new and desperate

May 5, 2006

Hi Tebby, welcome! Well, I hope after getting a *feel* for the

group you realize you are definitely NOT alone!

I joined this group several years ago when my son *got* OCD at the

start of 6th grade. He's now in 11th grade. This was my first

online group too! It was/is my GREATEST support and kept me sane

(or nearly!). Even at the worst of times when your child is having

behaviors no other you read about is, well, it's still nice to get

some thoughts, empathy and ((hugs)) from here. We know how

illogical/weird OCD can be too, along with more common, better known

behaviors. And, yes, as you said we have had our ups and downs, and

my son's OCD just recent *waxed* back up or made a reappearance with

totally different problems than our first go-round back in 6th

grade. Right now it is scrupulosity/religion and bad thoughts.

Sounds like I wouldn't like the current psychiatrist you're dealing

with! I would have resented his remark!! What medication is your

son on, the dosage? Been on it a while?

We only tried Celexa. My son was on it for 9th and 10th grades.

Did fine. Then weaned off it last May. He felt fine, wanted to try

no meds. And, as I read can happen, OCD popped back up recently

with the stuff I mentioned above. The other we have used is

inositol powder (B vitamin family). We used that all through middle

school. His OCD then was more *physical*, a lot of touching,

compulsions, rituals mostly. Inositol powder helped him (has helped

some people, no effect on others). So we are trying the inositol

powder again, waiting to see if any relief from it this time.

Though I wonder if it makes a difference that this time it's

more " thoughts " than " physical " OCD.

Why did your insurance quit paying, has he maxed out the number of

visits?? Sometimes a call (or 2 or 3) to the insurance company can

get more visits approved when they are really needed.

Gotta go!

single mom, 3 sons

, 17, with OCD, dysgraphia and Aspergers/autism

>

> Hi,

>

> I just joined this list a few days ago and thought I would wait to

> get the feel of things before I made my first post. (I've never

> been part of any on-line group before.) But I'm feeling so

> discouraged, desperate and alone, that I really need to vent.

>

> My son is eleven. He was diagnosed with OCD four years ago.

We've

> had several ups and downs, as I'm sure many of you have. There

have

May 5, 2006

Hi and welcome,

My heart goes out to you. If I couldn't hug and kiss my 10 year old son,

I'd quickly go mad. He is my antidote to my 13 year old daughter who has OCD and

is a very touchy teenager these days!

It sounds as if you are doing all the right things and still not getting

anywhere. If I were in your shoes, I'd be pushing hard for a medication change.

If your doctor isn't agreeable, is there any chance of getting a different

doctor? I know that exposure and response prevention therapy is the gold

standard for treating OCD, but medication has a place and when your son is

suffering as much as he is, I can't think of any good reason not to try another

medication. Our psychiatrist would never keep my daughter on a medication which

clearly wasn't helping - what would be the point? And the doctor's sarcasm would

also cause me to try to replace him if I could (I realize that is often nearly

impossible, depending on where you live).

It can take several tries to find a medication which works for your

child, and occasionally the perfect combo may stop working after a while and you

have to start all over again. But almost all children can be helped

significantly by some medication (or a combination of meds) and it can reduce

your child's anxiety to the point of being able to do the therapy. My daughter

was non-functional before she was first put on Paxil many years ago. It changed

her life. It probably saved her life, actually, since she would have stopped

eating completely if we hadn't medicated her. She has been on a few different

medications and has always had to have a small dose of an antipsychotic

(Risperdal first, and now Abilify) added to an SSRI (like Paxil) to get relief.

She still has some symptoms from time to time, but in general, her OCD has been

largely invisible for years now.

Hang in there, and write often. Just having someone (even in cyberspace)

to talk with is a huge relief when you are fighting this monster of an illness.

I hope you find some solution for your son soon. Don't be afraid to challenge

the doctor if necessary - remember that you have the right to question his

decisions and make him justify his decisions if you don't agree with him. It can

be hard to stand up to someone like a doctor, but keep in mind that he works for

you and you are paying him. Just having that in the back of your mind may give

you the strength you need to do what you need to for your son.

Best wishes,

in NV

May 5, 2006

> . She has been on a few different medications and has always had to

> have a small dose of an antipsychotic (Risperdal first, and now

> Abilify) added to an SSRI (like Paxil) to get relief. She still has

> some symptoms from time to time, but in general, her OCD has been

> largely invisible for years now.

