Re: (unknown)

[Guest guest]

Dear Amy:

This is a tough question. In the case of my 7-year-old, Charlie (mild PDD-NOS/ Aspergers), it has gotten better since he was four. With maturity and patience (and the passing of time), he has made great strides. Having him around other children as much as possible has helped him the most, even though it has been difficult at times.

I can also relate to the problems with your older son. I have a brilliant NT 10-year-old. He has next to no patience with Charlie, as he thinks Charlie does the things he does strictly to irritate him. It helps with my older one if I spend as much time as possible alone just with him. But, honestly, they do fight like cats and dogs sometimes. Good luck to you. Try to have faith that it will get better. That is what gets me through.

Best regards,

Betty Jo Marshall

(unknown)

Hi All!

Just wanted to know how other parents deal with major behavoir problems with their Autistic child? My child is 4 with PDD-NOS. He acts more like a 2 year old. I love my child very much, but he is so difficult to handle almost all of the time. He spits, hits, destroys, has tantrums, and is just plain mean to family members.

My husband and I work opposite shifts so that one of us is always with our son, but it is like we are single parents. Some nights I just can't handle the bad behavior. And no I have no help from other family members.

I know it's easy say just be patient, and I have been - but it is difficult not to lose it with him.

Any advice?

He is in special ed pres-school and is learning to talk, and he does go to all the necessary therapies! And he is on meds! Still, he is out of control.

If anyone has any positive suggestions please let me know.

I could do without the negativity though!

I also have a 8 year old son who has difficulty with his brother.

Thanks for listening!

Amy

[Guest guest]

Dear Amy:

This is a tough question. In the case of my 7-year-old, Charlie (mild PDD-NOS/ Aspergers), it has gotten better since he was four. With maturity and patience (and the passing of time), he has made great strides. Having him around other children as much as possible has helped him the most, even though it has been difficult at times.

I can also relate to the problems with your older son. I have a brilliant NT 10-year-old. He has next to no patience with Charlie, as he thinks Charlie does the things he does strictly to irritate him. It helps with my older one if I spend as much time as possible alone just with him. But, honestly, they do fight like cats and dogs sometimes. Good luck to you. Try to have faith that it will get better. That is what gets me through.

Best regards,

Betty Jo Marshall

(unknown)

Hi All!

Just wanted to know how other parents deal with major behavoir problems with their Autistic child? My child is 4 with PDD-NOS. He acts more like a 2 year old. I love my child very much, but he is so difficult to handle almost all of the time. He spits, hits, destroys, has tantrums, and is just plain mean to family members.

My husband and I work opposite shifts so that one of us is always with our son, but it is like we are single parents. Some nights I just can't handle the bad behavior. And no I have no help from other family members.

I know it's easy say just be patient, and I have been - but it is difficult not to lose it with him.

Any advice?

He is in special ed pres-school and is learning to talk, and he does go to all the necessary therapies! And he is on meds! Still, he is out of control.

If anyone has any positive suggestions please let me know.

I could do without the negativity though!

I also have a 8 year old son who has difficulty with his brother.

Thanks for listening!

Amy

[Guest guest]

Hello, I’m sorry to bother you, but

what does “NT” stand for?

Josh

-----Original

Message-----

From: Betty Jo Marshall

Sent: Thursday, May 18, 2000 8:55

PM

To: autism-aspergersegroups

Subject: Re:

(unknown)

Dear Amy:

This is a tough question. In the case of my

7-year-old, Charlie (mild PDD-NOS/ Aspergers), it has gotten better since he

was four. With maturity and patience (and the passing of time), he has made

great strides. Having him around other children as much as possible has helped

him the most, even though it has been difficult at times.

I can also relate to the problems with your

older son. I have a brilliant NT 10-year-old. He has next to no patience with

Charlie, as he thinks Charlie does the things he does strictly to irritate him.

It helps with my older one if I spend as much time as possible alone just with

him. But, honestly, they do fight like cats and dogs sometimes. Good luck to

you. Try to have faith that it will get better. That is what gets me through.

Best regards,

Betty Jo Marshall

-----

Original Message -----

From: Amy Schilling

To: autism-aspergersegroups

Sent: Thursday, May 18, 2000

9:50 PM

Subject:

(unknown)

Hi All!

Just wanted to know how other

parents deal with major behavoir problems with their Autistic child? My

child is 4 with PDD-NOS. He acts more like a 2 year old. I love my

child very much, but he is so difficult to handle almost all of the time.

He spits, hits, destroys, has tantrums, and is just plain mean to family

members.

