New Member

[Guest guest]

Hi and welcome. I read " Brain Lock " but ended up relying almost

exclusively on March and Mulle's " OCD in Children and Adolescents " , a CBT

treatment manual, when I began doing E & RP with my daughter who was 5 1/2 at

the time.

You are on the right track in exploring this type of treatment for your

daughter, though I will warn you that many doctors and therapists, even

behavior therapists, may discourage you that your child is too young. My

daughter has had some wonderful successes in " bossing back " OCD and her

discovering that she can have some control over her OCD has very much

boosted her self-esteem.

Kathy R. in Indiana

> From: " " <dandhsmith@...>

>

> Hello my name is . I was diagnosed with ocd about 2 years ago.

> I have a 5 year old daughter which my wife and I think may have ocd

> also. From reading your messages, it seems like I came to the right

> place. I have spoken to my doctor about my daughter's symptoms and

> she believes she may have ocd also. I have read the book " Brain

> Lock " and found it very helpful. Does anyone have any experience

> with conveying the four step method in Brain Lock to a pre-schooler.

> Sicerely,

>

>

> Houston,TX.

[Guest guest]

Hi :

Welcome to the list. You will find parents of young ones here who have a

lot of experience with CBT in small children. The state-of-the-art

treatment manual is by Dr. March and Mulle entitled, " Obsessive

Compulsive Disorder in Children and Adolescents. " This protocol is also

helpful for adults with a bit of customizing.

My son who was 10 when we figured out his OCD and he got a lot out of Dr.

Schwartz's book and audio tape too. He particularly liked the pictures of

PET scans as they gave him a lot of hope that CBT was going to help. He

loved memorizing the four steps and applying them, although he did find

step #3 the hardest. He has also seen Dr. Schwartz at a distance a couple

of times and this helped to stimulate his interest in his book.

Good luck, your daughter is very lucky to have a parent with personal

experience with coping with OCD, you are a marvellous resource for her.

Take care, aloha, Kathy (H)

kathyh@...

At 08:20 PM 03/19/2000 -0000, you wrote:

>From: " " <dandhsmith@...>

>

>Hello my name is . I was diagnosed with ocd about 2 years ago.

>I have a 5 year old daughter which my wife and I think may have ocd

>also. From reading your messages, it seems like I came to the right

>place. I have spoken to my doctor about my daughter's symptoms and

>she believes she may have ocd also. I have read the book " Brain

>Lock " and found it very helpful. Does anyone have any experience

>with conveying the four step method in Brain Lock to a pre-schooler.

>Sicerely,

>

>

>Houston,TX.

>

[Guest guest]

Tammy,

Hi my name is Pat I have a 12yo son who was diagnosed with OCD, I can

remember about 2 years ago when he was afraid to throw up, which led him to

sleep in my bed and ask over and over again am I going to throw up, I

started taking him to a Doctor who told us about certain technique, such as

mediation and behavoir therapy, after a while jonathan was put on

medication, Luvox which he is still on and really has not helped him,

Except it takes about 10 to 12 weeks to get to the level in your body.

What I guess I am saying that your daughter sounds alot like my son did and

it got worse and worse and worse. We are now seeing a thrapsit who is

teaching my son tools to help him. At this stage my son is afraid of germs

and contamation.

If i were you I would find a doctor in your area and get a diagnose. Where

do you live? That would help the people on this list to help you, they are

a wonderful group of people and have helped me very much. I am sure they

will e-mail you with good advise. Just try and get the best doctor you can

from the start, I have been down a long road, But I found a great

therapist, It all takes time. Good Luck

Pat

----------

From: tammy <jellybean@...>

egroups

Subject: new member

Date: Wednesday, April 26, 2000 7:42 PM

Hi everyone,

I just found this group and I'm sure if will be very helpful.. My name is

Tammy and I am the mother of le, 9 yrs old.. She has an anxiety

disorder and is currently being treated for that.. She also has a phobia..

(fear of vomitting).. I believe she has OCD been has not yet diagnosed.. I

will tell you a few reasons I believe she has this and would appreciate any

input from you.. These are a few of the things she does... First of all,.

she will not let me touch anything in her room, doesn;t want things

changed.. I cannot put any of her games etc in her game closet .. she has a

certain way they go..... I wanted to vacuum the couch today,. but she

wouldn;t let me, afraid it wouldnt; feel the same after I did.. I cleaned

out my cupboard today and she had a fit.. said things wouldn't be in the

same order they were before.. these are just a few reasons why I think she

may have OCD.. I would appreciate and info .. Looking forward to getting to

know all of you.. Thanks and take care

Tammy

[Guest guest]

HI Tammy:

Welcome to the list and thank you for sharing about le.

What kind of treatment is le getting for her anxiety? Have

you discussed OCD with her doc? Often kids with OCD have other

comorbid disorders. For example my son Steve has an anxiety

disorder, PTSD-type 1, and a mood disorder, MDD travelling along with his

OCD.

OCD comes in many different flavors and can sometimes be tricky to

diagnose. Steve has a lot of classic symptoms like handwashing,

checking, tapping, repeating, just-so obsessions, and contamination

OCD. After reading the DSM-IV diagnostic criteria it was a

no-brainer for me to figure out he has OCD. Certainly many of the

symptoms you mention could be consistent with OCD and I recommend you

discuss this possibility with le's doc.

