Update - I've been MIA for a while...

[Guest guest]

Hello everyone,

I'm Barb, one of the co-moderators. I've been MIA for quite a while, just

dealing with life challenges, as well as our OCD kid. So, I will give a bit of

background and an update....

Our son is now 20 and doing ok, I wouldn't say great, but he's ok. He is pretty

much housebound and in avoidance mode right now, but content with this. He does

continue to work the ERP, but since he avoids being around people he has much

less to deal with. We know he is able though. He is on a low dose of celexa,

10mg, cut back from 20mg. We learned the hard way, low dose is best for our

son, he is a slow metabolizer, I believe is the term.

For my part I have reached a level of acceptance, and learned that with our kid

it's mostly a matter of waiting him out, he gets moving when he's good and

ready, and when he has a reason to. Right now he has no particular incentive,

but he has been more " mobile " , so we know he can be, and expect he will be, but

accept whatever comes - it makes for a much more peaceful existence

I DO periodically prod him to get out and moving, and am not above shaming him

into it (he is stable and able, so I am not asking him to do anything he is not

capable of - not suggesting this as a tactic to anyone, just know my own kid and

what works).

So...where we've come from.... Our son had severe, seemingly overnight onset of

OCD at age 15, and it continued around the clock, literally, he said it was even

in his dreams, when he could sleep. We tried ERP right away and he understood

what to do and did some, but it continued to snowball and just was not possible.

After three months we added medication. He got some relief right away, and was

finally able to sleep and the intensity and quantity of the obsessive thoughts

was reduced.

Unfortunately we got into issues when medication was increased and spent some

time resolving this. We dealt with anger and behavior issues, much of it due to

medication being at too high a dose, in addition to a kid without the ability to

cope and without adequate support to do so, added to challenge of being a teen.

Much the same as many, we lacked the support and expertise we needed to navigate

the great challenges that can come with OCD.

Our son was hospitalized for a period of time, and then attended a day program

at a psychiatric hospital. Mostly they were ruling out any other psychiatric

diagnosis, there was never any help with the OCD, beyond medication. I pushed

for ERP therapy, and it was tried with a young intern who basically opened a

book and tried things, which did not go anywhere.

Ultimately we pulled our son out of this program early, and were ready to try a

session of intensive ERP therapy with a private psychologist. By this time 2

years had gone by and our son was very resistant to seeing any more doctors.

The private psychologist told us there was not point in going forward with this

therapy until our son was truly on board. So...we sat in a holding mode for

some time.

Our son did eventually " rally " (after us just leaving him alone and waiting him

out and after not attending school for 2 years, he attended an alternative

school in our public system. At this point he is working at home on courses and

he is now 2 credits away from completing his high school diploma. Then what, we

don't know...

I truly don't know if he will be able to manage full time school of any kind,

and his learning issues go beyond the OCD - he is diagnosed PDD-NOS (pervasive

developmental delays, not otherwise specified). Mostly he just needs more time

to process and to learn. We will probably try some online college courses to

see how that goes. He is motivated to " succeed " , so that is something, just

limited in his ability to be around people, and LD challenges.

I could go on and on....but feel that I have done so already, so will stop now.

This group was a lifeline for me, seeing me through many a dark time, when I

truly felt at a loss what to do, and despaired whether it would ever get better.

Even when there were no answers, knowing I was not alone, that others understood

and shared similar challenges, many days was all I had to hold on to.

I feel committed to helping anyone I can, knowing the challenges this road can

bring. I facilitate a support group locally, and field inquiries from a website

I started up with another local person, so my time is somewhat taken up.

However, I will log on as often as I can and offer what support I can.

Warmly,

Barb

Co-Moderator

Ottawa OCD Parent/Family Support Group

www.ocdottawa.com

[Guest guest]

Hi Barb,

I'm so sorry your son is still having a difficult time. I'm just wondering

given the sudden onset of your son's symptoms at age 15, did you ever look into

PANDAS or PANS? Often ERP and/or OCD meds do not work for these kids. ERP only

helped our son after we were able to calm his PANDAS symtpoms with antibiotics

(and now homeopathy).

Best wishes,

Vicky

>

> Hello everyone,

>

> I'm Barb, one of the co-moderators. I've been MIA for quite a while, just

dealing with life challenges, as well as our OCD kid. So, I will give a bit of

background and an update....