My husband and I work opposite

shifts so that one of us is always with our son, but it is like we are single

parents. Some nights I just can't handle the bad behavior. And no I

have no help from other family members.

I know it's easy say just be

patient, and I have been - but it is difficult not to lose it with him.

Any advice?

He is in special ed

pres-school and is learning to talk, and he does go to all the necessary

therapies! And he is on meds! Still, he is out of control.

If anyone has any positive

suggestions please let me know.

I could do without the

negativity though!

I also have a 8 year old son

who has difficulty with his brother.

Thanks for listening!

Amy

[Guest guest]

Hello, I’m sorry to bother you, but

what does “NT” stand for?

Josh

-----Original

Message-----

From: Betty Jo Marshall

Sent: Thursday, May 18, 2000 8:55

PM

To: autism-aspergersegroups

Subject: Re:

(unknown)

Dear Amy:

This is a tough question. In the case of my

7-year-old, Charlie (mild PDD-NOS/ Aspergers), it has gotten better since he

was four. With maturity and patience (and the passing of time), he has made

great strides. Having him around other children as much as possible has helped

him the most, even though it has been difficult at times.

I can also relate to the problems with your

older son. I have a brilliant NT 10-year-old. He has next to no patience with

Charlie, as he thinks Charlie does the things he does strictly to irritate him.

It helps with my older one if I spend as much time as possible alone just with

him. But, honestly, they do fight like cats and dogs sometimes. Good luck to

you. Try to have faith that it will get better. That is what gets me through.

Best regards,

Betty Jo Marshall

-----

Original Message -----

From: Amy Schilling

To: autism-aspergersegroups

Sent: Thursday, May 18, 2000

9:50 PM

Subject:

(unknown)

Hi All!

Just wanted to know how other

parents deal with major behavoir problems with their Autistic child? My

child is 4 with PDD-NOS. He acts more like a 2 year old. I love my

child very much, but he is so difficult to handle almost all of the time.

He spits, hits, destroys, has tantrums, and is just plain mean to family

members.

My husband and I work opposite

shifts so that one of us is always with our son, but it is like we are single

parents. Some nights I just can't handle the bad behavior. And no I

have no help from other family members.

I know it's easy say just be

patient, and I have been - but it is difficult not to lose it with him.

Any advice?

He is in special ed

pres-school and is learning to talk, and he does go to all the necessary

therapies! And he is on meds! Still, he is out of control.

If anyone has any positive

suggestions please let me know.

I could do without the

negativity though!

I also have a 8 year old son

who has difficulty with his brother.

Thanks for listening!

Amy

[Guest guest]

>

>Hello, I'm sorry to bother you, but what does " NT " stand for?

>

>Josh

Hi Josh

NT stands for Neuro Typical another way of saying normal. It comes from a

satirical web site run by an Aspie treating normalicy as a disease with

symptoms from an autistic point of view.

Ric

BTW your email is followed by a huge amount of mark up code. Enough that i

recieved your email in 2 portions. Is there anyway you can keep from

sending html code to the list? Text only?

[Guest guest]

>

>Hello, I'm sorry to bother you, but what does " NT " stand for?

>

>Josh

Hi Josh

NT stands for Neuro Typical another way of saying normal. It comes from a

satirical web site run by an Aspie treating normalicy as a disease with

symptoms from an autistic point of view.

Ric

BTW your email is followed by a huge amount of mark up code. Enough that i

recieved your email in 2 portions. Is there anyway you can keep from

sending html code to the list? Text only?

[Guest guest]

rferris@... wrote:

> >

> >Hello, I'm sorry to bother you, but what does " NT " stand for?

> >

> >Josh

>

> Hi Josh

>

> NT stands for Neuro Typical another way of saying normal. It comes from a

> satirical web site run by an Aspie treating normalicy as a disease with

> symptoms from an autistic point of view.

>

> Ric

Um, I beg to differ. The definition is correct, but the etymology isn't.

I've been using NT

and it's sister acronym NDA (not diagnosed with anything) since I first saw

them on a private

autism list in 1993. It was a shorthand way of saying neurotypical, and is

not another way of saying normal.

The idea is that there is no such thing as normal, a stance in which I

believe whole-heartedly, because if you accept the concept of normalcy, then

you must also accept the idea that anything other than that is abnormal. My

son is not abnormal, he's just not typical of your average person (another

mythic creature).

" Normal is a setting on the dryer " IOW. And I defy anyone to

show me a single normal person anywhere in the world. " Typical " is the word

that a lot of public schools

came to use in the 80's and early 90's, and neurotypical is just an extension

of that.