Take care, aloha, Kathy (H)

kathyh@...

At 07:42 PM 04/26/2000 -0400, you wrote:

Hi everyone,

I just found this group and I'm sure if will be very

helpful.. My name is Tammy and I am the mother of le, 9 yrs old..

She has an anxiety disorder and is currently being treated for that.. She

also has a phobia.. (fear of vomitting).. I believe she has OCD been has

not yet diagnosed.. I will tell you a few reasons I believe she has this

and would appreciate any input from you.. These are a few of the

things she does... First of all,. she will not let me touch anything in

her room, doesn;t want things changed.. I cannot put any of her games etc

in her game closet .. she has a certain way they go..... I wanted to

vacuum the couch today,. but she wouldn;t let me, afraid it wouldnt; feel

the same after I did.. I cleaned out my cupboard today and she had a

fit.. said things wouldn't be in the same order they were before.. these

are just a few reasons why I think she may have OCD.. I would appreciate

and info .. Looking forward to getting to know all of you.. Thanks and

take care

Tammy

[Guest guest]

Janice,

I am sorry to here about your son, What else are you doing for him? Do you

have him in therapy? Is he doing cbt. Janice, your statement was breif.

But if you just tell us a little more maybe there is more help for you and

your son mike. The road is not easy, I'm sure you know that, but there is

a way back.

Pat

----------

> From: jmb152@...

> egroups

> Subject: new member

> Date: Thursday, April 27, 2000 7:31 PM

>

> Hi! My name is Janice. This is my first time ever posting a

> message. My son Mike is 16 and has OCD since he was about 3 years

> old. We didn't know it then, but we now realize it looking back.

> His OCD got really bad when he was in 8th grade. That's when he was

> diagnosed and put on Luvox. He got better and had a great year his

> first year of high school. It was like heaven. Unfortunately the

> bottom fell out in late Sept. 1999. He has not been able to attend

> school since then. He is on Luvox, Risperdal, Buspar and now started

> taking Wellbutin for bad depression. He is refusing to take the

> medication. I just wanted to say how much I appreciate reading all

> the messages from all you wonderful parents and how much it helps me

> to know I'm not alone.

>

>

> ------------------------------------------------------------------------

> Ever been spanked?

> Forgive & Forget by clicking below

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the body of your message write: subscribe OCD-L your name. The Archives,

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going to , enter your email address and password,

then point and click. Subscription issues, problems, or suggestions may

be addressed to Louis Harkins, list owner, at harkins@... .

>

>

[Guest guest]

Welcome Tammy.

There are other children on the list with similar diagnosis to le.

Where do you live? I know that Beth in Indiana has a support group going,

but I'm not sure what is happening since she's in the middle of a move!

I used to go to the doctors office with a note book of questions. Whenever

I had something to ask, I would write it down, and ask at the next

appoitment, recording the answer too!! Its been almost 4 years since all 3

of my kids were diagnosed with ocd/mdd and I rarely use my notebook anymore!

I also established right from the beginning that the doc and I have to work

as a team, otherwise this wasnt going to be a success. He was so excited -

and definatly hopes that I will be his eyes and ears in the home. We speak.

as needed, on the telephone - he always calls back within a day of me

calling! I suggest that you develop a relationship with les doctor so

that you can ask about diagnosis and related questions.

Everyone knows that I give my speach to newbies so here goes: You must take

care of yourself. If you collapse, everything else will too. It is important

to find time every day, or at least regularly, to be by yourself doing

something that gives you pleasure. Some go for walks, othes read, go out for

coffee, play on the computer... what is important is that you think of YOU

and not ocd!!

so, take care! wendy in canada

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Hello Judy

I was very moved by your introduction.

I've been reading this list on and off for a while trying to work out if

my son is like the other kids on it (he's not diagnosed yet) All I can say

is that I feel I have a lot more in common with the struggles of the other

members on this list than the regular DS community.

Hope you find the support here you need

Wishing you all the best

Kayte (in London!)

Mum to (4.5 DS, sensory processing difficulties & ??) and Grace (3

months)

[Guest guest]

Hi Judy,

I'm Carole and my son, , is 4. We don't have a formal diagnosis yet,

but like you and many others here, did not feel that fit in with the

" typical " DS child his age. We had wondered about autism, and the early

intervention people assured us that he only had Down syndrome. Upon reading

the Disability Solutions articles, we felt like our questions had been

answered in part and enormous relief.

Although I am mostly a lurker on this list, I get so much wisdom, laughter

and sense of inclusion from it's members. Welcome.

Carole

Carrollton (Dallas), TX

>

>

>

>

>

>

>

>

>

>

>

>

>

> ------------------------------------------------------------------------

> You have a voice mail message waiting for you at iHello.com:

> 1/3555/10/_/691668/_/957907336/

> ------------------------------------------------------------------------

>

>

[Guest guest]

Thanks for the welcome. I've read the book and will start the program

tomorrow. My brother & sister-in-law are finishing their first week. Any words

of wisdom for a newbie?

Beth

Ziqena wrote:

> Welcome aboard Momo...(sorry....I needed to shorten momentum...)

> smile....Z....

