Re: Coming off of Prozac after 7 yrs, great successes fighting back OCD & a question

May 30, 2012

My daughter decided at age 18 to go off her medication after about 8 or

9 years - meds for Tourette's Syndrome, OCD, and ADHD. She was off all

medication until about 2 years ago when she decided she needed

medication for ADHD again. She is now 26 years old.

She is a successful college senior with a two-year tuition scholarship

to a very expensive liberal arts college, lots of friends (after very

few during middle and high school), a job, a boyfriend, drives, pays her

own bills, etc. Two years of therapy helped her learn how to deal with

OCD and she, fortunately, outgrew Tourette's.

There is hope. She can do it if she stays focused on what she learned

in therapy.

Best wishes for much success.

Phyllis

> Question: Does anyone have experience with their child coming off of meds

after so long, is it wishful thinking? We are all very aware that OCD is

lifelong, it waxes and wanes, but there have never been any real long term

studies with kids and prozac, besides the awful side effects. My beautiful girl

is so bright and has so much to look forward to and so much she wants to do and

accomplish in life, I sometimes worry that OCD and/or meds will hold her back.

>

May 30, 2012

My daughter decided at age 18 to go off her medication after about 8 or

9 years - meds for Tourette's Syndrome, OCD, and ADHD. She was off all

medication until about 2 years ago when she decided she needed

medication for ADHD again. She is now 26 years old.

She is a successful college senior with a two-year tuition scholarship

to a very expensive liberal arts college, lots of friends (after very

few during middle and high school), a job, a boyfriend, drives, pays her

own bills, etc. Two years of therapy helped her learn how to deal with

OCD and she, fortunately, outgrew Tourette's.

There is hope. She can do it if she stays focused on what she learned

in therapy.

Best wishes for much success.

Phyllis

> Question: Does anyone have experience with their child coming off of meds

after so long, is it wishful thinking? We are all very aware that OCD is

lifelong, it waxes and wanes, but there have never been any real long term

studies with kids and prozac, besides the awful side effects. My beautiful girl

is so bright and has so much to look forward to and so much she wants to do and

accomplish in life, I sometimes worry that OCD and/or meds will hold her back.

>

May 30, 2012

That is so encouraging! Thanks for sharing and bravo for you and your daughter!

Could you share the process your daughter used to get off the meds? My son's are

kicking in more every day & he's looking so sleepy - I would like to know how to

try cutting back.

Rhonda

Re: Coming off of Prozac after 7 yrs, great

successes fighting back OCD & a question

My daughter decided at age 18 to go off her medication after about 8 or

9 years - meds for Tourette's Syndrome, OCD, and ADHD. She was off all

medication until about 2 years ago when she decided she needed

medication for ADHD again. She is now 26 years old.

She is a successful college senior with a two-year tuition scholarship

to a very expensive liberal arts college, lots of friends (after very

few during middle and high school), a job, a boyfriend, drives, pays her

own bills, etc. Two years of therapy helped her learn how to deal with

OCD and she, fortunately, outgrew Tourette's.

There is hope. She can do it if she stays focused on what she learned

in therapy.

Best wishes for much success.

Phyllis

> Question: Does anyone have experience with their child coming off of meds

after so long, is it wishful thinking? We are all very aware that OCD is

lifelong, it waxes and wanes, but there have never been any real long term

studies with kids and prozac, besides the awful side effects. My beautiful girl

is so bright and has so much to look forward to and so much she wants to do and

accomplish in life, I sometimes worry that OCD and/or meds will hold her back.

>

May 30, 2012

That is so encouraging! Thanks for sharing and bravo for you and your daughter!

Could you share the process your daughter used to get off the meds? My son's are

kicking in more every day & he's looking so sleepy - I would like to know how to

try cutting back.

Rhonda

Re: Coming off of Prozac after 7 yrs, great

successes fighting back OCD & a question

My daughter decided at age 18 to go off her medication after about 8 or

9 years - meds for Tourette's Syndrome, OCD, and ADHD. She was off all

medication until about 2 years ago when she decided she needed

medication for ADHD again. She is now 26 years old.

She is a successful college senior with a two-year tuition scholarship

to a very expensive liberal arts college, lots of friends (after very

few during middle and high school), a job, a boyfriend, drives, pays her

own bills, etc. Two years of therapy helped her learn how to deal with

OCD and she, fortunately, outgrew Tourette's.

There is hope. She can do it if she stays focused on what she learned

in therapy.

Best wishes for much success.