Sorry to get on the soapbox, but sometimes you just gotta.

Annie, who loves ya annie@...

--

If Bill Gates had a nickel for every time Windows crashed...

Oh wait! He does! --- anon.

[Guest guest]

rferris@... wrote:

> >

> >Hello, I'm sorry to bother you, but what does " NT " stand for?

> >

> >Josh

>

> Hi Josh

>

> NT stands for Neuro Typical another way of saying normal. It comes from a

> satirical web site run by an Aspie treating normalicy as a disease with

> symptoms from an autistic point of view.

>

> Ric

Um, I beg to differ. The definition is correct, but the etymology isn't.

I've been using NT

and it's sister acronym NDA (not diagnosed with anything) since I first saw

them on a private

autism list in 1993. It was a shorthand way of saying neurotypical, and is

not another way of saying normal.

The idea is that there is no such thing as normal, a stance in which I

believe whole-heartedly, because if you accept the concept of normalcy, then

you must also accept the idea that anything other than that is abnormal. My

son is not abnormal, he's just not typical of your average person (another

mythic creature).

" Normal is a setting on the dryer " IOW. And I defy anyone to

show me a single normal person anywhere in the world. " Typical " is the word

that a lot of public schools

came to use in the 80's and early 90's, and neurotypical is just an extension

of that.

Sorry to get on the soapbox, but sometimes you just gotta.

Annie, who loves ya annie@...

--

If Bill Gates had a nickel for every time Windows crashed...

Oh wait! He does! --- anon.

[Guest guest]

Dear Josh:

Funny you should ask what NT stands for, because I didn't know myself until a couple of weeks ago when I also had to ask someone on the list!! I was told that it means "neuro typical", which I assume means that you have no known neurological problem. I suppose you could just say "presumed normal" or "typical."

Best regards,

Betty Jo Marshall

(unknown)

Hi All!

Just wanted to know how other parents deal with major behavoir problems with their Autistic child? My child is 4 with PDD-NOS. He acts more like a 2 year old. I love my child very much, but he is so difficult to handle almost all of the time. He spits, hits, destroys, has tantrums, and is just plain mean to family members.

My husband and I work opposite shifts so that one of us is always with our son, but it is like we are single parents. Some nights I just can't handle the bad behavior. And no I have no help from other family members.

I know it's easy say just be patient, and I have been - but it is difficult not to lose it with him.

Any advice?

He is in special ed pres-school and is learning to talk, and he does go to all the necessary therapies! And he is on meds! Still, he is out of control.

If anyone has any positive suggestions please let me know.

I could do without the negativity though!

I also have a 8 year old son who has difficulty with his brother.

Thanks for listening!

Amy

[Guest guest]

Dear Josh:

Funny you should ask what NT stands for, because I didn't know myself until a couple of weeks ago when I also had to ask someone on the list!! I was told that it means "neuro typical", which I assume means that you have no known neurological problem. I suppose you could just say "presumed normal" or "typical."

Best regards,

Betty Jo Marshall

(unknown)

Hi All!

Just wanted to know how other parents deal with major behavoir problems with their Autistic child? My child is 4 with PDD-NOS. He acts more like a 2 year old. I love my child very much, but he is so difficult to handle almost all of the time. He spits, hits, destroys, has tantrums, and is just plain mean to family members.

My husband and I work opposite shifts so that one of us is always with our son, but it is like we are single parents. Some nights I just can't handle the bad behavior. And no I have no help from other family members.

I know it's easy say just be patient, and I have been - but it is difficult not to lose it with him.

Any advice?

He is in special ed pres-school and is learning to talk, and he does go to all the necessary therapies! And he is on meds! Still, he is out of control.

If anyone has any positive suggestions please let me know.

I could do without the negativity though!

I also have a 8 year old son who has difficulty with his brother.

Thanks for listening!

Amy

[Guest guest]

Dear Josh:

Funny you should ask what NT stands for, because I didn't know myself until a couple of weeks ago when I also had to ask someone on the list!! I was told that it means "neuro typical", which I assume means that you have no known neurological problem. I suppose you could just say "presumed normal" or "typical."

Best regards,

Betty Jo Marshall

(unknown)

Hi All!

Just wanted to know how other parents deal with major behavoir problems with their Autistic child? My child is 4 with PDD-NOS. He acts more like a 2 year old. I love my child very much, but he is so difficult to handle almost all of the time. He spits, hits, destroys, has tantrums, and is just plain mean to family members.

My husband and I work opposite shifts so that one of us is always with our son, but it is like we are single parents. Some nights I just can't handle the bad behavior. And no I have no help from other family members.

