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Dear list, first of all, thanks to everyone who was so supportive and

enthusiastic when I posted earlier about Kellen handling her tough Monday so

well. After that wonderful Monday though, the last half of this week has

been awful for her, she's experiencing much worse symptoms, a lot of new

symptoms, is consumed all day doing compulsions and is pretty much

miserable. Weirdly she's maintaining her clothing gains, in the past the

clothing problems would suddenly worsen along with the other OCD symptoms.

Do other kids experience *gradual* waxing and waning of symptoms? Kel's

worsenings have all been abrupt and overnight, similar to her initial onset.

I called her doctor Friday, last month during her appointment he encouraged

me to have her blood drawn during worsenings, maybe we'll do this. Kel will

be thrilled. :-(

It's so hard when they're doing well and suddenly they aren't, as I know you

all know. Right now I'm wondering if I'll ever get used to this. If I feel

this jerked around, how much worse it must be for the kids.

Kathy R. in Indiana, feeling very sad and sorry for herself

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Dear Kathy,

I have had the same thing happen with my son. I'm still trying to find that

middle ground where I don't get so excited about the new accomplishments or

so horribly down about the setbacks. I've found that when he does make a

major step forward, he usually retreats or has some kind of setback

afterward. It is almost like he goes too far and is on unknown turf and gets

scared. The good news is that this usually signifies that he is on a new

plateau for his comfort level. I think of it as a giant step forward with a

few small steps back but still gaining ground.

Good luck.

Noelle in NY

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Hi Kathy:

Please keep up the bragging and the celebrating when things go well. That

is the cruelty of OCD the way it waxes and wanes. It really tests our

patience and must be so frustrating for our beloved OCDers.

What I find is that Steve's OCD waxes so seldom without him taking

effective corrective action that I have become less adept at responding

appropriately to the flareups. Then I feel extra down that I know better

how to help him and shouldn't be doing things that make it worse!

It seems to me that OCD symptoms can wax for no good or noticeable reason.

You have lots to celebrate with the clothing gains sticking, just reminding

Kel of this major success will surely inspire her and encourage her with

fighting the new symptoms. When Steve has some slippage we talk about what

he can do to boss it back. If it is a bad flareup it can take a day or two

before he gets things back in check, and he is very insistent at doing his

own thing. I guess there is some advantage to teenagerhood after all. Our

usual panacea is taking Steve for a walk or a hike; this may not start out

fun but after a while he is usually doing much better.

Good luck, take care, aloha, Kathy (H)

kathyh@...

At 09:44 AM 02/26/2000 -0500, you wrote:

>From: " Kathy " <klr@...>

>

>Dear list, first of all, thanks to everyone who was so supportive and

>enthusiastic when I posted earlier about Kellen handling her tough Monday so

>well. After that wonderful Monday though, the last half of this week has

>been awful for her, she's experiencing much worse symptoms, a lot of new

>symptoms, is consumed all day doing compulsions and is pretty much

>miserable. Weirdly she's maintaining her clothing gains, in the past the

>clothing problems would suddenly worsen along with the other OCD symptoms.

>

>Do other kids experience *gradual* waxing and waning of symptoms? Kel's

>worsenings have all been abrupt and overnight, similar to her initial onset.

>I called her doctor Friday, last month during her appointment he encouraged

>me to have her blood drawn during worsenings, maybe we'll do this. Kel will

>be thrilled. :-(

>

>It's so hard when they're doing well and suddenly they aren't, as I know you

>all know. Right now I'm wondering if I'll ever get used to this. If I feel

>this jerked around, how much worse it must be for the kids.

>

>Kathy R. in Indiana, feeling very sad and sorry for herself

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Hi Kathy R.,

Oh it's a roller coaster ride, isn't it? One day you're elated about

all the stuff they can do, the next day OCD socks you right between the

eyes.

This is one of the most difficult aspects of the disorder for me. I'm

working with my therapist right now on staying more detached about

andra's waxing and waning. This is a biggie for me, as I was raised

in the overprotective style and tend toward parenting that way myself.

As you know, this too shall pass. It's just hanging in there waiting

that's the hard part. But Kel's a strong girl and she'll make it

through, with your help and support.

Take it easy on yourself and take good care of you. You are in my

thoughts,

Lesli

Kathy wrote:

>

> From: " Kathy " <klr@...>

>

> Dear list, first of all, thanks to everyone who was so supportive and

> enthusiastic when I posted earlier about Kellen handling her tough Monday so

> well. After that wonderful Monday though, the last half of this week has

> been awful for her, she's experiencing much worse symptoms, a lot of new

> symptoms, is consumed all day doing compulsions and is pretty much

> miserable. Weirdly she's maintaining her clothing gains, in the past the

> clothing problems would suddenly worsen along with the other OCD symptoms.

>

> Do other kids experience *gradual* waxing and waning of symptoms? Kel's

> worsenings have all been abrupt and overnight, similar to her initial onset.

> I called her doctor Friday, last month during her appointment he encouraged

> me to have her blood drawn during worsenings, maybe we'll do this. Kel will

> be thrilled. :-(

>

> It's so hard when they're doing well and suddenly they aren't, as I know you

> all know. Right now I'm wondering if I'll ever get used to this. If I feel

> this jerked around, how much worse it must be for the kids.

>

> Kathy R. in Indiana, feeling very sad and sorry for herself

>

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Hi Lesli, the worse-then-better nature of OCD is the hardest part of living

around the disorder for me too. And so many things about OCD are illogical,

I'm no Mr. Spock but I'm much happier when things in my life make sense

(Jim??? ;-) This is the third time in a year that Kel was suddenly much

worse and this time she thinks it's punishment for going against OCD's

rules, all the bossing back caused this. Maybe it did, I don't know. More

likely, it just happened. AAAARGH!

It's hard to stay detached when a kid is OCDing all over you! I've never

managed to actually feel detached from Kel's problems but since last winter

I've acted detached for all I'm worth. Younger OCDers at least seem to take

a lot of cues from Mom and it really is helpful to her for me to be calm and

matter-of-fact. Is a goal in your counseling that you will actually *feel*

and *be* less effected by andra's waxing OCD? How is this going?

Thanks Lesli for your support,

Kathy R. in Indiana

> From: Masoud & Lesli Molaei <desk@...>

>

> Hi Kathy R.,

>

> Oh it's a roller coaster ride, isn't it? One day you're elated about

> all the stuff they can do, the next day OCD socks you right between the

> eyes.

>

> This is one of the most difficult aspects of the disorder for me. I'm

> working with my therapist right now on staying more detached about

> andra's waxing and waning. This is a biggie for me, as I was raised

> in the overprotective style and tend toward parenting that way myself.

>

> As you know, this too shall pass. It's just hanging in there waiting

> that's the hard part. But Kel's a strong girl and she'll make it

> through, with your help and support.

>

> Take it easy on yourself and take good care of you. You are in my

> thoughts,

> Lesli

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Hi Noelle, I have noticed this dance too but usually only in hindsight. I

don't know why I have so much trouble maintaining perspective during a

sudden worsening, though I'm doing better I think with the smaller-scale

downturns.

Thanks,

Kathy R. in Indiana

> From: larkspurmr@...

>

> Dear Kathy,

> snip<

> I've found that when he does make a

> major step forward, he usually retreats or has some kind of setback

> afterward. It is almost like he goes too far and is on unknown turf and

gets

> scared. The good news is that this usually signifies that he is on a new

> plateau for his comfort level. I think of it as a giant step forward with

a

> few small steps back but still gaining ground.

> Good luck.

> Noelle in NY

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