Introduction

[Guest guest]

Hi Dana,

I subscribed to the teen list for a few weeks to see if it would be appropriate

for my 12 yr old daughter. I decided that the subject matter was too over her

head and not what I wanted her to be thinking about at age 12, but I think it

would be okay for older kids, great even, depending on the kid. The only way to

find out is to subscribe and see for yourself, since you know your daughter

best.

Hope that helps!

Dana in NC

K12m10d42@... wrote:

> From: K12m10d42@...

>

> Hello everyone, my daughter has OCD also. I have a hard time trying not to

> get frustrated with her when she won't do things around the house I take for

> granted. She picks her eyelashes and germs are a problem. I have a feeling

> there are more, but she is so suddle about them it's always a challenge to

> figure out what is going on. I'm a single parent and it is so hard for

> anyone to understand what it's all about. My daughter is almost 14 and I'm

> trying to get her to use the teen list to communicate with others. Does

> anyone think she's too young for this?

>

> Thank you for any feed back

>

> Dana

>

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

[Guest guest]

Hi Wanda,

Thanks for the welcome!

> I would love to hear more

> about

> your child, (oc symptoms etc).

>

He is a washer and fears anything being dirty. That includes clothing, bedding

etc. He goes through enough clothes and towels a day for 3 people. He is

afraid

to touch anything he thinks is dirty (which is almost everything).

I think he may also have ADHD. He just cannot keep still.

Thanks again for the welcome!

in LA

Swmbrown@... wrote:

> From: Swmbrown@...

>

>

> Hello & welcome. We have a 7yr old daughter who was diagnosed w/ ocd at 3.

> Her main problems are with clothing(including shoes & socks). She was also

> diagnosed w/ bipolar & we recently added depakote sprinkles to her prozac.

> She has had her first " major " improvement since we have been seeking help.

> The depakote seems to be the correct medication for her. It can be so

> flustrating trying the different meds & waiting it out - then after the weeks

> of waiting, you find out it's not the one that will help. This list has

> been very helpful to me. It sound bad, but it does help to know that others

> are going through the same things you are. And you see that there is hope by

> hearing the " success/improvement " stories. I would love to hear more about

> your child, (oc symptoms etc). Good luck, Wanda

>

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

[Guest guest]

Hi Lesli,

Thanks for the welcome!

> How old is your son?

>

He is 8.

in LA

Masoud & Lesli Molaei wrote:

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

>

> Dear ,

>

> Welcome to the list. How old is your son?

>

> You are where we were about a year and a half ago. I felt a lot of

> grief and many other emotions when my daughter (now age 6) was first

> diagnosed, and learning about treatment options was difficult and

> confusing.

>

> But now, looking back, her OCD diagnosis and subsequent treatment was

> the best thing that ever happened to our family. Please write with any

> questions you may have and we will try to help and share what we've

> learned (so far!) with you.

>

> Take care,

> Lesli (S.F. Bay)

>

> Losavio wrote:

> >

> > From: vinlin@... ( Losavio)

> >

> > Hi Everyone,

> >

> > My name is . I have a son who was just diagnosed with OCD. We

> > have suspected for some time now that something was wrong with him. It

> > has just gotten so bad that we knew we needed to see what we could do

> > about it. I am hoping to learn a lot from all of you as most of you

> > seem to have been dealing with this for awhile and seem to know how to

> > handle it. We are having a rough time.

> >

> > We have only been to our therapist twice. So we haven't actually gotten

> > much done beyond figuring out he has a problem. We saw the Child

> > Psychiatrist yesterday and they put him on Zoloft.

> >

> > Well I really don't know how much I will be able to help anyone but I

> > will try if I can. I am looking forward to the support and help that I

> > think I will find here. It is nice to know we are not alone.

> >

> > Thanks,

> >

> >

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

[Guest guest]

Hi ,

It is so nice to have found all of you. I have had some relief just knowing

that this is something others go through and it can get better.

I am not sure what exactly the therapist has in mind yet since we are at the

beginning. But I am filing all of these terms away in my mind and will compare

that to what she says. I know she said she was going to try to work with him on

relaxation next week.

in LA

" W. Birkhan " wrote:

> From: " W. Birkhan " <wb4@...>

>

> Hi there ,

> (vinlin@...)

>

> We all know how you feel. It is a shock to know that your child has

> something in them that we cant control, and that they must learn to control.

> Its hard, but we do get over it. I have 3 ocd kids and an ocd hubby - and

> instead of being overwhelmed, I try and funnel my energy towards ocd

> advocacy and education, and my work.

>

> Medication is given to children when the doc's are having difficulties

> connecting with them through therapy. There may be some more on going

> diagnostic work done too. Meds could be prescirbed because of ocd being so

> severe, or perhaps depression. But whatever it is, meds are a matter of

> trial and error. Not all work for everyone. The amount used for ocd tends to

> be higher than the amount prescribed for depression, btw. Your sons

> therapist should be using cognitive behavioural therapy with a technique

> called Exposure and Response Prevention. It is now the best treatment for

> ocd availble.

>

> I wont overwhelm you with too much info - but please, feel comfortable

> asking lots of questions!! You will get a difference of opinion on some

> things - which is healthy and encouraged here! Our #1 rule is: take care of

> yourself, because if you arent doing well, then the whole system falls

> apart!