I know it's easy say just be patient, and I have been - but it is difficult not to lose it with him.

Any advice?

He is in special ed pres-school and is learning to talk, and he does go to all the necessary therapies! And he is on meds! Still, he is out of control.

If anyone has any positive suggestions please let me know.

I could do without the negativity though!

I also have a 8 year old son who has difficulty with his brother.

Thanks for listening!

Amy

[Guest guest]

Welcome Stacie and Sherry, I would also like to welcome you. I am usually

pretty good about welcoming all new members and asking everyone who hasn't

done so to introduce themselves. When I say welcome to all new members, if

you are new then that would include you, so I'm not exactly sure what you

mean by no one said hi when you joined. I have posted many greetings to all.

Evidently they must have missed you. so if you feel as if you were

overlooked, then please accept my apologies. i agree with you, ask questions,

because that is how we learn. i always welcome all, and always ask the rest

of the members to please post an update. I can't always mention every name,

but all usually means everyone where I come from. Hope everyone is having a

great day, and look forward to hearing some updates from everyone. O.k.

Trish, Ric, freestone, where are you all? I don't mean to sound sarcastic or

rude, because I started this list as a way of parents to share. I have 4

special needs boys myself, and we all need to support each other. That's what

I love about this list. Everyone is very supportive, and everyone is welcome

to share anything or to ask anything, even to email me privatelyI have always

stressed this. Well got to run, look forward to hearing from all, God bless,

Sharon (moderator)

[Guest guest]

Welcome Stacie and Sherry, I would also like to welcome you. I am usually

pretty good about welcoming all new members and asking everyone who hasn't

done so to introduce themselves. When I say welcome to all new members, if

you are new then that would include you, so I'm not exactly sure what you

mean by no one said hi when you joined. I have posted many greetings to all.

Evidently they must have missed you. so if you feel as if you were

overlooked, then please accept my apologies. i agree with you, ask questions,

because that is how we learn. i always welcome all, and always ask the rest

of the members to please post an update. I can't always mention every name,

but all usually means everyone where I come from. Hope everyone is having a

great day, and look forward to hearing some updates from everyone. O.k.

Trish, Ric, freestone, where are you all? I don't mean to sound sarcastic or

rude, because I started this list as a way of parents to share. I have 4

special needs boys myself, and we all need to support each other. That's what

I love about this list. Everyone is very supportive, and everyone is welcome

to share anything or to ask anything, even to email me privatelyI have always

stressed this. Well got to run, look forward to hearing from all, God bless,

Sharon (moderator)

[Guest guest]

Welcome Stacie and Sherry, I would also like to welcome you. I am usually

pretty good about welcoming all new members and asking everyone who hasn't

done so to introduce themselves. When I say welcome to all new members, if

you are new then that would include you, so I'm not exactly sure what you

mean by no one said hi when you joined. I have posted many greetings to all.

Evidently they must have missed you. so if you feel as if you were

overlooked, then please accept my apologies. i agree with you, ask questions,

because that is how we learn. i always welcome all, and always ask the rest

of the members to please post an update. I can't always mention every name,

but all usually means everyone where I come from. Hope everyone is having a

great day, and look forward to hearing some updates from everyone. O.k.

Trish, Ric, freestone, where are you all? I don't mean to sound sarcastic or

rude, because I started this list as a way of parents to share. I have 4

special needs boys myself, and we all need to support each other. That's what

I love about this list. Everyone is very supportive, and everyone is welcome

to share anything or to ask anything, even to email me privatelyI have always

stressed this. Well got to run, look forward to hearing from all, God bless,

Sharon (moderator)

[Guest guest]

No you are right. Get the book OCD in children and adolescents by Dr.

March and read it or just go to any informative site re symptoms of ocd.

Best of luck to you...diagnosing is a long path and much of it is obscured

by our desire as parents to wish it to be something else.

Lynne

>

>Reply-To:

>To:

>Subject: (unknown)

>Date: Tue, 19 Aug 2003 16:59:55 -0000

>

>in answer to Lyn or s question my son is 6 years of age. the

>doctor says he has OCD and referred him to a Mental Health Team

>where by i was told by the specialist to basically ignore the

>behaviour and he was told it does not matter and he does not need to

>do it.