Phyllis

> Question: Does anyone have experience with their child coming off of meds

after so long, is it wishful thinking? We are all very aware that OCD is

lifelong, it waxes and wanes, but there have never been any real long term

studies with kids and prozac, besides the awful side effects. My beautiful girl

is so bright and has so much to look forward to and so much she wants to do and

accomplish in life, I sometimes worry that OCD and/or meds will hold her back.

>

May 30, 2012

I wish I could give you a good weaning off method that she used, but

against

my advice, she almost quit cold turkey. She stopped within a week by

cutting

back a little every other day on each of the meds.

The best way is to follow your doctor's instructions for weaning off

medication.

What is he taking that is making him so sleepy looking? Have you

spoken to his

doctor about the affect the meds are having on him? I remember when

she was on

Depacote that she felt " stupid " - like her brain wasn't working the way

it should.

The doctor took her off that medication immediately without weaning off it.

Phyllis

> That is so encouraging! Thanks for sharing and bravo for you and your

daughter! Could you share the process your daughter used to get off the meds? My

son's are kicking in more every day & he's looking so sleepy - I would like to

know how to try cutting back.

>

> Rhonda

>

> Re: Coming off of Prozac after 7 yrs, great

successes fighting back OCD & a question

>

> My daughter decided at age 18 to go off her medication after about 8 or

> 9 years - meds for Tourette's Syndrome, OCD, and ADHD. She was off all

> medication until about 2 years ago when she decided she needed

> medication for ADHD again. She is now 26 years old.

>

> She is a successful college senior with a two-year tuition scholarship

> to a very expensive liberal arts college, lots of friends (after very

> few during middle and high school), a job, a boyfriend, drives, pays her

> own bills, etc. Two years of therapy helped her learn how to deal with

> OCD and she, fortunately, outgrew Tourette's.

>

> There is hope. She can do it if she stays focused on what she learned

> in therapy.

>

> Best wishes for much success.

>

> Phyllis

>

May 30, 2012

I wish I could give you a good weaning off method that she used, but

against

my advice, she almost quit cold turkey. She stopped within a week by

cutting

back a little every other day on each of the meds.

The best way is to follow your doctor's instructions for weaning off

medication.

What is he taking that is making him so sleepy looking? Have you

spoken to his

doctor about the affect the meds are having on him? I remember when

she was on

Depacote that she felt " stupid " - like her brain wasn't working the way

it should.

The doctor took her off that medication immediately without weaning off it.

Phyllis

> That is so encouraging! Thanks for sharing and bravo for you and your

daughter! Could you share the process your daughter used to get off the meds? My

son's are kicking in more every day & he's looking so sleepy - I would like to

know how to try cutting back.

>

> Rhonda

>

> Re: Coming off of Prozac after 7 yrs, great

successes fighting back OCD & a question

>

> My daughter decided at age 18 to go off her medication after about 8 or

> 9 years - meds for Tourette's Syndrome, OCD, and ADHD. She was off all

> medication until about 2 years ago when she decided she needed

> medication for ADHD again. She is now 26 years old.

>

> She is a successful college senior with a two-year tuition scholarship

> to a very expensive liberal arts college, lots of friends (after very

> few during middle and high school), a job, a boyfriend, drives, pays her

> own bills, etc. Two years of therapy helped her learn how to deal with

> OCD and she, fortunately, outgrew Tourette's.

>

> There is hope. She can do it if she stays focused on what she learned

> in therapy.

>

> Best wishes for much success.

>

> Phyllis

>

May 31, 2012

Son is taking 40 mg Prozac, along with .25 Risperdahl in morning and .5 in

evening. I'm going to start shaving off some of the Risperdahl in the evening.

We have switched from hospital doc to outpatient intensive doc and we are now

looking for psych to supplement weekly therapist, so he hasn't even had a

regular doc following the meds. Therapist said they recommend staying on meds at

least for a year! Kind of scary since he's never been on anything previous to 6

weeks ago. What dosage was your daughter on -- maybe too low to get headaches,

etc?

Re: Coming off of Prozac after 7 yrs, great

successes fighting back OCD & a question

>

> My daughter decided at age 18 to go off her medication after about 8 or

> 9 years - meds for Tourette's Syndrome, OCD, and ADHD. She was off all

> medication until about 2 years ago when she decided she needed

> medication for ADHD again. She is now 26 years old.

