Hi - I'm new

[Guest guest]

WECOME!!

I'm "fortunate" that I only have dystonia in my neck (cervical). I too got the runaround, until I found my wonderful neuro. I saw her today and she said that my neck is the same. She asked me again about Botox and mentioned the new Myobloc. I told her that the injections have never helped my pain or exhaustion. I can deal with the movement but the other 2 are what drag me down.

Lee

"mrs. claws" <mrsclaws@...> wrote:

my name is mrs. claws (long story we will reserve for another day), and i'm brand new to this group. 3 1/2 years ago i got what i thought was the flu until the muscle spasms started, and i knew something was wrong. i was bounced around from one dr. to another, all who basically chalked me up to an hyterical female. one even told me to get over it and stop being a baby. that was the last time i saw him. i have been diagnosed with lupus and generalized dystonia, meaning i have darned disease from head to toe. each and every medication has caused terrible side effects,so i went off all medications 6 weeks ago with the dr's help in hopes that it would give us all a better picture of what was happening to my body. besides, i was such a chemical cocktail that i literally lost 6 months of my life. unfortunately, i recently started on-going full body muscle spasms that come every 20 minutes. last thurs. my neurologist started me on a new medicine called cogentin. within 3 days i have started hallucinating again, and feel like a zombie. to say i'm discouraged after 3 years of false hope doesn't come close to what i feel. i then realized that i needed contact with people who were suffering from the same thing as i was.does anyone else in the group suffer from generalized dystonia? if so, have you found anything that helps? so far the only thing i have ever been given was intravenus benydryl (in several er rooms where my chest and neck muscles were so spasmodic i couldn't breath) but for some reason they won't consider this an option for home treatment. i live in ohio, 20 minutes away from the cleveland clinic and university hospital, where some of the finest physicians gather to bill me, but i am getting worse, and not better. if i'm fighting an uphill battle that i have no chance if winning, i would rather be told that so that i can make the necessary plans and adjustments. my husband is able to support us, but the medical and pharmacy bills can their toll, which i'm sure is no surprise to any of you. no-one has ever mentioned disability, even though i spend most of my time to woosy to recognize my own children, and contorted into shapes that i should be charging admnission to view! i'm so"buff" that my family has recommended me joining the WWF, but i can't find enough purple satin spandex for the costume, and i'm not going in the ring in anything other than purple spandex. thank God that my sense of humor still works, but i have hit a plateau in the hope department.thankx for letting me vent. - mrs.claws

[Guest guest]

dear lee -

the cervical dystonia is the pits! it causes such headaches. i found

that using a neckbrace a few hours a day helps tremendously. my

neurologist was impressed with my husband's ingenuity (it was his idea)

and i'm finally off the pain killers for the first time in months. i

know what you mean by the pain and exhaustion. i drag myself around

(literally and figuratively in my case LOL) during the day, and even

vitamins don't help. but- like i said - drs say that living with

constant pain can cause all sorts of fun problems. fondly -- mrs. claws

l harris wrote:

>

>

>

> WECOME!!

>

> I'm " fortunate " that I only have dystonia in my neck (cervical). I too

> got the runaround, until I found my wonderful neuro. I saw her today

> and she said that my neck is the same. She asked me again about Botox

> and mentioned the new Myobloc. I told her that the injections have

> never helped my pain or exhaustion. I can deal with the movement but

> the other 2 are what drag me down.

>

> Lee

>

the only thing better than a house full of cats is a houseful of cats

and chocolate!

mrsclaws@...

http://www.angelfire.com/art/mrsclaws

http://www.angelfire.com/art/mrsclaws/hope.html

[Guest guest]

I'm sure that the doctors have difficulty dealing with us patients too. We are all so different.I don't have headaches but I get severe pain in my right shoulder, wrist, hand and hip. The neuro said that the neck movements cause a nerve to get pinched. Yucko! I do have a neck brace but it only seems to help with driving. Lee

Jan Spafford <mrsclaws@...> wrote:

the cervical dystonia is the pits! it causes such headaches. i foundthat using a neckbrace a few hours a day helps tremendously. myneurologist was impressed with my husband's ingenuity (it was his idea)and i'm finally off the pain killers for the first time in months. iknow what you mean by the pain and exhaustion. i drag myself around(literally and figuratively in my case LOL) during the day, and evenvitamins don't help. but- like i said - drs say that living withconstant pain can cause all sorts of fun problems.

[Guest guest]

Welcome Mrs Claws, you are going to love all of us

#4 (chelle)

[Guest guest]

Hi!

Welcome to the list!

I took my son to see a neuro at the Cleveland Clinic...I think he only does

peds, though. Wonderful doctor. :-)

I'm glad you found us....I hope you come to like it here as much as I do. :-)

*hugs*

" mrs. claws " wrote:

> my name is mrs. claws (long story we will reserve for another day),

> and i'm brand new to this group. 3 1/2 years ago i got what i thought

> was the flu until the muscle spasms started, and i knew something was

> wrong. i was bounced around from one dr. to another, all who

> basically chalked me up to an hyterical female. one even told me to

> get over it and stop being a baby. that was the last time i saw him.

> i have been diagnosed with lupus and generalized dystonia, meaning i

> have darned disease from head to toe. each and every medication has

> caused terrible side effects,so i went off all medications 6 weeks ago

> with the dr's help in hopes that it would give us all a better picture

> of what was happening to my body. besides, i was such a chemical

> cocktail that i literally lost 6 months of my life. unfortunately, i

> recently started on-going full body muscle spasms that come every 20

> minutes. last thurs. my neurologist started me on a new medicine

> called cogentin. within 3 days i have started hallucinating again, and

> feel like a zombie. to say i'm discouraged after 3 years of false

> hope doesn't come close to what i feel. i then realized that i needed

> contact with people who were suffering from the same thing as i was.