>

> take care,

> wendy in canada

> wb4@...

>

> PS - it helps if you put something with your name to help identify which

> , or Michele, or wendy, or kathy... that you are!!!!

> ______________________________________________________

> Get Your Private, Free Email at http://www.hotmail.com

>

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

[Guest guest]

Hi ,

Welcome to this wonderful list. I am interviewing a new doctor for my

12 yr old daughter and I know one really really important thing to ask

is : How many patients with OCD have you treated? That is crucial, in

my opinion. They might be familiar with the terms and kinds of

recommended treatments etc., but experience really counts. I also plan

on checking with the people on this list before I follow a doctors plan

or recommendations. These people are great

consultants/friends/support! I might have to do ERP on myself if I bug

Kathy and too much :-).

Dana in NC

[Guest guest]

Hi Dana:

Welcome to the list and thanks for introducing yourself and telling us

about your daughter. I don't think she is too young to participate on the

teen list; I wish I could get my son, Steve, to do this and he is just 13

today.

Is your daughter getting treatment for her OCD? This made a tremendous

difference to our son, Steve. You are so right, we know only very little

about how OCD is in almost every pore of their existence. I compare our

knowledge and awareness to being just the tip of the iceberg of what is

going on. Secrecy, embarrassment, guilt, denial, shame and other complex

feelings really get in the way of figuring things out. For a time I felt

like a detective and I would watch Steve like a hawk trying to figure out

his many symptoms and he hated it. It has taken me years to be less

vigilant and conscious about Steve's OCD but I must say that I still get

angry at OCD for being such a thief of good times in our family.

You will find many parents with the same concerns and challenges from OCD

on this list and will have lots of opportunity to communicate with others

who truly understand. This has been a great relief to me. <VBG>

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

kathyh@...

At 11:39 PM 01/21/2000 EST, you wrote:

>From: K12m10d42@...

>

>Hello everyone, my daughter has OCD also. I have a hard time trying not to

>get frustrated with her when she won't do things around the house I take for

>granted. She picks her eyelashes and germs are a problem. I have a

feeling

>there are more, but she is so suddle about them it's always a challenge to

>figure out what is going on. I'm a single parent and it is so hard for

>anyone to understand what it's all about. My daughter is almost 14 and I'm

>trying to get her to use the teen list to communicate with others. Does

>anyone think she's too young for this?

>

>Thank you for any feed back

>

>Dana

[Guest guest]

HI:

I agree with Dana that experience with successful treatment of OCD is very

important. Also I would ask professionals for referral to families whose

kids have been successfully treated. This is always met with protestations

about confidentiality, etc. So I give them permission to give my phone

number to the other families and encourage them to call me. I have never

gotten any phone calls this way. However since we live in such a small

place I have managed to network and find some other OCD families who found

that some of the docs we saw could not help them either!

What has worked best for us is to get recommendations of docs from other

families with OCD kids. Another strategy that has worked well is to find

someone willing to learn and willing to invest the time needed to learn how

to do E & RP and what the most effective OCD treatments are. The main thing

I learned about finding a mental health professional to help is do not give

up, there is a solution, do not settle for an inadequate solution. Be

fussy and take the time necessary to get a skilled professional on your

treatment team.

One of the best pieces of advice I got on how to be a mental health

services consumer was from Dr. Fred Penzel. He told me not to return for a

sixth visit if no progress was being made by Steve after 5 visits to an OCD

treatment provider. This could have saved me a lot of money if I only knew

this earlier on and has saved me a lot of money since Dr. Penzel explained

this.

As Dana mentioned we have our own BTI-trained OCD professional/parent,

Birkhan (From -40 degrees Fahrenheit and Celsius) on this list. Also

we have Dr. Tamar Chansky as a professional resource who can provide

pointers on how to choose a mental health professional and many, many other

aspects of living with OCD.

Good luck building your OCD treatment team. Take care, aloha, Kathy (H)

kathyh@...

At 05:14 PM 01/22/2000 -0500, you wrote:

>From: Dana Carvalho <clayvon@...>

>

>Hi ,

>Welcome to this wonderful list. I am interviewing a new doctor for my

>12 yr old daughter and I know one really really important thing to ask

>is : How many patients with OCD have you treated? That is crucial, in

>my opinion. They might be familiar with the terms and kinds of

>recommended treatments etc., but experience really counts. I also plan

>on checking with the people on this list before I follow a doctors plan

>or recommendations. These people are great

>consultants/friends/support! I might have to do ERP on myself if I bug

>Kathy and too much :-).

>Dana in NC

[Guest guest]

She is definitely not too young for the teen list. I have monitored it

to see if it is suitable for my 14 year old, and there is as range of

participants, many of which are as young as 14 or even younger.

Judy

K12m10d42@... wrote:

>

> From: K12m10d42@...

>

> Hello everyone, my daughter has OCD also. I have a hard time trying

> not to

> get frustrated with her when she won't do things around the house I

> take for

> granted. She picks her eyelashes and germs are a problem. I have a

> feeling

> there are more, but she is so suddle about them it's always a

> challenge to

> figure out what is going on. I'm a single parent and it is so hard

> for

> anyone to understand what it's all about. My daughter is almost 14

> and I'm

> trying to get her to use the teen list to communicate with others.

