Re: (unknown)

[Guest guest]

Hi Alison, sounds like Henry's really going for it. I remember my daughter at

five just having had a bellyful of the dumb stuff OCD wanted her to do, and she

stopped a couple of the most bothersome compulsions and just lived with the

anxiety this caused for a few days until it faded away. I also thought of a

withdrawing drug addict, at one point my child was sobbing and kicking on the

floor because she wanted so bad to do this one certain compulsion. Her doctor

had told her, the way to make OCD leave her alone was to be very stubborn and

refuse to do the things " he " told her to do.

Kel also felt woozy and sick, and emotionally drained. That Henry feels better

after eating makes me think he's probably got an anxious tummy from not licking.

I hope tomorrow is easier for him, that he's down to only two licks is great!

If he backslides a bit, just tell him that's alright, he'll win next time. Ever

positive! The flip side of younger kids just going for it, is they can

sometimes also get abruptly discouraged and have problems realizing things are

getting better overall and they are winning.

I think Henry will be alright, plus feeling very in control of a disorder that's

been pushing him around quite a bit lately, in a few days. His anxiety will

start to fall soon, ERP take advantage of the physiological fact that your body

can't stay in flight/fight mode more than a certain amount of time, 45 minutes

or so each episode, if I remember correctly. So anxiety starts to fall after

awhile, whether he licks or he doesn't. Physically I don't think he's at any

risk, but emotionally I'm sure he's feeling drained and stressed.

It's getting pretty late over there so I hope Henry by now is getting a break

from the compulsive urges and stress of bossing so hard, with a well-deserved

night of sleep.

Let us know how it goes,

Kathy R. in Indiana

----- Original Message -----

From: ali7196

This weekend with Henry everything seems to be turning around. After

a bad time after washing his hands he told me that the only way he

thought he would get through this was that if he washed them and

stopped himself from licking them. I told him from your advise in

the past that this was not him, and i would help him as best as i

could. Well, from licking them anything from 10 times after each

time he has washed them, he licked them three times all day

yesterday (two times i was there and he did it with out thinking)

and he has licked them twice today. It has not been easy for either

of us, i have had a lot of tears off him and he has spent the whole

weekend feeling sick, while at times i have watched my son look more

like a heroine addict withdrawing than a seven year old but at each

stage i have asked him is this what he wants and he is determined to

stick to it. He wants to be free of this with such determination. I

am so proud of him and even while he has been fighting it i have not

done the things like fasten his shoe laces or put his top on for

him, things that are usually so easy, yet are so hard when his hands

are feeling 'disgusting,' he has done these himself.

My only concern is, am i allowing him to do to much to soon, he has

coped really well but as i say has felt sick all weekend yet better

after eating. Is this to anxious a state for him to be in for long

or while he has the will power and sheer determination should we

continue as we are? Your experienced advise will be welcome as usual.

One proud mum

Alison

[Guest guest]

HI allison-I don`t have the same problems as you,tho they are equally

stressful-BUT-I would ask Henry if he WANTS to continue this way.He should be

very proud of himself for his determination!!!!Best to you-Sue(from ny.)

--

--------- Original Message ---------

DATE: Sun, 21 Sep 2003 22:25:02

To:

Cc:

This weekend with Henry everything seems to be turning around. After

a bad time after washing his hands he told me that the only way he

thought he would get through this was that if he washed them and

stopped himself from licking them. I told him from your advise in

the past that this was not him, and i would help him as best as i

could. Well, from licking them anything from 10 times after each

time he has washed them, he licked them three times all day

yesterday (two times i was there and he did it with out thinking)

and he has licked them twice today. It has not been easy for either

of us, i have had a lot of tears off him and he has spent the whole

weekend feeling sick, while at times i have watched my son look more

like a heroine addict withdrawing than a seven year old but at each

stage i have asked him is this what he wants and he is determined to

stick to it. He wants to be free of this with such determination. I

am so proud of him and even while he has been fighting it i have not

done the things like fasten his shoe laces or put his top on for

him, things that are usually so easy, yet are so hard when his hands

are feeling 'disgusting,' he has done these himself.

My only concern is, am i allowing him to do to much to soon, he has

coped really well but as i say has felt sick all weekend yet better

after eating. Is this to anxious a state for him to be in for long

or while he has the will power and sheer determination should we

continue as we are? Your experienced advise will be welcome as usual.

One proud mum

Alison

[Guest guest]

HI Alison:

Wow, Henry is making wonderful progress. You must be so proud of him

and he can be so proud of himself doing this hard work of bossing back

OCD.

As long as Henry is feeling in charge of the pace of E & RP you can help

him by being the wonderful cheerleader that you are. Your description

of how our kids can look like heroin addicts withdrawing rather than

young kids was so apt for how things went in our family. Steve would

sometimes look so rough, E & RP, particularly when it is intense is quite

exhausting. Often he would need to rest and take it easy after doing

E & RP. As he got better at it, he could recycle himself faster.

Anxiety does not kill the sufferer. It just taunts them by making them

feel they might die. Henry is being very brave, please tell him I am

very, very impressed by his courage and determination and OCD is getting

very frightened. Steve followed the very early March protocol, called

" How I Ran OCD Off My Land " . I always felt this title showed the hard

work and often scary work needed to be done to boss back OCD. The more

often Henry can get OCD on the run, the further along the road to

recovery he will be. Sometimes there are setbacks but there is always

the next day when bossing back OCD may be just a bit easier again. Once

our kids have experienced success, and they get reinforcement and

support, there is no holding them back.

Do you know how high up on Henry's hierarchy he is working? You might

want to discuss this with his therapist. We did flooding with Steve, it

was very upsetting for him, but it actually got him better faster. My

choice would be to have taken it easier with him as it would have caused

less friction in the family. A number of adults just do total immersion

in exposure to get it over with. Some people do much better with a

graduated approach and the protocols for children are typically based on

this.

Please keep us posted on Henry's progress. Take care, aloha, Kathy (h)

kathy.hi@...