> does anyone else in the group suffer from generalized dystonia? if

> so, have you found anything that helps? so far the only thing i have

> ever been given was intravenus benydryl (in several er rooms where my

> chest and neck muscles were so spasmodic i couldn't breath) but for

> some reason they won't consider this an option for home treatment. i

> live in ohio, 20 minutes away from the cleveland clinic and university

> hospital, where some of the finest physicians gather to bill me, but i

> am getting worse, and not better. if i'm fighting an uphill battle

> that i have no chance if winning, i would rather be told that so that

> i can make the necessary plans and adjustments. my husband is able to

> support us, but the medical and pharmacy bills can their toll, which

> i'm sure is no surprise to any of you. no-one has ever mentioned

> disability, even though i spend most of my time to woosy to recognize

> my own children, and contorted into shapes that i should be charging

> admnission to view! i'm so " buff " that my family has recommended me

> joining the WWF, but i can't find enough purple satin spandex for the

> costume, and i'm not going in the ring in anything other than purple

> spandex. thank God that my sense of humor still works, but i have hit

> a plateau in the hope department.

> thankx for letting me vent. - mrs.claws

>

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>

>

[Guest guest]

Hi Terry, and welcome!

You'll find lots of info and support in this group. It has been the best thing I've discovered in the four or five years we have been fighting the OCD battle.

You're right that CBT is the best thing for treating OCD, and I'm sure someone will come up with a good resource for you to check. I do know though, that there is an anxiety disorders clinic in Philadelphia or nearby, and that Dr. Chansky practices there. I discovered this after I moved to Reno NV from Philadelphia, where we had no help getting a dianosis! And I'm sure there are some good therapists even closer to you if you can just find them. If you join the OC Foundation (it's on the web) you can get a list of therapists in your area from them, as well as lots of good materials which you can share with the school.

Good luck to your family and Ben!

, mother of Annie (almost 9 with OCD) and BEN (5 1/2, so far so good)

[Guest guest]

Hi Terry,

I hope you find a CBT experienced therapist in your area. I'm

somewhat new to this list as well and it has helped me to finally get

a handle on what I'm dealing with, and to realize how difficult it

is. Before, I kept getting a bit down on myself for not handling

everything, and was trying to deal with feeling drained without being

able to give a reason for it in concrete terms.

My 13 yr old and 9yr old have been anxious for years but it never

presented enough of a problem for me to identify it, in part because

we were homeschooling so there was less stress, and I did not have to

answer to anyone for their behaviors so just kind of ignored it, bore

with it, or accepted it as quirky. I also have some concerns about my

4 yr old at this point. I have a 7 yr old totally unaffected, and A 2

yr old dare-devil unaffected as far as I can tell at this age(the

affected children were more timid/sensitive since infancy).

Since our last move both girls got depressed, more moody and

irritable, stuck in routines, hiding out, uncharacteristically

aggressive or loud, panicky etc. Then when I started reading up I was

able to recognize some symptoms. Anyway, I feared for their futures

because I have siblings who are debilitated by anxiety. I know what

you mean about wondering if the therapist really knows enough about

ocd, it is hard to explain when the symptoms can be so variable. My

oldest daughter is in private school now and had a hard time last

year (her first year) with no one knowing what was wrong, and with me

fearing the teachers thought I had created the problem in

homeschooling. However, since she earned honors repeatedly, is well-

read (already knew all the history and lit they studied)can be

articulate when not anxious, they came to understand it was not a

learning problem, but an anxiety problem. This year I hope to be

better prepared, though right now, since she seems to have developed

BDD w/social phobia, I find it hard to visualize her handling school.

I hope the therapist can help get us on track before then.

There is a helpful website that has a section that I am going to

print out for teachers if it becomes necessary ( I still wonder about

the preconception the teacher may get if introduced to a child with

a " label " so I may not use it off the bat with my 13 yr old's new

homeroom teacher).

Anyway the website is " Obsessive Compulsive Foundation "

(www.ocfoundation.org). If you click on the left column " OCD in

Children " there is an article about how ocd affects schooling and

daily schedules. You may find it helpful to hand out to teachers, or

to keep in your son's file.

Grace

> Hi Everyone,

> My name is Terry and my husband, Bill, and I have two boys - Ben (6

> yo) and Sam (3 yo). Ben was diagnosed with OCD back in March, but

it

> really wasn't until the last couple of weeks that Bill and I have

> begun to understand what it was all about (didn't someone mention

the

> word " muddled " in one of the recent posts? That's the perfect word

> for us lately....).

>

> A little about Ben. He's extremely inquisitive, talkative and

> outgoing. Nine times out of ten, he'll be the one to initiate a

> conversation with a complete stranger rather than vice versa. He is

> much higher on the obsessions and fairly low on compulsions (he has

> to ask me questions about his fears for reassurance - on a moderate

> day, before meds were started, I counted an average of 40

> questions/hour). Many of his fears center around the things you

> childproof your house for - outlets (being electrocuted), plastic

> bags (suffocating) and household cleaners (being poisoned). These

> fleshed out into being near or breathing near outlets, absolutely

> anything made out of plastic, and feelings like anything that went

> into his mouth might be poisoned - including his saliva. Hence,

> shirts soaked with spit when he got off the school bus.

>

> I feel like we are at a crossroads, or approaching one - and just

> don't yet know what our options are. We live about one hour north

of

> Albany NY, Ben's been in therapy for about two months now, and I

had

> to find out about CBT through Dr. Chansky's book - although Ben's

> therapist has hit it off quite well with Ben and he genuinely cares

> about his patients - he's not trained in CBT and we're not sure

> anyone in the area is....my first question - does anyone know of

> anyone in the Albany NY area who is trained in CBT? And, if not,

what

> might our options be? I have used some of the suggestions in Dr.

> Chansky's book and feel that we've made more progress in two weeks

> than in the 8 weeks of therapy. Ben (and we) feel empowered to make

a

> difference. I told Ben's counselor what I was doing and he was a

> little wary of it, though open to hearing me out too, and I told

him

> I did it because we had told everyone involved that not only did

Ben

> need help, but so did we - in learning how to work with Ben on a

day

> to day, hour to hour, minute-to-minute basis - and noone offered us

> any assistance. I told him that we couldn't keep living week-to-

week

> just waiting till our next visit with him.