>this behaviour is - that when his hands have got wet they do not

>feel right, and he has to lick them until they do, this can take

>anything from ten minutes to a couple of hours. he has always not

>liked the wrinkling of his skin after a bath, but this went from me

>noticing he was licking them to in a couple of weeks him not being

>able to wash them. i can know get him to wash them but can not avoid

>the licking. (also sometimes on washing them he puts a cross in the

>soap on the palm of his hand-to keep him safe, he says).After asking

>for advice on these pages, and my son disclosing last week that if

>he does not lick them we may be burgled,also i know that when he

>returns to school after the summer holidays if this is not dealt

>with, he will stop washing them again so as not to be seen licking

>them in front of his friends, i have rang the specialist to try and

>talk and discuss another way to deal with this, so far i have had no

>reply. What you all said does make sense about other people not

>understanding because i can only just get my head round it and still

>have doubts over whether he has OCD, but if i am honest most of the

>time i think he has, then i think, when friends react as they have,

>is it me, am i looking for something to be wrong with him and is he

>just going through a stage and manipulating me in the process.

>the joys of parenthood, thanks for all listening

>

_________________________________________________________________

<b>Get MSN 8</b> and help protect your children with advanced parental

controls. http://join.msn.com/?page=features/parental

[Guest guest]

Alison, is it possible for you to go to another doctor? I don't know how

your system works--can you go back to the doctor who sent you to the specialist?

By telling your son over and over again that the house hasn't been broken

into, you could actually be encouraging another complusion. Some kids ask for

constant reassurance and that is a symptom as well. Don't give up--there is

relief somewhere for you and your son. Kelley in NV

[Guest guest]

Hi Ali:

Using logic to counteract our loved one's urges to perform compulsions

is frankly a waste of time and effort. OCD is so tricky that it laughs

at logic. We found using paradoxical humor was much more helpful than

explaining logic. Our kids usually have enough insight about their

symptoms that they know that they are not likely nor logical. However

OCD is cruel and makes them feel uncertain and tells them they must

perform compulsions or else....

Feeling anxious about a sick child who is not getting the right

treatment is a normal response. It is also common for family members of

those with OCD to also suffer from a variety of anxiety disorders. I

have GAD - generalized anxiety disorder - and have been treated with

E & RP for this and it has been very helpful.

Having lived in both England and the US I can tell you that disagreeing

with experts is not a socially accepted behavior in either country :-)

All kidding aside, we are really the experts on our children, and

sometimes this can put us at cross purposes with a treatment provider.

I encourage you to contact Obsessive Action and find other parents with

kids with OCD and a support group where you can get moral support from

others in the same situation. When we do not feel so alone, we get the

courage to find what our kids need, even in the face of " experts " who

may be mistaken.

Getting an official diagnosis is usually the starting point in getting

help from any bureaucracy. Then you will want to ask for some treatment

goals and timelines so you can track Henry's progress in bossing back

OCD.

When you use paradoxical humor about OCD it makes it feel less scary.

You need to warn Henry you are going to use this technique and encourage

him to do the same thing. It needs to be respectful, but in the same

way young children joke about monsters to make them less scary this

technique can help turn around everyone's fear of OCD in the family.

For example, you might want to suggest to Henry that the local burglars

better watch out as everyone will be licking their hands and the

burglars don't stand a chance at having a successful break-in in the

neighborhood. It has to be said in a lighthearted way and signals to

Henry that OCD is being silly and is not something to be feared.

My son had lots of fears about killing me. So I would joke with him

that we were both dead already and only communicating through the

psychic 900 network. Then he knew I was teasing OCD and not him, and it

was easier for him to recognize that his fears were not based in

reality. After a while the family can really get going with making

jokes and things lighten up.

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

kathy.hi@...

-Original Message-----

From: ali7196

Sent: Wednesday, August 20, 2003 1:29 AM

To:

Subject: (unknown)

Spoke to Henrys specialist today on the phone about ignoring his

handlicking and that he has now said we will be burgled if he does

not do it. I have expressed my concern that when he returns to

school he will stop washing his hands again.

She praised me for pointing out that for 6 years he has not licked

his hands and we have not been burgled but again repeated that i

should ignore this behaviour (the hand licking) and concentrate on

Henrys postive personality. This she said will keep my anxiety down,

not that i have an anxiety problem. I feel worse now than i did

before. After hearing everyones advise i was hopeful that we could

start some kind of therapy, and i feel like a right wimp just

agreeing with everything she said.

I am really grateful for everyones advise but would particularly

welcome some from some one in Englad where it is diffreent with not

having to go through insurance and everything. Also it is really

frowned upon here to not agree with a specialist.

She is going to be intouch next week before henry returns to school

and has said i may need to go back in to discuss things if i feel

they are not getting any better. This time i really need an action

plan and to know exactly what i want from her for henry. Do i ask

for a diagnosis to be made by her? In three months our life seems to

have been turned upside down, and i feel obsessive about finding out

everything there is to know about OCD and how best to help my son.