> Does

> anyone think she's too young for this?

>

> Thank you for any feed back

>

> Dana

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

> [

[Guest guest]

Hello Robin:

Thanks for introducing your family to the list. The SD and OCD connection

is not at all unusual and seems to be more prevalent with girls. I am sure

you will meet other parents from your state and whose kids have similar

diagnoses. Our son, Steve, 13 today has OCD (it was severe, now mostly

subclinical), major depressive disorder, and post traumatic stress

disorder-type 1.

HE is doing quite well with his OCD and other DSM-IV diagnoses right now

but has been felled by the flu. Good luck to you and your family, take

care, aloha, Kathy (H)

kathyh@...

At 10:48 PM 01/22/2000 -0800, you wrote:

>From: Jay and Robin Tzucker <rjtzuckr@...>

>

>HI All,

>I'd like to introduce myself...my name is Robin and my husband has OCD

>(mild, now), our oldest daughter (12) was diagnosed with it in July and

>our seven year old son is now showing signs of the same extreme anxiety

>that has had all her life. No signs of ocd with him yet, but I'm

>afraid they may be coming.

>

> is more into " rituals " ...things like touching the last step

>before she goes into her room, or checking the burners on the stove,

>smelling fingers, etc. She also has always been very anxious (was

>diagnosed with severe separation anxiety when she was six) and told me

>once that she feels like there is a magnet inside of her that pulls her

>to me all the time (yes, that's how I feel too!! I once walked into six

>different rooms over a ten minute period, just to see if she would keep

>following me...and she did!).

>

>Living with her has been the challenge of my life. I have been trying to

>find a local support group, and failing at that am feeling extremely

>grateful that this list exists!! Thank you all for being there. I am

>looking forward to becoming part of this community.

>

>Robin

>Washington state

>

renting List may be accessed by going to

> .

>Enter your email address and password.

>Click on the highlighted list name and then click on index.

>

>

>

>

[Guest guest]

Robin, in Washington State,

I also live with multiple ocd'ers. My hubby and 3 kids have ocd and

depression issues. They were only diagnosed 3.5 years ago, so what I thought

was typical family stuff definatly wasnt!! In my experience, the more

there are the easier it is - because we're all doing the same thing! The

kids catch each other doing ocd things - and LOVE to pick on their father!

Everyone is encouraged to make jokes about ocd - we have some hysterical

supper time conversations!

Do your ocd'ers take any meds? are they in therapy? how do you cope??

Are you taking care of yourself?

welcome,

wendy in canada,

wb4@...

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Hi Dana,

Thanks for the welcome! I am already learning so much here. I am so glad

to have found this list.

in LA

Dana Carvalho wrote:

> From: Dana Carvalho <clayvon@...>

>

> Hi ,

> Welcome to this wonderful list. I am interviewing a new doctor for my

> 12 yr old daughter and I know one really really important thing to ask

> is : How many patients with OCD have you treated? That is crucial, in

> my opinion. They might be familiar with the terms and kinds of

> recommended treatments etc., but experience really counts. I also plan

> on checking with the people on this list before I follow a doctors plan

> or recommendations. These people are great

> consultants/friends/support! I might have to do ERP on myself if I bug

> Kathy and too much :-).

> Dana in NC

>

[Guest guest]

Hi Kathy H,

Thanks so much for all of the advice. I am keeping all these in a file so that

I can look back on them and use them to help us as we start therapy. I have so

much to learn! But I know I have come to a very good place )

in LA

Kathy Hammes wrote:

> From: Kathy Hammes <kathyh@...>

>

> HI:

>

> I agree with Dana that experience with successful treatment of OCD is very

> important. Also I would ask professionals for referral to families whose

> kids have been successfully treated. This is always met with protestations

> about confidentiality, etc. So I give them permission to give my phone

> number to the other families and encourage them to call me. I have never

> gotten any phone calls this way. However since we live in such a small

> place I have managed to network and find some other OCD families who found

> that some of the docs we saw could not help them either!

>

> What has worked best for us is to get recommendations of docs from other

> families with OCD kids. Another strategy that has worked well is to find

> someone willing to learn and willing to invest the time needed to learn how

> to do E & RP and what the most effective OCD treatments are. The main thing

> I learned about finding a mental health professional to help is do not give

> up, there is a solution, do not settle for an inadequate solution. Be

> fussy and take the time necessary to get a skilled professional on your

> treatment team.

>

> One of the best pieces of advice I got on how to be a mental health

> services consumer was from Dr. Fred Penzel. He told me not to return for a

> sixth visit if no progress was being made by Steve after 5 visits to an OCD

> treatment provider. This could have saved me a lot of money if I only knew

> this earlier on and has saved me a lot of money since Dr. Penzel explained

> this.

>

> As Dana mentioned we have our own BTI-trained OCD professional/parent,

> Birkhan (From -40 degrees Fahrenheit and Celsius) on this list. Also

> we have Dr. Tamar Chansky as a professional resource who can provide

> pointers on how to choose a mental health professional and many, many other

> aspects of living with OCD.

