Re: struggling with questions

[Guest guest]

I am going to let some of the other much more knowledgable parents on this

list respond more fully to you, as I know they will, but I will at least say

that this absolutely sounds like OCD. (And the tongue thing sounds like

Tourettes). There seem to be as many variations on the theme as there are

people! Before my daughter's OCD (also 12) became fully obvious, I casually

mentioned that her attempts at perfection were useless since nothing is ever

perfect. So now every time she hears or reads the word " perfect " she has to

say " not perfect " six times. You would never believe how often that word is

used by people, and TV. This is totally unique to her.

Also, it might help to tell us where you are located-- there are so many of

us around the country, someone may have a recommendation on a doc for you,

Ellen in NY

[Guest guest]

My 11 year old daughter has Tourettes and OCD. She repeats words and phrases

(Tourettes) and has repetitive mental looping (OCD). She drives me nuts

sometimes with her chosen word. One day it was " hippie " , another day it was

" gay " , etc. etc. She will also pick up slogans from TV commercials or bits

of songs and repeat them all day long. In my daughter, it definitely stems

from the Tourette Syndrome, not the OCD. Where repetitive words come into

play via her OCD, it seems to be more of a complete though pattern, such as a

homework instruction that is set in stone that she can't decipher. " I'm sure

the teacher said to do it this way " . I ask, " what does that mean? " and she

can't tell me, but she can't break out of the mindset until I can find (by

trial and error) the wording or phrasing to break the loop. Sometimes it's

quite a challenge. The tongue thing (whatever that is) is probably

Tourettes. My daughter makes facial grimaces and sometimes whistles. The

touching thing could be either Tourettes or OCD or something else altogether.

My daughter loves to touch but she wants to initiate it. She does not like

others to initiate touching her. According to the most recent Motivational

Assessment Study we had done, this is a sensory deprivation problem. Her

inner neurological system cannot correctly balance sensory input and need for

stimulation to her sensory system. Touching is one way she is attempting to

balance her system. At times I have to remind her of " appropriate " and

" inappropriate " touching and give her things like a koosh ball or silly putty

or something like that she can squeeze and manipulate to stimulate her

nervous system. She also has poor impulse control which just adds to the

touching problem.

It can be hard to sort it out, but its worth the effort. Remember also that

with Tourettes and OCD many symptoms can overlap and its not so important to

know exactly which one it is, as it is to find the solution that will help

your child cope with it.

Jay W.

[Guest guest]

Welcome to the list! I understand your dilemma - ocd or tourettes can be

difficult to decipher. My daughter has tics as well as rituals and also the

need to say or repeat things. It is difficult to discern the difference

between a complex motor tic and a ritual. One thing I know is true is that

you must see a doctor who is familiar with both in order to get a good

diagnosis you can trust. The doc who diagnosed my daughter is a researcher

mainly, he doesn't follow patients unless they are in one of his studies.

I take her to someone he recommended. Even then, I find that knowing as

much as possible about these disorders helps me ask the right questions

which lead to better treatment.

Where are you located? Maybe someone on the list can recommend someone near

you. You've found a good resource and support system in this list.

Dana in NC

gmiller@... wrote:

> From: gmiller@...

>

> I just recently joined the list and have enjoyed reading everyone's

> encouraging words of wisdom. I keep hoping to see the behavior of my

> son (12 yr old) in someone's writing, but haven't so far. I would

> appreciate any advice you have to share before I take him to a

> psychiatrist for medication. So far we have only seen a

> psychologist, who believes the diagnosis is OCD or possibly

> tourette's. Unfortunately, he was no help in referring a doctor - so

> I am on my own trying to find out everything I can.

>

> Please excuse my ignorance, but this is all so new and scarey.

> Sometimes he is so wonderful that I think I must be the one with a

> problem. But inevitably he begins saying and doing the strangest

> things. I know that he has to count and do his special " tongue

> thing, " but that doesn't seem to be debilitating. It is the things

> that he must say that disturbs me most. He seems to pick a word for

> the day, and says it every chance he gets. (although he tells me that

> even when he doesn't speak it, he is saying it in his mind)

> Sometimes it is just a word, but usually it is a phrase. (usually

> silly and meaningless or not nice) His other problem is that he must

> touch us. Sometimes a full hug, or when he knows we are getting

> annoyed with it, he will just use one finger. I keep asking myself

> if he can stop, but chooses not to. Or is it a tic? Or is it a

> compulsion? How do you know? Where do I start, and how can I help

> him learn to control himself? It breaks my heart to see him trying

> soooo hard not to say something out of line in public that he doesn't

> seem to enjoy himself. He seems mentally and physically exhausted

> after any outing. Does this sound like OCD? Can you tell I am

> searching?