Any advice is gratefully received, and thanks for all your support

so far.

Alison

[Guest guest]

> We found using paradoxical humor was much more helpful than

> explaining logic.

I agree. I have to say that humor has been THE best way to handle 's

OCD and intrusive thoughts.

An example, thinks he has a huge freakishly big head (sounds

funny...but it is VERY traumatic for ). He would constantly ask " Mom,

is my head weird? " or " Mom, does my head look big?? " . After awhile, I got

tired of reassuring him...and I just looked at him, and said

over-dramatically " OH MY GOD!!! ITS HUUUUUUUGE!!!!!! How the heck did you

get through your bedroom door this morning!??! " We both had a big laugh,

and it seemed to ease his tension ALOT.

I'm not saying that this works for every single one of his worries...but, if

he's repeating the same worry over and over...it does help. He KNOWS he has

OCD and he KNOWS that his thoughts are not rational. He still can't help

asking or thinking about them. Dealing with them with a bit of humor lets

him know that even though OCD " sucks " ...its not the end of the world and we

can deal with it and get through it.

--Tina

[Guest guest]

My pharmacist told me about a coming dna? test (using swabbed cells from inner

cheek) that will give on the spot? info on med metabolism and which meds would

be best and which to avoid for a particular person. As I understood this would

not be specific to psych meds though, also will be some years in the future.

I haven't heard of CAT scans for determining med dosage before, this is new to

me.

Kathy R. in Indiana

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

From:

,

I read something about that also. It might have been in Medscape

that there was an article. Either that or I saw it in a " google "

search for articles on OCD.

I can't recall if it was dosage related. But I think it might have

also pertained to which medication will work best on a person for

treatment.

> I also have a question. Someone told me that they saw something on

> t.v. about future treatment for ocd. They said in about 5 years

from

> now they would be able to do a cat scan on patients and be able to

> tell a great deal about the individuals ocd and know the exact

dosage

> of medication that person would need. Does anyone here know

anything

> about this? Thanks.

[Guest guest]

Don't know the difference between all the types of scans but here's a

portion of one article I'd read and this research was done using

Paxil:

" The study demonstrates the potential of functional brain imaging to

predict how a patient will respond to treatment, " said lead

investigator Dr. Sanjaya Saxena, director of the UCLA

Neuropsychiatric Institute's OCD Research Program and associate

professor-in-residence of psychiatry and biobehavioral sciences at

UCLA's Geffen School of Medicine. " Pretreatment brain scans

hold promise for accelerating the sometimes painstaking process of

identifying the best treatment for an individual patient and speeding

development of new interventions. "

http://www.npi.ucla.edu/news/paxil.html

Seems like I read somewhere that since different medications (like

SSRIs) affect different brain chemicals (something like that or else

one would work for all....like they all affect serotonin but each has

a different pathway or affect....????), that imaging can possibly be

used in the future to determine which medication will work best for a

person or give a good idea of which med to try first.

Of course, these days, I always seem to remember only bits of what

I've read and can be totally off on what I " thought " I read! Hope

it's just age!

> My pharmacist told me about a coming dna? test (using swabbed cells

from inner cheek) that will give on the spot? info on med metabolism

and which meds would be best and which to avoid for a particular

person. As I understood this would not be specific to psych meds

though, also will be some years in the future.

>

> I haven't heard of CAT scans for determining med dosage before,

this is new to me.

>

> Kathy R. in Indiana

> ----- Original Message -----

[Guest guest]

LOL Now I do remember reading this...and thinking of the practical problems of

getting an untreated child with OCD to stick her head into a CT scanner...

I've got the same problems remembering only bits and pieces of things

I've read, and I'm near hopeless in finding them again. You seem to be aces at

that :-)

Kathy R. in Indiana

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

From:

Don't know the difference between all the types of scans but here's a

portion of one article I'd read and this research was done using

Paxil:

" The study demonstrates the potential of functional brain imaging to

predict how a patient will respond to treatment, " said lead

investigator Dr. Sanjaya Saxena, director of the UCLA

Neuropsychiatric Institute's OCD Research Program and associate

professor-in-residence of psychiatry and biobehavioral sciences at

UCLA's Geffen School of Medicine. " Pretreatment brain scans

hold promise for accelerating the sometimes painstaking process of

identifying the best treatment for an individual patient and speeding

development of new interventions. "

http://www.npi.ucla.edu/news/paxil.html

Seems like I read somewhere that since different medications (like

SSRIs) affect different brain chemicals (something like that or else

one would work for all....like they all affect serotonin but each has

a different pathway or affect....????), that imaging can possibly be

used in the future to determine which medication will work best for a

person or give a good idea of which med to try first.

