral problems. I feel as if we are back to trying anything, and maybe something might possibly work. But she has been hospitalized for the behavior, so giving her meds that make her worse seems, well, just wrong. Don't know what else to suggest. <snip>On the other hand, how fair is it if they give her meds that cause her to behave badly and then consequence her for that? They don't seem to care about OCD at all, or Tourettes, if she spits, she is in her room for 2 hours, alone with nothing to do. She says this isn't fair, and I am sort of inclined to agree-- if it is a tic, she can't help it, if it is a compulsion, then it needs to be worked on, not consequenced. Trying not to get too involved, I am pretty sure it is a compulsion most of the time, but perhaps she will find a different one, and we can again go out in public. I have to let them work on this, what we have been doing so far certainly hasn't worked. But if she can't help it.....