>

> Good luck building your OCD treatment team. Take care, aloha, Kathy (H)

> kathyh@...

>

[Guest guest]

Hi Robin,

Welcome to the group - I'm glad you found us. I looked for a local support

group as well and there isn't one here so I was very happy when I found this

list and it has been such an incredible help and support and source of

info. My husband has OCD as well as my 12 yr old daughter (diagnosed at age

9 but had it since infancy!).

Living with loved ones with OCD has been a great challenge in my life too

(even my mom has it). When my daughter, Ava, was born it was like I stepped

onto a roller coaster that never stopped. She was the most demanding,

complex, intense child I'd ever encountered! I teach preschool and I've

worked with special needs kids so I'd seen lots of kids. I know being the

mom adds a level of intensity, but even other people were kinda taken aback

with her. On one hand she was so sophisticated and " aware " (at 6 mos old

she'd observe the people in a room and then start imitating their laugh or

the rhythm of their speech) that other's would always comment on it; on the

other hand she was soooo challenging and demanding and difficult. And she

seemed to be obsessed with me, way beyond " bonding " . She still is, but not

in a pleasant way, more in a hyper focused sometimes hypercritical annoying

way.

It's better now that she's on Paxil and I've learned a lot and so has she.

Part of my struggle was letting go of an idealized vision of motherhood that

didn't match my reality. I'd think, okay, we'll bake cookies

together.......and Ava would turn it into a conflict about where we sat, how

the pan was placed, we had to sing songs - no, not like that!, look at this

mom, look at that, no this!..........

Getting her dressed in the morning was a nightmare, behavior management

didn't work (didn't improve behavior) it was like strife and struggle was a

ritual that had to preceed leaving the house. We couldn't even walk

together on the beach - " walk like this mommy, breath like that etc " . I'd

get frustrated and go back to the beach chair and then, as my dissapointment

subsided I'd beat myself up (what kind of a mom won't walk with her kid on

the beach, I've got to be more tolerant etc). I'd try doing everything

exactly as she wanted but it still wouldn't work. She didn't do this so

much with other people, just me. Your statement about living with your

daughter being the challenge of your life sure brought back a flood of

memories for me!

Not to say that even at the most difficult times she still wasn't amazing

and wonderful and fun too! See what I mean by complex?

Anyway, welcome to the list, glad you're here.

Dana in NC

Jay and Robin Tzucker wrote:

> From: Jay and Robin Tzucker <rjtzuckr@...>

>

> HI All,

> I'd like to introduce myself...my name is Robin and my husband has OCD

> (mild, now), our oldest daughter (12) was diagnosed with it in July and

> our seven year old son is now showing signs of the same extreme anxiety

> that has had all her life. No signs of ocd with him yet, but I'm

> afraid they may be coming.

>

> is more into " rituals " ...things like touching the last step

> before she goes into her room, or checking the burners on the stove,

> smelling fingers, etc. She also has always been very anxious (was

> diagnosed with severe separation anxiety when she was six) and told me

> once that she feels like there is a magnet inside of her that pulls her

> to me all the time (yes, that's how I feel too!! I once walked into six

> different rooms over a ten minute period, just to see if she would keep

> following me...and she did!).

>

> Living with her has been the challenge of my life. I have been trying to

> find a local support group, and failing at that am feeling extremely

> grateful that this list exists!! Thank you all for being there. I am

> looking forward to becoming part of this community.

>

> Robin

> Washington state

>

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

[Guest guest]

Dear (and others),

To answer some of your questions: who was diagnosed in July has

been on Paxil...she's up to 30 mg. per day and though we've seen some

reduction in her anxiety and OCD symptoms she is still struggling. Since

she only sees her psychiatrist every 4-5 weeks (for 30 minutes at a

time) it is slow going.

My husband is also on Paxil and rarely exhibits symptoms. This has been

very " hush hush " in our family and I finally decided about a month ago

that this was not how I wanted us to live. So we are trying to talk

about it a little bit more and not hide it...it makes me feel like

there's something wrong if we have to hide it.

For some reason I have lots more patience with my seven year old...with

I find I lose my patience quickly and often and the angrier I get

the worse she gets until we're both falling apart. Vicious cycle. I also

am having to learn to let go of the guilt and sadness and anger...this

is really hard.

I have to run now but already this list is providing me with 150% of the

support I need! Thank you all so much for just being there and sharing

stories...I may be a lurker but I value each and every note I get a

chance to read.

Robin

[Guest guest]

Hi Robin:

Steve also takes Paxil. Like most OCDers he did not find any effectiveness

against OCD until he had been taking a relatively high dosage (60 mg) for

about 12 weeks. Since young kids metabolize the SSRIs so efficiently they

usually take the same dosage as adults! There are a few lucky people who

find a good response at a low dosage but this seems to be a small minority

of OCDers.

The secrecy around mental illness is a challenge we all have to find a

" comfortable " place with. It is very hard when it is not something

discussed within the immediate family. There is still a lot of stigma

associated with OCD and keeping quiet about it is a very understandable

response.