Of course, these days, I always seem to remember only bits of what

I've read and can be totally off on what I " thought " I read! Hope

it's just age!

[Guest guest]

Hi Sheila and welcome to the group! First I want to say, (((hugs))) you and

your family are in probably the worse point of dealing with OCD, it's been

diagnosed (very frightening) yet treatment is just getting started and of course

there hasn't been much if any improvement yet. I know when I was at that point,

I couldn't begin to imagine better days and felt very depressed about my child's

suffering and her chances to live a normal life. I can promise however that

your daughter is one of the lucky ones, you have started her in the right type

of therapy and soon you will begin to see benefits from that. Many, many

children flounder around for a long while with " wrong " therapists or " wrong "

types of therapy before they are hooked up with competent behavior therapists.

You wrote:

> Hi. My name is Sheila and I have a dd 11 1/2 that has just been

diagnosed with OCD. She has just started behavioral therapy. She

met her therapist for the first time on Monday (kicking and

screaming) but afterwards felt calmer and really clicked with him. I

was happy for that.

*****This is a great start! My daughter also was so anxious to even walk into

the therapist's office that she would be in tears or making angry, rude

comments, totally unlike her. I would suggest that you keep an eye that actual

therapy (making a heirarchy of symptoms, getting exposure homework) begins

within five or so appointments as a general rule of thumb.

> I guess I'd just like to say that I've suspected this for several

years now. I question whether she has SID with it. But like I

said, we are at the beginning of evaluation at this point. It seems

puberty has really escalated it.

*****Puberty is a common time for symptoms to " explode " in intensity, and many

OCD kids also have clothing and/or other sensory challenges. I read recently

that if SID (or DSI it's being called now I guess for Disorders of Sensory

Integration) is admitted into the DSM, it will probably be grouped with the

anxiety disorders. I thought that makes a lot of sense since so many anxious

kids have SID symptoms too.

> She had a " meltdown " today because we were invited to a friends house at the

last moment. She does not do well with change. But I truly

believe the melt-down is showing me that she feels the " gig is up "

and she's allowing us to see what's really been on her mind. I told

my husband I think all symptoms will get worse before they get better

during the beginnings of this therapy.

*****My child's ability to be flexible and handle unanticipated events and

change increased dramatically once her OCD symptoms and general anxiety were

lower with SSRI treatment and CBT/ERP. I have in fact recently been amazed at

how " laid back " and unreactive she is to " surprises " which used to set her off.

Ex: yesterday morning as she was eating breakfast and watching TV before

school, we had a lightening strike nearby that suddenly knocked out our cable

service in the middle of her program. I *know* that less than a year ago, she

would have had an angry anxious meltdown due to not being able to see the show

to completion, probably she would then have missed the bus and perhaps been late

to school before she could have calmed herself down. Yesterday she said Oh

crud, cable's out, finished breakfast and went upstairs to get dressed for

school. She's 9 and has had a year and a half of professional CBT/ERP. At her

appointment last week, her therapist suggested going out six weeks for her next

appointment toward " graduating " from therapy and moving toward an " as needed "

schedule.

> My question is: when the Behaviorial Therapy starts, does it get

worse before it gets better?

*****Possibly because effective CBT/ERP does provoke anxiety which the kids

then learn to accommodate to. With continued CBT/ERP their anxiety levels fall

though as they have fewer and fewer remaining obsessions and compulsions. They

also begin to have a sense of mastery and control over the OCD and this really

boosts their self-confidence as well as lowers overall anxiety.

> We are trying to make our enviornment

as relaxed as possible as she begins this.

*****That's really smart. It's helpful to pare down the schedule and let

things that are not absolutely necessary go as you focus on getting your child's

symptoms under control. This may include speaking to her teachers if doing

homework, writing papers or whatever become unnecessarily burdensome during

these early weeks of therapy. Therapy takes up a lot of time and energy but is

an appropriate priority at this point in your daughter's recovery.

> I'm doing my homework-

signing up on the OCD loops and reading, reading, reading. Then when

I am alone, all I feel like doing is crying. Any input would be

greatly appreciated.

