Re: Quitting meds

[Guest guest]

You may want to really think about rocking the boat with your

daughter going into middle school (a change) and puberty just around

the corner. You could add therapy, but if the medication is working,

you may not want to stop it and go to just therapy. Therapy is done

in stages with the things that bother them the least worked on

first. My daughter had to be stabilized on meds before she would

even attempt therapy.

Another thought for the 3 year olds, are there any teenagers nearby

you could pay to play with them so you could have a free hour?

How does your daughter feel about stopping meds? My dd (14) does not

want to go off them and though she is not in active therapy sessions

anymore, she still gives herself exposures to stay on top of her ocd.

Sandy

>

> A bit of background....my 10 yr. old (almost 11) DD had a severe

onset

> of OCD at age 7. It was terrible trying to get her diagnosed. She

> was on Celexa with minimal effect for most of this time. Her OCD

> manifests itself with fears of vomiting, so she can't eat, separate

> from me, go to school--it's the worst thing I've ever experienced.

> She was hospitalized for a month, 10 days of that with a feeding

tube.

> She was wasting away. So, when her OCD was severe, it was life

> threatening.

>

> Last spring she had a terrible waxing period. Same as before

except

> we were quicker (I should say her pdoc) to act and she switched

her to

> Prozac, 30 mgs. After a terrible ramping up period--she's very

> stable, happy, life is good! She's been stable since mid-June last

> year. I know her OCD is still in the background, she does some

quirky

> things that only I see (not even my DH). After 2 1/2 yrs. of no

> playdates, no vacations, and terrible stress, we are enjoying life

> again--all of us! She went to New York with dad for 5 days this

> summer, we went to MN for a 9 day visit, we've gone on weekend

> trips....and she's fine! I can't tell you what a difference this

> medication has made.

>

> We had a 6 mos. appt. (yes--it's been 6 whole months since we've

seen

> her pdoc!) and she tells my DD that in June, when school is out,

she

> can wean off the Prozac and try some therapy. WHAT?!? I told her

> (pdoc) that we'd have to talk privately in June because I had

> misgivings about that). She said, Okay, we'll talk in June. So,

now

> I'm trying to gather information. Everything that I've read says

that

> you can get better with therapy, true. However, I'm not confident

> that our pdoc, even though we really like her in general, can

provide

> the right therapy. She says things like, " Well, her brain will

have

> grown and matured and healed. " I just read a link on this site

that

> said it was CHRONIC. I also think that obsessive thoughts would be

> hard to deal with in therapy because there's nothing outward we can

> work on. It's just my DD battling her thoughts. And the

> repercussions of therapy not going well is her health and

happiness.

> I guess I pictured her tackling therapy when she was older and more

> mature, even though I know tons of your younger children are in

> therapy. Also, she going to middle school next year--isnt' that a

big

> enough challenge? I know the Prozac would be out of her system

right

> about the time school starts--yikes!

>

> What are your thoughts? Maybe I'm too worn out by the past 2 1/2

> years of battling this daily to give therapy a chance. I also have

a 7

> yr. old and 3 year old twins that are a handful, so I don't have a

lot

> of time to devote to therapy appts. When we were going so often to

> the Dr. the first year and when she was hospitalized, my parents

flew

> out for an extended stay and my DH took a lot of time off work. I

> dont' know how we'd manage if she got that ill again, although of

> course, we would. This is the same Dr. that recommended an

expensive

> anxiety workbook and tapes last year before she started the

Prozac.

> We ordered the materials and found it would take an hour a day

with us

> sitting with her, helping her to do the exercises. That's fine,

but,

> realistically, my 3 year olds are not just going to not need me

for an

> hour a day while I spend this time with DD. We tried doing it

after

> they were in bed, but DD was too tired, understandably! And her

OCD

> gets worse when she doesn't get enough sleep. Argh! What a

dilemma.