Steve's first docs basically advised us to " out " him at school. Really

there was no option as he had crashed and burned so spectacularly at school

that his classmates thought he was dying of cancer as he had disappeared

from school for months. Now we do our best to teach Steve that he has

nothing to be ashamed of for having OCD and a lot to be proud of as he has

learned through CBT to control his OCD to a remarkable extent.

You are so right that anger is not a useful response to OCD symptoms. It

is however a very human response and one I have often found myself using.

One of the best early pieces of advice I got about managing Steve's

difficult OCD behaviors was to try to be calm. I think being an OCD mom

has improved my acting ability quite considerably <VBG>. I just act as if

I am calm and am a fly on the wall watching my behavior, if I lose it I

give myself permission to take an immediate time out.

The treatment that worked for Steve was at least 3, 3-hour CBT sessions

weekly at first for many months with his CBT therapist focusing primarily

on exposure and response prevention. He only sees his psychiatrist very

occasionally for a new prescription. When he was in active treatment he

would also see his psychologist about every 2 weeks so he could supervise

the work of the CBT therapist he trained to work with Steve. It took us

about a year to find the right people to form Steve's treatment team.

We have been very amazed at the extent of improvement possible against OCD.

There is so much reason for hope, you can get your life back. We were

given little reason to hope at first by Steve's docs and thanks to the

Internet we were able to learn a lot more and seek out the right kind of

help to put him on the path to an amazingly strong recovery. Good luck,

take care, aloha, Kathy (H)

kathyh@...

At 04:45 PM 01/23/2000 -0800, you wrote:

>From: Jay and Robin Tzucker <rjtzuckr@...>

>

>Dear (and others),

>To answer some of your questions: who was diagnosed in July has

>been on Paxil...she's up to 30 mg. per day and though we've seen some

>reduction in her anxiety and OCD symptoms she is still struggling. Since

>she only sees her psychiatrist every 4-5 weeks (for 30 minutes at a

>time) it is slow going.

>

>My husband is also on Paxil and rarely exhibits symptoms. This has been

>very " hush hush " in our family and I finally decided about a month ago

>that this was not how I wanted us to live. So we are trying to talk

>about it a little bit more and not hide it...it makes me feel like

>there's something wrong if we have to hide it.

>

>For some reason I have lots more patience with my seven year old...with

> I find I lose my patience quickly and often and the angrier I get

>the worse she gets until we're both falling apart. Vicious cycle. I also

>am having to learn to let go of the guilt and sadness and anger...this

>is really hard.

>

>I have to run now but already this list is providing me with 150% of the

>support I need! Thank you all so much for just being there and sharing

>stories...I may be a lurker but I value each and every note I get a

>chance to read.

>

>Robin

[Guest guest]

Dear Robin,

I really empathized with your post. I also have a hard time being patient

with Molly. The situation is worse because her dad has OCD (although he

won't admit it) and they are always battling. I lose my patience with both.

I have been working very hard on this. I often feel guilty after I have

lost my patience. Some of the things I have been doing which have helped:

When I know Molly and I need to discuss an issue that will make her

confrontational I spend time talking to myself. I walk through what to

expect and remind myself that I can be neutral and patient. I find that if

I have already looked at the scenario I have more self control. And because

I am calmer I can help Molly not go to the angry places and stay focused.

The other thing I do when I am approaching losing it is I put myself in time

out. I love time out. And everyone knows when I close that bedroom door to

leave me alone. This gives me the time to be angry, mumble and then calm

down.

Molly's therapist recently talked to all of us about how hard it is for Moms

and Dads to live with OCD. It was done in such a way that we all felt

better.

Hang in there and be good to you

patti r. in NH

[Guest guest]

Robin in WA state:

There were no support groups in my area either. I became active in my

local NAMI chapter -- there should be one of those near you -- and met some

other parents of children with mental illness. We started our own support

group, and continue to try and get the word out that we are here. You can

look for local NAMI groups on the web site -- www.nami.org.

Jule in Cleveland

[Guest guest]

Robin,

Our children really do sound similar (and we both have husbands w/OCD too

and hate to talk about it!). Ava and I sometimes get into situations that

escalate because of our mutual volatility and frustration and we would both

end up " falling apart " as you say. This doesn't happen much anymore but it

used to happen all the time. The one thing that really helped, as silly as

it may sound is this: when one of us realized that we weren't really

" arguing " or whatever about anything important, we were merely in a bad

groove and escalating, that person would say " let's go to sleep and wake up

and it will be a whole new day " . Then we would hold hands, close our eyes,

" sleep " for a minute, and wake up with a big smile and friendly greeting.

It really did diffuse things and save face if you found you were escalating

over nothing.

Dana in NC

Jay and Robin Tzucker wrote:

> From: Jay and Robin Tzucker <rjtzuckr@...>

>

> Dear (and others),

> To answer some of your questions: who was diagnosed in July has

> been on Paxil...she's up to 30 mg. per day and though we've seen some

> reduction in her anxiety and OCD symptoms she is still struggling. Since

> she only sees her psychiatrist every 4-5 weeks (for 30 minutes at a

> time) it is slow going.

>

> My husband is also on Paxil and rarely exhibits symptoms. This has been

> very " hush hush " in our family and I finally decided about a month ago

> that this was not how I wanted us to live. So we are trying to talk

> about it a little bit more and not hide it...it makes me feel like

> there's something wrong if we have to hide it.

>

> For some reason I have lots more patience with my seven year old...with

> I find I lose my patience quickly and often and the angrier I get

> the worse she gets until we're both falling apart. Vicious cycle. I also

> am having to learn to let go of the guilt and sadness and anger...this

> is really hard.

>

> I have to run now but already this list is providing me with 150% of the

> support I need! Thank you all so much for just being there and sharing

> stories...I may be a lurker but I value each and every note I get a

> chance to read.

>

> Robin

>

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

[Guest guest]

Charleen - I enjoyed reading all of the details about your boys. I have

two boys too. The oldest, Joe, has OCD and tics. The youngest 6, is just

beginning to tic in the last 6 months. I notice some similarities between

my 8 yr old and you 9 yr. old. Are his tics of the complex nature? They do

sound like they might be OCD. His writing letters over and over sounds

just like what my Joe was doing a year ago. There is some good ERP

techniques for that if it is indeed OCD. Eliz in WI

introduction

> From: Charleen.Bower@...

>

> Hi. I was just introduced to this list, and am so happy to have found it.

I

> wanted to introduce myself and my boys.

>

> is 12 years old. I believe he will be a stand-up comic when he

gets

> older. He is so funny. (He says that he would like to be a voice animator,

so

> he can do his routines, but not be seen. I think that's a great goal, as

long

> as he stays interested in it!) His current diagnoses are OCD, ODD and ADD,

non

> hyperactive type. Some of the various members on the treatment team have

also

> discussed possible diagnoses of Asperger's Syndrome, Bipolar disorder,

SID,

> and NLD (non verbal learning disorder). He has some tics, but they are

not

> severe enough for treatment according to his neurologist. Also, he can go

for

> a few months without them, and then the year rule must start over. He has

> difficulties in school, especially with Math and Spelling, and also with

> fitting in with other kids. He also has great struggles with organization,

I

> swear one day he'll lose himself, which is funny with the way he hoards,

and

> can tell if anything is missing. He is very literal, with very limited

> ability as far as imagination and play are concerned. In fact anything

that

> doesn't make sense to can trigger a rage attack as easily as a

change

> in routine. By the way, I love the HALT acronym, and can't wait to share

it

> with him. As he gets older, it is just starting to get to the point where

I

> can suggest something like that to him, or point out gently that he

appears

> frustrated to make him aware, without triggering a rage attack. Due to his

> ODD, he often needs to argue any point that anyone tries to make, even if

he

> knows what they are saying to be true. As his maturity kicks in, we can

often

> diffuse rages before they rise out of control, instead of the dark cloud

> hanging over us the entire day. He is more willing to talk about it, to

become

> aware of it, and to take responsibility for doing something about it, or

> asking for help. This leaves so much more time for me to just enjoy being

with

> him, which doesn't take away from how bad I feel looking back on those

times

> when I didn't think I could spend another minute in the room with him. I

thank

> God we have moved from mostly unpleasant with occasional good days, to

mostly

> pleasant with occasional rages. What a difference!

>

> Gavin is 9 years old. He is cute as a button, has a smile that can light

up

> any room, and a giggle that you can't help joining in with! He is also

very

> smart, and keeps me on my toes! His current diagnoses are Tourette's,

ADHD,

> and IED (Intermittent Explosive Disorder). Again team members have looked

at

> Bipolar, SID, Aspergers, anxiety (post traumatic stress from watching

> 's rages through the years, according to them). Since I have read

that

> OCD and Tourette's may be on a continuum, I understand how the boys can be

so

> different, yet bring to mind so many of the same diagnoses. Gavin has a

> remarkable imagination, which he uses as an escape when he is

uncomfortable.

> He wants to be a writer of children's book when he grows up, and he

certainly

> has the storytelling ability to do it. He just tunes the rest of the world

> out. He compartmentalizes feelings and emotions, making cause and effect

> difficult to understand. It is also interesting that he describes tics as

> feeling like the wormies, a feeling that he just has to get out, which

sounds

> just the way those with OCD describe compulsions. He also has a history of

> explosions (rage attacks) which can be triggered by almost anything. They

have

> significantly decreased at home as we have become more aware of triggers

and

> better able to identify a meltdown coming. We are still working on the

> behaviors at school, but have begun to make baby steps of progress.

> Handwriting is difficult, he

> will go over and over the same letter, his pencil grasp is weak, and he

gets

> very frustrated. Teachers are great, but don't always recognize a

melt-down on

> the way, and once he gets so far into it, there is no stopping it. Also,

> teachers seem to have a difficult time telling the difference between a

tic

> and disruptive behavior, so we just keep re-teaching the teachers. We are

> making progress, which is more obvious when comparing last year at this

time,

> to what's going on now.

>

> Sorry to be so long winded. I promise only my intro's get this long. I

look

> forward to learning and sharing with you.

>

> Charleen from town, Pennsylvania

> BLOOM WHERE YOU ARE PLANTED

>

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

[Guest guest]

Dear New Friends,

I am the parent of a 13 yr. old boy (in 7th grade) who has Non Verbal

Learning Disorder and OCD. The great increase in amount and complexity of

homework in Jr. High has led to the exacerbation of his OCD. We have finally

found a psychiatrist whom we feel we can trust (alas he is not " approved " by

our insurance group so we must pay out of pocket) and we have started our son

on Paxil. He has been on this med. for nearly two weeks, with no clear

result. We were told to expect that. We were told that it takes awhile for

the med. to start working, and his dose will probably have to be increased

anyway. I come to you on the recommendation of another NLD parent from the

NLD onelist site. My son's psych is on vacation now, but when he returns we

will begin to discuss treatment options. My sister sent me a book about

Cognitive Behavioral Therapy. It sounds promising. I am a BIG gabber ;-) so

I'll write more soon. I just wanted to let you all know I'm here. Thank you.

Elaine-D

[Guest guest]

welcome Elaine

Glad you joined the group! You are going to find it so useful! I have a 16

daugher w/ ocd. I do

relate to the " so much work to do in school "

Stay in touch and let us know how CBT works. It is great for my daughter. She

just started

Zoloft, and what a wonderful upbeat change!

Lori-CA

DnEBrock@... wrote:

> From: DnEBrock@...

>

> Dear New Friends,

>

> I am the parent of a 13 yr. old boy (in 7th grade) who has Non Verbal

> Learning Disorder and OCD. The great increase in amount and complexity of

> homework in Jr. High has led to the exacerbation of his OCD. We have finally

> found a psychiatrist whom we feel we can trust (alas he is not " approved " by

> our insurance group so we must pay out of pocket) and we have started our son

> on Paxil. He has been on this med. for nearly two weeks, with no clear

> result. We were told to expect that. We were told that it takes awhile for

> the med. to start working, and his dose will probably have to be increased

> anyway. I come to you on the recommendation of another NLD parent from the

> NLD onelist site. My son's psych is on vacation now, but when he returns we

> will begin to discuss treatment options. My sister sent me a book about

> Cognitive Behavioral Therapy. It sounds promising. I am a BIG gabber ;-) so

> I'll write more soon. I just wanted to let you all know I'm here. Thank you.

>

> Elaine-D

>

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[Guest guest]

Hi Elaine:

Welcome to the list. I also have a 13-year old son, Steve, who has OCD and

other alphabet soup, also in 7th grade. You certainly sound like you are

well on your way to getting the right kind of help for your son. There are

quite a few books on CBT and even one just for children and adolescents.

Getting adjusted to meds does take time and it takes quite a while to

determine whether the medication will be helpful for OCD. Looking forward

to reading more from you soon. Take care, aloha, Kathy (H)

kathyh@...

>>From: DnEBrock@...

>>

>>Dear New Friends,

>>

>> I am the parent of a 13 yr. old boy (in 7th grade) who has Non Verbal

>>Learning Disorder and OCD. The great increase in amount and complexity of

>>homework in Jr. High has led to the exacerbation of his OCD. We have

>finally

>>found a psychiatrist whom we feel we can trust (alas he is not " approved "

by

>>our insurance group so we must pay out of pocket) and we have started our

>son

>>on Paxil. He has been on this med. for nearly two weeks, with no clear

>>result. We were told to expect that. We were told that it takes awhile

for

>>the med. to start working, and his dose will probably have to be increased

>>anyway. I come to you on the recommendation of another NLD parent from the

>>NLD onelist site. My son's psych is on vacation now, but when he returns

we

>>will begin to discuss treatment options. My sister sent me a book about

>>Cognitive Behavioral Therapy. It sounds promising. I am a BIG gabber ;-)

>so

>>I'll write more soon. I just wanted to let you all know I'm here. Thank

>you.

>>

>>Elaine-D

[Guest guest]

Glad you are here ] this is a good place to find info and to just let it

all out and know that there are other people in your fight with you and wont

leave ya ] I have Autoimmune Hepatitis and sorta sounds like what happed

to me when I found out 9 months ago a small leaflet and send me on my way

with high dose of prednisone and left me clueless and if it was for a nether

support group I found I would be lost still. I to cant under stand why the

Doc`s put us on a drug that hurts us more and says it helps you tho. Yeah

right have they ever been on the pills them selves of a long period of time

like us? Not!! I this pass few days have really gotten a realty check with

my self. I went to my local family doc for pain pill my liver doc wont deal

with the pain that I ma having when he is dropping me down off my pred. But

my local doc and I was trying to find something that I could take for my

pain and she said something to me that I have been thinking about for the

past few days that really put me in a realty check. She said " People like

you how have a Chronic Illness will have a lot of pain and got to find the

right stuff for you to take " what hit me hard was the " Chronic Illness "

part. Never saw my self with having a Chronic illness just looked at as a

illness and they are two different things. so been under this gray cloud

these pass few days about it but. We all have days and that's why we join

these group to talk to others who are or have been on the road that we all

are on and from what I have seen the past few months is the road is getting

more busy and we are not alone.

So Welcome again and looking forward to getting to know you ]

(the lurker ) lol ]

Introduction

From: " k adams " <mwa@...>

Thankyou Aisha for welcoming me to the group. I hope I am not being

redundant because I have signed up for a bunch of the groups at this

site. Thankyou for setting this site up it is great. As I just

became literate about a month ago about getting around on the

internet, (And I wouldn't exactly say I am literate), this is the

first place that I have actually been able to talk with others and

get info on my disease. At latest diagnosis I was told I have

microscopic vasculitis. I need to clarify that with dr again. I am

still fairly ignorant about my disease. I just found out that there

are actually about10 or so different kinds of the disease. I found

this through the JOHN HOPKINS SITE. Before this I wasn't even so

sure I had a disease as I was told by some primary drs that

vasculitis is just a condition of other diseases and not a disease in

itself so I have been pretty confused myself. People will say pan or

wegners.

My disease started about 3 yrs ago. At first my symptoms were mainly

joint pain, fevers, just feeling generally crappy. I was told that I

probably just had a virus or something. I was put on about 8

different antibiotics. My symptoms just didn't go away. My dr at

the time was reluctant to send me to a rheumotologist ( I was on hmo

at the time i am convinced now that is why). She finally sent me to

pulmonologist when I started to have blood tinged sputum. He did

bronchoscopy and found a couple of places where i had been bleeding

from but said " he did not find what he was looking for " . I went to a

rheumotologist who put me on prednisone. He gave me phamplet on

wegeners and Pan was very casual about the fact that I had anything.

acted like it was no big deal told me that more and more people are

being diagnosed with this. I was fine till he tapered me off of it

and then my smyptoms came back, so he put me on another round of it

and same thing happened, but when I went back to him to tell him my

symptoms had come back. He more or less told me to just take hot

baths. When I became emotional because it was getting really

difficult to work and keep my life together he said I just needed to

get off the prednisone that it was making me emotional. I left there

feeling like maybe I was just being a big baby or a hypochondric or

something. I spent about 3 month just trying to survive on Nuprin

until I couldn't take it anymore.

I finally found another rheumotologist. His reaction was so

different he put me on prednisone and methotrexate and this seem to

do the trick for awhile although I was still having alot of joint

pain but I was able to function somewhat better. Then after about a

year of being on that everything seemed to flair up I started to

couph up a lot of blood, I was getting short of breath, I started to

bleed from bowels had blood in urine and started to break out with

spots all over hands and feet. I ended up in bed for 2 weeks and

symptoms just kept getting worse. I wound Up in the hospital for 2

weeks last year. I had to be put on oxygen because lungs filled up

with blood and I had to have a blood transfusion. They started me on

Iv cytoxan and prednisone. Was on pred for 6mo and getting monthly

cytoxan. As soon as I got off pred and they reduced cytoxan to every

3 mo symptoms returned. So at present I am getting daily cytoxan

150mg daily and symptoms have calmed down quite a bit. But I will

have flare ups on and off where I just have to go to bed for 3 to4

days at a time. Then it calms down again. So that is where I am at

now.

Besides that and when I am feeling somewhat normal I love to garden,

needle point and just enjoy life. I have a supportive husband and

two great kids. A daughter 14 and a son 10. I am looking forward to

the day this disease decides to go away. But, I am also trying to

accept the fact that is may never go away and that I will have to

learn to deal with feeling like I am 95 when I am only 40. I also am

trying not to get depressed about the fact that these drugs could

give me cancer down the road. The treatment is almost as bad as the

disease itself. Anyway I hope I have not put you all to sleep with

my rambling on. Its just that this is the first time I have found a

place to really vent and share. I look forward to hearing from you

all Thanks Kellie I hope I didn't send out two posts I think I lost

the first one so I had to retype I didn't see it on the posting I

think I lost it when I hit the wrong button. But if I sent two I

apologize.

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[Guest guest]

Ian and all ...........

Same here, quick intro;

Name: Tim Cranton

History: Ex Army CMT 1, REMT-P, Dive Medic, Offshore Medic

Employed: Medic / R/O on Arco (soon to be BP? or highest bidder) Thames Alpha

Platform Southern North Sea. Employed by KYE Ltd on contract to Arco.

Interests: Pre-Hosp Care and Resus Training.

Email: tcranto@... or tcranto@...

Regards TC+

" " <alex.shannon@...> on 22/03/2000 10:46:51

Please respond to onelist

onelist

cc: (bcc: Tim Cranton/ABL/AIOGC/ARCO)

Subject: [] Introduction

From: " " <alex.shannon@...>

Ian and all,

Quick intro, some know me - some don't.

Name:

History: Ex Army CMT 1

Now: HSE Medic / Occupational Health and Safety Consultant

Curently employed by OMSI ( www.northseamedical.co.uk ) in Great

Yarmouth, and contracted to BP Amoco in Algeria.

Interests: Diving medicine, Remote Location, HS & E

Regards

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[Guest guest]

Hello Ian,

My name is Liam McNamee, I'm an ex Royal Naval Medic having

spent nearly 13 years on various ships, I spent 2 years as a dedicated

SAR Medic at a Naval Air Station in Scotland and also spent 2 years

with the Royal Marines. I'm working offshore at present on a large

diving vessel called Alliance although I'm only standing in for

someone, my permanent ship is the Seawell. Both vessels are run by

Coflexip Stena Offshore. I would be obliged if you would keep me

updated at my home email address which is liam102@..., look

forward to hearing from you.

cheers

Liam