(unknown)

This weekend with Henry everything seems to be turning around. After

a bad time after washing his hands he told me that the only way he

thought he would get through this was that if he washed them and

stopped himself from licking them. I told him from your advise in

the past that this was not him, and i would help him as best as i

could. Well, from licking them anything from 10 times after each

time he has washed them, he licked them three times all day

yesterday (two times i was there and he did it with out thinking)

and he has licked them twice today. It has not been easy for either

of us, i have had a lot of tears off him and he has spent the whole

weekend feeling sick, while at times i have watched my son look more

like a heroine addict withdrawing than a seven year old but at each

stage i have asked him is this what he wants and he is determined to

stick to it. He wants to be free of this with such determination. I

am so proud of him and even while he has been fighting it i have not

done the things like fasten his shoe laces or put his top on for

him, things that are usually so easy, yet are so hard when his hands

are feeling 'disgusting,' he has done these himself.

My only concern is, am i allowing him to do to much to soon, he has

coped really well but as i say has felt sick all weekend yet better

after eating. Is this to anxious a state for him to be in for long

or while he has the will power and sheer determination should we

continue as we are? Your experienced advise will be welcome as usual.

One proud mum

Alison

[Guest guest]

Hi Alison,

Henry had such a spectacular couple of days that anything less must seem

like failure for him! I'd try to have him delay licking for a few minutes (ask

him how long he thinks he could handle it). After he has conquered a few

minutes, gradually increase it. That is how a therapist would handle a

compulsion

like that for most kids. It is just too much to expect them to just NOT wash

their hands, or touch the wall three times, or whatever. Most kids aren't

Henry!!!

Be sure to tell him that he didn't fail - he just did so amazingly well

right off the bat! Let him know that he can achieve the same thing gradually

and he will still end up at the same point. And reward each little increase

lavishly!

Keep us updated. I wish I knew Henry. He seems like such an amazing

little guy!

Best wishes,

[Guest guest]

Hi -It is so hard when other people don`t understand-and their reactions

are so stupid,even when they should know better.We try to use humour when we

can.My 14yo daughter washes her hands and cannot dry them(everything has LINT on

it which is GROSS)so she must dripdry her hands without touching anything.We

just say she is practicing srubbing up for surgery...........Best-Sue in ny.

--

--------- Original Message ---------

DATE: Sat, 27 Sep 2003 22:12:42

To:

Cc:

I have just got my head round the idea that Henry has OCD, as i've

said before, this has been diagnosed by the doctor but the

specialist will not make a diagnosis, she is still in the assessment

stages , she says!

Anyway, along with Henrys hand licking that was controlled for three

days brilliantly, but then he just gave up completely, he now will

not stand on the carpet after a bath as he says his feet are

disgusting too!!!!

( you know when you just do not want to hear what your child is

saying, that was one of them moments)

He is very reluctant to wash his hands at all now, i think the three

days of pure effort has actually put him back alot, he just says he

can not face it, but the feet, he has only mentioned once about a

month ago, and then again these last two days. (i think when he

mentioned the feet last time i replied with don't you dare start on

that one, you will look dead silly walking up the street licking

your feet,- i won't get any prizes for parent of the year with that

answer will i!!)

I believe it is an issue like his hands cause when i mentioned it

and asked was it like his hands he reacted with, 'no, and don't you

tell any one and i don't want to talk about it', which basically

tells me it is a problem.

with regard to this sensory thing that children with OCD suffer

from, could Henry just be suffering from that and that be why he

hates his hands when wet, or with the compulsions of needing to lick

them and the feel of the carpet is it OCD, or both.

And do i just carry on pushing for CBT with the specialist when she

finally makes her diagnosis and we reach the top of what she has

assured me is a very long waiting list for what ever therapy he may

require!!

Sorry if i sound sarcastic towards the whole system but to leave

kids in limbo like they do, and us as parents stinks!! Thankfully

things can only get better, i say that half hearted waiting for the

next little piece of information off Henry, like todays news which

is his left side of his brain tells him not to lick while the right

side tells him to lick and after him shouting me to explain to my

next door neighbour about his problem (problem, was his words not

mine), as she had tried unsuccessfully to get him to wash his hands

before tea, while the two other children looked on in amazement at

my sons horrified reaction to the request and his absolute

determination that he was not going to do it.

i feel like a right none stop moaner, but it must be healthy cause i

always feel better after it, thank you,

Alison

[Guest guest]

Hi -It is so hard when other people don`t understand-and their reactions

are so stupid,even when they should know better.We try to use humour when we

can.My 14yo daughter washes her hands and cannot dry them(everything has LINT on

it which is GROSS)so she must dripdry her hands without touching anything.We

just say she is practicing srubbing up for surgery...........Best-Sue in ny.

--

--------- Original Message ---------

DATE: Sat, 27 Sep 2003 22:12:42

To:

Cc:

I have just got my head round the idea that Henry has OCD, as i've

said before, this has been diagnosed by the doctor but the

specialist will not make a diagnosis, she is still in the assessment

stages , she says!

Anyway, along with Henrys hand licking that was controlled for three

days brilliantly, but then he just gave up completely, he now will

not stand on the carpet after a bath as he says his feet are

disgusting too!!!!

( you know when you just do not want to hear what your child is

saying, that was one of them moments)

He is very reluctant to wash his hands at all now, i think the three

days of pure effort has actually put him back alot, he just says he

can not face it, but the feet, he has only mentioned once about a

month ago, and then again these last two days. (i think when he

mentioned the feet last time i replied with don't you dare start on

that one, you will look dead silly walking up the street licking

your feet,- i won't get any prizes for parent of the year with that

answer will i!!)

I believe it is an issue like his hands cause when i mentioned it

and asked was it like his hands he reacted with, 'no, and don't you

tell any one and i don't want to talk about it', which basically

tells me it is a problem.

with regard to this sensory thing that children with OCD suffer

from, could Henry just be suffering from that and that be why he

hates his hands when wet, or with the compulsions of needing to lick

them and the feel of the carpet is it OCD, or both.