>

[Guest guest]

Sandy wrote:

> You may want to really think about rocking the boat with your

> daughter going into middle school (a change) and puberty just around

> the corner. You could add therapy, but if the medication is working,

> you may not want to stop it and go to just therapy. Therapy is done

> in stages with the things that bother them the least worked on

> first. My daughter had to be stabilized on meds before she would

> even attempt therapy.

Sandy,

Right, I'd forgotten temporarily about puberty in there too.

> Another thought for the 3 year olds, are there any teenagers nearby

> you could pay to play with them so you could have a free hour?

I could arrange this, but we are moving in 6 weeks, so I don't know what

situation I will have once we move.

> How does your daughter feel about stopping meds? My dd (14) does not

> want to go off them and though she is not in active therapy sessions

> anymore, she still gives herself exposures to stay on top of her ocd.

>

Mikayla wants to quit taking the meds only because she doesn't like the

taste. ?? This is why I don't think she's mature enough to be making

these decisions. Other than that, she doesn't have any side effects.

Thanks for your input!

Dina

[Guest guest]

Hi Dina,

Just my thoughts and was only on medication 2 school years

(Celexa). I would wait at least 2 years.

Asking various people here and elsewhere, all had different answers

as to " how long " to stay on a medication for OCD before coming off,

even doctors varied. I even heard 5 yrs and 7 years on it for

kids/teens! All have their own opinions/thoughts, as I have mine too

I guess, LOL!

wanted to come off the Celexa, by the way. I sort of wanted

him on it at least 3 years, figuring " 3 years of being stable " etc.

But part of the side effect for him was the tiredness and I hated to

see him sleep so much. ANYWAY, he began it right at the start of 9th

grade and the last time he took any was last May, the end of 10th

grade; so almost 2 years on it. But he was doing pretty well -

compared to the beginning years - with his OCD when he began Celexa;

it was still around but wasn't so severe or bothersome when he began

it (we decided to try Celexa, one reason to see if more benefit than

using only the inositol powder, which also did well for him; quit the

inositol and went on Celexa; I wondered would OCD completely

disappear on Celexa too, since it's an SSRI med and inositol helped,

so maybe a med would help more)

's OCD was very bad when it began in 6th grade, I wondered

about hospitalization then too. But by the end of 8th grade, ups and

downs along the way, he was great compared to the start. I'm just

trying to say OCD wasn't really that bad when he began his Celexa.

So I just personally feel that your daughter should stay on the

Prozac longer. And, yes, I think puberty could certainly kick in

and maybe start OCD waxing a bit, body going through changes,

emotions, etc. And starting a new school, whether excitement or

anxiety, both can kick up OCD for some.

Ask the doctor " why now?, why not later?, what harm? "

Most importantly, go with YOUR gut feeling on this as you have been

the one living with OCD these years!

>

> A bit of background....my 10 yr. old (almost 11) DD had a severe

onset

> of OCD at age 7. It was terrible trying to get her diagnosed. She

> was on Celexa with minimal effect for most of this time. Her OCD

> manifests itself with fears of vomiting, so she can't eat, separate

[Guest guest]

Devorah Knaff wrote:

> I can understand how anxious you'd be about making a change when

> things are

> going relatuvely well. I don't have an experience like yours since my

> daughter started off with CBT (although she later took Celexa for

> depression). But she was 11 when she started therapy and it made a big

> difference very quickly -- she went from not being able to leave her

> room to

> being able to go back to school within three weeks.

>

> Does her doctor have experience in CBT?

>

Well, she claims she knows all about it and nods at all the right times,

but still says things that makes me think she doesn't get it. Like the

" brain has healed enough by now " comment. She also started therapy with

my Mikayla when she was bad last spring and we had just started the

Prozac. She only wanted to see her weekly, suggested the anxiety

workbook (Huh?), told her to think about vomiting until she was bored

with it. That was it. No specifics, and I doubt Mikayla voluntarily

thought about vomiting at all. Then her Prozac kicked in and all was

fine after that. So, I'm nervous.