>

> Our son is now 20 and doing ok, I wouldn't say great, but he's ok. He is

pretty much housebound and in avoidance mode right now, but content with this.

He does continue to work the ERP, but since he avoids being around people he has

much less to deal with. We know he is able though. He is on a low dose of

celexa, 10mg, cut back from 20mg. We learned the hard way, low dose is best for

our son, he is a slow metabolizer, I believe is the term.

>

> For my part I have reached a level of acceptance, and learned that with our

kid it's mostly a matter of waiting him out, he gets moving when he's good and

ready, and when he has a reason to. Right now he has no particular incentive,

but he has been more " mobile " , so we know he can be, and expect he will be, but

accept whatever comes - it makes for a much more peaceful existence

>

> I DO periodically prod him to get out and moving, and am not above shaming him

into it (he is stable and able, so I am not asking him to do anything he is not

capable of - not suggesting this as a tactic to anyone, just know my own kid and

what works).

>

> So...where we've come from.... Our son had severe, seemingly overnight onset

of OCD at age 15, and it continued around the clock, literally, he said it was

even in his dreams, when he could sleep. We tried ERP right away and he

understood what to do and did some, but it continued to snowball and just was

not possible. After three months we added medication. He got some relief right

away, and was finally able to sleep and the intensity and quantity of the

obsessive thoughts was reduced.

>

> Unfortunately we got into issues when medication was increased and spent some

time resolving this. We dealt with anger and behavior issues, much of it due to

medication being at too high a dose, in addition to a kid without the ability to

cope and without adequate support to do so, added to challenge of being a teen.

>

> Much the same as many, we lacked the support and expertise we needed to

navigate the great challenges that can come with OCD.

>

> Our son was hospitalized for a period of time, and then attended a day program

at a psychiatric hospital. Mostly they were ruling out any other psychiatric

diagnosis, there was never any help with the OCD, beyond medication. I pushed

for ERP therapy, and it was tried with a young intern who basically opened a

book and tried things, which did not go anywhere.

>

> Ultimately we pulled our son out of this program early, and were ready to try

a session of intensive ERP therapy with a private psychologist. By this time 2

years had gone by and our son was very resistant to seeing any more doctors.

The private psychologist told us there was not point in going forward with this

therapy until our son was truly on board. So...we sat in a holding mode for

some time.

>

> Our son did eventually " rally " (after us just leaving him alone and waiting

him out and after not attending school for 2 years, he attended an

alternative school in our public system. At this point he is working at home on

courses and he is now 2 credits away from completing his high school diploma.

Then what, we don't know...

>

> I truly don't know if he will be able to manage full time school of any kind,

and his learning issues go beyond the OCD - he is diagnosed PDD-NOS (pervasive

developmental delays, not otherwise specified). Mostly he just needs more time

to process and to learn. We will probably try some online college courses to

see how that goes. He is motivated to " succeed " , so that is something, just

limited in his ability to be around people, and LD challenges.

>

> I could go on and on....but feel that I have done so already, so will stop

now. This group was a lifeline for me, seeing me through many a dark time, when

I truly felt at a loss what to do, and despaired whether it would ever get

better. Even when there were no answers, knowing I was not alone, that others

understood and shared similar challenges, many days was all I had to hold on to.

>

> I feel committed to helping anyone I can, knowing the challenges this road can

bring. I facilitate a support group locally, and field inquiries from a website

I started up with another local person, so my time is somewhat taken up.

However, I will log on as often as I can and offer what support I can.

>

> Warmly,

> Barb

> Co-Moderator

>

> Ottawa OCD Parent/Family Support Group

> www.ocdottawa.com

>

[Guest guest]

Hi Barb,

I'm so sorry your son is still having a difficult time. I'm just wondering

given the sudden onset of your son's symptoms at age 15, did you ever look into

PANDAS or PANS? Often ERP and/or OCD meds do not work for these kids. ERP only

helped our son after we were able to calm his PANDAS symtpoms with antibiotics

(and now homeopathy).

Best wishes,

Vicky

>

> Hello everyone,

>

> I'm Barb, one of the co-moderators. I've been MIA for quite a while, just

dealing with life challenges, as well as our OCD kid. So, I will give a bit of

background and an update....

>

> Our son is now 20 and doing ok, I wouldn't say great, but he's ok. He is

pretty much housebound and in avoidance mode right now, but content with this.

He does continue to work the ERP, but since he avoids being around people he has

much less to deal with. We know he is able though. He is on a low dose of

celexa, 10mg, cut back from 20mg. We learned the hard way, low dose is best for

our son, he is a slow metabolizer, I believe is the term.

>

> For my part I have reached a level of acceptance, and learned that with our

kid it's mostly a matter of waiting him out, he gets moving when he's good and

ready, and when he has a reason to. Right now he has no particular incentive,

but he has been more " mobile " , so we know he can be, and expect he will be, but

accept whatever comes - it makes for a much more peaceful existence

>

> I DO periodically prod him to get out and moving, and am not above shaming him

into it (he is stable and able, so I am not asking him to do anything he is not

capable of - not suggesting this as a tactic to anyone, just know my own kid and

what works).

>

> So...where we've come from.... Our son had severe, seemingly overnight onset

of OCD at age 15, and it continued around the clock, literally, he said it was

even in his dreams, when he could sleep. We tried ERP right away and he

understood what to do and did some, but it continued to snowball and just was

not possible. After three months we added medication. He got some relief right

away, and was finally able to sleep and the intensity and quantity of the

obsessive thoughts was reduced.

>

> Unfortunately we got into issues when medication was increased and spent some

time resolving this. We dealt with anger and behavior issues, much of it due to

medication being at too high a dose, in addition to a kid without the ability to

cope and without adequate support to do so, added to challenge of being a teen.

>

> Much the same as many, we lacked the support and expertise we needed to

navigate the great challenges that can come with OCD.

>

> Our son was hospitalized for a period of time, and then attended a day program

at a psychiatric hospital. Mostly they were ruling out any other psychiatric

diagnosis, there was never any help with the OCD, beyond medication. I pushed

for ERP therapy, and it was tried with a young intern who basically opened a

book and tried things, which did not go anywhere.

>

> Ultimately we pulled our son out of this program early, and were ready to try

a session of intensive ERP therapy with a private psychologist. By this time 2

years had gone by and our son was very resistant to seeing any more doctors.

The private psychologist told us there was not point in going forward with this

therapy until our son was truly on board. So...we sat in a holding mode for

some time.

>

> Our son did eventually " rally " (after us just leaving him alone and waiting

him out and after not attending school for 2 years, he attended an

alternative school in our public system. At this point he is working at home on

courses and he is now 2 credits away from completing his high school diploma.

Then what, we don't know...

>

> I truly don't know if he will be able to manage full time school of any kind,

and his learning issues go beyond the OCD - he is diagnosed PDD-NOS (pervasive

developmental delays, not otherwise specified). Mostly he just needs more time

to process and to learn. We will probably try some online college courses to

see how that goes. He is motivated to " succeed " , so that is something, just

limited in his ability to be around people, and LD challenges.

>

> I could go on and on....but feel that I have done so already, so will stop

now. This group was a lifeline for me, seeing me through many a dark time, when

I truly felt at a loss what to do, and despaired whether it would ever get

better. Even when there were no answers, knowing I was not alone, that others

understood and shared similar challenges, many days was all I had to hold on to.

>

> I feel committed to helping anyone I can, knowing the challenges this road can

bring. I facilitate a support group locally, and field inquiries from a website

I started up with another local person, so my time is somewhat taken up.

However, I will log on as often as I can and offer what support I can.

>

> Warmly,

> Barb

> Co-Moderator

>

> Ottawa OCD Parent/Family Support Group

> www.ocdottawa.com

>

[Guest guest]

Hi Barb,

I'm so sorry your son is still having a difficult time. I'm just wondering

given the sudden onset of your son's symptoms at age 15, did you ever look into

PANDAS or PANS? Often ERP and/or OCD meds do not work for these kids. ERP only

helped our son after we were able to calm his PANDAS symtpoms with antibiotics

(and now homeopathy).

Best wishes,

Vicky

>

> Hello everyone,

>

> I'm Barb, one of the co-moderators. I've been MIA for quite a while, just

dealing with life challenges, as well as our OCD kid. So, I will give a bit of

background and an update....

>

> Our son is now 20 and doing ok, I wouldn't say great, but he's ok. He is

pretty much housebound and in avoidance mode right now, but content with this.

He does continue to work the ERP, but since he avoids being around people he has

much less to deal with. We know he is able though. He is on a low dose of

celexa, 10mg, cut back from 20mg. We learned the hard way, low dose is best for

our son, he is a slow metabolizer, I believe is the term.