And do i just carry on pushing for CBT with the specialist when she

finally makes her diagnosis and we reach the top of what she has

assured me is a very long waiting list for what ever therapy he may

require!!

Sorry if i sound sarcastic towards the whole system but to leave

kids in limbo like they do, and us as parents stinks!! Thankfully

things can only get better, i say that half hearted waiting for the

next little piece of information off Henry, like todays news which

is his left side of his brain tells him not to lick while the right

side tells him to lick and after him shouting me to explain to my

next door neighbour about his problem (problem, was his words not

mine), as she had tried unsuccessfully to get him to wash his hands

before tea, while the two other children looked on in amazement at

my sons horrified reaction to the request and his absolute

determination that he was not going to do it.

i feel like a right none stop moaner, but it must be healthy cause i

always feel better after it, thank you,

Alison

[Guest guest]

Dear Alison,

Go ahead - moan away. Making sick children wait for treatment is so

awful. I think waiting for that first psych. appt. was the low point in my whole

life... It will get better, but you will just have to believe me on that one,

because I know it doesn't feel like it right now.

As for " parent of the year awards " , you're in good company. We have ALL

said things we regret to our kids. Dealing with something as irrational and

difficult as OCD is enough to send even stellar parents over the edge.

Do you have any books on OCD in children? They are usually available in

bigger bookstores, and certainly over the internet. You may want to just start

working with Henry in a systematic way on your own. There are parents on this

list who were forced to do that since they couldn't find therapists or doctors

familiar with OCD. The best books to start with are probably Tamar Chansky's

" Freeing Your Child from Obsessive-Compulsive Disorder " , Aureen Pinto Wagner's

" What to do when your child has Obsessive-Compulsive Disorder " or March

and Mulle's " OCD in Children and Adolescents : A Cognitive-Behavioral

Treatment Manual " . This last one is more technical (it teaches therapists how to

do Exposure and Response Prevention therapy) but is quite readable.

Please feel free to moan as much as you want. That is what this list is

for.

Hang in there,

in Nevada

[Guest guest]

Alison,

My heart goes out to you. The situation you're in is enough to drive

everyone crazy. ...

Although our OCD diagnosis went fairly easily, everything considered, we

have had other health issues in the family that have not. Basically, I

think that the goal of the system is to be so difficult and frustrating,

and put up so many barriers, that we just get discouraged and give up.

Fortunately for Henry, it's a lot harder to do that when there's a child

involved. Trust your mother's intuition and keep plugging forward. I

know others on the list will have more specific advice, but I wanted you

to know that you're not alone.

Hang in there!

Sue in Phoenix

ali7196 wrote:

> wrote yesterday with an update on Henry and how i was going to find

> out the results of the assessment forms me, the school and a close

> friend had filled out on him. Well, i went today and have been told

> that he should go to a creative therapist for three weeks for

> further assessment, as the specialist is still unable to make a

> diagnosis, and we shall see then if he needs any therapy or whether

> he should be left well alone!

> I could not believe what i was hearing. I have a seven year old that

> just manages to wash his hands twice a day with a lot of persuasion

> and is then incapable of so much as either picking up a pen (fists

> have to be clenched until hands feel just right)and he has told me

> he can not stand silence, as he feels we may be burgled so does not

> shut up, whether it is singing, talking or just stupid noises, and

> they may leave well alone.

> One minute i am convinced he has OCD, then the next i am unsure but

> more frequently i just think i am going nuts, Is it always this hard

> to understand childrens problems. Apparently because he is

> functioning at school, is not a bully, and does not tell his teacher

> things like the fact he worries about sports day for months in

> advance (cause people will be watching) yet he won all his races

> last year, it makes it tricky!!

> Alison

>

>

> *

[Guest guest]

Dear Alison,

I'm so sorry you didn't get an answer in your meeting. How unbelievably

frustrating. Your son's behavior sounds like pretty classic OCD to me. I mean

he is washing his hands, for heaven's sake - the absolute classic symptom!! I'm

unfamiliar with your health system, so I don't know what to advise. Creative

therapy sounds like a waste of time to me, since he obviously has an anxiety

disorder. But perhaps this new therapist will be better at diagnosing? Poor

Henry - he has been working so hard!

I will say that many of us went to many doctors before we got a proper

diagnosis. It is a nightmare of waiting and worrying. If you have the option,

get another opinion. Could you get a copy of the ICM diagnostic guidelines for

OCD and bring them with you? Here we would use the DSM-IV guidelines. You could

go through them with the doctor and point out what matches Henry and what

doesn't. Many good books on OCD have the guidelines included, as well as the

YBOCS symptoms checklist, which is what most doctors use to assess OCD in a

patient. There is a childrens' checklist as well. If you want help finding

these,

let me know.

Best wishes to you and Henry. It breaks my heart thinking of him clenching

his fists and singing his little heart out to drown out the silence. My daughter

(11 yr. old) does the same thing - hums, sings, talks incessantly - to drown

out the scary thoughts she has. Sad.

in NV

[Guest guest]

Hi Alison, (((hugs))) and sigh. I am also hampered by not really understanding

how the UK medical system works, and being unclear who this specialist is. Is

this some sort of " gatekeeper " to the mental health services? Is she a

psychiatrist, psychologist or what? If she did diagnose Henry with OCD, would

she herself oversee his treatment and care, or would you then be referred to a

practitioner who would actually provide services?? What can be expected of the

creative therapist? Do you have to comply with the recommendation to see this

person in hopes the specialist will eventually diagnose him and/or treat him?

Is there any way you can go back to the ped and explain your predicament?

Would/could the ped himself prescribe meds, if that's the way you are wanting to

go?

Can you contact and talk to someone at Obsessive Action? I keep thinking

someone there can guide you to the " right " specialist, doctor or therapist.

Surely these folks are expert or at least experienced in navigating the medical

system to receive proper care.

