update

[Guest guest]

Thursday 1/18

Sigh. Wish my news could be better, instead it is yet worse.

For those of you who have heard some of this before, please forgive me, I

have been writing and speaking to so many people I cannot keep track of what

I've told to whom....

Picked up last week, feeling great trepidation, her behavior the

evening before angry and nasty. Hospital gives you a point sheet to fill out

for each hour she is on pass. In the car, she got upset with something I

said, kicked my dashboard, my heart sunk, I told her it was minus one point,

next time I looked at her, she was sound asleep. She has been complaining

the new meds are making her tired and cranky, and everytime she sees a bed,

she falls asleep. The visit home was incredibly wonderful. We had our first

meal in 19 months as a family without her spitting. She went downstairs to

play Nintendo on her own, a sign that her anxiety was low enough that she

didn't need to cling to us constantly. When it was time to leave, we asked

her once, and she got up and put on her shoes and coat, kissed the dog, and

was ready (who is this child--not mine). It was truly magical. Picked her

up Sunday, she was on room restriction, had pushed a nurse, they let me take

her home anyway, restriction to be completed when she got back. In the car

she asks me not to be angry with her, she pushed the nurse on purpose, was

tired, and dizzy and sick, but had no temperature, so they were forcing her

to sit with the other kids, and she really needed to lie down. We discussed

that there had to be better alternatives (although I have since learned I am

wrong-- they do not believe in reason, rules are extremely inflexible). In

the car on the way home, she became quite ill, not to be gross, but

everything coming out of everywhere. Still, although she was mortified, we

had a lovely afternoon, wanted to keep her home for an extra hour, just to

make sure she ate properly, and perhaps to give her another hour so she could

manage the half hour car ride without incident, but the hospital was adamant.

Brought her back, barely made it. She was still sick during the night,

stomach virus apparently, picked her up on Monday, just the two of us, she

pretty much just stayed in bed, and we watched a movie, but still very

pleasant. Tuesday morning early she called me, crying, sick, had been

throwing up all night, and they were forcing her to get dressed and go to

school, and she felt very ill. She never gets sick, never, I tried talking

to the nurses and doctors and social workers, they told me she wasn't sick

all night, threw up once after her hot dog for dinner (who made her eat a hot

dog feeling like that-- rules are you have to eat what you ordered....).

(Later Tuesday night, I was in her room, asked where her pillow was, turned

out she was telling the truth, and they were 'misinformed' , she had been

sick in her bed, frustrating, but not much I can do). Anyway, we had a

family therapy meeting Tuesday night, she felt attacked, got belligerent,

started kicking and screaming, raging, they locked her in the 'quiet' room,

this went on all day Wednesday, and Thursday, and finally I suggested to the

docs that I had told them the Celexa would do this, she has reacted badly to

this class of meds every time. They very reluctantly agreed to stop this

med. Rage continued, they moved her into a private room, punishment to be

away from her roommates, made her room restrictions in the hall, so she has

to sit in the hallway for two hours for infractions, took away a bunch of

other things as well, including pass to come home this weekend. So sad after

our nice weekend last week.

Sat 1/20

Went to visit today, room restriction (well, hall restriction) close to 3

hours, I hung out, wanted to see her, all the other kids on passes, dreading

though, I've had to hang up on her 7 or 8 times this week, she yells at me

and is rude on the phone, and had to walk out on a few visits as well, and

she is obviously still not doing better. Miracle of miracles, I walk in, get

a big smile, I ask if she would like to play a game, she said yes, which is

also a great sign, means she doesn't want to cling desperately to me while

also being rude. We hung out for two hours, played games, at one point she

wanted to know why all the staff was staring at her, I said I didn't think

they had ever heard her laugh, and we were hysterical, some silly girl stuff.

went tonight two hours, they played chess, she beat him, her mind

clear, didn't spit once and he had a nasty cough, perhaps I was right, and it

was the meds causing the really out of control behavior.

Can only hope. and I pretty much out of energy, as you can imagine.

We can pretty much spend the whole day with her tomorrow, if we want. It has

only been two weeks, but feels much longer. Very hard to see her punished

when we are not sure whether she really has any control over this behavior or

not. We just don't know, but can't think of a better alternative. She

clearly needs help.

Funniest story of the week? Thursday morning I called the head nurse to see

if Al was doing any better, if she was still in seclusion, and the nurse said

she was a little bit better, they were working with her very intensely to get

her morning routine done, dressed and washed and brushed and breakfasted, a

lot of one on one, a lot of praise. I said I was just happy to hear she

wasn't in lock up. The nurse confided that the staff was working really

hard, but that it was extremely stressful and wearing on them. There are 15

of them for 15 kids, and they get shifts, and meds and seclusion rooms! She

was wearing THEM out!!!!!!! Guess and I should be given Purple Heart

awards.

Anyway, will keep updating, hopefully only more positive ones to come,

Ellen/NY

[Guest guest]

Ellen:

Thanks for the update on . Sounds like it's been a rough week. It must've been hard for (and Mom) for her to be sick away from home. Still, she survived so maybe that'll give her more self confidence and strength. I'm glad the doc finally listened to you about the meds. I know it's tough to watch them treat your child differently than you would, but, after all, the world isn't fair or particularly accommodating and will have to learn to play by someone else's rules eventually. That said, my heart aches for you and and . I admire all of your courage in sticking to this. You have seen a better so you know your hope is not in vain. She will get there, but it'll be a long, bumpy road. As much as you'd like them to be able to "fix" her quickly and send her back to you, you know these things take time. Besides, think how ineffectual you'd feel as a parent if they could really fix her in 2 weeks after all the years y'all have struggled! Hang tough, you're not alone, we're all pulling for and you and !

in Texas

[Guest guest]

Hi Ellen:

Thanks for the update on . IT seems that although adjusting to the

hospital is a challenge, it is resulting in great improvements in 's

behavior.