>

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[Guest guest]

Hi, Don't fell bad ,we are all learning.I've been in this ocd thing for 21/2

years and still looking for answers.It sure sounds like OCD to me,I know

and Kathy H can help you .What is your name? I'm Beth ,I have a 6 yr.

old who has clothing problems.I bought her three new dresses,red,purple,and

blue,she can NOT get the blue one on ,and doesn't want it to touch

anything.Stay on this list it's the best help for you ,as a mother . Beth in

IN.

struggling with questions

> From: gmiller@...

>

> I just recently joined the list and have enjoyed reading everyone's

> encouraging words of wisdom. I keep hoping to see the behavior of my

> son (12 yr old) in someone's writing, but haven't so far. I would

> appreciate any advice you have to share before I take him to a

> psychiatrist for medication. So far we have only seen a

> psychologist, who believes the diagnosis is OCD or possibly

> tourette's. Unfortunately, he was no help in referring a doctor - so

> I am on my own trying to find out everything I can.

>

> Please excuse my ignorance, but this is all so new and scarey.

> Sometimes he is so wonderful that I think I must be the one with a

> problem. But inevitably he begins saying and doing the strangest

> things. I know that he has to count and do his special " tongue

> thing, " but that doesn't seem to be debilitating. It is the things

> that he must say that disturbs me most. He seems to pick a word for

> the day, and says it every chance he gets. (although he tells me that

> even when he doesn't speak it, he is saying it in his mind)

> Sometimes it is just a word, but usually it is a phrase. (usually

> silly and meaningless or not nice) His other problem is that he must

> touch us. Sometimes a full hug, or when he knows we are getting

> annoyed with it, he will just use one finger. I keep asking myself

> if he can stop, but chooses not to. Or is it a tic? Or is it a

> compulsion? How do you know? Where do I start, and how can I help

> him learn to control himself? It breaks my heart to see him trying

> soooo hard not to say something out of line in public that he doesn't

> seem to enjoy himself. He seems mentally and physically exhausted

> after any outing. Does this sound like OCD? Can you tell I am

> searching?

>

>

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

> Tired of missing calls while online? Now you can surf the Internet

> without worrying about missing important calls! CallWave's FREE

> Internet Answering Machine lets you hear who's calling while online.

> 1/1927/2/_/531051/_/951463193/

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

>

> You may subscribe to the OCD-L by emailing

> listserv@... .

> In the body of your message write:

> subscribe OCD-L your name.

> The Archives and Links List for the OCD and

> Parenting List may be accessed by going to

> / .

> Enter your email address and password.

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

>

>

[Guest guest]

Hi Jay, Where did you get a Motivational Assessment Study done? Thanks Beth

in IN.

Re: struggling with questions

> From: Jay7138658@...

>

> My 11 year old daughter has Tourettes and OCD. She repeats words and

phrases

> (Tourettes) and has repetitive mental looping (OCD). She drives me nuts

> sometimes with her chosen word. One day it was " hippie " , another day it

was

> " gay " , etc. etc. She will also pick up slogans from TV commercials or

bits

> of songs and repeat them all day long. In my daughter, it definitely

stems

> from the Tourette Syndrome, not the OCD. Where repetitive words come into

> play via her OCD, it seems to be more of a complete though pattern, such

as a

> homework instruction that is set in stone that she can't decipher. " I'm

sure

> the teacher said to do it this way " . I ask, " what does that mean? " and she

> can't tell me, but she can't break out of the mindset until I can find (by

> trial and error) the wording or phrasing to break the loop. Sometimes

it's

> quite a challenge. The tongue thing (whatever that is) is probably

> Tourettes. My daughter makes facial grimaces and sometimes whistles. The

> touching thing could be either Tourettes or OCD or something else

altogether.

> My daughter loves to touch but she wants to initiate it. She does not

like

> others to initiate touching her. According to the most recent

Motivational

> Assessment Study we had done, this is a sensory deprivation problem. Her

> inner neurological system cannot correctly balance sensory input and need

for

> stimulation to her sensory system. Touching is one way she is attempting

to

> balance her system. At times I have to remind her of " appropriate " and

> " inappropriate " touching and give her things like a koosh ball or silly

putty

> or something like that she can squeeze and manipulate to stimulate her

> nervous system. She also has poor impulse control which just adds to the

> touching problem.

>

> It can be hard to sort it out, but its worth the effort. Remember also

that

> with Tourettes and OCD many symptoms can overlap and its not so important

to

> know exactly which one it is, as it is to find the solution that will help

> your child cope with it.

> Jay W.

>

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

> What Your Home Is Worth? Find Out Instantly!

> 1/1584/2/_/531051/_/951485558/

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

>

> You may subscribe to the OCD-L by emailing

> listserv@... .

> In the body of your message write:

> subscribe OCD-L your name.

> The Archives and Links List for the OCD and

> Parenting List may be accessed by going to

> / .

> Enter your email address and password.

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

>

>

[Guest guest]

Hi and welcome to the list! Most of what you write about your son applies

to my daughter (6) as well, right down to the hugging and " tongue thing. "

Her diagnosis is OCD at this time, she takes Zoloft and recently started

taking Risperdal because she developed many tics that were interfering with

sleep. I have been lucky to find a psychologist who is familiar with OCD in

smaller kids, his approach is to worry less about whether a particular

symptom is OCD or Tourette's, etc., and simply treat symptoms. I like this

approach since compulsions can look at lot like tics and vice versa and

teasing out which is which is difficult. My daughter's first psychiatrist

had me fill out innumerable forms and rating scales and diaries of symptoms

toward nailing down her diagnosis, but even after two months of this he was

still uncertain whether she was having Tourette symptoms, though she

couldn't qualify for that diagnosis anyway because of the requirement that

tics be present continuously for a year. To find a doctor knowledgable

about OCD, you can contact the OC Foundation. If you have a hospital with a

psychiatric facility nearby, you might call there too. I'm surprised the

psychologist in your area hasn't been helpful pointing you in the right

direction.

Is your psychologist using Exposure and Response Prevention techniques with

your son? This is the way he can be helped to control his compulsions to

touch, etc. I know a lot of these things look willful (this is the biggest

problem I think for those with OCD/TS, people want them to just stop it

already!) but they are symptoms of the disorder. I've been told tics can be

suppressed or delayed sometimes but at some point they have to be released,

and this is true for my daughter.

I like your description of how OCD takes the fun out of things. My daughter

too is exhaused after outings when she has spent much of her energy and

attention battling compulsions.

Kathy R. in Indiana

struggling with questions

> From: gmiller@...

>

> I just recently joined the list and have enjoyed reading everyone's

> encouraging words of wisdom. I keep hoping to see the behavior of my

> son (12 yr old) in someone's writing, but haven't so far. I would

> appreciate any advice you have to share before I take him to a

> psychiatrist for medication. So far we have only seen a

> psychologist, who believes the diagnosis is OCD or possibly

> tourette's. Unfortunately, he was no help in referring a doctor - so

> I am on my own trying to find out everything I can.

>

> Please excuse my ignorance, but this is all so new and scarey.

> Sometimes he is so wonderful that I think I must be the one with a

> problem. But inevitably he begins saying and doing the strangest

> things. I know that he has to count and do his special " tongue

> thing, " but that doesn't seem to be debilitating. It is the things

> that he must say that disturbs me most. He seems to pick a word for

> the day, and says it every chance he gets. (although he tells me that

> even when he doesn't speak it, he is saying it in his mind)

> Sometimes it is just a word, but usually it is a phrase. (usually

> silly and meaningless or not nice) His other problem is that he must

> touch us. Sometimes a full hug, or when he knows we are getting

> annoyed with it, he will just use one finger. I keep asking myself

> if he can stop, but chooses not to. Or is it a tic? Or is it a

> compulsion? How do you know? Where do I start, and how can I help

> him learn to control himself? It breaks my heart to see him trying

> soooo hard not to say something out of line in public that he doesn't

> seem to enjoy himself. He seems mentally and physically exhausted

> after any outing. Does this sound like OCD? Can you tell I am

> searching?

[Guest guest]

Oops, I typed " psychologist " when I meant " psychiatrist " in my previous

post. Of course Kel's psychiatrist is the one who diagnoses and prescribes

her meds.

Kathy R. in Indiana

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

>I have been lucky to find a psychologist who is familiar with OCD in

> smaller kids, his approach is to worry less about whether a particular

> symptom is OCD or Tourette's, etc., and simply treat symptoms.

[Guest guest]

Sure sounds like OCD to me. You are feeling overwhelmed now because you

haven't had a chance to learn what tools there are to help him (and

you). Fortunately you have caught this when he is only 12--it gets

worse the longer it is untreated. My son was also diagnosed at 12 and

is doing reasonably well now at 14.

The key is to get a good psychiatrist AND a good behavioral therapist

who knows the appropriate treatment for OCD. As you indicate, it ain't

easy! After a year of medication trials only, which helped with his

concomitant depression but not the OCD very much, I got on the internet

and found the OCFoundation website to get more information. You may

have already done this. The OCFoundation will give you a list of OCD

therapists, both psychiatrists and psychologists in your geographical

area. This list is not inclusive, however. Some very good therapists

have not asked to be listed, and no doubt some who have asked to be

listed are not very good. Still, it is a start. Then you have to

interview them to get an idea whether they know what they are doing and

whether you and your son feel comfortable with them. The more

knowledgeable you are when you start interviewing, the more likely you

are to choose wisely. So you might want to pick up some of the books

like " Brain Lock " or " The Boy who couldn't stop Washing " , etc and read

it before you go.

I'm a little surprised that your psychologist was no help in finding a

doctor because you'd think s/he would be dealing with psychiatrists all

the time in treating patients with OCD, unless that is not his/her

specialty, in which case I suggest you switch to a therapist experienced

in pediatric OCD.

The best thing you can do for yourself and your son, in my opinion, is

attend the next OCFoundation Conference, which will be in Chicago in

August, I believe. I have no idea where you live, but my son and I

attended the OCFoundation Conference in Arlington, VA last fall and

found it invaluable. Fortunately, we live only 1.5 hours from there.

It was very eduational, and helped my son feel like he wasn't the only

one and exchange views with other kids in his predicament. I shared

with other parents, and we both attended lectures by experts in the

field. There are also books available, etc.

So--good luck. You are off to a good start in joining this list. You

will find help and comfort from the experiences of others who have been

battling this longer than you and your son have.

Judy

gmiller@... wrote:

>

> From: gmiller@...

>

> I just recently joined the list and have enjoyed reading everyone's

> encouraging words of wisdom. I keep hoping to see the behavior of my

> son (12 yr old) in someone's writing, but haven't so far. I would

> appreciate any advice you have to share before I take him to a

> psychiatrist for medication. So far we have only seen a

> psychologist, who believes the diagnosis is OCD or possibly

> tourette's. Unfortunately, he was no help in referring a doctor - so

> I am on my own trying to find out everything I can.

>

> Please excuse my ignorance, but this is all so new and scarey.

> Sometimes he is so wonderful that I think I must be the one with a

> problem. But inevitably he begins saying and doing the strangest

> things. I know that he has to count and do his special " tongue

> thing, " but that doesn't seem to be debilitating. It is the things

> that he must say that disturbs me most. He seems to pick a word for

> the day, and says it every chance he gets. (although he tells me that

> even when he doesn't speak it, he is saying it in his mind)

> Sometimes it is just a word, but usually it is a phrase. (usually

> silly and meaningless or not nice) His other problem is that he must

> touch us. Sometimes a full hug, or when he knows we are getting

> annoyed with it, he will just use one finger. I keep asking myself

> if he can stop, but chooses not to. Or is it a tic? Or is it a

> compulsion? How do you know? Where do I start, and how can I help

> him learn to control himself? It breaks my heart to see him trying

> soooo hard not to say something out of line in public that he doesn't

> seem to enjoy himself. He seems mentally and physically exhausted

> after any outing. Does this sound like OCD? Can you tell I am

> searching?

>

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

>

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

> You may subscribe to the OCD-L by emailing

> listserv@... .

> In the body of your message write:

> subscribe OCD-L your name.

> The Archives and Links List for the OCD and

> Parenting List may be accessed by going to

> / .

> Enter your email address and password.

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

[Guest guest]

In a message dated 2/25/00 7:16:00 AM Mountain Standard Time, rwwayt@...

writes:

<<

Hi Jay, Where did you get a Motivational Assessment Study done? Thanks Beth

in IN.

>>

I had her public school do the Motivational Assessment Study in conjuction

with the Functional Behavioural Assessment, which is part of her IEP

(Individual Education Plan). The end result of the Motivational Assessment

and determination of her sensory problems resulted in the school assigning an

occupational therapist to help find solutions to her sensory needs. You

might check with the public school where you are located. I am in Denver,

Colorado.

Jay