Re: andra update

July 6, 2000

Hi all,

I have not had much to say lately, but I keep up with your posts on a

regular basis. So I've been sitting here in my computer chair

celebrating and commiserating will all of you.

Just thought I'd check in with an update on andra. We are now

heavily entrenched in the end-of-school blow out: significant worsening

of OCD symptoms and high anxiety. Our school just ended June 16, after

which we had grandparents here for a week and then rehearsals and

andra's dance recital the week after that.

So the major melt down is happening this week.

I'm so glad that many of you wrote of your own experiences with school

ending. This helped me tremendously to be prepared and not to panic

when it happened to andra. I was not, however, prepared for the OCD

to come on this strong. I've been in touch with her meds doctor and we

will start a new round of CBT soon.

andra has gained some real maturity during her first grade year and

has developed much better insight into her OCD. I feel this will help

her make significant progress with the CBT.

However, the newfound insight has spawned a new form of reassurance

seeking. She'll say, " Mom, OCD is bothering me, " and when I stopped

murmuring sympathetic phrases in reply (having noticed it was becoming a

routine) she became pretty angry! Yikes, it's always something.

andra was depressed yesterday, which is a natural reaction for her

after her anxiety has been high for a period of time. Today was better,

however, and she went to play at a friend's house, which helped

considerably. (Some friends are high on her hierarchy as OCD triggers,

others are not.)

I do want to brag a bit before I close, and let you know that andra

not only danced beautifully in her recital, but also survived three

costume changes plus hours of sticky hair and makeup! We were

tremendously proud of her for not letting OCD deter her from this goal.

Thanks for listening and thanks to all for writing. I learn so much

from you.

Take care,

Lesli (S.F. Bay)

July 7, 2000

Hi there, Lesli (S.F. Bay)!

You sound tired in your post, but totally handling this twist in events!!

You mentioned the most realistic thing is being prepared - you are so right!

We cant see the future, so anticipating is the best we can do!

I am so proud of Alenxandra!! Dancing in front of the audience took

courage; having her hair up and that makeup can be so itchy!!! I hope you

have lots of photo's! I have a ballet suit (I was a shell) that I wore at 5

that my girls wore as costumes at 2-3!!

I understand your frustration in the reasurance seeking. Do your best to

treat it like any other enabling behaviour. Answer once, ask if she heard

and have her repeat the second time, and then refuse to engage in any

further discussion. She can be angry at you, but the less you participate

the less she will ask b/c she's not getting the reponse she is seeking. Dont

forget to smile and give her that " I know what going on " look!!

I hope that you can build a routine for andra that makes life easier

for all of you. In my house, this is what works - including dad - who needs

it more than anyone!!

Take care, wendy, in canada wb4@...

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August 2, 2000

Hi ,

Thanks for checking on me. Things are hectic here because my dad and

stepmom just arrived from Colorado for a visit, andra's birthday

(and party) are next week, and of course the constant O's and C's...

We've progressed from, " I'm okay, you're the problem, " to, " OCD is

bothering me - make it go away!! " andra says she won't boss back

unless I do it with/for her. {

I talked to her doctor today and we're raising her meds to the

anti-obsessional range (THANKS, KATHY!). Shopping for a new therapist

is the next order of business. I really trust and respect her current

CBT, but my hunch is that andra needs someone with a silly sense of

humor who she will " click " with better.

In the meantime, lots of handwashing, reassurance seeking, contamination

fears, not eating, and the list goes on. I saw my doc and adjusted my

depression meds this week, too! On our good days I feel that I'm

coping!

Hated to miss the chat Sunday night, but I had the opportunity to go out

for dinner and a movie with a friend. It was a terrific break. I saw,

" What Lies Beneath, " which was wonderful scary escapist fare. I

recommend it.

Take care,

Lesli (becoming an " Uno " game expert while we wait out the worst of the

OCD)

" W. Birkhan " wrote:

>

> Hi lesli, and the others that commented on tom....

>

> The job I mentioned is actually tom's sept. to june job. He also is a

> teachers assistant to grade 1. he would like a summer job too, but when you

> wake up at noon, and only get out to stores after 3, it doesnt show much

> enthusiasm! His resume is full of people related skills, which dont apply to

> work in pet, record (sorry - music), and clothing stores!! He wont work in

> the local grocery store because he doesnt like the other kids -augh! His

> fear of new things also prevents him from taking jobs where the bus route is

> one he hasnt tried before. He really needs to go to a place where he knows

> someone.... but then again, dont we all?!

>

> Tom hopes to have a career in Early Childhood Education, Child and Youth

> Worker or something related to working with children!! I wish there wasnt

> such strict employment rules for working with children since a day care

> position would have been ideal for hte summer.

>

> Its been about a week and we havent heard anything on andra and the

> 'your the problem, I'm just fine!! Silence says a lot, you know!

>

> Write soon - wendy, in canada

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August 3, 2000

Hi Lesli:

Thanks for the movie recommendation. As I am officially on vacation for

the next couple of weeks I hope to test out your recommendation. I love

thrillers, guess there is just not enough excitement living in a family

dealing with OCD!

Sounds like andra is improving quite a bit, moving away from that

blaming and looking to solve problems. Hope you keep enjoying the self

care time. Hang in there while the meds adjust, take care, aloha, Kathy (H)

kathyh@...

P.S. Your comment about UNO reminded me of how helpful playing various

board games has been to us to help Steve's recovery from OCD. He could

play " TakeOff " when he was very ill. K.