We also had to be pretty much absolutely consistent about consequences for

behaviors to change Steve's situation. It took far longer to change his

behavior than his NT brother's and yes, there are times when you feel pity

for your child. Remember OCD feels no pity for your child and to get OCD

on the run you have to demonstrate that you are willing to be as consistent

as OCD is. A highly structured, consistent environment is a very important

treatment for a wide range of mental illnesses. I have seen how it helps

my dad's Alzheimers and also Steve's NBDs.

Of course our kids don't like it at first as it is change. However the

strange thing about changing the rules and sticking to them 100% is that in

the end their scrupulosity makes them highly accepting and even admiring of

our ability to do this. Please encourage the nurses at the hospital as

they are working hard and it seems helping to feel much more under

control.

It is hard when kids get consequences for OCD, but society will do this and

they need to accept this harsh fact. It can be a great motivator for them

to do E & RP. Sometimes Steve and I talk about how this went in our family

and he tells me that he knows I did what I had to do and it was a good

thing. Also he doesn't remember all that much about the really tough

times. His CBT therapist was talking to me about this today. He has

forgotten much of the hard times with her too. Some theorize that the

memory is associated with the emotional state and when their emotional

state is improved, they cannot access the memory.

Good luck, take care, aloha, kathy (h)

kathyh@...

At 12:21 AM 01/21/2001 EST, you wrote:

>Thursday 1/18

>

>Sigh. Wish my news could be better, instead it is yet worse.

>

>For those of you who have heard some of this before, please forgive me, I

>have been writing and speaking to so many people I cannot keep track of what

>I've told to whom....

>

>Picked up last week, feeling great trepidation, her behavior the

>evening before angry and nasty. Hospital gives you a point sheet to fill

out

>for each hour she is on pass. In the car, she got upset with something I

>said, kicked my dashboard, my heart sunk, I told her it was minus one point,

>next time I looked at her, she was sound asleep. She has been complaining

>the new meds are making her tired and cranky, and everytime she sees a bed,

>she falls asleep. The visit home was incredibly wonderful. We had our

first

>meal in 19 months as a family without her spitting. She went downstairs to

>play Nintendo on her own, a sign that her anxiety was low enough that she

>didn't need to cling to us constantly. When it was time to leave, we asked

>her once, and she got up and put on her shoes and coat, kissed the dog, and

>was ready (who is this child--not mine). It was truly magical. Picked her

>up Sunday, she was on room restriction, had pushed a nurse, they let me take

>her home anyway, restriction to be completed when she got back. In the car

>she asks me not to be angry with her, she pushed the nurse on purpose, was

>tired, and dizzy and sick, but had no temperature, so they were forcing her

>to sit with the other kids, and she really needed to lie down. We discussed

>that there had to be better alternatives (although I have since learned I am

>wrong-- they do not believe in reason, rules are extremely inflexible). In

>the car on the way home, she became quite ill, not to be gross, but

>everything coming out of everywhere. Still, although she was mortified, we

>had a lovely afternoon, wanted to keep her home for an extra hour, just to

>make sure she ate properly, and perhaps to give her another hour so she

could

>manage the half hour car ride without incident, but the hospital was

adamant.

> Brought her back, barely made it. She was still sick during the night,

>stomach virus apparently, picked her up on Monday, just the two of us, she

>pretty much just stayed in bed, and we watched a movie, but still very

>pleasant. Tuesday morning early she called me, crying, sick, had been

>throwing up all night, and they were forcing her to get dressed and go to

>school, and she felt very ill. She never gets sick, never, I tried talking

>to the nurses and doctors and social workers, they told me she wasn't sick

>all night, threw up once after her hot dog for dinner (who made her eat a

hot

>dog feeling like that-- rules are you have to eat what you ordered....).

>(Later Tuesday night, I was in her room, asked where her pillow was, turned

>out she was telling the truth, and they were 'misinformed' , she had been

>sick in her bed, frustrating, but not much I can do). Anyway, we had a

>family therapy meeting Tuesday night, she felt attacked, got belligerent,

>started kicking and screaming, raging, they locked her in the 'quiet' room,

>this went on all day Wednesday, and Thursday, and finally I suggested to the

>docs that I had told them the Celexa would do this, she has reacted badly to

>this class of meds every time. They very reluctantly agreed to stop this

>med. Rage continued, they moved her into a private room, punishment to be

>away from her roommates, made her room restrictions in the hall, so she has

>to sit in the hallway for two hours for infractions, took away a bunch of

>other things as well, including pass to come home this weekend. So sad

after

>our nice weekend last week.

>

>Sat 1/20

>

>Went to visit today, room restriction (well, hall restriction) close to 3

>hours, I hung out, wanted to see her, all the other kids on passes, dreading

>though, I've had to hang up on her 7 or 8 times this week, she yells at me

>and is rude on the phone, and had to walk out on a few visits as well, and

>she is obviously still not doing better. Miracle of miracles, I walk in,

get

>a big smile, I ask if she would like to play a game, she said yes, which is

>also a great sign, means she doesn't want to cling desperately to me while

>also being rude. We hung out for two hours, played games, at one point she

>wanted to know why all the staff was staring at her, I said I didn't think

>they had ever heard her laugh, and we were hysterical, some silly girl

stuff.

> went tonight two hours, they played chess, she beat him, her mind

>clear, didn't spit once and he had a nasty cough, perhaps I was right, and

it

>was the meds causing the really out of control behavior.

>

>Can only hope. and I pretty much out of energy, as you can imagine.