Dina

[Guest guest]

Nchaotic@... wrote:

>

> I agree with Sandy - mainly about the middle school challenge. This

> was the

> WORST time with my son - barely made it through middle school and he

> was on

> meds. My son is not in therapy because we need to have his meds stable

> before even attempting that (he's 14). Does you p-doc have extensive

> experience

> in the therapy aspect of treatment (assuming CBT or ERP?). I'd

> definitely

> question this and talk to her frankly about your fears, etc. I don't

> know how

> comfortable I'd feel if our doctor told us tomorrow he/she thought my

> son's

> brain had " healed " now that he's matured and been on medication. I

> think it's

> plainly evident that it just doesn't " heal " up like an injury just by

> the

> experiences on this list.

>

> If it were me, I'd schedule some time to talk with her alone and explain

> your fears and hear her reasoning again. I also think I would have

> preferred

> she not bring this up yet in front of my son about weaning down meds

> until she

> had spoken with me first and explained her rationale.

>

> My opinion anyway...

Thanks, ! My opinion too! Of course my 10 yr. old was excited to

hear she may get off meds--who doesn't want to feel " normal? " (Whatever

that is anyway!) This is also the same Dr. that didn't recognize that

the Celexa wasn't working for her and waited until she completely

stopped eating last spring to make a med. switch. I would look for a

new pdoc, but I've called my list and there isnt' anyone else that pops

out at me. Also, we have a track record now and the Prozac's going

well......

Dina

[Guest guest]

>

> Ask the doctor " why now?, why not later?, what harm? "

>

> Most importantly, go with YOUR gut feeling on this as you have been

> the one living with OCD these years!

>

>

>

> --

Thanks, Chris. That's what MY gut feeling is--wait for a couple of

years. She didn't have any good explanations for " why now? " She said

there were no long term detrimental effects of taking the Prozac. I

guess I want what everyone else wants--my child to be happy and

healthy. She's so happy now and full of life--4 dance classes, piano,

choir--loves it all! I would hate to see her retreat into the shell of

a girl that she was last spring.

I really think they have NO IDEA how consuming it is to live with an

OCD-sick child. It's so mentally taxing on us all.

Dina

[Guest guest]

I can see a possible compromise here -

If you meet the doctor alone and discuss your concerns and you are

satisfied with her answers then how about just reducing the prozac

and allowing some of the ocd to emerge and teaching her the cbt to

fight it back.

Then, if middle school gets too tough (it's kind of a mean age -

everyone is much nicer in high school) or if puberty makes it flare

up to crisis level you can ramp her back up to full dose of prozac

rather quickly + she'll have learned some techniques for reducing it

herself! [also, if the prozac is no longer effective at that point,

has pooped out, she'll at least have it in her system while another

ssri is tried].

The doctor may agree to this since essentially you are bending to her

desire to treat with cbt -

>

> A bit of background....my 10 yr. old (almost 11) DD had a severe

onset

> of OCD at age 7. It was terrible trying to get her diagnosed. She

> was on Celexa with minimal effect for most of this time. Her OCD

> manifests itself with fears of vomiting, so she can't eat, separate

> from me, go to school--it's the worst thing I've ever experienced.

> She was hospitalized for a month, 10 days of that with a feeding

tube.

> She was wasting away. So, when her OCD was severe, it was life

> threatening.

>

> Last spring she had a terrible waxing period. Same as before except

> we were quicker (I should say her pdoc) to act and she switched her

to

> Prozac, 30 mgs. After a terrible ramping up period--she's very

> stable, happy, life is good! She's been stable since mid-June last

> year. I know her OCD is still in the background, she does some

quirky

> things that only I see (not even my DH). After 2 1/2 yrs. of no

> playdates, no vacations, and terrible stress, we are enjoying life

> again--all of us! She went to New York with dad for 5 days this

> summer, we went to MN for a 9 day visit, we've gone on weekend

> trips....and she's fine! I can't tell you what a difference this

> medication has made.