At 09:40 PM 08/02/2000 -0700, you wrote:

>

>Hi ,

>

>Thanks for checking on me. Things are hectic here because my dad and

>stepmom just arrived from Colorado for a visit, andra's birthday

>(and party) are next week, and of course the constant O's and C's...

>

>We've progressed from, " I'm okay, you're the problem, " to, " OCD is

>bothering me - make it go away!! " andra says she won't boss back

>unless I do it with/for her. {

>

>I talked to her doctor today and we're raising her meds to the

>anti-obsessional range (THANKS, KATHY!). Shopping for a new therapist

>is the next order of business. I really trust and respect her current

>CBT, but my hunch is that andra needs someone with a silly sense of

>humor who she will " click " with better.

>

>In the meantime, lots of handwashing, reassurance seeking, contamination

>fears, not eating, and the list goes on. I saw my doc and adjusted my

>depression meds this week, too! On our good days I feel that I'm

>coping!

>

>Hated to miss the chat Sunday night, but I had the opportunity to go out

>for dinner and a movie with a friend. It was a terrific break. I saw,

> " What Lies Beneath, " which was wonderful scary escapist fare. I

>recommend it.

>

>Take care,

>Lesli (becoming an " Uno " game expert while we wait out the worst of the

>OCD)

August 3, 2000

Hi Lesli!

I guess andra's meeting you half way is better than total denial! When

she says you have to help her or do the bossing back, do you just laugh and

walk away, or what?? (just checking on you here, kid!)

Your so wise to be playing games with andra that distract her and make

use of her hands. We have a huge tub of Lego (which we would use to build

houses (with furniture), cities, whatever. I happily gave up my living space

for this activity. Of course Yigal's NEED to vaccum was a constant battle!

Professionals can be soooo frustrating. You have to ask to have the meds

raised - why didnt this get done without your encouragement? I sent Tom

with Yigal to the doc this morning. I told all 3 of them it was to be a

joint session. HAHAHA jokes on me - yigal read old Time and Newsweek while

tom chatted with the doc in the other room! I know that this doc is burnt

out, but that is not my problem. At least tom will begin with a new cbt in 2

weeks....

Take care, wendy, in canada

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August 3, 2000

Lesli:

You might want to check out dominos -- a set of double twelve colored tiles at

Toys R Us. We play the Mexican Train and find it helps reduce the obsessional

thinking. There is strategy involved, but not so much that even a newbie can't

win -- especially if you play with 3 or more.

Jule

May 30, 2003

andra is adorable!!!

Sorry to hear that she's not gaining weight. Please let us know what

they find. Keep us posted.

--- In Plagiocephaly , " " <orthochik11@a...>

wrote:

> Hi all!

> I just wanted to let you know what was going on with andra.

> She's had her band for about a week and a half, and things are

going

> well so far. She's had a couple of adustments already, but the one

> yesterday seems to have done the trick--no more red spots! I posted

> some pics of her in her band and some " before " photos. The birds-

eye

> view didn't come out as well as I hoped, but you can see how flat

the

> back of her head is from the right side view. They are in the album

> labeled " andra " .

> On a different note, we went in this morning for her 9 month well

> baby checkup. She is 28 inches long, but only weighs 12 lbs, 4 oz.

In

> the past 2 months she has only gained 1 lb, 4 oz. So now she got a

> full blood and urine workup to see if there is anything that is

> causing her lack of weight gain. I'm so frustrated, because I

thought

> things were getting better! She was born at 34 weeks because I had

> oligohydramnios (low amniotic fluid) and spent 23 days in the NICU

> because she had breathing problems and a heart defect. From about 3

> months of age on she didn't gain very much weight, so finally at 5

> 1/2 months old she had surgery to correct her heart defect. She

> started eating better and gaining weight, but now we seem to be

> taking steps backward. I'm so frustrated because I thought things

> were starting to go well. She has her band, and her gross motor

> skills are on track. We've had doctor's appointments nearly every

> week since she came home from the hospital, and it seems as if

there

> is no end in sight. Hopefully we'll figure out what the problem is

> and she'll start to grow. I'm worried too that she'll be in her

band

> forever because she isn't growing! I know that there are kids out

> there that have a heck of a lot more problems than she does, but

I'm

> still so frustrated. I'm sorry that this is such a long post, and

if

> you've made it this far, thanks for listening. Anyway, I hope that

> everyone else is doing well, it sounds like it from reading the

other

> posts. Let's keep up the head rounding!

>

> and andra (9 months) STARbanded 5/19/03

May 30, 2003

,

You and andra have really been through a lot already! I'm so sorry that

the weight gain is not progressing as it should. :-( Be sure to let us know what

you find out from the tests. In meanwhile we will be praying for you.

Marci (Mom to )

Oklahoma

> Hi all!

> I just wanted to let you know what was going on with andra.

> She's had her band for about a week and a half, and things are going

> well so far. She's had a couple of adustments already, but the one

> yesterday seems to have done the trick--no more red spots! I posted

> some pics of her in her band and some " before " photos. The birds-eye

> view didn't come out as well as I hoped, but you can see how flat the

> back of her head is from the right side view. They are in the album

> labeled " andra " .

> On a different note, we went in this morning for her 9 month well

> baby checkup. She is 28 inches long, but only weighs 12 lbs, 4 oz. In

> the past 2 months she has only gained 1 lb, 4 oz. So now she got a

> full blood and urine workup to see if there is anything that is

> causing her lack of weight gain. I'm so frustrated, because I thought