>We can pretty much spend the whole day with her tomorrow, if we want. It

has

>only been two weeks, but feels much longer. Very hard to see her punished

>when we are not sure whether she really has any control over this behavior

or

>not. We just don't know, but can't think of a better alternative. She

>clearly needs help.

>

>Funniest story of the week? Thursday morning I called the head nurse to see

>if Al was doing any better, if she was still in seclusion, and the nurse

said

>she was a little bit better, they were working with her very intensely to

get

>her morning routine done, dressed and washed and brushed and breakfasted, a

>lot of one on one, a lot of praise. I said I was just happy to hear she

>wasn't in lock up. The nurse confided that the staff was working really

>hard, but that it was extremely stressful and wearing on them. There are 15

>of them for 15 kids, and they get shifts, and meds and seclusion rooms! She

>was wearing THEM out!!!!!!! Guess and I should be given Purple

Heart

>awards.

>

>Anyway, will keep updating, hopefully only more positive ones to come,

>

>Ellen/NY

[Guest guest]

Hi Ellen, thanks for updating us on , I have been thinking of

you both and wonder daily how she is doing.

I know things are not going as smoothly or quickly as you would hope.

(Can anything in this type of situation progress quickly enough? It

is so very hard to watch our kids suffer and struggle.)

You wrote that the news about was worse, but I see several

improvements: the pleasant visits and dinners, the reduced spitting,

calmly gathering her things to return once the visits are over. I

think she's telling you that the hospitalization is what she needs to

do for now. She's very strongly signalling that though it's really

hard, she very much wants to get better.

Has she ever stayed on an SSRI long enough to get through the

admittedly rough acclimation periods she experiences? I'm curious

because if there is anything to the idea that a negative initial

reaction predicts the drug's effectiveness, she may do very well on

down the road.

I remember the first time after onset that Kel wandered upstairs to

play by herself in her room. This was after months of *having* to be

at least in the same room with me, for " safety " and also because she

needed me to keep her constantly occupied. It was a turning point

for her and signalled the start of her recovery.

(((Hugs Ellen))) and please keep us posted.

Kathy R in Indiana

> Thursday 1/18

>

> Sigh. Wish my news could be better, instead it is yet worse.

[Guest guest]

Hi Vivian, in Washington st.,

J. always seems to be stuck on something! This situation with his tutor

and school work has happened to him before, if i remember correctly. Perhaps

the tutor needs to understand that there is no question of J's intelligence

or ability, but its the clearing of his mind of all doubt that is blocking

progress??

This 14year old rule applies just about everywhere - and its a big

obstacle to many parents!! Here, at 14, a youth has the option to take

medication or refuse it, so its no wonder that grade 9 is full of out of

control kids! Funnily enough, many remember how well they did with their

meds after failing enough courses, so are back on track in a year or two!

;o\

Since J is allowing you to help him take his meds, this could be the

turning point for him. I remember with tom, once we found a cocktail that

worked well enough for him to think more rationally, he was ready to begin

to change. What really agrivated me was that there was no therapist

available!

Enjoy your time away with L. You two deserve it!! Don't forget to ask for

references and if past patients, or their families, are available for

questions.

Its been very slow, but you are making those tiny turtle steps!!

take care, hugs, wendy, in canada

_________________________________________________________________________

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

[Guest guest]

HI Vivian:

Thanks for the update. I am sorry your son has had a hard time with his

project. Steve also has trouble with projects and we have to break them

down into steps with his teachers and measure performance all the way

along. Like you I find this stressful as Steve wants very little input.

Even though he can have a bit of attitude and keep telling me everything is

A-OK, I have learned not to believe this unless I see evidence with my

eyes. Actually I think he appreciates the help with breaking a big,

extensive task like this down into small steps. Also getting positive

feedback at mini-steps along the way helps to keep him motivated.

It is great that you will have more information about what is going on.

That helps us back off more and lets our kids learn to manage on their own,

IMO. As far as meds goes, once your son is taking them consistently he may

very well be willing to take more responsibility for handling his meds on

his own.

Sorry but I do not know much about residential centers in Washington.

Perhaps your local NAMI group has some helpful information on this. I have

found that talking to other parents whose kids have been in the treatment

center in our state has really helped me make decisions when the docs

recommended we place Steve there. Good luck, please keep us posted, and

thank you for all your considerable support for the last 21 months!!

aloha, kathy (h)

kathyh@...

At 10:30 AM 01/27/2001 -0800, you wrote:

> I have been reading the list and value the sharing

>of trials and triumphs. I have many times told people

>who are helping me by listening or working with our

>son that I would not be able to hold up so well if it

>weren't for this on line support group! THANKS.

>

> Our OCD, depressed, 16 y/o, has had the bottom drop

>out yet again. He hasn't gone to school this week and

>it is the end of the semester. He was working on this

>huge project, and didn't get it finished, so stayed

>home working on the project. He has until Monday to

>show the project to the teacher and receive a S or I

>don't know what if he doesn't. ( I asked the school

>phycologist what he would get if he didn't show the

>project and she couldn't answer. I was wondering if it

>would be an F or I.(incomplete)

>

> While he was working on this huge project (that I

>have the feeling he took on ALL by himself with

>grandious plans of impressing everyone)he couldn't

>work on anything else. He has an iep with the school

>district. They have been sending a tutor into the home

>to help. He has been doing nothing! He couldn't write

>this paper and kept telling the tutor he would do it.

>The tutor called me and said that J said he would work

>on the paper with me. Part of his IEP states that the

>parents be left out of homework help because of the

>struggles, it would just add too much more stress in

>the home. I told the tutor this and the school had

>not told him! He started working on an outline with J

>and left feeling that J had a good start and that he

>could get it done. J has not seen the tutor since. He

>keeps calling and telling him not to come.