>

> She is a successful college senior with a two-year tuition scholarship

> to a very expensive liberal arts college, lots of friends (after very

> few during middle and high school), a job, a boyfriend, drives, pays her

> own bills, etc. Two years of therapy helped her learn how to deal with

> OCD and she, fortunately, outgrew Tourette's.

>

> There is hope. She can do it if she stays focused on what she learned

> in therapy.

>

> Best wishes for much success.

>

> Phyllis

>

May 31, 2012

Rhonda, why is he on the Risperdahl? It sounds like the Ris. is knocking him

out. My BP son was on that and he couldn't focus and zoned him out. They always

say don't touch the med. til stable for one year, but that means he is at a

functional level. If he is all tired and not where he wants to be, prob. not the

right med. combo. The only thing that worked for that son was Lithium. My OCD

son takes Prozac 50 mg., Buspar, and Adderall XR. I don't really like that they

have to be on meds. but the alternative is worse, at least for now. Actually, my

whole family is on some type of med. I have tried to go without but I always

crash, so I just keep it at a low tolerable dose. Seems to work Ok without too

many side effects.

> > That is so encouraging! Thanks for sharing and bravo for you and your

daughter! Could you share the process your daughter used to get off the meds? My

son's are kicking in more every day & he's looking so sleepy - I would like to

know how to try cutting back.

> >

> > Rhonda

> >

> > Re: Coming off of Prozac after 7 yrs, great

successes fighting back OCD & a question

> >

> > My daughter decided at age 18 to go off her medication after about 8 or

> > 9 years - meds for Tourette's Syndrome, OCD, and ADHD. She was off all

> > medication until about 2 years ago when she decided she needed

> > medication for ADHD again. She is now 26 years old.

> >

> > She is a successful college senior with a two-year tuition scholarship

> > to a very expensive liberal arts college, lots of friends (after very

> > few during middle and high school), a job, a boyfriend, drives, pays her

> > own bills, etc. Two years of therapy helped her learn how to deal with

> > OCD and she, fortunately, outgrew Tourette's.

> >

> > There is hope. She can do it if she stays focused on what she learned

> > in therapy.

> >

> > Best wishes for much success.

> >

> > Phyllis

> >

>

May 31, 2012

She was on 60 mg of Prozac for OCD; didn't take Risperdal.

She took three 1 mg Tenex (blood pressure med) for Tourettes in AM.

Took two 10 mg Dexedrine Time Release Spansules per day -

one in early am and a 2nd at about 2 PM. Their effectiveness

only lasted about 8 hours for her rather than the 12 that is

usually expected.

She was unable to take the generic for Prozac or Dexedrine -

they affected her worse than if she took nothing.

Phyllis

> Son is taking 40 mg Prozac, along with .25 Risperdahl in morning and .5 in

evening. I'm going to start shaving off some of the Risperdahl in the evening.

We have switched from hospital doc to outpatient intensive doc and we are now

looking for psych to supplement weekly therapist, so he hasn't even had a

regular doc following the meds. Therapist said they recommend staying on meds at

least for a year! Kind of scary since he's never been on anything previous to 6

weeks ago. What dosage was your daughter on -- maybe too low to get headaches,

etc?

>

> -

May 31, 2012

Hi Rhonda

We are coming off meds under our psych nurse's supervision. She is going from

20mg prozac (fluoxetine) to 10 for 1 week, then back to the nurse, so we'll see.

> > Question: Does anyone have experience with their child coming off of meds

after so long, is it wishful thinking? We are all very aware that OCD is

lifelong, it waxes and wanes, but there have never been any real long term

studies with kids and prozac, besides the awful side effects. My beautiful girl

is so bright and has so much to look forward to and so much she wants to do and

accomplish in life, I sometimes worry that OCD and/or meds will hold her back.

> >

>

May 31, 2012

Thanks Phyllis

I will tell her what you said.

> > Question: Does anyone have experience with their child coming off of meds

after so long, is it wishful thinking? We are all very aware that OCD is

lifelong, it waxes and wanes, but there have never been any real long term

studies with kids and prozac, besides the awful side effects. My beautiful girl

is so bright and has so much to look forward to and so much she wants to do and

accomplish in life, I sometimes worry that OCD and/or meds will hold her back.

> >

>

May 31, 2012

Yes, would love to hear how it goes.

Rhonda

Re: Coming off of Prozac after 7 yrs, great

successes fighting back OCD & a question

Hi Rhonda

We are coming off meds under our psych nurse's supervision. She is going from

20mg prozac (fluoxetine) to 10 for 1 week, then back to the nurse, so we'll see.