OCD *is* just tricky, it waxes and wanes, the obsessions and compulsions may

switch around without notice, it makes no sense to the sufferer or those around

him, and it exists in the mind of young children who may not provide clear

information about what they are experiencing. As an aside, most OCD kids do all

they can to keep control while at school, this is not a good criteria by which

to decide whether a child has OCD or not. Also OCD doesn't have much to do with

bullying, more likely a kid with OCD may be the target of one.

I'm sorry Alison for all the questions, I know you won't leave a stone unturned

until you get some answers for Henry.

Take care,

Kathy R. in Indiana

----- Original Message -----

From: ali7196

wrote yesterday with an update on Henry and how i was going to find

out the results of the assessment forms me, the school and a close

friend had filled out on him. Well, i went today and have been told

that he should go to a creative therapist for three weeks for

further assessment, as the specialist is still unable to make a

diagnosis, and we shall see then if he needs any therapy or whether

he should be left well alone!

I could not believe what i was hearing. I have a seven year old that

just manages to wash his hands twice a day with a lot of persuasion

and is then incapable of so much as either picking up a pen (fists

have to be clenched until hands feel just right)and he has told me

he can not stand silence, as he feels we may be burgled so does not

shut up, whether it is singing, talking or just stupid noises, and

they may leave well alone.

One minute i am convinced he has OCD, then the next i am unsure but

more frequently i just think i am going nuts, Is it always this hard

to understand childrens problems. Apparently because he is

functioning at school, is not a bully, and does not tell his teacher

things like the fact he worries about sports day for months in

advance (cause people will be watching) yet he won all his races

last year, it makes it tricky!!

Alison

[Guest guest]

Dear Alison,

Hello again! As you know, OCD is often accompanied by other disorders, or

" pieces " of various disorders, and sensory integration disorder is one of

those frequent companions. Henry may be more sensitive to the feeling of having

something wet on his hands, but unlike other children who avoid an unpleasant

sensation, he obviously feels the need to lick his hands and feet when they are

wet. I'm not a doctor, but I would say that is a compulsion. It could also be

a tic, however. I've forgotten how Henry reacts when prevented from licking,

but that would be a big clue. Children prevented from carrying out a

compulsion usually react with extreme anxiety, which can be expressed as rage,

or

hysteria or any number of ways. Telling a child not to tic doesn't do much -

they

can stop for a minute, but will do it again soon. My daughter has a somewhat

similar issue to Henry's. She used to scratch her scalp constantly and seemed to

be checking for scabs up there (she once picked at her scalp until she

developed big scabs, and this is a hangover from that period). We eventually got

her

to just run her fingers through her hair against her scalp, which is more

socially acceptable (doesn't look so much like checking for lice!!). She claims

she can't stop doing it and it soothes her. This may be a tic, or just a habit,

or it may be a compulsion related to her fears of bugs caught in her hair. We

worked on the bug thing all summer with ERT and it is largely gone, but the

hands in her hair thing continues. I'm just happy she has quit picking!!

Best wishes,

in NV

[Guest guest]

My son started with Sensitory Intergration Syndrom, SIS, we could not cut his

nails, brush his hair etc. what worked for us was " face the fear " , we very

slowly started with one issue at a time, held his hands and fingers and sqeezed

them to desensitize them then cut the nails, it is very mild now, there is a lot

of help out there for this syndrom. Good Luck (also, when it gets bad, they

suggested " wieght " to ground them, like a heavy blanket made from beans - I

never did this. I'd hug him very tight, or put my hands on his shoulders firmly

and push down - its easier to do in public without drawing attention - it calms

them down.)

ali7196 wrote:I have wrote in the past about my

son, Henry who is aged 7 and can

not let his hands get wet or he has to lick them. The specialiat he

has seen has basically told me i am the one who will be able to help

him as he is young and we are close!! She has said it is acceptable

that he only gets his hands and feet wet once a day when i make him

bath (his feet are also effected now), and that i should just praise

him when he refrains from licking them, but try to not make a huge

issue of it. Because he has been consistent with his hands for at

least 8 months now, and he does not like rain, the feel of board,

newspaper i was wondering if any of you feel this could 'just' be a

sensitivity issue as opposed to ocd. any advise would be grately

appreciated

Alison

Our list archives, bookmarks, files, and chat feature may be accessed at:

http://groups.yahoo.com/group// .

Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D., Aureen Pinto

Wagner, Ph.D., and Dan Geller, M.D. Our list moderators are Birkhan,

Castle, Fowler, Kathy Hammes, Joye, Kathy Mac, Gail

Pesses, Kathy , Vivian Stembridge, and Jackie Stout. Subscription

issues or suggestions may be addressed to Louis Harkins, list owner, at

louisharkins@... , louisharkins@... , louisharkins@...

..

---------------------------------

[Guest guest]

Hi Alison, I wondered how you and Henry have been doing. My daughter has

always had the sensory problems, then had an onset of OCD when she was about

to turn five, so there was a number of years when she had the sensory

problems but no anxiety, tics, obsessions or compulsions that we could see.

Her sensory problems went from livable to extreme with the OCD onset.

The sensory differences are frequently an additional problem that kids with

OCD may have, along with tics and so on, and the line can certainly blur

which is sensory, which is compulsion or avoidance. Some therapists I have

spoken with believe the sensory issues are anxiety, obsession and

compulsion-related anyway, sort of a subtype or junior version of OCD. I

have no idea if there are kids out there with sensory-only problems that

they eventually outgrow or learn to compensate for, with no other diagnoses.

I remember that Henry was anxious and stressed out when he did not do the

licking. Kids with OCD become anxious when they are prevented from or

resist doing a compulsion, which they do in the first place to catch a break

from their anxiety. I also think I remember he licks varying amounts of

time, until it " feels right " which also makes this seem like a compulsion.

( " Just right, just so " is a common OCD compulsion.) OTOH my daughter, after

OCD hit, became pretty anxious and panicky when her clothes didn't feel

right or some other sensory thing kicked up.