> Folks, I am trying to fill you in on what our

>situation is. If you are still with me now you realize

>that our son is in a horrible OCD jam.

> He did go to his Dr. appts this week. TWO GREAT

>small victories!! 1. he signed a release with his

>treatment provider that allows for exchange with the

>school phycologist. YEA!

> 2. he also agreed to allow me a more active role in

>taking his medication. (he had been taking 3 pills out

>of 7 in an average week)

> Some of you remember that we are looking into

>residential facilities. Went to one and are going to

>another on Wed. (it has been nice spending time with

>my spouse on these day trips) The whole catch to this:

>in Washington state if you are 14 y/o on up, you have

>to give your written consent to anything that concerns

>you. This will be our BIG hurdle, to get that consent.

> My hope that we can get this solved before that time

>comes. We will still prepare none the less. We also

>have to sign on with a state network of mental health

>providers. We had always refused this agency because

>they didn't have the qualified people that we needed.

>We will see if that has changed in the last few years.

>one of the places that we will be seeing on Wed. has

>connections with someone who is supposed to be an OCD

>expert.

> If anyone knows of a place we should check into

>please reapond. the places we are looking at at are

>state run, but I would like to leave no stone

>unturned. One of the big pitfalls of OCD treatment is

>that the sufferer has to WANT to work on beating it.

> OK, that's all for now. Thanks again for all your

>support over the last 21 months! Vivian in wa.st.

[Guest guest]

:

My son has had a very good response to Celexa (although he is on a high dose).

It seems to not only help the depression, but also is having an impact on the

obsessing as well. I hope your daughter has as good a response.

Jule

[Guest guest]

Dear All,

I wanted to thank everyone here for keeping me in your thoughts. Several of

you have written me off list to ask how is doing and what is up, and

I appreciate it, and apologize for kind of 'disappearing'. Funny, but things

are doing better, and I have been making an effort to try to clean up my

life-- things had gone so far downhill the past year, it is unbelievable what

had been left undone. Guess this helps with an understanding of OCD-- how

can you get ordinary tasks done, when your brain is so busy elsewhere?

is still in the hospital, 7 weeks yesterday. She is proving quite a

tough nut for them to crack, has a very persistent streak which when

harnessed will prove formidable against her problems, but which she has been

using to resist treatment. For those newbies on the list, my daughter

started with OCD behavior 2 years ago (oh, surely before that, but noticably

stopping her life at that point). She deteriorated, as did her behavior,

until she could no longer go to school, raging all the time, spitting and

cursing, and refusing to follow any rules. We finally had to hospitalize

her, both for medication management, and to try to figure out how to keep the

rages in check.

There have been some ups and downs, and I am happy to report that finally the

ups seem to be winning. She has finally come to accept that she will never

get out of there if she doesn't follow the rules, that it is a " game " (thank

you for that insight into helping her), and if she wants to win she

needs to follow directions, in a pleasant manner. Of course, the hospital

thinks they totally cured her with their point systems and consequences, I

see the medication being far more important. She is on no SSRI's anymore, I

finally convinced them these were doing more harm than good, and they had

taken her off Anafranil as there was some heart problem showing on the EKG, a

possible side effect. This of course left her with no resources against OCD,

and what good is that? They do not do ERP in the hospital, I understand this

is true of all the hospitals, so she has been defenseless against OCD. I

finally convinced the psychiatrist to add 25mg of Anafranil again, such a

small dose, and they can monitor her, and that did the trick along with all

the other meds she is on, and the very difficult learning of how to manage

her anger she has done. She is finally working hard to fight the behavior,

instead of us.

Next problem comes with transitioning back to society, and I have a feeling

that will come sooner than we are ready for. There are very few options

available for schooling for emotionally troubled middle schoolers, there is a

program associated with the hospital, and it is the most horrible place I

have ever seen. Scary. We see no other choice right now though.

very upset at having to go there, she has spent two mornings there already as

a screening, and I have promised her that if she can succeed there, can show

she can follow the rules and get along in this terrible place, that I will

find someplace better for her. Now I just have to do some magic and find

something!

One of the things I have learned, thru this list and learning so much about

OCD this past year or two, is how many of the behaviors the other children in

the hospital are exhibiting that seem classic OCD to me. Undiagnosed and

untreated. So many of these kids have mind obsessions-- many of them are

there because they believe they want to kill their parents, and they are

being treated with talk therapy, and it is killing me to watch this. I think

the OCF has a lot of work ahead of it, as do our doctors to make the mental

health professions more aware of the importance of ERP. This may not be the

fastest cure, but it does seem the surest.

Thanks again to all of your for your wisdom and your caring.

Ellen/NY

[Guest guest]

Ellen, Thanks for the update. I have been thinking about you and

wondering how it is going. I am uplifted by your news of progress.

You should get the parent of the year award for sticking it out. I

know it has not been easy for , and I think it is double hard

for the parents of a child moving throught this maze. Lucky for

she shows her full colors to all. In our case, when our son

was hopsitalized he towed the line, they discharged him to us after 9

days, and he brought his rageful OCD home. :o/ Please let

know how wonderful it is that she is getting the help she needs.

Take care, Vivian in wa.st.

> Dear All,

>

> I wanted to thank everyone here for keeping me in your thoughts.

Several of

> you have written me off list to ask how is doing and what

is up, and

> I appreciate it, and apologize for kind of 'disappearing'. Funny,

but things

> are doing better, and I have been making an effort to try to clean

up my

> life-- things had gone so far downhill the past year, it is

unbelievable what

> had been left undone. Guess this helps with an understanding of

OCD-- how

> can you get ordinary tasks done, when your brain is so busy

elsewhere?