>

> That is so encouraging! Thanks for sharing and bravo for you and your

daughter! Could you share the process your daughter used to get off the meds? My

son's are kicking in more every day & he's looking so sleepy - I would like to

know how to try cutting back.

>

> Rhonda

>

> ----- Original Message -----

>

May 31, 2012

Yes, would love to hear how it goes.

Rhonda

Re: Coming off of Prozac after 7 yrs, great

successes fighting back OCD & a question

Hi Rhonda

We are coming off meds under our psych nurse's supervision. She is going from

20mg prozac (fluoxetine) to 10 for 1 week, then back to the nurse, so we'll see.

>

> That is so encouraging! Thanks for sharing and bravo for you and your

daughter! Could you share the process your daughter used to get off the meds? My

son's are kicking in more every day & he's looking so sleepy - I would like to

know how to try cutting back.

>

> Rhonda

>

> ----- Original Message -----

>

June 2, 2012

Hi there,

Our son did not go off medication completely, but reduced by half what he was

taking. We started with the intent to taper off, to see if he could get off

medication, but stopped at the point where he got less side effects with enough

benefit. He was doing ERP himself, but we had no doctors for support with ERP

or medication(limited expertise with OCD).

When we decided to do this I emailed the two top docs for OCD that I had emails

for. Thought you might like to read their recommendations to us, so have quoted

below. These are both very dedicated docs who have treated thousands of people

with OCD, so I respect what they have to say.

Going as slowly as you can is probably the best advice, reduce as minimally as

you can and wait a month, if not more, to see effect. Since it takes three

months to see optimal effect when starting a med, it might be a good principle

to follow with reducing. We clearly saw when it shifted, and reduced by 5mg at

a time. Might have to ask for lower dose pills to cut up easier.

Barb

Here are the quotes -

Dr. Jenike -

" As for tapering, it is best to go slowly, over months, I think. This has not

been carefully studied, but it is my observation over decades that slow taper is

more likely to prevent relapse. It is also crucial to do serious CBT while

tapering and get on top of any OCD symptoms that return.

Maybe 1/3 to 1/2 of OCD patients are able to manage with CBT alone; others

require some medication. "

Dr. Penzell-

" It is important to understand that OCD has both behavioral and biological

components, and that both need to be addressed if one is to recover

successfully. I wouldn't jump to conclusions about meds. Most sufferers,

except for those with very mild OCD, do need an assist from meds, and because

OCD is chronic, they need to stay on those meds. Discontinuation studies show

very high rates of relapse when meds are withdrawn. This is not to say that

this would be true of everyone, but is true for the majority. I have seen many

relapses among otherwise recovered people who felt they were in a good place

with their symptoms and who then stopped taking their meds. "

>

> My dd (16yo) is going to start weaning off of Prozac, after almost 7 years!

>

> We tried once a long time ago but after just a few days on 10mg from 20mg the

bad thoughts went crazy so we went back to 20mg.

>

> Now after years of great ERP therapy with a wonderful therapist and an entire

awesome year of high school, 4.0 gpa,(her very first year in public school, we

homeschooled),where she endured and was helped immensely by the ultimate in

Exposure every single day, typical highschoolers, she wants to try and get off

the meds.

>

> She has no idea how it feels to not be on meds, she is tired of being

unmotivated and tired - side effects of Prozac.

>

> We are nervous and excited, she has some idea what to expect or what may

happen but we feel like if she can get past the initial differences she will do

well, she also knows we are ready to be patient and understanding as she goes

through this.

>

> I have read that people who have the greatest success in coming off of

medication are in therapy during the transition, she is not and has not been in

therapy for about 6 months and does not plan to see her therapist at this time,

we do have her Psych Nurse checking things with her weekly at least for a few

weeks.

>

> Question: Does anyone have experience with their child coming off of meds

after so long, is it wishful thinking? We are all very aware that OCD is

lifelong, it waxes and wanes, but there have never been any real long term

studies with kids and prozac, besides the awful side effects. My beautiful girl

is so bright and has so much to look forward to and so much she wants to do and

accomplish in life, I sometimes worry that OCD and/or meds will hold her back.

>

June 3, 2012

From my own personal experience with severe OCD, when I have been off medication

for up to about 4 months, my symptoms return and so does depression. I have

been able to wean down to a very, very small dose to maintain a relatively

decent lifestyle, but when off medication, I wind up getting too overwhelmed

with OCD and then depression.

Re: Coming off of Prozac after 7 yrs, great successes

fighting back OCD & a question