Also, now feet, rain, board, and newspaper have been added, which does seem

like avoidance that has grown stronger/bigger over time as would be expected

of an untreated OCD obsession.

Using ERP with my daughter's sensory problems (mostly things she avoided, or

things she " couldn't stand " , like blue jeans) worked to reduce, then

eliminate her problems. She was also by this time taking an SSRI, which did

help reduce her sensory problems along with the OCD. Have you considered an

SSRI for Henry?

Others have had success in reducing/eliminating sensory issues with

Occupational Therapy techniques. We did not see an Occupational Therapist

so I do not know too much about this approach, only that others have found

it useful.

Take care Alison,

Kathy R. in Indiana, USA

----- Original Message -----

> I have wrote in the past about my son, Henry who is aged 7 and can

> not let his hands get wet or he has to lick them. The specialiat he

> has seen has basically told me i am the one who will be able to help

> him as he is young and we are close!! She has said it is acceptable

> that he only gets his hands and feet wet once a day when i make him

> bath (his feet are also effected now), and that i should just praise

> him when he refrains from licking them, but try to not make a huge

> issue of it. Because he has been consistent with his hands for at

> least 8 months now, and he does not like rain, the feel of board,

> newspaper i was wondering if any of you feel this could 'just' be a

> sensitivity issue as opposed to ocd. any advise would be grately

> appreciated

> Alison

[Guest guest]

thanks Kathy and for your advise, and it is nice to know some one

remembers my son, and actually seems intrested in him, cause the specialists

we have seen certainly weren't. as i said we attended the sessions he went

in alone to see a creative/art therapist, then i went for two sessions and

played with him, while being observed and listened to through a large

mirror!!

Basically they concluded from this that we have a good relationship, i am

the mum and he is the child, and he is an adjusted sociable, polite little

boy. (could have been they were trying to see if he came from a

dysfunctional single mum!!!)

after telling me this they basically told me i should be really happy, and

proud of him, and to go away and do what ever i see right, and they will be

in touch in three months to see if i need any further help.

I have read everyones mail regularly to keep up to date on how you all are

but have not chipped in cause i have not got any advise to give, and there

are experts amongst you.

Henry is still suffering anxiety with his hands when wet and now sometimes

when dry and his feet are the same they can not go on the carpet dry and

they are bad when wet. I am still the same old frustrated mum i was when i

first wrote for advise, the improvement is i suppose i have accepted he

could always suffer from this and at least now he only asks for his hands to

be amputated, he no longer talks of jumping of buildings to stop it. (very

bad sarcasm- meant for the so called specialist!! he has been seeing)

any way moan over, really glad for the continued support of this site, and

periodically it is mentioned that some of you write a book. i for one would

purchase it......

take care Alison

-- Re: (unknown)

Hi Alison, I wondered how you and Henry have been doing. My daughter has

always had the sensory problems, then had an onset of OCD when she was about

to turn five, so there was a number of years when she had the sensory

problems but no anxiety, tics, obsessions or compulsions that we could see.

Her sensory problems went from livable to extreme with the OCD onset.

The sensory differences are frequently an additional problem that kids with

OCD may have, along with tics and so on, and the line can certainly blur

which is sensory, which is compulsion or avoidance. Some therapists I have

spoken with believe the sensory issues are anxiety, obsession and

compulsion-related anyway, sort of a subtype or junior version of OCD. I

have no idea if there are kids out there with sensory-only problems that

they eventually outgrow or learn to compensate for, with no other diagnoses.

I remember that Henry was anxious and stressed out when he did not do the

licking. Kids with OCD become anxious when they are prevented from or

resist doing a compulsion, which they do in the first place to catch a break

from their anxiety. I also think I remember he licks varying amounts of

time, until it " feels right " which also makes this seem like a compulsion.

( " Just right, just so " is a common OCD compulsion.) OTOH my daughter, after

OCD hit, became pretty anxious and panicky when her clothes didn't feel

right or some other sensory thing kicked up.

Also, now feet, rain, board, and newspaper have been added, which does seem

like avoidance that has grown stronger/bigger over time as would be expected

of an untreated OCD obsession.

Using ERP with my daughter's sensory problems (mostly things she avoided, or

things she " couldn't stand " , like blue jeans) worked to reduce, then

eliminate her problems. She was also by this time taking an SSRI, which did

help reduce her sensory problems along with the OCD. Have you considered an

SSRI for Henry?

Others have had success in reducing/eliminating sensory issues with

Occupational Therapy techniques. We did not see an Occupational Therapist

so I do not know too much about this approach, only that others have found

it useful.

Take care Alison,

Kathy R. in Indiana, USA

----- Original Message -----

> I have wrote in the past about my son, Henry who is aged 7 and can

> not let his hands get wet or he has to lick them. The specialiat he

> has seen has basically told me i am the one who will be able to help

> him as he is young and we are close!! She has said it is acceptable

> that he only gets his hands and feet wet once a day when i make him

> bath (his feet are also effected now), and that i should just praise

> him when he refrains from licking them, but try to not make a huge

> issue of it. Because he has been consistent with his hands for at

> least 8 months now, and he does not like rain, the feel of board,

> newspaper i was wondering if any of you feel this could 'just' be a

> sensitivity issue as opposed to ocd. any advise would be grately

> appreciated

> Alison

Our list archives, bookmarks, files, and chat feature may be accessed at:

http://groups.yahoo.com/group// .

Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D., Aureen

Pinto Wagner, Ph.D., and Dan Geller, M.D. Our list moderators are

Birkhan, Castle, Fowler, Kathy Hammes, Joye, Kathy

Mac, Gail Pesses, Kathy , Vivian Stembridge, and Jackie Stout.

Subscription issues or suggestions may be addressed to Louis Harkins, list

owner, at louisharkins@... , louisharkins@... ,

louisharkins@... .