>

> is still in the hospital, 7 weeks yesterday. She is

proving quite a

> tough nut for them to crack, has a very persistent streak which

when

> harnessed will prove formidable against her problems, but which she

has been

> using to resist treatment. For those newbies on the list, my

daughter

> started with OCD behavior 2 years ago (oh, surely before that, but

noticably

> stopping her life at that point). She deteriorated, as did her

behavior,

> until she could no longer go to school, raging all the time,

spitting and

> cursing, and refusing to follow any rules. We finally had to

hospitalize

> her, both for medication management, and to try to figure out how

to keep the

> rages in check.

>

> There have been some ups and downs, and I am happy to report that

finally the

> ups seem to be winning. She has finally come to accept that she

will never

> get out of there if she doesn't follow the rules, that it is

a " game " (thank

> you for that insight into helping her), and if she wants to

win she

> needs to follow directions, in a pleasant manner. Of course, the

hospital

> thinks they totally cured her with their point systems and

consequences, I

> see the medication being far more important. She is on no SSRI's

anymore, I

> finally convinced them these were doing more harm than good, and

they had

> taken her off Anafranil as there was some heart problem showing on

the EKG, a

> possible side effect. This of course left her with no resources

against OCD,

> and what good is that? They do not do ERP in the hospital, I

understand this

> is true of all the hospitals, so she has been defenseless against

OCD. I

> finally convinced the psychiatrist to add 25mg of Anafranil again,

such a

> small dose, and they can monitor her, and that did the trick along

with all

> the other meds she is on, and the very difficult learning of how to

manage

> her anger she has done. She is finally working hard to fight the

behavior,

> instead of us.

>

> Next problem comes with transitioning back to society, and I have a

feeling

> that will come sooner than we are ready for. There are very few

options

> available for schooling for emotionally troubled middle schoolers,

there is a

> program associated with the hospital, and it is the most horrible

place I

> have ever seen. Scary. We see no other choice right now though.

> very upset at having to go there, she has spent two mornings there

already as

> a screening, and I have promised her that if she can succeed there,

can show

> she can follow the rules and get along in this terrible place, that

I will

> find someplace better for her. Now I just have to do some magic

and find

> something!

>

> One of the things I have learned, thru this list and learning so

much about

> OCD this past year or two, is how many of the behaviors the other

children in

> the hospital are exhibiting that seem classic OCD to me.

Undiagnosed and

> untreated. So many of these kids have mind obsessions-- many of

them are

> there because they believe they want to kill their parents, and

they are

> being treated with talk therapy, and it is killing me to watch

this. I think

> the OCF has a lot of work ahead of it, as do our doctors to make

the mental

> health professions more aware of the importance of ERP. This may

not be the

> fastest cure, but it does seem the surest.

>

> Thanks again to all of your for your wisdom and your caring.

>

> Ellen/NY

[Guest guest]

HI Ellen:

Thanks for the great update on . It must be very difficult for her

to deal with her situation without any meds. She is one determined young

woman. I know that Steve would not be able to function, even in a

controlled setting like a hospital, without his antidepressants so I am in

awe of her power.

What you wrote about the undiagnosed and untreated kids in the hospital

made a shudder go through me. Really it is time that the NIMH started a

program like the NCI has for promulgating evidence-based treatments.

ly if cancer treatments were anywhere nearly as effective as OCD

treatments and they were not practised by all docs in the field, there

would be lawsuits all over the map. It is time for the standard of care to

be reinforced for all OCD sufferers and perhaps we parents are the ones to

encourage our uncoordinated national mental health systems to move in this

direction?

Sorry if my radical views offend. Take care, aloha, Kathy (h)

kathyh@...

At 08:43 AM 02/22/2001 -0500, you wrote:

>Dear All,

>

>I wanted to thank everyone here for keeping me in your thoughts. Several of

>you have written me off list to ask how is doing and what is up, and

>I appreciate it, and apologize for kind of 'disappearing'. Funny, but

things

>are doing better, and I have been making an effort to try to clean up my

>life-- things had gone so far downhill the past year, it is unbelievable

what

>had been left undone. Guess this helps with an understanding of OCD-- how

>can you get ordinary tasks done, when your brain is so busy elsewhere?

>

> is still in the hospital, 7 weeks yesterday. She is proving quite a

>tough nut for them to crack, has a very persistent streak which when

>harnessed will prove formidable against her problems, but which she has been

>using to resist treatment. For those newbies on the list, my daughter

>started with OCD behavior 2 years ago (oh, surely before that, but noticably

>stopping her life at that point). She deteriorated, as did her behavior,

>until she could no longer go to school, raging all the time, spitting and

>cursing, and refusing to follow any rules. We finally had to hospitalize

>her, both for medication management, and to try to figure out how to keep

the

>rages in check.

>

>There have been some ups and downs, and I am happy to report that finally

the

>ups seem to be winning. She has finally come to accept that she will never

>get out of there if she doesn't follow the rules, that it is a " game " (thank

>you for that insight into helping her), and if she wants to win she

>needs to follow directions, in a pleasant manner. Of course, the hospital

>thinks they totally cured her with their point systems and consequences, I

>see the medication being far more important. She is on no SSRI's anymore, I

>finally convinced them these were doing more harm than good, and they had

>taken her off Anafranil as there was some heart problem showing on the

EKG, a

>possible side effect. This of course left her with no resources against

OCD,

>and what good is that? They do not do ERP in the hospital, I understand

this

>is true of all the hospitals, so she has been defenseless against OCD. I

>finally convinced the psychiatrist to add 25mg of Anafranil again, such a

>small dose, and they can monitor her, and that did the trick along with all

>the other meds she is on, and the very difficult learning of how to manage

>her anger she has done. She is finally working hard to fight the behavior,

>instead of us.