[Guest guest]

-Welcome Beth; Congrats on making the decision to improve your life,

you have given yourself and family a precious gift! Follow the plan

and believe in yourself. You will be successful in reaching your

goals. Yea BFL " Taz "

-- In bodyforlifeegroups, " Mark R. Slough " <momentum@t...> wrote:

> Thanks for the welcome. I've read the book and will start the

program

> tomorrow. My brother & sister-in-law are finishing their first

week. Any words

> of wisdom for a newbie?

> Beth

>

> Ziqena wrote:

>

> > Welcome aboard Momo...(sorry....I needed to shorten momentum...)

> > smile....Z....

[Guest guest]

-G'day Cheryl: definately not a third wheel---A lean mean machine

for sure. Heck she danced all night then did cardio kick class the

next morning, I was impressed sooo much that I just took photos. LOL

was out there too and she danced till 4am. I was amazed just

watching them. You will get all the support you need here. How's

your challenge going--reaching your goals? Glad to have you here.

Looking good thru training smart the BFL way. Taz

-- In bodyforlifeegroups, " Cheryl Cundick " <cdautah@e...> wrote:

> Hi! I guess it's time to introduce myself to the group. I have

been

> lurking the last couple of days...trying to figure out exactly how

> this e-groups stuff works.

> I found out about the group through (Taz). We meet in Las

> Vegas in April during the BFL get together. She is a great

> inspiration to me! We hit it off from the start. I have lived in

> Australia and with that in common as well as BFL, need I say more.

I

> was an annoying third wheel to her and her hubby the whole time!

LOL!

> She wants me to post my transformation pictures, so I guess I

will.

> I did round one of Challenge 2000 and am currently in round three.

I

> found out about BFL last August and investigated it for about 3

> months before accepting the Challenge.

> Hope to get to know you all.

> See you around!

>

> Cheryl

[Guest guest]

..

Not as lean as you!

Actually I didn't dance, I just enjoyed the atmosphere. I have to

say though, that I hadn't stayed up to the wee hours of the morn in a

long time.

This round is going good, but like many others I am having a hard

time sticking to my nutrition plan this time around. I haven't had

my bf tested again, but I feel like I am making progress. I am

really going to have to kick it in the behind here these last weeks

(I am ending week 5).

Cheryl

> > Hi! I guess it's time to introduce myself to the group. I have

> been

> > lurking the last couple of days...trying to figure out exactly

how

> > this e-groups stuff works.

> > I found out about the group through (Taz). We meet in Las

> > Vegas in April during the BFL get together. She is a great

> > inspiration to me! We hit it off from the start. I have lived

in

> > Australia and with that in common as well as BFL, need I say

more.

> I

> > was an annoying third wheel to her and her hubby the whole time!

> LOL!

> > She wants me to post my transformation pictures, so I guess I

> will.

> > I did round one of Challenge 2000 and am currently in round

three.

> I

> > found out about BFL last August and investigated it for about 3

> > months before accepting the Challenge.

> > Hope to get to know you all.

> > See you around!

> >

> > Cheryl

[Guest guest]

Welcome, Cheryl! I was also very impressed with (Taz) when I met

her in Las Vegas. This is a great group. All of these terrific people

have helped me tremendously!

[Guest guest]

Thank you, .

Cheryl

> Welcome, Cheryl! I was also very impressed with (Taz)

when I met

> her in Las Vegas. This is a great group. All of these

terrific people

> have helped me tremendously!

>

>

[Guest guest]

Oh, that cardio kickboxing kicked ass, no doubt...even after dancing till

4am, sleeping 3 hours and then hitting the class by 9am. Shiloh,

" kardiogirl " , who taught the class was up all night too...gotta remember that

she's rooming with the rest of the " Ultimate Ones " , my new sisters. Damn,

she's good. I've always been afraid of aerobics, especially cardio

kickboxing, cuz I didn't think I'd last a whole class and would drop

dead...well, now I do cardio kickboxing once a week at my college and I love

it. In fact, I'm " shopping " for a real martial arts instructor to learn the

REAL thing.

Can't wait for Vegas 2. I think we need a stage set up in one of the

ballrooms so that we can show off and admire all our new

bods...personally...I just want to drool and admire. Got some friends on

with some real lofty goals...9%, 5% bodyfat...I'm shooting for 9%

myself...but there's plenty of time.

The Mandalay Bay won't be the same...we'll do them like we did the Luxor!!!

ha ha ha

-

-

In a message dated 19-May-00 23:38:31 Eastern Daylight Time,

dddeaton@... writes:

<< -G'day Cheryl: definately not a third wheel---A lean mean machine

for sure. Heck she danced all night then did cardio kick class the

next morning, I was impressed sooo much that I just took photos. LOL

was out there too and she danced till 4am. I was amazed just

watching them. You will get all the support you need here. How's

your challenge going--reaching your goals? Glad to have you here.

Looking good thru training smart the BFL way. Taz >>

[Guest guest]

Hi Melody,

Welcome! I am also a mom (of a ten year old) who is doing the

challenge primarily just for me, and I have similar stats to yours!

I'll be interested to hear of your coming results!

Take care,

[Guest guest]

Welcome Melody. We are here to help you reach your goals.

~Laury

[Guest guest]

My sympathies. That's a tough one. My son also has an OCD-driven

eating disorder. We haven't been able to make much progress against

it. Where (geographically is that therapist who professes to treat both

eating disorders and OCD?