>

> Anyway, we've got lots of questions spinning in our heads and I'm

so

> glad you all are here and thanks for letting me be a part of the

> group. Has anyone in the group done therapy long distance? I'm

lucky

> enough to be at home full-time and am not beyond driving to NYC or

> Philly (we have family there) once a week if necessary.

>

> Oh, one final thing about Ben - he was started on a very low dosage

> of Paxil (2.5 mg) and within 3 days, OC behavior and anxiety were

way

> down and he was hallucinating and had aggressive side effects which

> seemed to surprise him as much as me. He is now on 37.5 mg of

Zoloft

> with moderate results and side effects.

>

> Ok - one more thing (I told you I had lots of questions...) I, too,

> am very anxious about school starting up again. I sometimes think

> that summer break has been as resposible for his drop in OC

behavior

> as the meds (maybe I'm wrong - they happened at the same time). We

> are blessed with a terrific school with folks who really reached

out

> to Ben when he was struggling with his fears in school. His K

teacher

> chose his first grade teacher for the primary reason that she

thinks

> that Miss Maine will be the most supportive and helpful to Ben. The

> school psychologist checked in with Ben frequently and even the

nurse

> was prepared for him when he came down to see her for anxiety

induced

> stomach aches. So we have lots of support, but I don't think they

> know any more than I did about OCD. Any materials out there that

you

> would suggest that I could give to his teacher that might help her

> work with him?

>

> I apologise if I have asked any questions that have been previously

> answered in other posts - I went back as far as I was able - in the

> time I have, but I've been anxious to say hi and become involved

too.

>

> Thanks again for any help!

> Terry

[Guest guest]

Hi Terry!

Welcome to the group. And, a big welcome to any other newbies!

I'm Joni, mom of (20 TODAY), (18 w/ ADHD+mild OCD) and

(10, OCD). I'm also the sister of a sis with bipolar, and to

be honest with you, I'd take a bipolar diagnosis over an OCD one

anyday! Lithium for my sister was truly a 'quick fix.' All other

SSRIs (before she was properly diagnosed) had adverse reactions--

sending her symptoms spinning out of control. With one little pill,

and NO therapy, she's back to her normal self. Yet, with OCD, it's a

little more complicated. New symptoms appear and the old ones

disappear - leaving you and your child playing 'whack-a-mole' with

OCD symptoms (LOL thanks Kathy). And, then ... there's ERP therapy

to make them confront the fears that they keep avoiding.

Another thing I've learned here is that it's extremely important to

WALK AWAY from the OCDer when they start asking you reassurance

questions. I got caught up in that nightmare for a few months and

the more I answered (enabled) my son , " No, you're not going to

throw up, or be poisoned, or get diabetes.... " -- sometimes 50 times

a day --- the worse his symptoms got. I've now learned to say " I'll

answer OCD ONE time and no more. After that, you need to be strong

and boss it back. Ok...I'm going for a walk now. " If we pour alot

of attention into these fears, it only gives them strength--- and

drains us, the parents. It also sends the unspoken message to our

OCDers that we're easily bossed around and controlled by OCD too. If

*we* can't boss it back or send it away, how do they learn to do it

themselves? I've had to learn to MODEL the 'boss back' technique to

my youngest son, whose disorder has been the saddest, most mind-

boggling thing I've ever experienced!

Don't blame yourself. OCD is genetic -- it's NOT your fault. I read

somewhere (an OCD book) that even an ABUSIVE parent can't cause OCD

in their children. Bad parenting doesn't help their anxiety

disorder, but it certainly doesn't cause it.

And, get used to (if you haven't already) to your child having a HALO

on his/her head around other people. I think this is typical of kids

anyway, regardless of any disorder. I used to babysit children in

between jobs one summer, and it never failed, once Mom and Dad showed

up at the door, WHAAAAAAAAAAAAAAA. They became little monsters.

You'll find lots of support and help here. I sure have!

Welcome!

Joni

> Hi Everyone,

> My name is Terry and my husband, Bill, and I have two boys - Ben (6

> yo) and Sam (3 yo). Ben was diagnosed with OCD back in March,

[Guest guest]

Hi Joni!

Wow! This is EXACTLY what we're going through! I would be so drained

and exasperated by the end of the day by Ben's repeated and seemingly

rediculous questioning that I'd finally turn on him and say " Just go

away! I can not answer any more questions. You KNOW the answers - why

don't you just STOOOOOOOP!!!!!!! " I likened it to the Chinese water

torture. That's why I was so desperate to get help for _us_ as well

as Ben - I wasn't handling it well and didn't know what to do - do I

be the comforting, reassuring parent and work on alleviating (and

enabling) the fear and anxiety; or do I refuse to answer and " go

along " with the ritual but risk alienating my son and leaving him

feeling all alone with his illness. It wasn't until reading " The Boy

Who Couln't Stop Washing " by Judith Rappaport (and crying for three

days) that I was truely able to understand Ben's perspective and the

torment that was going on in his head. And then reading Dr. Chansky's

book to learn how to work with Ben, refuse to talk to the OCD, but

also let him know that we understood and were totally on his side.

That's why I am so eager to get him into CBT - he bought into it

right away and the walls that were forming between us as we all

flopped around feeling out of control and the alienation that I was

causing all went away. I saw such a huge weight lifted from his

little shoulders when I told him that I finally understood what he

was going through and that I wasn't going to be angry with him any

more and that we were going to boss the OCD away together.

So far so good, but we need professional guidance - and I feel that

we are lucky to be catching the OCD early and before the time

consuming rituals begin - something that I think must be enormously

difficult to deal with. The other benefit to the CBT that I've found

is that when Ben began to make some passing comments about germs and

feeling like he had germs on his hands and wanting to wash his hands,

I was able to talk with him about fears of germs being one of the

biggest tricks that OCD plays on kids and he totally got it! I'm not

saying that he won't still struggle with the feeling or that it won't

come back to haunt him later, but the light went on when I said that

and he said " oh! It's the OCD " and, at this point, it seems that we

may have nipped that one in the bud for the time being.

Also, keeping Ben VERY busy has helped a lot too. We've spent the

summer exploring the area, hiking, swimming, camping, bike riding,

traveling..... I'm pooped.