>

> We had a 6 mos. appt. (yes--it's been 6 whole months since we've

seen

> her pdoc!) and she tells my DD that in June, when school is out, she

> can wean off the Prozac and try some therapy. WHAT?!? I told her

> (pdoc) that we'd have to talk privately in June because I had

> misgivings about that). She said, Okay, we'll talk in June. So,

now

> I'm trying to gather information. Everything that I've read says

that

> you can get better with therapy, true. However, I'm not confident

> that our pdoc, even though we really like her in general, can

provide

> the right therapy. She says things like, " Well, her brain will have

> grown and matured and healed. " I just read a link on this site that

> said it was CHRONIC. I also think that obsessive thoughts would be

> hard to deal with in therapy because there's nothing outward we can

> work on. It's just my DD battling her thoughts. And the

> repercussions of therapy not going well is her health and

happiness.

> I guess I pictured her tackling therapy when she was older and more

> mature, even though I know tons of your younger children are in

> therapy. Also, she going to middle school next year--isnt' that a

big

> enough challenge? I know the Prozac would be out of her system right

> about the time school starts--yikes!

>

> What are your thoughts? Maybe I'm too worn out by the past 2 1/2

> years of battling this daily to give therapy a chance. I also have

a 7

> yr. old and 3 year old twins that are a handful, so I don't have a

lot

> of time to devote to therapy appts. When we were going so often to

> the Dr. the first year and when she was hospitalized, my parents

flew

> out for an extended stay and my DH took a lot of time off work. I

> dont' know how we'd manage if she got that ill again, although of

> course, we would. This is the same Dr. that recommended an

expensive

> anxiety workbook and tapes last year before she started the Prozac.

> We ordered the materials and found it would take an hour a day with

us

> sitting with her, helping her to do the exercises. That's fine,

but,

> realistically, my 3 year olds are not just going to not need me for

an

> hour a day while I spend this time with DD. We tried doing it after

> they were in bed, but DD was too tired, understandably! And her OCD

> gets worse when she doesn't get enough sleep. Argh! What a

dilemma.

>

[Guest guest]

Oh boy Dina. I suggest at least getting a second opinion about this. It is

not a given that all ped pdocs agree re the need for med vacations. Some

do, some don't. Ours has never suggested such a thing in almost 7 years,

and when I asked why not, he asked me why on Earth I'd want to tamper with a

delicate balance that was working. He said every unimpaired year my child

racked up was to the positive. At least now you know what camp your pdoc is

in, and that this issue is likely to come up from time to time.

I'm with you too in wanting to not rock the boat, at least not yet. You

haven't even had a year of normal yet! If your dd is like mine, and

apparently lots of kids with OCD, she may not remember clearly what it was

like when OCD was raging.

I do suggest CBT/ERP if there is anything symptomwise for her to work on.

My child's OCD was severe, and the SSRI that worked for her finally, still

left a lot of OCD to work on. Adding therapy got her to where it sounds

like your dd is. I don't know what I would have done if meds alone gave

such relief! I know darn well I would have taken my time considering

therapy, and thought long and hard about doing anything such as withdrawing

the SSRI, that might invite OCD back. I felt we all deserved all the

OCD-free time we could get after coming through the hard two years following

onset :-)

Liquid Prozac does taste horrible, if that is what she's taking. Can she

swallow pills? Being put on liquid Prozac taught my young 5-year-old to

swallow pills, in about a day. Talk about motivating! LOL

Maybe your doctor was speaking in metaphorical terms, but you are right that

OCD is considered a serious, chronic, waxing and waning brain disorder.

There has been some research to suggest that SSRIs may have some protective

and some normalizing effects on the developing brain, but I think that's far

from a solid conclusion at this point. I can remember no one else ever

posting to this list, that their pdoc suggested a med vacation because of

brain maturing and healing due to a period of SSRI use.

Kathy R. in Indiana

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

From: " dina_n_jones " <dina.n.jones@...>

>A bit of background....my 10 yr. old (almost 11) DD had a severe onset

> of OCD at age 7. It was terrible trying to get her diagnosed. She

> was on Celexa with minimal effect for most of this time. Her OCD

> manifests itself with fears of vomiting, so she can't eat, separate

> from me, go to school--it's the worst thing I've ever experienced.