[Guest guest]

Thanks for the advise, i do think of you often and your daughter, in reply

to your question Henry gets really anxious, tearful. fidgety and screw his

hands in to tight fists when he they have been wet, and now he does the same

with his feet, to such an extent that his feet will hurt, both can also be

bad now when they have not been wet, and then they are bad cause they are

too dry!!!

anyway i always seem to ramble when i come on this site, had already wrote a

reply to you and kathy from her letter, but wanted to thank you again for

all the help and support you gave when this first started with Henry, it

seems years ago now.

Take care Alison

-- Re: (unknown)

Dear Alison,

Hello again! As you know, OCD is often accompanied by other disorders,

or

" pieces " of various disorders, and sensory integration disorder is one of

those frequent companions. Henry may be more sensitive to the feeling of

having

something wet on his hands, but unlike other children who avoid an

unpleasant

sensation, he obviously feels the need to lick his hands and feet when they

are

wet. I'm not a doctor, but I would say that is a compulsion. It could also

be

a tic, however. I've forgotten how Henry reacts when prevented from licking,

but that would be a big clue. Children prevented from carrying out a

compulsion usually react with extreme anxiety, which can be expressed as

rage, or

hysteria or any number of ways. Telling a child not to tic doesn't do much -

they

can stop for a minute, but will do it again soon. My daughter has a somewhat

similar issue to Henry's. She used to scratch her scalp constantly and

seemed to

be checking for scabs up there (she once picked at her scalp until she

developed big scabs, and this is a hangover from that period). We eventually

got her

to just run her fingers through her hair against her scalp, which is more

socially acceptable (doesn't look so much like checking for lice!!). She

claims

she can't stop doing it and it soothes her. This may be a tic, or just a

habit,

or it may be a compulsion related to her fears of bugs caught in her hair.

We

worked on the bug thing all summer with ERT and it is largely gone, but the

hands in her hair thing continues. I'm just happy she has quit picking!!

Best wishes,

in NV

[Guest guest]

thanks alot for this advise, having finger and toe nails cut is a huge issue

that i thought all kids hated, it is hard knowing sometimes what is common

behaviour and what is not.

take care Alison

-- Re: (unknown)

My son started with Sensitory Intergration Syndrom, SIS, we could not cut

his nails, brush his hair etc. what worked for us was " face the fear " , we

very slowly started with one issue at a time, held his hands and fingers and

sqeezed them to desensitize them then cut the nails, it is very mild now,

there is a lot of help out there for this syndrom. Good Luck (also, when it

gets bad, they suggested " wieght " to ground them, like a heavy blanket made

from beans - I never did this. I'd hug him very tight, or put my hands on

his shoulders firmly and push down - its easier to do in public without

drawing attention - it calms them down.)

ali7196 wrote:I have wrote in the past about

my son, Henry who is aged 7 and can

not let his hands get wet or he has to lick them. The specialiat he

has seen has basically told me i am the one who will be able to help

him as he is young and we are close!! She has said it is acceptable

that he only gets his hands and feet wet once a day when i make him

bath (his feet are also effected now), and that i should just praise

him when he refrains from licking them, but try to not make a huge

issue of it. Because he has been consistent with his hands for at

least 8 months now, and he does not like rain, the feel of board,

newspaper i was wondering if any of you feel this could 'just' be a

sensitivity issue as opposed to ocd. any advise would be grately

appreciated

Alison

Our list archives, bookmarks, files, and chat feature may be accessed at:

http://groups.yahoo.com/group// .

Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D., Aureen

Pinto Wagner, Ph.D., and Dan Geller, M.D. Our list moderators are

Birkhan, Castle, Fowler, Kathy Hammes, Joye, Kathy

Mac, Gail Pesses, Kathy , Vivian Stembridge, and Jackie Stout.

Subscription issues or suggestions may be addressed to Louis Harkins, list

owner, at louisharkins@... , louisharkins@... ,

louisharkins@... .

---------------------------------

[Guest guest]

Hi Alison, I wondered if you ever contacted the OCD group Obsessive Action

there in England? I keep hoping that someone there might be able to steer

you through the health system and to effective doctors and therapists. What

I read on their site earlier made me think they were up on current

treatments for the disorder and unlikely to direct you to more of the same,

art therapy and a pat on the back for your mother/son relationship. Somehow

the professionals you have seen have failed to understand how distressed

Henry is by his symptoms, and don't seem to know what to do next since they

have determined that you are an adequate Mum...I doubt the advice that you

should be proud of him was helpful. :-/ I had plenty of this problem in

the early months following my daughter's onset, and sometimes wonder if it

isn't a particular hell reserved for young children with OCD and their

parents. I felt I was expected to be relieved that they had determined that

I wasn't abusing her, then take her home and be happy while ignoring her

misery.

My sister who lives in Scotland muddled around for years waiting on lists

and seeing unhelpful doctors for a different health problem. Finally, fed

up with living with her symptoms, she sought private care and had the minor

operation she needed within a month. Any chance of seeking private

assessment/treatment for Henry?

Finally, I wonder if you may have to do as I did when I was in your

situation. Although I had found a competent psychiatrist to manage Kel's

meds and symptoms, I was unable for over three years to find an effective

CBT/ERP therapist for her due to her young age. Using advice and direction

from this list and a therapy manual, " OCD in Children and Adolescents " by

March and Mulle, I functioned as her " therapist " . Though not an

ideal plan, it may be something to consider while you soldier on in trying

to find competent care for Henry. As I mentioned in my first post, ERP can

work whether Henry's problem is sensory-related or OCD, it did work for my

child and she was freed from her agonizing clothing, food and etc. problems.

All this time later is still sometimes amazes me when she quickly throws on

clothes and heads out the door; for a very long time dressing in anything

meant a half-hour or more of hysteria and panic.

Henry's situation tugs at my heart, it is so similar to the one we endured.

My child was considering cutting out her eyes to make it stop...I also

thought this was an improvement over her earlier thought, to run into

traffic and die to get away from her misery. Such a burden for little kids

and so very horrifying for us parents. Then add in the unhelpful helping

professionals who waste massive amounts of time and hope without any payoff

in the end, it's hard to imagine a more upsetting and frustrating situation

for you and your boy.