I'm sure I'll be needing advice/support/objectivity from you in the

future - thanks Joni!

Terry

I got caught up in that nightmare for a few months and

> the more I answered (enabled) my son , " No, you're not going

to

> throw up, or be poisoned, or get diabetes.... " -- sometimes 50

times

> a day --- the worse his symptoms got. I've now learned to

say " I'll

> answer OCD ONE time and no more. After that, you need to be strong

> and boss it back. Ok...I'm going for a walk now. " If we pour alot

> of attention into these fears, it only gives them strength--- and

> drains us, the parents. It also sends the unspoken message to our

> OCDers that we're easily bossed around and controlled by OCD too.

If

> *we* can't boss it back or send it away, how do they learn to do it

> themselves? I've had to learn to MODEL the 'boss back' technique

to

> my youngest son, whose disorder has been the saddest, most mind-

> boggling thing I've ever experienced!

>

[Guest guest]

Hi, Terry!

Welcome to the group! You sound as if you have made some significant

headway...far faster than we did! If you don't think your therepist

is going to pursue CBT and is not interested in learning it, I would

start looking around. Unfortunately, I am from Dallas, so I can't

help you there (if fact we have started with a new doc, but are still

looking in case this one doesn't pan out). I am glad you are

starting therapy at home...you are right, waiting between

appointments seems a waste of time.

Severl publications for Ben's teachers:

Teaching the Tiger (sorry, I don't know the author) is supposed to be

great for educators

Also, Dr Gail (who was a presenter at the Denver conference)has

a booklet ($3.50) Called " School Personnel " . I am going to order

several copies for 's teachers. Her address is:

Dr. Gail

3N374 Limberi Lane

St. , IL 60175

She also generously offers to answer questions via e-mail:

GB@...

Hope this helps!

Melinda S.

Dallas

> Hi Everyone,

> My name is Terry and my husband, Bill, and I have two boys - Ben (6

> yo) and Sam (3 yo). Ben was diagnosed with OCD back in March, but

it

> really wasn't until the last couple of weeks that Bill and I have

> begun to understand what it was all about (didn't someone mention

the

> word " muddled " in one of the recent posts? That's the perfect word

> for us lately....).

>

> A little about Ben. He's extremely inquisitive, talkative and

> outgoing. Nine times out of ten, he'll be the one to initiate a

> conversation with a complete stranger rather than vice versa. He is

> much higher on the obsessions and fairly low on compulsions (he has

> to ask me questions about his fears for reassurance - on a moderate

> day, before meds were started, I counted an average of 40

> questions/hour). Many of his fears center around the things you

> childproof your house for - outlets (being electrocuted), plastic

> bags (suffocating) and household cleaners (being poisoned). These

> fleshed out into being near or breathing near outlets, absolutely

> anything made out of plastic, and feelings like anything that went

> into his mouth might be poisoned - including his saliva. Hence,

> shirts soaked with spit when he got off the school bus.

>

> I feel like we are at a crossroads, or approaching one - and just

> don't yet know what our options are. We live about one hour north

of

> Albany NY, Ben's been in therapy for about two months now, and I

had

> to find out about CBT through Dr. Chansky's book - although Ben's

> therapist has hit it off quite well with Ben and he genuinely cares

> about his patients - he's not trained in CBT and we're not sure

> anyone in the area is....my first question - does anyone know of

> anyone in the Albany NY area who is trained in CBT? And, if not,

what

> might our options be? I have used some of the suggestions in Dr.

> Chansky's book and feel that we've made more progress in two weeks

> than in the 8 weeks of therapy. Ben (and we) feel empowered to make

a

> difference. I told Ben's counselor what I was doing and he was a

> little wary of it, though open to hearing me out too, and I told

him

> I did it because we had told everyone involved that not only did

Ben

> need help, but so did we - in learning how to work with Ben on a

day

> to day, hour to hour, minute-to-minute basis - and noone offered us

> any assistance. I told him that we couldn't keep living week-to-

week

> just waiting till our next visit with him.

>

> Anyway, we've got lots of questions spinning in our heads and I'm

so

> glad you all are here and thanks for letting me be a part of the

> group. Has anyone in the group done therapy long distance? I'm

lucky

> enough to be at home full-time and am not beyond driving to NYC or

> Philly (we have family there) once a week if necessary.

>

> Oh, one final thing about Ben - he was started on a very low dosage

> of Paxil (2.5 mg) and within 3 days, OC behavior and anxiety were

way

> down and he was hallucinating and had aggressive side effects which

> seemed to surprise him as much as me. He is now on 37.5 mg of

Zoloft

> with moderate results and side effects.

>

> Ok - one more thing (I told you I had lots of questions...) I, too,

> am very anxious about school starting up again. I sometimes think

> that summer break has been as resposible for his drop in OC

behavior

> as the meds (maybe I'm wrong - they happened at the same time). We

> are blessed with a terrific school with folks who really reached

out

> to Ben when he was struggling with his fears in school. His K

teacher

> chose his first grade teacher for the primary reason that she

thinks

> that Miss Maine will be the most supportive and helpful to Ben. The

> school psychologist checked in with Ben frequently and even the

nurse

> was prepared for him when he came down to see her for anxiety

induced

> stomach aches. So we have lots of support, but I don't think they

> know any more than I did about OCD. Any materials out there that

you

> would suggest that I could give to his teacher that might help her

> work with him?

>

> I apologise if I have asked any questions that have been previously

> answered in other posts - I went back as far as I was able - in the

> time I have, but I've been anxious to say hi and become involved

too.

>

> Thanks again for any help!

> Terry

[Guest guest]

Hi, Terry!

I loved your analogy of the Chinese water torture! LOL LOL That is

exactly what it is. My 15 yo also is a reassurance seeker.

He suffers from a form of scrupulosity called hyperresponsibility,

but the biggest problem right now is his compulsive exercising. He

is always asking " have I done enough? " " Did I do the right

number? " " Was that 6, Mom? Was that 6??? " UGH!! I am still having

problems dealing with my frustration and anger. (He seems to come to

ME instead of my husband...lucky me) I usually give my stock

answer, " Asked and answered " . Eventually, I have had to lock myself

in my room or leave...he is just that persistant. I am glad you have

starting working with Ben at an early age...let me tell you, working

with an adolescent is no day at the beach. Out of desparation, we

are starting a " star chart " ! Can you believe it? I thought those

days were over!

Anyway, hang in there. I figure with the Chinese water torture,

sooner or later, they have to run out of water, right?

Melinda S.

Dallas

> I got caught up in that nightmare for a few months and

> > the more I answered (enabled) my son , " No, you're not going

> to

> > throw up, or be poisoned, or get diabetes.... " -- sometimes 50

> times

> > a day --- the worse his symptoms got. I've now learned to

> say " I'll

> > answer OCD ONE time and no more. After that, you need to be

strong

> > and boss it back. Ok...I'm going for a walk now. " If we pour

alot

> > of attention into these fears, it only gives them strength--- and

> > drains us, the parents. It also sends the unspoken message to

our

> > OCDers that we're easily bossed around and controlled by OCD

too.

> If

> > *we* can't boss it back or send it away, how do they learn to do

it

> > themselves? I've had to learn to MODEL the 'boss back' technique

> to

> > my youngest son, whose disorder has been the saddest, most mind-

> > boggling thing I've ever experienced!

> >

[Guest guest]

Welcome Terry:

You came to the right place for information and support; I don't know how I would cope if I didn't have this group. I took me three years to find it -- so you're doing great. The next book you need is: "Obsessive-Compulsive Disorder in Children and Adolescents" by March and Mulle. It is a manual on how to do CBT. Great book. Some on the list call it their second bible.

My son, , was diagnosed with OCD at 6 (now 9) and was constantly spitting to get rid of the contamination from whatever. His shirts would be soaked by the end of the day. Unfortunately he did not have an understanding teacher. Spitting wasn't allowed in school no matter what. She knew about 's disorder and I gave her every bit of information I had, but she either didn't care or didn't want to bother with it. She wanted a "normal" classroom.

does better at school than at home with his OCD. OCD seems to be primarily at home. Of course, there are things at school the OCD bothers him about but he controls it to some degree. I found he comes home and kinda of melts down or releases all of his pent up OCD. Not fun, but he knows he's in a safe environment.

I live in Omaha, Nebraska, and I too have a difficult time finding a therapist who knows CBT. We do have one who is CBT certified but I have to push her to follow the protocol. Next year you need to go to the OCF Conference; you'll learn a lot and meet a lot of these wonderful people on the list -- and next year it's in Philly!! One thing I would like to see at the conference next year is a session for those who are in rural areas or places w/o CBT therapists on how to do CBT and still be the supporter, parent, and disciplinarian all at the same time. I too am at home during the day and have found it to help a lot (and me too). I have time to read up on OCD, volunteer at school, and have some me time before summer begins.

Oh, don't worry about being long winded -- that's what we're here for, to listen and give support.

Welcome again. Hope to "talk" to you again soon. You're looking in all the right places for help, give yourself a pat on the back, you deserve it.

Tamra

(ocdmom2001)

Omaha, NE

Hi - I'm New

Hi Everyone,My name is Terry and my husband, Bill, and I have two boys - Ben (6 yo) and Sam (3 yo). Ben was diagnosed with OCD back in March, but it really wasn't until the last couple of weeks that Bill and I have begun to understand what it was all about (didn't someone mention the word "muddled" in one of the recent posts? That's the perfect word for us lately....). A little about Ben. He's extremely inquisitive, talkative and outgoing. Nine times out of ten, he'll be the one to initiate a conversation with a complete stranger rather than vice versa. He is much higher on the obsessions and fairly low on compulsions (he has to ask me questions about his fears for reassurance - on a moderate day, before meds were started, I counted an average of 40 questions/hour). Many of his fears center around the things you childproof your house for - outlets (being electrocuted), plastic bags (suffocating) and household cleaners (being poisoned). These fleshed out into being near or breathing near outlets, absolutely anything made out of plastic, and feelings like anything that went into his mouth might be poisoned - including his saliva. Hence, shirts soaked with spit when he got off the school bus.I feel like we are at a crossroads, or approaching one - and just don't yet know what our options are. We live about one hour north of Albany NY, Ben's been in therapy for about two months now, and I had to find out about CBT through Dr. Chansky's book - although Ben's therapist has hit it off quite well with Ben and he genuinely cares about his patients - he's not trained in CBT and we're not sure anyone in the area is....my first question - does anyone know of anyone in the Albany NY area who is trained in CBT? And, if not, what might our options be? I have used some of the suggestions in Dr. Chansky's book and feel that we've made more progress in two weeks than in the 8 weeks of therapy. Ben (and we) feel empowered to make a difference. I told Ben's counselor what I was doing and he was a little wary of it, though open to hearing me out too, and I told him I did it because we had told everyone involved that not only did Ben need help, but so did we - in learning how to work with Ben on a day to day, hour to hour, minute-to-minute basis - and noone offered us any assistance. I told him that we couldn't keep living week-to-week just waiting till our next visit with him.Anyway, we've got lots of questions spinning in our heads and I'm so glad you all are here and thanks for letting me be a part of the group. Has anyone in the group done therapy long distance? I'm lucky enough to be at home full-time and am not beyond driving to NYC or Philly (we have family there) once a week if necessary.Oh, one final thing about Ben - he was started on a very low dosage of Paxil (2.5 mg) and within 3 days, OC behavior and anxiety were way down and he was hallucinating and had aggressive side effects which seemed to surprise him as much as me. He is now on 37.5 mg of Zoloft with moderate results and side effects.Ok - one more thing (I told you I had lots of questions...) I, too, am very anxious about school starting up again. I sometimes think that summer break has been as resposible for his drop in OC behavior as the meds (maybe I'm wrong - they happened at the same time). We are blessed with a terrific school with folks who really reached out to Ben when he was struggling with his fears in school. His K teacher chose his first grade teacher for the primary reason that she thinks that Miss Maine will be the most supportive and helpful to Ben. The school psychologist checked in with Ben frequently and even the nurse was prepared for him when he came down to see her for anxiety induced stomach aches. So we have lots of support, but I don't think they know any more than I did about OCD. Any materials out there that you would suggest that I could give to his teacher that might help her work with him?I apologise if I have asked any questions that have been previously answered in other posts - I went back as far as I was able - in the time I have, but I've been anxious to say hi and become involved too.Thanks again for any help!TerryYou may subscribe to the OCD-L by emailing listserv@... . In the body of your message write: subscribe OCD-L your name. You may subscribe to the Parents of Adults with OCD List at parentsofadultswithOCD-subscribe . You may subscribe to the OCD and Homeschooling List at ocdandhomeschooling-subscribe . You may change your subscription format or access the files, bookmarks, and archives for our list at . Our list advisors are Tamar Chansky, Ph.D., Aureen Pinto Wagner, Ph.D., and Dan Geller, M.D. Our list moderators are Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Kathy , and Jackie Stout. Subscription issues or suggestions may be addressed to Louis Harkins, list owner, at lharkins@... .