> She was hospitalized for a month, 10 days of that with a feeding tube.

> She was wasting away. So, when her OCD was severe, it was life

> threatening.

>

> Last spring she had a terrible waxing period. Same as before except

> we were quicker (I should say her pdoc) to act and she switched her to

> Prozac, 30 mgs. After a terrible ramping up period--she's very

> stable, happy, life is good! She's been stable since mid-June last

> year. I know her OCD is still in the background, she does some quirky

> things that only I see (not even my DH). After 2 1/2 yrs. of no

> playdates, no vacations, and terrible stress, we are enjoying life

> again--all of us! She went to New York with dad for 5 days this

> summer, we went to MN for a 9 day visit, we've gone on weekend

> trips....and she's fine! I can't tell you what a difference this

> medication has made.

>

> We had a 6 mos. appt. (yes--it's been 6 whole months since we've seen

> her pdoc!) and she tells my DD that in June, when school is out, she

> can wean off the Prozac and try some therapy. WHAT?!? I told her

> (pdoc) that we'd have to talk privately in June because I had

> misgivings about that). She said, Okay, we'll talk in June. So, now

> I'm trying to gather information. Everything that I've read says that

> you can get better with therapy, true. However, I'm not confident

> that our pdoc, even though we really like her in general, can provide

> the right therapy. She says things like, " Well, her brain will have

> grown and matured and healed. " I just read a link on this site that

> said it was CHRONIC. I also think that obsessive thoughts would be

> hard to deal with in therapy because there's nothing outward we can

> work on. It's just my DD battling her thoughts. And the

> repercussions of therapy not going well is her health and happiness.

> I guess I pictured her tackling therapy when she was older and more

> mature, even though I know tons of your younger children are in

> therapy. Also, she going to middle school next year--isnt' that a big

> enough challenge? I know the Prozac would be out of her system right

> about the time school starts--yikes!

>

> What are your thoughts? Maybe I'm too worn out by the past 2 1/2

> years of battling this daily to give therapy a chance. I also have a 7

> yr. old and 3 year old twins that are a handful, so I don't have a lot

> of time to devote to therapy appts. When we were going so often to

> the Dr. the first year and when she was hospitalized, my parents flew

> out for an extended stay and my DH took a lot of time off work. I

> dont' know how we'd manage if she got that ill again, although of

> course, we would. This is the same Dr. that recommended an expensive

> anxiety workbook and tapes last year before she started the Prozac.

> We ordered the materials and found it would take an hour a day with us

> sitting with her, helping her to do the exercises. That's fine, but,

> realistically, my 3 year olds are not just going to not need me for an

> hour a day while I spend this time with DD. We tried doing it after

> they were in bed, but DD was too tired, understandably! And her OCD

> gets worse when she doesn't get enough sleep. Argh! What a dilemma.

[Guest guest]

Here are my thoughts.

My daughter, almost 12 yo, was diagnosed at the beginning of sixth grade.

I've suspected her having OCD for much longer than that. I think what really

enhanced her symptoms though was starting middle school last year.

I really cannot blame you for wanting your daughter to stay on meds. Mine

started therapy immediately and is not on meds, however she never had any life

threatening symptoms and her OCD does not consume her life.

Therapy is great and is recommended in conjunction with medications. I would

want to start her on therapy before cutting down on the meds, sort of like

giving her something to relay on if the symptoms return.

Also make sure her doc knows how to do Cognitive Behavioral Therapy since it

seems that it is the only therapy that works with OCD.

I cannot imagine having also two other children and having to deal with what

you are dealing with your daughter. I have only one and it is hard enough.

Discuss all your worries with the doctor and make a list of concerns and be

prepared to discuss options if things go wrong with cutting down on meds.

Middle school is a terrible time of change for our children. Not only the

environment changes, but they are changing as well. The insecurity is

overwhelming and my daughter had a very hard time adjusting. She still says

that she

hates school, however her grades are good. Hung in there. Stefi.