>

>Next problem comes with transitioning back to society, and I have a feeling

>that will come sooner than we are ready for. There are very few options

>available for schooling for emotionally troubled middle schoolers, there

is a

>program associated with the hospital, and it is the most horrible place I

>have ever seen. Scary. We see no other choice right now though.

>very upset at having to go there, she has spent two mornings there already

as

>a screening, and I have promised her that if she can succeed there, can show

>she can follow the rules and get along in this terrible place, that I will

>find someplace better for her. Now I just have to do some magic and find

>something!

>

>One of the things I have learned, thru this list and learning so much about

>OCD this past year or two, is how many of the behaviors the other children

in

>the hospital are exhibiting that seem classic OCD to me. Undiagnosed and

>untreated. So many of these kids have mind obsessions-- many of them are

>there because they believe they want to kill their parents, and they are

>being treated with talk therapy, and it is killing me to watch this. I

think

>the OCF has a lot of work ahead of it, as do our doctors to make the mental

>health professions more aware of the importance of ERP. This may not be the

>fastest cure, but it does seem the surest.

>

>Thanks again to all of your for your wisdom and your caring.

>

>Ellen/NY

[Guest guest]

Dana M,

The dose of zoloft can be increased. You may find that the initial 6

weeks on the zoloft that her personality is different (we had a

monster) but after that, our sweet kid returned. At 10 her zoloft dose

was 200mg - and she stayed at this dose for 18 months. She is now on

50mg zoloft.

> The counselor has also noticed during a recent visit that

she was pulling a hair out, one at a time, looking at it,

sometimes putting it in her mouth, and then deliberately

dropping it. She said she did this 10-12 times in a 45-50

minute period. <

The therapist is describing the symptoms of trichotillamania. This is

a spectrum disorder of OCD.

Good to hear that you are accessing a trained Cognitive Behavioral

Therapist. I " m sure you will see a difference within a short time!

You must take care of yourself. If you can, look for a therapist

trained in working with family members of people in the mental health

system. It will do you a world of good to learn that you are not alone

in this struggle. Of course we are here too!

take care, wendy, in canada

================================================================

>........He took her off of the Prozac and put her on Zoloft. She

started off at 50mg. When we returned a month later, my daughter's

anxiety level had dropped but she was having OCD thoughts again. The

doctor increased her to 75-100mg. We started off at 75, but she has

been having more thoughts again, so I just took her up to 100mg. Is

this normal for Zoloft, or is this the wrong medication for her? The

teachers are noticing more behavior isssues- laughing at inappropriate

times, jumping up out of seat and wobbling when called on to read.

> The therapist we originally were seeing was not doing CBT. We have

just found one through our new psychiatrist that is trained, so I'm

hoping that with the therapy we will see some improvement. We go

see the psychiatrist again next week, but I'm starting to feel

somewhat depressed that the new medication isn't doing as well as the

Prozac at keeping the thoughts away. Help!! Any similar experiences

with Zoloft? Is Luvox better? Thanks for any imput. > Dana M.

[Guest guest]

Hi Dana, much of what your daughter has been experiencing can be side

effects of SSRIs (any of them), especially to begin with as a child's dose

is being adjusted. These reactions are often more pronounced at the

beginning and tail off with time, once the child is stabilized on the SSRI.

My daughter was very activated (the silly giggling, ants in the pants, etc.)

on Prozac and somewhat so on Zoloft, and not at all on Luvox. The hair

pulling, putting it in the mouth, is trichotillitomania, which is a spectrum

disorder. My daughter did this briefly (and abruptly) when started on

Prozac, but we haven't seen it with any other meds since. Unfortunately

it's difficult to draw conclusions from another child's experience with

these meds as kids' reaction to them is so individual.

It's great that you have been able to find a competent CBT for your

daughter, as successful therapy can be her path away from the SSRIs and

their side effects. Some kids can reduce their doses (lower dose can mean

fewer side effects) and some have been able to stop taking SSRIs after

successful E & RP therapy.

Kathy R in Indiana

update

> OCD thoughts were greatly reduced. In January, our insurance

> changed, and we started to see a new psychiatrist. He took her off

> of the Prozac and put her on Zoloft. She started off at 50mg. When

> we returned a month later, my daughter's anxiety level had dropped

> but she was having OCD thoughts again. The doctor increased her to

> 75-100mg. We started off at 75, but she has been having more

> thoughts again, so I just took her up to 100mg. Is this normal for

> Zoloft, or is this the wrong medication for her? The teachers are

> noticing more behavior isssues- laughing at inappropriate times,

> jumping up out of seat and wobbling when called on to read. The

> counselor has also noticed during a recent visit that she was pulling

> a hair out, one at a time, looking at it, sometimes putting it in her

> mouth, and then deliberately dropping it. She said she did this 10-

> 12 times in a 45-50 minute period.

>

> The therapist we originally were seeing was not doing CBT. We have

> just found one through our new psychiatrist that is trained, so I'm

> hoping that with the therapy we will see some improvement. We go see

> the psychiatrist again next week, but I'm starting to feel somewhat

> depressed that the new medication isn't doing as well as the Prozac

> at keeping the thoughts away. Help!! Any similar experiences with

> Zoloft? Is Luvox better? Thanks for any imput.

[Guest guest]

Hi Ellen,

That's great news! I am so happy for all of you!

Take care,

[Guest guest]

Hi ellen, in NY

It HAS been a long 9 weeks, eh? Well, you made it and so did

allison!

You are right to be extra careful not to slip into old patterns.

This is extremly important - I know this from experience!! Sometimes

it helps to write routines down so that you arent manipulated into

doing something different. We found that maintaining routine as the

most critical part of integration back into the family.

Big hugs to you for your success in lasting this ordeal!!

take care, wendy in canada

================================================================

> Thank you all for being with me during the longest 9 weeeks of my

> life! finally home. Her behavior in some ways too exemplary

> for a teenager, but I am sure this will wear off after a while. I

> better enjoy it while it lasts. Also too medicated, my lively child

> kind of zombie-ish but the day program she is in thinks the same,

and will start decreasing her meds in a week or so, after she settles

> in. I know there is still lots of work ahead of us, and we must be

ever vigilant not to slip back into old patterns, but right now I am

just enjoying her being home!

> > Ellen

[Guest guest]

Hi Vivian, in washington state!!!

Thanks for the update!! Good to hear that your daughter is well into her

recovery.

About changing J's tutor - is it the tutor? Have you observed them

together? Perhaps a change in person, before dropping the credit will help

him academically?? It might be an ocd thing, but this sounds like one of the

things you want to bend a bit on, especially since he is attending and doing

well in his other classes. How many credits will he earn this year and how

many should he be able to earn?? (Tom continues to earn about 6-7 instead

of 8 possible credits due to his slowness - and sleeping in class!)

>I have noticed when I am feeling low that I get frustrated

with OCD. That doesn't help things, but when I want things

to go smoothly and there is OCD in the way saying no, I have

to take another shower before I go out. GEEZ it gets

frustrating!

Vivian, your energy is probably so low right now and so things are effecting

you that didnt bother you before. Perhaps taking hte shower is not so much

an ocd tendency, but a coping mechanism to wake you up, get a few minutes on

your own, or give you time to collect yourself and start fresh??? Remember,

the difference with the diagnosis of ocd and just a regular behaviour is the

TIME it takes from your regular routine. Is your shower taking effecting

your daily living? Is it preventing you from doing other things, like

getting to work on time? IF you think this is ocd raising its ugly head, YOU

know what to do!!

BIG HUGS, vivian, hopefully I'll see you on the chat, wendy

================================================================

>Our ALMOST 17 y/o OCD son is doing very well in his two H.S. classes.

>YEA! He takes another class over the internet and at home and those

>classes are monitored by a tutor hired by the school district. He has

>(or OCD has) decided that he doesn't like the tutor, so he is not

>doing the work. He keeps feeling like the tutor is trying to do the

>work for him. The tutor was supposed to help him keep track of his

>work so he won't get behind. I have taken the stance that it is HIS

>credit he is giving up on. I don't know what else to think at this

>point. The school phycologist has written the tuotr into his IEP so I

>am thinking I need to come up with another plan to keep his IEP and

>get rid of the tutor. I think that that sounds like OCD is winning

>this one...but this isn't working out. Any suggestions out there?

_________________________________________________________________________

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

[Guest guest]

Hi Vivian, it's great to read that is doing better and I hope he has

continued improvement on the increased dose of Celexa.

Is the doctor suggesting adding an antipsychotic to the Celexa, or replacing

the SSRI with an antipsychotic? Kellen has done well over time on a

Zoloft-Risperdal combo.

Kathy R. in Indiana

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

From: <ruth2b4@...>

> avoids certain triggers. I sure can see an improvement!! BUT it is

> still not great. He agreed to up the dose of Celexa to 100mg. We also

> talked about changing the meds. One suggestion was Efexor OR some

> type of anti-psycotic drug. I am thinking we need to stick with the

> Celexa to see what happens. had been complaining about being

> tired all the time. He is also doing a project on Chronic Fatigue

> Syndrome....and he told me he think he suffers from that! Now if we

> could just get him to study about OCD!! Vivian in Wa.St.

[Guest guest]

In a message dated 6/12/01 2:37:57 AM Pacific Daylight Time,

writes:

>

Hi Leah, you are so sweet to be thinking of me! Yes, it's been a rough year

indeed, but is now on Trileptal (same dose three times a day) plus

Depakote 500 mg. time released twice a day. He is doing fairly well, but we

never got back that which we had gained in January when he was on the

Trileptal/Lithium (Librium? I can't even remember which one now!) the one

that caused his thyroid to go out of whack!

The thyroid doctor said if we really saw good effects with the Lithium (?),

we can suggest to pysch to start on a lower dose this time (yes, but

will it have the same calming effect as before???) and if need be, a low dose

of the Synthroid so as not to throw the thyroid out of whack again.

I am opting for the present course of med's, as will be going to see the

neurologist on July 5th, as I am anxious to have a CAT scan and MRI done (EEG

so far was normal). I've been told by many people that sometimes the

neurologist can find something that causes wild behavior in our kids that a

lot of pysch's can't, and can prescribe the proper med's.

This has happened with my neighbor across the street, you know who I mean!

Her daughter was super hyper, just like , for years, until she saw the

neuro. and it was a world of difference!

I just hope I have the same luck!

Take care,

[Guest guest]

,

Glad to hear from you again , you and your family were in my

prayers . I hope you do have the same luck as your neighbor did .

Luck with 's visit with the Neurologist . Take Care .

Irma , 12, DS/ASD .

-- In @y..., Ltb3105@a... wrote:

> In a message dated 6/12/01 2:37:57 AM Pacific Daylight Time,

> @y... writes:

>

>

> >

>

> Hi Leah, you are so sweet to be thinking of me! Yes, it's been a

rough year

> indeed, but is now on Trileptal (same dose three times a day)

plus

> Depakote 500 mg. time released twice a day. He is doing fairly

well, but we

> never got back that which we had gained in January when he was on

the

> Trileptal/Lithium (Librium? I can't even remember which one now!)

the one

> that caused his thyroid to go out of whack!