[Guest guest]

Thanks Tamra!

I notice that the OCF Conference was in Philly next year and was

psyched! I grew up in NJ just outside of Philly and am down there a

lot visiting family, so we're planning already on going!

Ben did the same winding down after school. We've always been strict

about not much TV and only PBS etc (we don't have cable) until all of

this happened. He would be so aggitated when he got home, that I

would _encourage_ him to watch TV - and not just any TV, but Pokemon

of all things! But it was just what he needed to come down off his

high anxiety....and that was with a VERY nuturing, compassionate,

understanding teacher! I'm sorry you didn't have that....it was

lonely and stressful enough _with_ the support!

Terry

> Welcome Terry:

>

> You came to the right place for information and support; I don't

know how I would cope if I didn't have this group. I took me three

years to find it -- so you're doing great. The next book you need

is: " Obsessive-Compulsive Disorder in Children and Adolescents " by

March and Mulle. It is a manual on how to do CBT. Great book. Some

on the list call it their second bible.

>

> My son, , was diagnosed with OCD at 6 (now 9) and was

constantly spitting to get rid of the contamination from whatever.

His shirts would be soaked by the end of the day. Unfortunately he

did not have an understanding teacher. Spitting wasn't allowed in

school no matter what. She knew about 's disorder and I gave her

every bit of information I had, but she either didn't care or didn't

want to bother with it. She wanted a " normal " classroom.

>

> does better at school than at home with his OCD. OCD seems to

be primarily at home. Of course, there are things at school the OCD

bothers him about but he controls it to some degree. I found he

comes home and kinda of melts down or releases all of his pent up

OCD. Not fun, but he knows he's in a safe environment.

>

> I live in Omaha, Nebraska, and I too have a difficult time finding

a therapist who knows CBT. We do have one who is CBT certified but I

have to push her to follow the protocol. Next year you need to go to

the OCF Conference; you'll learn a lot and meet a lot of these

wonderful people on the list -- and next year it's in Philly!! One

thing I would like to see at the conference next year is a session

for those who are in rural areas or places w/o CBT therapists on how

to do CBT and still be the supporter, parent, and disciplinarian all

at the same time. I too am at home during the day and have found it

to help a lot (and me too). I have time to read up on OCD,

volunteer at school, and have some me time before summer begins.

>

> Oh, don't worry about being long winded -- that's what we're here

for, to listen and give support.

>

> Welcome again. Hope to " talk " to you again soon. You're looking

in all the right places for help, give yourself a pat on the back,

you deserve it.

>

> Tamra

> (ocdmom2001)

> Omaha, NE

> Hi - I'm New

>

>

> Hi Everyone,

> My name is Terry and my husband, Bill, and I have two boys - Ben

(6

> yo) and Sam (3 yo). Ben was diagnosed with OCD back in March, but

it

> really wasn't until the last couple of weeks that Bill and I have

> begun to understand what it was all about (didn't someone mention

the

> word " muddled " in one of the recent posts? That's the perfect

word

> for us lately....).

>

> A little about Ben. He's extremely inquisitive, talkative and

> outgoing. Nine times out of ten, he'll be the one to initiate a

> conversation with a complete stranger rather than vice versa. He

is

> much higher on the obsessions and fairly low on compulsions (he

has

> to ask me questions about his fears for reassurance - on a

moderate

> day, before meds were started, I counted an average of 40

> questions/hour). Many of his fears center around the things you

> childproof your house for - outlets (being electrocuted), plastic

> bags (suffocating) and household cleaners (being poisoned). These

> fleshed out into being near or breathing near outlets, absolutely

> anything made out of plastic, and feelings like anything that

went

> into his mouth might be poisoned - including his saliva. Hence,

> shirts soaked with spit when he got off the school bus.

>

> I feel like we are at a crossroads, or approaching one - and just

> don't yet know what our options are. We live about one hour north

of

> Albany NY, Ben's been in therapy for about two months now, and I

had

> to find out about CBT through Dr. Chansky's book - although Ben's

> therapist has hit it off quite well with Ben and he genuinely

cares

> about his patients - he's not trained in CBT and we're not sure

> anyone in the area is....my first question - does anyone know of

> anyone in the Albany NY area who is trained in CBT? And, if not,

what

> might our options be? I have used some of the suggestions in Dr.

> Chansky's book and feel that we've made more progress in two

weeks

> than in the 8 weeks of therapy. Ben (and we) feel empowered to

make a

> difference. I told Ben's counselor what I was doing and he was a

> little wary of it, though open to hearing me out too, and I told

him

> I did it because we had told everyone involved that not only did

Ben

> need help, but so did we - in learning how to work with Ben on a

day

> to day, hour to hour, minute-to-minute basis - and noone offered

us

> any assistance. I told him that we couldn't keep living week-to-

week

> just waiting till our next visit with him.

>

> Anyway, we've got lots of questions spinning in our heads and I'm

so

> glad you all are here and thanks for letting me be a part of the

> group. Has anyone in the group done therapy long distance? I'm

lucky

> enough to be at home full-time and am not beyond driving to NYC

or

> Philly (we have family there) once a week if necessary.