The medication your daughter refused was probably Anafranil. My son has

been on it a couple years, and it has been the most effective for him.

Much more effective than the Paxil, which helped his depression but not

OCD.

Let us know how things work out.

Judy

Lynne wrote:

>

> Hi all--

>

> I am a new member who has been lurking for a week or a little longer.

> I

> joined because my 14 year old daughter is having a very hard time with

> a

> combination of anorexia nervosa and ocd. She has had " obsessive

> tendencies "

> virtually all her life, beginning with the classic handwashing at age

> two

> and shifting every so often. In elementary school, the focus became

> extreme

> perfectionism at school, coupled with the belief that if her work

> wasn't

> perfect, her life wasn't worth living. During those years, she also

> overate, often seeming to be worried that there wouldn't be enough

> food for

> her even though this was not a situation she had experienced ever in

> her

> life. Suddenly at the end of fifth grade, she decided that she would

> be

> more popular (more " perfect " , I guess) if she were thin, so she

> decided to

> lose 5 pounds and get in better shape. Sounded good to me . . .

> little did

> I know!

>

> Over that summer she lost 30 pounds, exercised compulsively, and ended

> up

> with a slowed heart rate, inability to maintain body temperature, and

> inability to eat any significant quantity of food without severe

> stomach

> cramps and diarrhea. She was then diagnosed with borderline anorexia

> (because she did not yet require hospitalization) and Irritable Bowel

> Syndrome.

>

> The good thing was that at long last I started to be able to find

> medical

> professionals who took her issues seriously. I had been seeking help

> since

> that handwashing at age 2, but had been consistently brushed off (I

> was an

> over-anxious mother and perhaps just needed therapy myself) or been

> told (or

> she was told) that she just needed a little work on her perfectionism

> via

> role playing and similar approaches. A part of me believes that at

> least in

> part the anorexia was a desperate cry from her to get her OCD taken

> seriously.

>

> That was 3 years ago. For the past two years she has been on Paxil,

> which

> initially was a miracle drug, reducing her obsessive thinking to

> almost

> normal " worrying " and allowing her to get out of the danger zone with

> the

> anorexia (normal heart rate, mostly). However, in the past 3 months,

> things

> have been getting very bad again. The IBS (bowel stuff) is worse than

> ever

> and really interferes with her life. She is obsessively worried about

> many

> things, mostly dealing with appearance, acting abilities (which are

> prodigious), and acceptance of her peers. I think I see body

> dysmorphic

> stuff developing. At this point, she has developed a way of coping

> with the

> worrying -- I am required to " reassure " her with fairly formulaic

> statements

> of my opinion that she is indeed beautiful, mature for her age, liked

> by her

> friends, etc., etc. All of these things are true, but I am extremely

> uncomfortable with the role she wants me to play in dealing with the

> OCD.

> At the same time, her weight is dropping, she is again cold all the

> time,

> wearing sweatshirts when everyone else is sweltering in summer heat

> and

> humidity, and her GI problems are escalating.

>

> She took a " break " from therapy starting last fall -- she had been

> seeing

> someone for 1 1/2 years who was a specialist in eating disorders and

> had

> also started her on the Paxil. However, my daughter disliked this

> woman,

> felt the talk therapy was not helping her, and so on. My husband and

> I were

> also unhappy with the therapist and agreed to the break. A few months

> later

> we found a medical doctor, specialist in adolescent medicine and

> eating

> disorders who seems very good, but is located at some distance from

> our

> home.

>

> The doctor believes that our daughter's anorexia is a component of OCD

> and

> that it should be treated in that way. We are having a terrible time,

> however, figuring out what that means and finding a therapist who can

> deal

> with this constellation of issues. There are also a couple of

> additional

> complicating factors which may or may not be relevant. One is that

> she is

> academically and artistically extraordinarily " gifted " -- definitely

> contributing to her feeling that she does not fit in with her peers.

> Two

> years ago we transferred her to a school for gifted kids, which helped

> but

> did not solve this problem. She is still more intellectually mature

> than

> almost all her classmates (according to her teachers, not " just " her

> parents) and still has trouble feeling she fits in, even though school

> staff

> tell us she is well liked and well respected at school. The other

> issue is

> that her younger brother has very severe disabilities, including

> physical

> disabilities and severe/profound cognitive disabilities -- he also has

> difficulties with eating since he cannot chew and has trouble managing

> food

> in his mouth. Again, this is a reason she in fact is different from

> her

> peers and it also means that food and eating has received

> disproportionate

> attention in our household compared to most other households.

>

> At this point, she really cannot leave home over night -- I'm jealous

> of all

> the people on this list who mention that their kids are at camp or the

> like!

> She stops eating entirely when she's away from home (and our constant

> watching and persuading her that it's okay to eat and she needs food

> to

> live) and her focus on hiding the obsessive thinking makes it hard for

> her

> to function socially at all.

>

> We are really at our wits end -- and this is very hard to live with,

> too, as

> you all know. I have some specific questions and am also interested

> in any

> ideas anyone has. One question we have had all along is whether the

> Paxil

> is making her bowel problems worse -- we stopped the Paxil for 5

> months

> (switched to Remeran) but the OCD got worse and the bowel stuff didn't

> get

> significantly better so she went back on the Paxil. Now we wonder

> whether

> in any case Paxil is losing its effectiveness. Should we be looking

> at

> another drug? Paxil was the first drug that was tried, mostly because

> my

> daughter refused an EKG and whatever drug was the doctor's first

> choice

> required that she have one. (This refusal was tied to all the body

> image

> issues and her being convinced that the technicians would think she

> was a

> " little girl " and she " couldn't live with that. " ) As I said, it was

> initially wonderful, but is no longer so effective even though we just

> increased the dose a month ago from 30 mg to 40 mg per day. We have

> also

> talked about just trying another increase.