Keep writing Alison,

Kathy R. in Indiana

----- Original Message -----

> thanks Kathy and for your advise, and it is nice to know some one

> remembers my son, and actually seems intrested in him, cause the

specialists

> we have seen certainly weren't. as i said we attended the sessions he went

> in alone to see a creative/art therapist, then i went for two sessions and

> played with him, while being observed and listened to through a large

> mirror!!

> Basically they concluded from this that we have a good relationship, i am

> the mum and he is the child, and he is an adjusted sociable, polite little

> boy. (could have been they were trying to see if he came from a

> dysfunctional single mum!!!)

> after telling me this they basically told me i should be really happy, and

> proud of him, and to go away and do what ever i see right, and they will

be

> in touch in three months to see if i need any further help.

> I have read everyones mail regularly to keep up to date on how you all

are

> but have not chipped in cause i have not got any advise to give, and there

> are experts amongst you.

> Henry is still suffering anxiety with his hands when wet and now sometimes

> when dry and his feet are the same they can not go on the carpet dry and

> they are bad when wet. I am still the same old frustrated mum i was when i

> first wrote for advise, the improvement is i suppose i have accepted he

> could always suffer from this and at least now he only asks for his hands

to

> be amputated, he no longer talks of jumping of buildings to stop it. (very

> bad sarcasm- meant for the so called specialist!! he has been seeing)

> any way moan over, really glad for the continued support of this site, and

> periodically it is mentioned that some of you write a book. i for one

would

> purchase it......

> take care Alison

[Guest guest]

Dear ,

Have you shared these thoughts with your son's prescribing doc? I'm

wondering why he/she isn't tapering down on the Celexa and starting the Prozac

simultaneously? We have done that with several medications with no problems,

and

have avoided that awful crash when they aren't on a therapeutic dose of

anything. I'd certainly ask if there is anything you or the doc can do to help

you

through this transition. Some doc prescribe non-addicting anti-anxiety

medications for the short term if things are really bad.

Your son's behavior is typical for untreated OCD. Perhaps you can explain

to him that your family can't accomodate his compulsions while waiting for

his new medication to kick in, and that this will upset him. You might agree on

a reduced number (if repetitive compulsions are the problem) or agree on a

response to his demands sometime when he is NOT upset. It won't be easy, and he

will blow up, probably, because of his anxiety - but you can't have the family

coming apart at the seams while you wait.

The most important thing is to take care of yourself and have faith - this

too shall pass!!

Best wishes,

in NV

[Guest guest]

Thank you for the reply. Henry is still licking his hands following them

getting wet, though this is usually only once a day when i make him have a

bath the rest of the time he avoids his hands getting wet at all costs. I go

to discuss him with the mental health team every three months but they just

say because he is sociable and good at school they do not want to make a big

issue out of his hands, as his life is normal. i have pointed out that i don

t think it is " normal " to never wash in the morning for a year, and that he

will lick them even if he has the most disgusting things on them when they

are wet, it was once a dead frog!! and this repulses Henry but he can not

help it, he is like an addict when i try to get him to stop becoming very

upset and at times annoyed with me, saying i don't understand.

Another issue now is that although he will lick his hands when they have

anything on he will not go to anyone else toilet if he needs to have a poo.

This has resulted in him actually dirtying himself twice in the last four

months as he will only sit on our toilet at home.he has tried to plan the

day so that from school he can come home in case he needs the toilet before

going to my friends, but i refuse to go along with this as she is very clean

and i would use her toilet. (sorry about the context of this but it could

turn in to a really big issue as he is not planning his life around being

able to get home for the toilet it is not realistic).

it is also something new for him to be this extreme and not something most

seven year olds worry about.

Anyway i am glad your daughter has managed to develop her scalp picking

into something that looks a lot more sociable and thanks again for your

advise i really appreciate it.

i am not going to just accept that my son can not touch water or has to

revolve his life around our toilet, i love him to much for that.

take care Alison

-- Re: (unknown)

Dear Alison,

Hello again! As you know, OCD is often accompanied by other disorders,

or

" pieces " of various disorders, and sensory integration disorder is one of

those frequent companions. Henry may be more sensitive to the feeling of

having

something wet on his hands, but unlike other children who avoid an

unpleasant

sensation, he obviously feels the need to lick his hands and feet when they

are

wet. I'm not a doctor, but I would say that is a compulsion. It could also

be

a tic, however. I've forgotten how Henry reacts when prevented from licking,

but that would be a big clue. Children prevented from carrying out a

compulsion usually react with extreme anxiety, which can be expressed as

rage, or

hysteria or any number of ways. Telling a child not to tic doesn't do much -

they

can stop for a minute, but will do it again soon. My daughter has a somewhat

similar issue to Henry's. She used to scratch her scalp constantly and

seemed to

be checking for scabs up there (she once picked at her scalp until she

developed big scabs, and this is a hangover from that period). We eventually

got her

to just run her fingers through her hair against her scalp, which is more

socially acceptable (doesn't look so much like checking for lice!!). She

claims

she can't stop doing it and it soothes her. This may be a tic, or just a

habit,

or it may be a compulsion related to her fears of bugs caught in her hair.

We

worked on the bug thing all summer with ERT and it is largely gone, but the

hands in her hair thing continues. I'm just happy she has quit picking!!

Best wishes,

in NV

[Guest guest]

Hi Alison, it is good to hear from you again though I'm sorry to read that

Henry is still having his problems. It is weird that twice now you have

posted a day or so later after I had wondered how you and Henry are getting

on.

It seems obvious that until or unless Henry is unable to function in school

and is shunned by his friends, his care providers are not going to see his

symptoms as serious. Unfortunately it's not too uncommon for kids with even

severe OCD to still function at school since it can work as something of a

distraction from the thoughts for them. And I can tell you from experience

that as kids get a bit older, they get much less accepting of odd or unusual

behavior

and it seems to take very little to find yourself on

the outside of your group. But as his Mom of course you don't want to wait

until these things happen!