>

> Oh, one final thing about Ben - he was started on a very low

dosage

> of Paxil (2.5 mg) and within 3 days, OC behavior and anxiety were

way

> down and he was hallucinating and had aggressive side effects

which

> seemed to surprise him as much as me. He is now on 37.5 mg of

Zoloft

> with moderate results and side effects.

>

> Ok - one more thing (I told you I had lots of questions...) I,

too,

> am very anxious about school starting up again. I sometimes think

> that summer break has been as resposible for his drop in OC

behavior

> as the meds (maybe I'm wrong - they happened at the same time).

We

> are blessed with a terrific school with folks who really reached

out

> to Ben when he was struggling with his fears in school. His K

teacher

> chose his first grade teacher for the primary reason that she

thinks

> that Miss Maine will be the most supportive and helpful to Ben.

The

> school psychologist checked in with Ben frequently and even the

nurse

> was prepared for him when he came down to see her for anxiety

induced

> stomach aches. So we have lots of support, but I don't think they

> know any more than I did about OCD. Any materials out there that

you

> would suggest that I could give to his teacher that might help

her

> work with him?

>

> I apologise if I have asked any questions that have been

previously

> answered in other posts - I went back as far as I was able - in

the

> time I have, but I've been anxious to say hi and become involved

too.

>

> Thanks again for any help!

> Terry

>

>

>

[Guest guest]

Hiya Katy,<br><br>I'm new here also..but I'm so

pleased I found this site..there is lots of info and

support here.<br><br>Why are you not a candidate for the

surgery?<br><br>I have been told by my consultant that I am 'too

young' at 45 for knee replacements..my dad who is 78

just had his left knee replaced and said it feels

marvellous..I wish my knees felt marvellous..roll on my 78 th

birthday!!!!!!<br><br>take care<br><br>anne x

[Guest guest]

Apparently My legs are straight enough. I'm going

to get a second opinion. Anyone who looks at my legs

could tell you there are not straight. My dad is going

to have knee replacement in the next two years. I'll

let him know what your dad thinks. See ya - Katy

[Guest guest]

In a message dated 8/26/2002 7:23:35 PM Central Standard Time,

cbwimmer@... writes:

> Hi,

> I just wanted to introduce myself. I'm and I have a 4 month old

> baby boy with DS named Brady. He's doing really well healthwise, only a

> small VSD that we think has closed on its own, and somewhat of a constant

> cold and teary eyes. Other than that - it's all been great so far. He's

> cute as can be, and the apple of all our (us and the other 5 kids) eyes!

> I love reading your posts (mostly, sometimes it's overwhelming thinking

> about all that is coming up) and gleaning info from your experiences.

> Thanks for all your free advice

> mom to Brady 4 mos DS, and 5 others

HI

Welcome to the list ................ and congrats on your baby I sure wish

that I was here when Sara was born, she might not have developed this

princess syndrome she has lol

Kathy mom to Sara 10

[Guest guest]

Hello . Welcome to the group. Maybe your little watery eyed has

allergies. My whole family has allergies and this is the time of year it

start to act up.

[Guest guest]

--- Beth <b_fairfield2000@...> wrote:

> Date: Tue, 27 Aug 2002 05:11:55 -0700 (PDT)

> From: Beth <b_fairfield2000@...>

> Subject: Re: Hi - I'm new

> Wimmer <cbwimmer@...>

>

> Hi, welcome to the list.

>

> I am Beth, mom to beth(HMS),Brit(Down

> Syndrome,asthma,reflux), and Willie(ADHD). Brit is

> going to be 10 on Sept 27. She is doing well NOW.

> I

> have learned that you just take one day at a time.

>

> Here is her page.

>

> http://tracheostomy.com/trachkids/kids2/brittany.htm

>

> Hugs

> Beth

>

> __________________________________________________

>

[Guest guest]

I remember a year ago there was a mother on this message board who's son had systemic JRA.

(poly JRA and Spondy, 19)

[Guest guest]

That had down syndrome... Sorry its early.. I didnt re read what i had wrote..

Lots of Love

[Guest guest]

Dear ,

Welcome!!

Oh, my, what you must be going through. First of all, the guilt,

don't ever kick yourself. You're doing the best you can!! Until

any of us had a diagnosis, we would never know what we now know.

Most of us here could possibly pass for doctors with our knowlege

after the fact, (not that we diagnose). We went almost 4 years

of " lots of doctor stuff " before we had a diagnosis and I've tried

to blame myself for not being smarter, but unless we went to school

to be a pediatric rheumatologist, what else would we know?

I have never read about any prevelance of JRA and downe's syndrome

being related. Maybe I'm ignorant because I don't read up on

downe's, but it's never been mentioned in any study I've seen.

I have not had my son go through " bone scans " , but I think they are

xrays or CT scans or MRI's to determine joint damage, or establish a

base line to determine future joint damage so they can determine how

quickly the JRA is progressing.

Keep reading this site and you will learn a ton. Welcoming new

members is always bittersweet.... we love to " meet you " but wish it

wasn't under these circumstances.

Stacia and Hunter,7,systemic,iritis

[Guest guest]

Hi Stacia:

Thanks so much for the warm welcome!! I've come to the conclusion that you guys on this loop are very knowledgeable as I was reading through the posts yesterday.

I do try not to beat myself up about the past year, but sometimes it's hard as it just seems so obvious that JRA was the problem now. The last few appointments I went to I kept telling the doctors that it seems like arthritis to me... how it always hurt after he got up in the morning or after naps or had even been still for a long time. His pediatrician just kept saying she didn't see any arthritis showing up on the Xrays. Oh, well, at least it's done now and we're on the road to relief. Again, thanks for the welcome!!

Wife to BruceMommy to - 6, Noah - 4, and Grace - 1

Click HERE to see my Ebay Auctions

OR Look Under User ID "numom1"

COMPLETE SURVEYS FOR CASHEmail Me For Referral Links

Re: Hi - I'm New

Dear ,Welcome!!Oh, my, what you must be going through. First of all, the guilt, don't ever kick yourself. You're doing the best you can!! Until any of us had a diagnosis, we would never know what we now know. Most of us here could possibly pass for doctors with our knowlege after the fact, (not that we diagnose). We went almost 4 years of "lots of doctor stuff" before we had a diagnosis and I've tried to blame myself for not being smarter, but unless we went to school to be a pediatric rheumatologist, what else would we know?I have never read about any prevelance of JRA and downe's syndrome being related. Maybe I'm ignorant because I don't read up on downe's, but it's never been mentioned in any study I've seen.I have not had my son go through "bone scans", but I think they are xrays or CT scans or MRI's to determine joint damage, or establish a base line to determine future joint damage so they can determine how quickly the JRA is progressing.Keep reading this site and you will learn a ton. Welcoming new members is always bittersweet.... we love to "meet you" but wish it wasn't under these circumstances.Stacia and Hunter,7,systemic,iritis

[Guest guest]

Welcome ....I just recently joined this group. My daughter was diagnosed Feb 6 but we have a severe eye condition called iritis/uveitis that goes with Jra...which we have been battling over two years.....This is a great group. I just recently joined it myself....Terri

Hi - I'm New

Hi Everybody:

My name is , I'm married to Bruce and have three kids - - 6, Noah - 4, and Grace - 1. Noah has Down Syndrome and was also diagnosed with JRA about two weeks ago. He currently has four joints affected so the doctor said he was between the pauci and the poly form of JRA.

This has been quite a long time coming up with the diagnosis as I first started being able to tell Noah was in pain about a year ago as he developed a really bad limp. I had taken him to the doctor at that time and they did X-rays and could not find anything wrong; therefore, they decided he must have pulled a muscle. Well, as the limp didn't go away after a while, I consulted his pediatrician and she said to take him to an orthopedic doctor. As there are no pediatric orthopedic doctors in my area, we took him to a regular one who I was told sees a lot of children. He examined him and without doing any sort of tests or anything figured he must have a leg that is longer than the other so he ordered him a lift in his shoe. We used that for quite a while with no noticeable improvement (however, it becomes hard when Noah doesn't like to wear shoes and takes them off all the time).

Finally, after quite a while I went back to his pediatrician and said something is wrong with him and I want to find out what it is. So... the barrage of X-rays, blood tests, etc. came on. She finally said go see a pediatric orthopedic which were at least an hour away if not longer. So we've been going that route; however, it takes about 1 1/2 months just to get into the appointment. So we went and saw him and he ordered some more blood tests, a bone scan, and said see a pediatric rheumatologist. At that point, I'm like ok, so what do you think is the problem and he said JRA. So, we wait another month and a half to see the pediatric rheumatologist and she confirms the pediatric orthopedic's diagnosis.

Also, to give the doctor's some credit.... with Down Syndrome things like a leg being shorter than the other is not really uncommon and when a child is still non verbal it's pretty hard to ask if they are in pain...

Noah is now on Naprocyn and in physical therapy twice a week for an hour. He's only been on the Naprocyn for a little over a week and I feel so bad for him after the physical therapy as his knee gets so warm and has got to be sore. I'm having some problem dealing with the guilt that this has gone on for so long with no relief. At the present time, Noah isn't very verbal and still can't tell me what is going on most of the time. His grunts pretty much tell me when he hurts and stuff like that. Obviously, this has been going on longer than the year I first noticed his limp, but I just had no clue.

So... a couple of questions if you got this far...

Are there any more kids with Down Syndrome on this list who have JRA? The pediatric rheumatologist said that it is a fairly common problem with kids who have Down Syndrome.

Does anyone know specifically what the orthopedic doctor is looking for when he ordered the bone scan? I'm hoping he is looking for something more than just confirming he has JRA as it was quite an ordeal to go through and required a whole day at the hospital.

Any comments, etc. are all appreciated as we are brand new to this and are just trying to navigate our way through.

Wife to BruceMommy to - 6, Noah - 4, and Grace - 1

Click HERE to see my Ebay Auctions OR Look Under User ID "numom1"

COMPLETE SURVEYS FOR CASHEmail Me For Referral Links

[Guest guest]

Hi ine,

I'm glad you joined us here at .

I hope you'll learn enough that you can make an informed decision

about which device to get for your daughter.

Bottom line is: you can't go wrong in choosing an implant.. no matter

which you choose. Pick the one that best fits your lifestyle(or your

daughters) and go with it.

I can tell you all about the Nucleus device, but I wouldn't be able to

tell you a lot about the AB or Med El devices as I am a Nucleus user.

Those who wear the Med El or AB device would be able to give you more

info on their device, but not on the Nucleus, and, of course, everyone

thinks his/her device is the best in the world.. and to that

particular person.. it is the best because it's what they wear and it

works for them <smile>

One thing you might try and do is contact the implant center and talk

with different ci users about their particular implant.

If I can help you at all, please feel free to email me either here on

the forum or privately. I'd be happy to answer any questions you may

have.

You've made a wonderful choice in wanting to implant your child and I

wish you the very best as you take this journey with your child into a

world filled with sound.

Hugs,

Silly MI

In , " paulinemesa2002 " <paulinemesa@g...> wrote:

> Hi

>

> I hope I have come to the right place. I'm still trying to decide

> what brand of implant to get for my daughter. Is there any one that

> can help me understand more about the different devices? I have all

> the marketing literature but what's going to be best to improve my

> precious 5 year old daughter's hearing. This is something she will

> have for a lifetime.

>

> Thanks

> ine

[Guest guest]

Hi! I am a parent of three boys, two deaf with CIs. They each have

very different stories. You can read about our CI experiences at:

www.bionicboys.blogspot.com

The www..com webpage has good links to the individual company

information, as well as a lot of other stories. Sometimes all of the

information can be very overwhelming, along with everything else you

may be going through. I know, I remember. You're in a good place

for support, though. Hang in there and feel free to ask any questions

you may have.

--Karin, mom to (CII 11/01), and Tommy (90K 5/04)

BEA Volunteer