>

> I'm also interested in trying CBT instead of the talk therapy pushed

> by the

> eating disorders people in my area, both psychologists and

> nutritionists.

> She absolutely does not want talk therapy, and I tend to agree with

> her that

> she needs something more concrete where she feels she is *doing*

> something.

> I looked on the Internet and found someone nearby who lists himself as

> doing

> CBT and being interested in both eating disorders and OCD. But I

> don't know

> anyone who can recommend him (or anyone else) personally. Many years

> ago I

> chose a therapist for myself from the yellow pages and found her to be

> wonderful, but I still feel hesitant this time. If I interview this

> person,

> what should I be asking and looking for.

>

> Lastly, I'm confused about my role in her OCD as more or less being a

> part

> of the compulsive behavior via my required " reassurances " . I worry

> I'm

> making things worse rather than helping if I say those magic words,

> but when

> I refuse she goes into out-of-control rages and talks very suicidally

> --

> this goes on for many hours, usually until she eventually goes to

> sleep or

> else until I give her the reassurances she wants/needs. Her reliance

> on me

> also deprives both of us of independence at a time when we both need

> it to

> be increasing, not decreasing. Surely other people have been through

> this -- what have you been told and how have things played out?

>

>

>

> ----------------------------------------------------------------------

>

> ----------------------------------------------------------------------

> You may subscribe to the OCD-L by emailing listserv@... .

> In the body of your message write: subscribe OCD-L your name. The

> Archives, Files, and Features List for the may

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[Guest guest]

In a message dated 7/3/00 7:48:07 PM Central Daylight Time,

ltmrs@... writes:

> The doctor believes that our daughter's anorexia is a component of OCD and

> that it should be treated in that way. We are having a terrible time,

> however, figuring out what that means and finding a therapist who can deal

> with this constellation of issues. There are also a couple of additional

> complicating factors which may or may not be relevant. One is that she is

> academically and artistically extraordinarily " gifted " -- definitely

> contributing to her feeling that she does not fit in with her peers. Two

> years ago we transferred her to a school for gifted kids, which helped but

> did not solve this problem. She is still more intellectually mature than

> almost all her classmates (according to her teachers, not " just " her

> parents) and still has trouble feeling she fits in, even though school

staff

> tell us she is well liked and well respected at school. The other issue is

> that her younger brother has very severe disabilities, including physical

> disabilities and severe/profound cognitive disabilities -- he also has

> difficulties with eating since he cannot chew and has trouble managing food

> in his mouth. Again, this is a reason she in fact is different from her

> peers and it also means that food and eating has received disproportionate

> attention in our household compared to most other households.

>

WOW! You must be my long lost twin! You have described my family with a few

differences. I am the one with the eating disorder. I am terrified because I

am seeing signs of a developing one in my son . Not sure how much I am

seeing is learned behaviors, counting calories, label reading, obsessing

about weight, and how much is the OCD. But a lot of what I have been reading

about ED's they are very closely related to OCD if not a direct part of OCD.

My mother and both my sons have OCD and I have ED's. MMMM

is very gifted. He read Jurassic Park when he was seven years old. He

is a perfectionist and doesn't fit in well with his peers. They just don't

" get him " and he doesn't understand why they don't think like he does.

has a younger brother, with developmental delays, eating

problems (can't chew foods, throws up easily, dietary protein intolerance)

low cognitive skills, Tourette's syndrome and a whole other host of

problems.

As far as your daughters ED ... anorexia is not only anorexia if they are

hospitalized. If they restrict calories for too long too consistently they

are anorexic. Size is not the issue. It is the emotions behind the anorexia.

Eating disorders can kill at any weight and needing to be hospitalized or not

is not the diagnosing factor. Doctor's who say that usually wind up

triggering more behaviors ... " you don't think I am sick enough .. I'll show

you " then it will lead to bulimia.

This is a site that I have found that is the best information I have found on

ED's. <A HREF= " http://www.something-fishy.org/ " >The Something Fishy Website

on Eating Disorders</A> Please Please Please! Get help for her NOW. I have

been living with ED's for 20 years and I have had to take Inderal to regulate

my heart beat when I was only 20 years old. I have lost my gall bladdar. I

have had so many problems it is unreal. I have scar tissue on my esophogus, I

have 17 separate healed ulcers in my stomach. I have permanently damaged the

valve at the bottom of the stomach so I will have reflux for the rest of my

life and there is nothing they can do to fix it. I have pyloric spasms from

the damage I have done. Pain will forever be a part of my digestion. Meds

only help so much. If I sound like I am trying to scare you ... I am. I have

a lot of medical problems that have nothing to do with my having ED's ... but

every last one of them are made worse by having abused my body for 20 years.