I may have suggested this before, but next time you talk to these folks you

may

want to focus on *Henry's* distress, the ways the behaviors are interfering

with his life, the play dates he may have missed because of having to only

use your own toilet, etc. I am assuming Henry is distressed by the

behaviors and wants them gone, that flies in the face of the health team's

assessment that his life is normal and he is unbothered by all this. You

could even keep short notes with dates of whenever the behaviors cause Henry

problems, and certainly any issues that do arise at school due to his

avoiding getting his hands wet or using the toilet there. If Henry is like

my child and many, he probably sits there during visits apparently

unperturbed by the licking problem and the rest of it. :-/

Take care Alison, thanks for updating us,

Kathy R. in Indiana

----- Original Message -----

> Thank you for the reply. Henry is still licking his hands following them

> getting wet, though this is usually only once a day when i make him have a

> bath the rest of the time he avoids his hands getting wet at all costs. I

go

> to discuss him with the mental health team every three months but they

just

> say because he is sociable and good at school they do not want to make a

big

> issue out of his hands, as his life is normal. i have pointed out that i

don

> t think it is " normal " to never wash in the morning for a year, and that

he

> will lick them even if he has the most disgusting things on them when they

> are wet, it was once a dead frog!! and this repulses Henry but he can not

> help it, he is like an addict when i try to get him to stop becoming very

> upset and at times annoyed with me, saying i don't understand.

> Another issue now is that although he will lick his hands when they have

> anything on he will not go to anyone else toilet if he needs to have a

poo.

> This has resulted in him actually dirtying himself twice in the last four

> months as he will only sit on our toilet at home.he has tried to plan the

> day so that from school he can come home in case he needs the toilet

before

> going to my friends, but i refuse to go along with this as she is very

clean

> and i would use her toilet. (sorry about the context of this but it could

> turn in to a really big issue as he is not planning his life around being

> able to get home for the toilet it is not realistic).

> it is also something new for him to be this extreme and not something

most

> seven year olds worry about.

> Anyway i am glad your daughter has managed to develop her scalp picking

> into something that looks a lot more sociable and thanks again for your

> advise i really appreciate it.

> i am not going to just accept that my son can not touch water or has to

> revolve his life around our toilet, i love him to much for that.

> take care Alison

[Guest guest]

Hi there...it was on NBC nightly news...Sorry i only listened with half

an ear but it was about Crestor....how some folks just cannot take this

drug...showed a man hospitalized for severe muscle pain after taking

the drug a short time...it did mention the money that the Pharms are

pulling in selling statin drugs...

Jan

Ed & Dawn Gundy wrote:

Did anyone see the program last night on TV? It turned out that I

missed it completely. If anyone saw it, please provide a bit of the

information that was discussed and also which network it was on. We

might be able to pull it off that network's web site and post it here.

Ed

-- Cold Water Farm Primitives - http://www.geocities.com/coldwaterfarm

[Guest guest]

Hi Dan how are you? I have just joined the kombucha yahoo group. I have

only been brewing kombucha for around 3 months. It is now almost winter

here in Australia NSW and I'm not sure how to keep my kombucha temps up, I

thought of trying an electric blanket but I don't know if that will work.

Anyway take care

Lee-Ann

(unknown)

hello

---------------------------------

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

[Guest guest]

Hi, .

Welcome. This is a good group. Lots of good

information and lively discussion. Look forward to

hearing from you soon.

Rich

--- wrote:

> Hello:

> Thanks for approving my membership. I purchased my

> first Bullworker in July, 1976. I have trained

> faithfully with it on and off( when I wasn't lifting

> in the gym, or when I traveled) The on I presently

> own is my third. I loaned the first to a friend, who

> loaned it to another friend. The second, purchased

> in 1980 was the X5. I broke that one two or three

> years later. I managed to get the old green handled

> steel type from a friend. I've had that one since. I

> do all of the exercises six days a week. Thanks for

> the links to the charts. I had miss-placed this last

> one.

>

>

>

>

________________________________________________________________________________\

____

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

________________________________________________________________________________\

____

Get easy, one-click access to your favorites.

Make Yahoo! your homepage.

http://www.yahoo.com/r/hs

[Guest guest]

Sinse I no longer post much, I want to take time now to wish all of my friends here, that is, all of you, a very MERRY CHRISTMAS! God Bless you all. Rich wrote: Hi, .Welcome. This is a good group. Lots of goodinformation and lively discussion. Look forward tohearing from you soon.Rich--- <taeboson> wrote:> Hello:> Thanks for approving my

membership. I purchased my> first Bullworker in July, 1976. I have trained> faithfully with it on and off( when I wasn't lifting> in the gym, or when I traveled) The on I presently> own is my third. I loaned the first to a friend, who> loaned it to another friend. The second, purchased> in 1980 was the X5. I broke that one two or three> years later. I managed to get the old green handled> steel type from a friend. I've had that one since. I> do all of the exercises six days a week. Thanks for> the links to the charts. I had miss-placed this last> one.> > > >__________________________________________________________> Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs__________________________________________________________Get easy, one-click access to your favorites. Make Yahoo! your homepage.http://www.yahoo.com/r/hs

Be a better pen pal. Text or chat with friends inside Yahoo! Mail. See how.

[Guest guest]

After s EEG, the dr called me that night to tell me it was not normal and they seen seizure activity. I hope that your neuro appt comes soon. When is it?

Stacie B

Aurora IL

I don't know what kind , he was throwing up and unresponsive and his eyes were kind of crossed he was kind of shakey but it could have been from throwing up ? , he's not on meds for ityet . Did your EEG say it was not normal ? thats all the doctor would tell me , so I have towait until I go to the neurologist . I hate waiting !

(unknown)

my son had a eeg test done and it was not normal , We think he may have had a seizure . We have to wait until the 18th to see a neurologist .I'm very worried ! Does anyone have any advise on seizures ? I don't want to look at Web Md or Google because I am too scared to be bombarded with too much information and scare myself too death . Can he have one anytime and how do I sleep ?

Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos.