Severe OCD

October 8, 2004

I don't know where to start, I'm so upset. Our son (15) was dx with OCD in Jan.

and ever since then, we've been trying to find the right combo of meds and

therapy, without much success. We finally sought out one of the finest OCD

specialists in the state and in between hurricanes (we live in Indian River

County, the strike zone for the last two) have been traveling 2 hours each way

for intensive therapy (ERP and CBT). This has resulted in a little progress,

although it has been not running according to the 6 day/week schedule because of

the interruptions. However, apparently, the psychologist feels that our son is

very seriously OCD (he labled it severe and " life derailing " ) and would like us

to search out more intense therapy through programs such as the OCD Institute in

Boston or Menninger in Houston. He's not washing his hands of the whole thing

but just thought he would benefit greatly from one of these programs.

Now that we have this news, I'm contemplating what to do, along with my husband.

Out health insurance does not cover mental disorders so we would have to take

out a loan to pay for this and we have a family business that we would not be

able to leave to attend any of these programs on an ongoing basis with our son.

I guess my question is, does anyone have experience with these long-term

treatment (in-house) programs? If so, was it worth it? Also, has anyone had a

severely disabled child with OCD and, if so, what did you do? Thanks for any

responses.

October 9, 2004

Hi,

Sorry things are so rough for your family right now!!

When , now 15, was at his worst (11.5 & 12 yrs old), which is

when OCD just " hit " , I really thought he would have to be

hospitalized. Boy, I feel for all of you who actually have to go

thru with it, as my heart just wrenched at that thought at the time,

my son being in distress, away from me, at some place not home, etc.

Fortunately, we managed to get through it without hospitalization.

But he was 24/7 OCDing and some of the OCD stuff was just so weird,

not the typical things you read about in OCD books. Some behaviors

changed, stayed, came back, new ones popped up.... He would like to

touch me. To myself, I called me his " touchstone, " whatever that

word really means, I don't know. But it was like if he could touch

me (reach out touch my arm or whatever), he would get through some

OCD episode faster. Well, I pretty much hated OCD at that time, and

got so I could not stand for him to touch me, like I dreaded the

touch. I was just tired of being touched I guess, though it wasn't

like he was constantly touching. But I would sometimes say " leave me

out of it! " referring to his OCD. Now, saying THIS to my most

huggable, lovable child, like I was pushing him away (well, guess I

was!), it didn't make ME feel that great either. Really, those were

such rough, long, months! BUT, things got much better over time, a

bit of waxing along the way for a month or two, but some months OCD

was so mild/absent it put the rough times in the back of my mind as

just memories, hard to believe we actually went through all that!

So take hope. Your daughter is going through h*ll right now and is

of course tired/fed up with living this way, why go on she's

thinking. But she WILL get through this, she needs to know that. It

might be that she'll need different meds to help things ease up for

her, and there's soooo may meds & combination of meds and they all

take time to try, the best dosages....SIGH! But eventually things

WILL be better and she'll be the stronger person/adult for it!

I suffered depression pretty much all my life off & on. Things

ALWAYS look better on another day, another year/age, etc., you DO get

through things and are glad to still be " here. "

Re the doctor's wanting to do the psychoneuro is that where they will

do an image and that will help see which medication(s) will help her

most?

Well, I know I rambled, but wanted you to know that things will

improve, it's just so rough while going through them!!

> I truly understand how you feel. Our daughter has been in the

hospital since April came back in June and went back in July. She has

been put on different meds and we have seen some improvement this

last month. However, she is on 150 Effexor RX and 15 mg Zyprexa. She

has gained 20 pounds in about three months before she had Risperdal

but was to sleeping for the 2mg she should have been taking and was

switched on Zyprexa.

October 9, 2004