My ED started out with anorexia, then went to bulimia, then anorexia

athletica (compulsive exercising) then compulsive overeating (triggered by

prednisone). But I am not skinny in the least. In fact I weigh 250 lbs. But I

have been up and down loosing and gaining a 100 lbs in a years time 4 times

in the last 7 years! I get on prednisone, start compulsive overeating, gain

weight... get shocked... start restricting... start loosing, someone puts me

in a situation that I have no choice but to eat, I purge, that starts the

binge/purge, then starts the laxatives. This is such a dangerous road. Find

someone to take her seriously BEFORE she needs hospitalization. By the time

she is sick enough for hospitalization significant damage has been done to

her organs. And guess what ... with all the damage done to my body ... I have

never been in an eating disorder clinic. In patient or out patient. Some of

my docs know and are taking it seriously, some are looking at my weight and

shrugging it off.

Please get her help now. OH >>>>>> remove all scales from your house if you

find she is weighing herself more than once a day. I would weigh myself

everytime I went to the bathroom and if it had gone up ... I would skip the

next meal. I no longer have scales in my house. (driving my oldest nuts but I

will not let him fall into my traps!)

Please let me know if I can help.

Peggikaye: myasthenia gravis and osteoarthritis migraines, asthma,

wife to Don: post polio syndrome and barrettes esophagus

Mom to AKA Bug: IgG subclass 2 deficient; OCD; trichotillomania: mild

hearing loss;

Mom to AKA Taz: IgG deficient; PDD- NOS; Tourettes Syndrome;

mild OCD; SID; asthma; auditory processing disorder; esophageal

reflux; pyloric spasm; visual motor delays and astigmatism; Arnold Chiari

malformation type 1; bifrontal lobe atrophy, and migraine syndrome

[Guest guest]

:

Thank you for writing such a detailed and articulate letter about your daughter.

I don't have any experience with eating disorders other than as a registered

nurse I know they can be deadly and, like suicidal ideation, should be taken

seriously. I would definitely seek the care of another medical professional --

one with whom you and your daughter are comfortable. Although any medication

can cause bowel problems, the one most frequently associated with Paxil is

constipation. More likely, the anxiety is adding to her IBS. On the list we

frequently talk about medication " poop-out " , where a med will work (sometimes

for years) and then quit being effective. For example, my 11 yo son was on

Prozac for two years with good results. This spring he suddenly became severely

depressed and his ocd symptoms exacerbated. We had to made a switch to another

SSRI, and this one seems to be working well. The month we tapered down the

Prozac and up on the Celexa was sheer hell, however. It is also helpful to keep

in mind that in order for SSRIs to be effective for treatment of OCD, the dose

must be higher than for treatment of depression. Some docs are not comfortable

prescribing a therapeutic dose, especially in children. This is why it is

critical to find someone well conversant with treatment of OCD in children and

adolescents.

I'm sure Kathy H and will stress the importance also of finding a

therapist trained in CBT and ER & P. Talk therapy has been proven to be

ineffective in treatment of OCD. If you let us know where you live, one of us

may be able to recommend someone in your area.

As to reassurance -- this was perhaps the hardest concept for me to grasp. My

son is primarily obsessional -- thoughts of death, apocalypse, major disease,

etc. I didn't realize for a long time that my reassurance was fueling the ocd

fire. I now will offer reassurance once, remind him that this is ocd talking,

and encourage him to " boss back " . Last night he actually did this himself! It

gives me hope.

Anyway, I welcome you to the list. There are wonderful people here with advice,

experience and sympathetic shoulders. If you haven't already done so, I would

encourage you to visit the oc foundation website. The annual conference is in

August, and many of us on the list will be attending.

Jule in Cleveland

[Guest guest]

In a message dated 7/4/00 4:44:24 PM Central Daylight Time,

ltmrs@... writes:

> The rational approach.

> Doesn't seem to help at all, at least not for more than a few minutes. I

> think the OCD kicks in and she starts worrying about it, so that she has to

> be reassured over and over.

That's part of the problem with eating disorders. Rational doesn't enter the

equation. There is nothing rational about the whole process. I am not sure

what approach would be the best. I am trying to think what I would have

responded to as a teenager. No one knew about my ED when I was a teen. The

word anorexia just wasn't around that much. Every one knew Carpenter

had died from it but the extent that teens did it was unknown. I only reached

out for help recently. I mean REAL recently. When I heard tell a

neighbor girl that he was going on a diet like his mom's I felt like I had

been slapped. So I did an Internet search and found the fishy site.

Sounds like you got a good therapist. I understand what you mean about the

fine balance between scaring her and not wanting her to think it is

acceptable.

Sorry I am not much help in the recovery aspect. Maybe as I seek help I will

learn more. I thought I had a year of recovery but I realized through posting

and reading posts on the fishy board that I had just switched the binge/purge

for compulsive overeating, which is just as much an eating disorder as

anorexia. And just as deadly. And I think having full blown OCD in

combination with the ED connected or not is going to complicate things.

If I think of something I will let you know.

Peggikaye ... Oklahoma

[Guest guest]

Peggy--

You wrote:

> WOW! You must be my long lost twin! You have described my family with a

few

> differences. I am the one with the eating disorder. I am terrified because

I

> am seeing signs of a developing one in my son . Not sure how much I

am

> seeing is learned behaviors, counting calories, label reading, obsessing

> about weight, and how much is the OCD. But a lot of what I have been

reading

> about ED's they are very closely related to OCD if not a direct part of

OCD.

> My mother and both my sons have OCD and I have ED's. MMMM

My husband claims that I probably also have kind of borderline OCD but have

learned to manage it -- certainly never anything as consuming as what my

daughter deals with though. I am a bit of a perfectionist, which of course

serves one well in many settings as long as it doesn't get " out of hand " .

Like my daughter, I kind of alternate between being extremely neat and

organized and being a complete slob -- I find it almost impossible to stay

in a comfortable middle ground. When I was a teen I was also very thin

although I now struggle with my weight. I do not, however, remember ever

being particularly concerned with weight or appearance, at least not in that

way. Still, it's hard to know how to view one's own history and one's

family history!

> As far as your daughters ED ... anorexia is not only anorexia if they are

> hospitalized.

Yes, I am well aware of this! The problem is getting a diagnosis that will

bring insurance coverage for treatment, or even treatment at all. So few

people out there, even the medical people, really understand anorexia.

>If they restrict calories for too long too consistently they

> are anorexic. Size is not the issue. It is the emotions behind the

anorexia.

> Eating disorders can kill at any weight and needing to be hospitalized or

not

> is not the diagnosing factor. Doctor's who say that usually wind up

> triggering more behaviors ... " you don't think I am sick enough .. I'll

show

> you " then it will lead to bulimia.

Yes, that's why I'm delighted with my daughter's new doctor, who takes it

all very seriously, but without the excessive crisis orientation that makes

my daughter very skeptical of what a person is telling her.

>

> This is a site that I have found that is the best information I have found

on

> ED's. <A HREF= " http://www.something-fishy.org/ " >The Something Fishy

Website

> on Eating Disorders</A>

I found the site a while back and do visit it periodically.

>Please Please Please! Get help for her NOW.

Again, the problem is not my motivation or sense of urgency. But although I

find lots of people eager to take our money, it is hard to find any actual

*help*! The combination of issues requires someone who is a real thinker as

well as having good breath of experience and/or training . . . and on top of

that it's so difficult to find someone my daughter will have anything to do

with.

I have

> been living with ED's for 20 years and I have had to take Inderal to

regulate

> my heart beat when I was only 20 years old. I have lost my gall bladdar. I

> have had so many problems it is unreal. I have scar tissue on my

esophogus, I

> have 17 separate healed ulcers in my stomach. I have permanently damaged

the

> valve at the bottom of the stomach so I will have reflux for the rest of

my

> life and there is nothing they can do to fix it. I have pyloric spasms

from

> the damage I have done. Pain will forever be a part of my digestion. Meds

> only help so much.

My daughter had an endoscopy last fall which showed no damage yet. That was

good news -- I hope it's still true! However, the nutritionist says that

she may have been restricting so long and eating so little that virtually

any food will set her off and that it could take a long time to slowly

condition her body to handle food. Both the nutritionist and the doctor

believe that my daughter's lactose intolerance may be a case in point. It

developed only after a year of anorexia and may or may not be separable from

the anorexia. In the meantime, however, it makes it easier for my daughter

to rationalize restricting since she refuses all food that " might " have any

lactose -- which ends up being almost everything except plain fruits and

vegetables or plain meat.

If I sound like I am trying to scare you ... I am. I have

> a lot of medical problems that have nothing to do with my having ED's ...

but

> every last one of them are made worse by having abused my body for 20

years.

We have had various professionals take various tacks in terms of trying to

frighten my daughter versus trying to reassure her. As a parent, I am

definitely frightened -- but I'm not convinced that conveying my fear to her

is always productive. And yet if I act like things aren't serious, I allow

her to think that the anorexia is more or less an acceptable lifestyle. She

herself goes back and forth. Lately she has been telling me that she knows

she must be really " sick " , and yet she also tells me that she's not " ready "

to get better.

> Please get her help now. OH >>>>>> remove all scales from your house if

you

> find she is weighing herself more than once a day.

Yes, we hid our only scale 2 years ago and I know she doesn't use it. At

this point she doesn't ever want to get weighed. Her former therapist was

supposed to weight her every week to monitor things, but she didn't do it --

one of many reasons we dumped her as it seemed to be mere laziness rather

than a belief that weighing should be abandoned. On the other hand, I

really wish I could monitor her weight myself! I do what I can with how she

looks and acts. ly, she gets increasingly irritable when she increases

the restrictions, so I can usually tell pretty darned quickly -- mostly if I

find myself ready to throttle her all the time!

A few questions for you, knowing that you are not my daughter and what

works/worked for you might not be the same. My daughter is always asking me

if she ate too much after eating any significant food at all. I usually

estimate the calorie intake, total it so far for the day, and point out that

she is still not taking in enough for maintenance. The rational approach.

Doesn't seem to help at all, at least not for more than a few minutes. I

think the OCD kicks in and she starts worrying about it, so that she has to

be reassured over and over. But there is another problem. Actually, she

needs to be eating *more* than she needs for maintenance in order to bring

her weight up. This idea is totally intolerable to her, even though she can

accept it rationally. If I keep saying she's okay because she's not

exceeding the maintenance level, am I working against the goal of eventually

gaining some weight? Would it be better for me to say something else, or

perhaps to say nothing at all. I've tried refusing to reassure her, but

that causes her to go bezerk and to conclude that I don't love her, don't

care, and therefore she is unlovable, should die, etc., etc. and we are back

to suicidal thinking. What else can I do?

Any thoughts would be most appreciated!

[Guest guest]

I wrote about my daughter who has anorexia and OCD, along with Irritable

Bowel Syndrome. A few people asked where I live in hopes they can recommend

helpful professionals. I live in the northern suburbs of Detroit MI. All

referrals would be welcome!

--

[Guest guest]

Jule--

Your comments about reassurance are exactly what I was suspecting -- that

giving them was feeding the fire, not helping put it out! My daughter is

trying to reduce the number of times she asks for reassurance, so that now

she'll say, " It's been 4 hours and I need reassurance. " This is a huge

effort for her. It makes my life easier, but is it helping? I've also read

that fighting the obsession can make it worse than just going with it. I

feel I need the help of a therapist to work out a plan that she buys into

and that makes enough sense to invest in it for a while. Just can't find

that person yet!

The psychiatrist who originally prescribed her Paxil said that she could go

up to 60 mg, but not beyond. She is now at 40, but is no longer seeing him.

I'll be talking to the new doctor this week about whether we should try

another increase, and if so, how much. I'm used to adjusting my son's

anti-seizure medications on my own, but feel less competent with these

drugs. I'm also nervous about switching drugs because weaning her off Paxil

last time was so horrendous -- she ended up staying in bed for a week, too

dizzy to walk, and then obsessing continuously with lots of suicidal

thinking. That was when we decided to see if going off Paxil would improve

her gut, which it didn't. Obviously, if there needs to be a change, we'll

do it . . . but I think my daughter and I both need to feel we're following

some pretty good advice!

--

[Guest guest]

Hi Lynne:

Your daughter is doing well to recognize that limits need to be put on her

need for reassurance. The best way to " spit in the eye " of OCD is to do

the opposite of what it demands. I would encourage you to find a therapist

who will work with you to develop a hierarchy of her OCD symptoms and get

started doing exposure and response prevention (no reassurance, just one

initial assurance for example).

Our beloved OCDers often respond with great upset when we stop providing

reassurance as this causes their anxiety to spike. That is the way that

E & RP works, they have to learn to live through their anxiety spiking until

they reach habituation. That way they learn anxiety does not kill even if

it feels lethal to do at first. As they start to have success with this,

their self-confidence builds and they are ready to tackle more difficult

symptoms higher up on the hierarchy.

It is quite possible that 40 mg is too low to improve your daughter's OCD

symptoms. I hope you can find a psychiatrist to work with your daughter on

increasing the dosage to an effective level. It can take 2-3 months at the

highest level before you know if the medication works for OCD or not.

We just helped our son, Steve, titrate off Paxil and onto Luvox. To avoid

the Paxil withdrawal you described in your daughter, they go down slowly

and simultaneously titrate slowly up on the new anti-obsessional

medication. We titrated Steve down 5 mg of Paxil every 4-7 days and up on

Luvox 25 mg at the same time. It has gone amazingly smoothly. All the

adjustment necessary was to switch the Luvox to the am as he was

experiencing some insomnia from the activation by LUvox.

In your other posts you have explained the complexity of dealing with ED as

well as OCD. I hope you will be able to find a therapist who is

knowledgeable and experienced in both these disorders. Sometimes we have

to hunt and hunt to find the right care for our kids. I used to drive my

family crazy by constantly seeking out more knowledgeable and experienced

professionals but once they saw the difference that dealing with truly

skilled therapists made, they expressed their appreciation for my

singlemindedness.

Sometimes our kids express dislike for their CBT therapists. It is

important to distinguish whether this dislike is for the E & RP and the

anxiety it causes or whether it truly is dislike. One of the best ways I

have found of telling if a therapist is going to work out is get

testimonials from other parents with kids with OCD. You may find a good

source of referrals at your local OCD support group. The OCF website

(http://www.ocfoundation.org) has a listing of OCD support groups worldwide.

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

kathyh@...

At 05:15 PM 07/04/2000 -0400, you wrote:

>Jule--

>

>Your comments about reassurance are exactly what I was suspecting -- that

>giving them was feeding the fire, not helping put it out! My daughter is

>trying to reduce the number of times she asks for reassurance, so that now

>she'll say, " It's been 4 hours and I need reassurance. " This is a huge

>effort for her. It makes my life easier, but is it helping? I've also read

>that fighting the obsession can make it worse than just going with it. I

>feel I need the help of a therapist to work out a plan that she buys into

>and that makes enough sense to invest in it for a while. Just can't find

>that person yet!

>

>The psychiatrist who originally prescribed her Paxil said that she could go

>up to 60 mg, but not beyond. She is now at 40, but is no longer seeing him.

>I'll be talking to the new doctor this week about whether we should try

>another increase, and if so, how much. I'm used to adjusting my son's

>anti-seizure medications on my own, but feel less competent with these

>drugs. I'm also nervous about switching drugs because weaning her off Paxil

>last time was so horrendous -- she ended up staying in bed for a week, too

>dizzy to walk, and then obsessing continuously with lots of suicidal

>thinking. That was when we decided to see if going off Paxil would improve

>her gut, which it didn't. Obviously, if there needs to be a change, we'll

>do it . . . but I think my daughter and I both need to feel we're following

>some pretty good advice!

>

>--