>

> For my part I have reached a level of acceptance, and learned that with our

kid it's mostly a matter of waiting him out, he gets moving when he's good and

ready, and when he has a reason to. Right now he has no particular incentive,

but he has been more " mobile " , so we know he can be, and expect he will be, but

accept whatever comes - it makes for a much more peaceful existence

>

> I DO periodically prod him to get out and moving, and am not above shaming him

into it (he is stable and able, so I am not asking him to do anything he is not

capable of - not suggesting this as a tactic to anyone, just know my own kid and

what works).

>

> So...where we've come from.... Our son had severe, seemingly overnight onset

of OCD at age 15, and it continued around the clock, literally, he said it was

even in his dreams, when he could sleep. We tried ERP right away and he

understood what to do and did some, but it continued to snowball and just was

not possible. After three months we added medication. He got some relief right

away, and was finally able to sleep and the intensity and quantity of the

obsessive thoughts was reduced.

>

> Unfortunately we got into issues when medication was increased and spent some

time resolving this. We dealt with anger and behavior issues, much of it due to

medication being at too high a dose, in addition to a kid without the ability to

cope and without adequate support to do so, added to challenge of being a teen.

>

> Much the same as many, we lacked the support and expertise we needed to

navigate the great challenges that can come with OCD.

>

> Our son was hospitalized for a period of time, and then attended a day program

at a psychiatric hospital. Mostly they were ruling out any other psychiatric

diagnosis, there was never any help with the OCD, beyond medication. I pushed

for ERP therapy, and it was tried with a young intern who basically opened a

book and tried things, which did not go anywhere.

>

> Ultimately we pulled our son out of this program early, and were ready to try

a session of intensive ERP therapy with a private psychologist. By this time 2

years had gone by and our son was very resistant to seeing any more doctors.

The private psychologist told us there was not point in going forward with this

therapy until our son was truly on board. So...we sat in a holding mode for

some time.

>

> Our son did eventually " rally " (after us just leaving him alone and waiting

him out and after not attending school for 2 years, he attended an

alternative school in our public system. At this point he is working at home on

courses and he is now 2 credits away from completing his high school diploma.

Then what, we don't know...

>

> I truly don't know if he will be able to manage full time school of any kind,

and his learning issues go beyond the OCD - he is diagnosed PDD-NOS (pervasive

developmental delays, not otherwise specified). Mostly he just needs more time

to process and to learn. We will probably try some online college courses to

see how that goes. He is motivated to " succeed " , so that is something, just

limited in his ability to be around people, and LD challenges.

>

> I could go on and on....but feel that I have done so already, so will stop

now. This group was a lifeline for me, seeing me through many a dark time, when

I truly felt at a loss what to do, and despaired whether it would ever get

better. Even when there were no answers, knowing I was not alone, that others

understood and shared similar challenges, many days was all I had to hold on to.

>

> I feel committed to helping anyone I can, knowing the challenges this road can

bring. I facilitate a support group locally, and field inquiries from a website

I started up with another local person, so my time is somewhat taken up.

However, I will log on as often as I can and offer what support I can.

>

> Warmly,

> Barb

> Co-Moderator

>

> Ottawa OCD Parent/Family Support Group

> www.ocdottawa.com

>

[Guest guest]

Hi Vicky,

Yes, I did wonder about PANDAS, given the overnight change. However, we learned

that the OCD was in fact there since he was young, just not in a severe form, or

in an obvious form to see it. Anxiety was always present and major tantrums and

meltdowns, which I now know were about " just right " OCD, plus other stuff.

So, while I suspect there may well have been a PANDAS aspect, or something

immune based, medication and ERP have been effective for his. At this point it

is more about his choices and using avoidance to cope. Plus it is more than

just the OCD that factors into things. At 20 we are leaving it up to him to find

his way, with our support, but not pushing.

Thanks for your interest Vicky.

Barb

>

> Hi Barb,

>

> I'm so sorry your son is still having a difficult time. I'm just wondering

given the sudden onset of your son's symptoms at age 15, did you ever look into

PANDAS or PANS? Often ERP and/or OCD meds do not work for these kids. ERP only

helped our son after we were able to calm his PANDAS symtpoms with antibiotics

(and now homeopathy).

>

> Best wishes,

> Vicky

>

>