>

Hi --Can I ask why you added the mood stabilizer? Mikayla is

currently going from 30 to 40 mgs. of Prozac. We have been at 35 mgs.

for a week now. Since she's been on the Prozac, besides the OCD relief

she is also very irritable. So much more so the past few days so I find

it hard to believe it's not the med change. Does the abilify help with

irritability? We have a pdoc appt. on Monday. Mikayla told me today

that she just feels really angry inside all of the time. She HATES it

when anyone interrupts her, short tempered with her 3 brothers, etc.

Today she was stomping around saying that she's quitting piano and all 4

of her dance classes. Edgy, edgy! She's turning 11 on Tuesday--please

don't tell me it's preteen because then there's no medicating her--ha!

Dina

May 5, 2006

Dear Tebby,

Yes, discouraged, desperate, and alone is very familiar to me. My son was afraid

for me to touch or kiss him. I made a point of touching him as much as possible

and kissing him more than usual and sitting very close to him. He did get over

it within about 2 weeks or so but I do remember feeling terribly helpless about

the whole situation. I just made up my mind that I was not going to accept it. I

told him that I would help him fight the OCD and that OCD did not have any

control of me.

(in FL)

>

> From: " tebbykitten1967 " <rexstephanie@...>

> Date: 2006/05/05 Fri PM 12:49:49 EDT

>

> Subject: New and desperate

>

> Hi,

>

> I just joined this list a few days ago and thought I would wait to

> get the feel of things before I made my first post. (I've never

> been part of any on-line group before.) But I'm feeling so

> discouraged, desperate and alone, that I really need to vent.

>

> My son is eleven. He was diagnosed with OCD four years ago. We've

> had several ups and downs, as I'm sure many of you have. There have

> been months where the OCD is managed and he does well. There have

> also been months where the OCD is completely out of control. We are

> in one of those times now, and have been since August of 05 - nine

> long months.

>

> My son sees both a psychologist for CBT and a psychiatrist for

> meds. But currenctly nothing seems to be working. His problem

> right now is contamination. (In the past we've experienced

> counting, checking, scrupulosity, you name it - he's had it.)

> EVERYTHING in the world is contaminated - his clothes, his sheets,

> the floor, the counters, tables and desks. The door knobs and

> kitchen cupboards. But people are also contaminated. If I tough

> him, he has to " check " my fingernails. And I'm NEVER allowed to

> kiss him.

>

> He used to use his hand sanitizer constantly. But now he has

> substituted licking. (I know, it's so gross and so embarrassing for

> him.) He licks his fingers and touches whatever it is that he

> perceives as contaminated. So in the morning while getting dressed,

> he licks his fingers and touches the shirt, licks his fingers and

> touches the pants, he repeats this for his feet, the socks, the

> floor, the bathroom counter, the light switch, the closet door, the

> toothbrush...you get the idea. And then in the mudroom it's the

> shoes, the backpack, the rug, the sweatshirt...and on and on. It's

> all I can do not to scream, " Stop licking! "

>

> We've continued to try the CBT, using every gimmick the psychologist

> and I can think of, but my son just cries, " I can't do it. The OCD

> is too strong. I'm a failure and it's hopeless. " My heart is

> breaking and no one understands. Everyone tries, but they have no

> idea what it is like to see my son trapped in his own mind.

>

> To top it all off, I just got off the phone with the psychiatrist to

> ask about changing meds. He noticed my son hasn't had a therapy

> session since the beginning of April. He sarcastically asked, " Has

> your son been fired from therapy? " I tried to explain that the

> doctor canceled our last appointment because she was out of the

> office and then her next opening wasn't for weeks. I didn't even

> dare mention that our insurance has stopped paying and we can barely

> afford the $150.00 an hour. How on earth was his sarcasm supposed

> to help my child? Does he not think I am doing everything I can for

> my son? He refuses to consider a med change until the middle of

> summer, saying " This is a therapy issue anyway. "

>

> So my son is locked in a downward spiral and I can do nothing to

> help. I just needed to tell someone who would understand. And I

> need to know how other mothers handle not being able to snuggle and

> kiss their child.

>

> Tebby

>

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May 5, 2006