>

> The thyroid doctor said if we really saw good effects with the

Lithium (?),

> we can suggest to pysch to start on a lower dose this time

(yes, but

> will it have the same calming effect as before???) and if need be,

a low dose

> of the Synthroid so as not to throw the thyroid out of whack again.

>

> I am opting for the present course of med's, as will be going

to see the

> neurologist on July 5th, as I am anxious to have a CAT scan and MRI

done (EEG

> so far was normal). I've been told by many people that sometimes

the

> neurologist can find something that causes wild behavior in our

kids that a

> lot of pysch's can't, and can prescribe the proper med's.

>

> This has happened with my neighbor across the street, you know who

I mean!

> Her daughter was super hyper, just like , for years, until she

saw the

> neuro. and it was a world of difference!

>

> I just hope I have the same luck!

>

> Take care,

>

>

>

>

[Guest guest]

Thanks CK!!!!!!!!!!!!!!

Update

> Hi everyone,

>

> Just thought I'd take a moment to catch you up on what's going on.

>

> We're going this week to see Pathfinder, and determine if it would be a

good

> place for Ian. This is still an excrutiating thing to do.

>

> To make things even more interesting, this weekend, Ian has been away on a

> respite weekend. I took him over on Friday afternoon, and will pick him

up

> tomorrow afternoon. The whole weekend has been easy, calm, with very

little

> stress. And yet, tonight when the kids were in the backyard catching

> fireflies, I could sense the hole left by Ian's not being with us.

>

> We used the time to do several things we can't do easily with Ian -- eat

> dinner out, play miniature golf, take family walks. We've gotten a

feeling

> for what " normal " life is like -- and while we're all less stressed out, I

> still feel sad that Ian can't do these things with us.

>

> I'll write again after we see Pathfinder.

>

> CK,

> Mom to Ian (2/89),

> (9/90),

> and Rose (6/94)

>

>

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

> Checkout our homepage for information, bookmarks, and photos

of our kids. Share favorite bookmarks, ideas, and other information by

including them. Don't forget, messages are a permanent record of the

archives for our list.

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

>

>

[Guest guest]

In a message dated 7/9/01 12:07:22 AM Eastern Daylight Time,

ckc@... writes:

> To make things even more interesting, this weekend, Ian has been away on a

> respite weekend. I took him over on Friday afternoon, and will pick him up

> tomorrow afternoon. The whole weekend has been easy, calm, with very little

> stress. And yet, tonight when the kids were in the backyard catching

> fireflies, I could sense the hole left by Ian's not being with us.

I can only imagine CK. I'm really glad though that you and your family got

some peace and quality family time together. Especially at this moment when

you are feeling so distraught. Please let us know how you make out with

your visit to PV.

{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}}

Donna

P.S. Where does Ian go for respite? And how does he do there? Just

curious. This past weekend, despite all my anxiety about the growing

aggression in Maddie, my BIL babysat her so Duff and I could take Alison and

my nephew out on the boat. We were out for 4 hours---so refreshing. But

when I came home, my BIL said that things went well, except at one point he

couldn't find her. He told me he was terrified. Turns out she was hiding

in the closet.

[Guest guest]

CK,

I was wondering if you could arrange for Ian to have an out of home

placement but still come home on weekends when you want him to. I have heard

of this working for people and it would be a compromise that maybe you could

live with. How far away is Pathfinders from your home?

Marisa,

Mom to Miles 14, Brook 11, and Genevieve 3 yrs

[Guest guest]

> I was wondering if you could arrange for Ian to have an out of home

> placement but still come home on weekends when you want him to. I have

heard

> of this working for people and it would be a compromise that maybe you

could

> live with. How far away is Pathfinders from your home?

Pathfinder is a few hours away, but we don't mind the drive. We intend,

should we get him in there, to visit him at least every couple of weeks, and

bring him home often, certainly for family holidays.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

[Guest guest]

> P.S. Where does Ian go for respite? And how does he do there?

Ian goes to a nearby respite house. He's gone only twice so far, once in

January, and then last weekend. He has another night lined up in August.

He loves it. He gets a lot of attention, they have ninetendo and all sorts

of things we don't have here, and it's his territory. When I take him

there, he almost kicks me out: " Sorry you can't stay mom, bye. "

He doesn't sleep there, however. He was up until 3 am one night, 5 am

another. He sits in bed and reads. I suppose as long as he's not bothering

anyone, they don't mind, but they do make note of it.

CK,

Mom to Ian (2/89),

(9/90),

and Rose (6/94)

[Guest guest]

take advantage of those respite weekends while you

can, when we lived away from home nathan got to go to

a respite weekend every month it was great and he too

loved it as much as we did and for the special

time we were granted , but since we moved

home there isnt any around here, and its about an hour

away, i am thinking i might try to see, its only one

weekend a month,but have to talk hubby into it, shawna

__________________________________________________

[Guest guest]

In a message dated 7/14/01 11:16:30 PM Eastern Daylight Time,

ckc@... writes:

>

> He doesn't sleep there, however. He was up until 3 am one night, 5 am

> another. He sits in bed and reads. I suppose as long as he's not bothering

> anyone, they don't mind, but they do make note of it.

Well, at least he reads instead of roaming the halls, like Maddie does on her

sleepless nights. OR another preferred activity--------------jumping on

Mommy and Daddy's bed while they try and sleep. It is good though CK, that

they make note of it. Documentation of EVERYTHING is so important. Makes

figuring out problems MUCH easier if you know what precipitates it.

{{{{{{{{{hugs}}}}}}}}}

Donna