*****I did a lot of crying in the shower, my child was pretty young when she

had an overnight onset of OCD and I didn't want to further upset her :-) As I

said at the top, you can look forward to feeling less and less like crying as

your daughter begins to make progress and her symptom level falls. OCD can

become all-consuming around the time of diagnosis and beginning treatment, so

please don't forget to find some time for you, to do things that you enjoy--read

an interesting novel among all the OCD books! Also please feel free to post

here as often as you want, for support, to ask questions or just vent. We've

all been where you and your family are now and are happy to help in any way we

can.

Again, welcome,

Kathy R. in Indiana

[Guest guest]

Hi Sheila:

Hugs to you!

Our family certainly felt that things got worse before they got better.

And we certainly weren't ready for things to get any worse. We had great

hopes/desperation for the CBT (E & RP) to work as life was hell; we had

little resources for things to get worse again.

However looking back on it, that was our way out of the jungle/quagmire

or whatever that OCD had turned Steve's and our lives into. Any

temporary worsening was worth it because the improvement is nothing

short of amazing.

What also shocked me was how long the recovery was. Before OCD my

timing for recovery with my kids was an ear infection treated by

antibiotics etc, or sore throats with lozenges and TLC. It was a long,

long time before the recovery was clear and sustained, it truly tested

Steve's resolve and ours. I believed books, therapist, others were just

being unrealistic when they spoke of the improvements possible..however

hanging in there taught our family so much.

Tears are important for healing IMO. Hang in there, you are on the path

to a much better life for your beloved child and the whole family.

Please keep us posted about your daughter's recovery - I know you will

have good news to share before too long. It is sometimes a one step

forward two steps back situation, but over the long haul you will be

moving in the right direction. Take care, aloha, Kathy (h)

kathy.hi@...

(unknown)

Hi. My name is Sheila and I have a dd 11 1/2 that has just been

diagnosed with OCD. She has just started behavioral therapy. She

met her therapist for the first time on Monday (kicking and

screaming) but afterwards felt calmer and really clicked with him. I

was happy for that.

I guess I'd just like to say that I've suspected this for several

years now. I question whether she has SID with it. But like I

said, we are at the beginning of evaluation at this point. It seems

puberty has really escalated it.

She had a " meltdown " today because we were invited to a friends house

at the last moment. She does not do well with change. But I truly

believe the melt-down is showing me that she feels the " gig is up "

and she's allowing us to see what's really been on her mind. I told

my husband I think all symptoms will get worse before they get better

during the beginnings of this therapy.

My question is: when the Behaviorial Therapy starts, does it get

worse before it gets better? We are trying to make our enviornment

as relaxed as possible as she begins this. I'm doing my homework-

signing up on the OCD loops and reading, reading, reading. Then when

I am alone, all I feel like doing is crying. Any input would be

greatly appreciated.

Sheila

[Guest guest]

Hi Sheila:

Hugs to you!

Our family certainly felt that things got worse before they got better.

And we certainly weren't ready for things to get any worse. We had great

hopes/desperation for the CBT (E & RP) to work as life was hell; we had

little resources for things to get worse again.

However looking back on it, that was our way out of the jungle/quagmire

or whatever that OCD had turned Steve's and our lives into. Any

temporary worsening was worth it because the improvement is nothing

short of amazing.

What also shocked me was how long the recovery was. Before OCD my

timing for recovery with my kids was an ear infection treated by

antibiotics etc, or sore throats with lozenges and TLC. It was a long,

long time before the recovery was clear and sustained, it truly tested

Steve's resolve and ours. I believed books, therapist, others were just

being unrealistic when they spoke of the improvements possible..however

hanging in there taught our family so much.

Tears are important for healing IMO. Hang in there, you are on the path

to a much better life for your beloved child and the whole family.

Please keep us posted about your daughter's recovery - I know you will

have good news to share before too long. It is sometimes a one step

forward two steps back situation, but over the long haul you will be

moving in the right direction. Take care, aloha, Kathy (h)

kathy.hi@...

(unknown)

Hi. My name is Sheila and I have a dd 11 1/2 that has just been

diagnosed with OCD. She has just started behavioral therapy. She

met her therapist for the first time on Monday (kicking and

screaming) but afterwards felt calmer and really clicked with him. I

was happy for that.

I guess I'd just like to say that I've suspected this for several

years now. I question whether she has SID with it. But like I

said, we are at the beginning of evaluation at this point. It seems

puberty has really escalated it.

She had a " meltdown " today because we were invited to a friends house

at the last moment. She does not do well with change. But I truly

believe the melt-down is showing me that she feels the " gig is up "

and she's allowing us to see what's really been on her mind. I told

my husband I think all symptoms will get worse before they get better

during the beginnings of this therapy.

My question is: when the Behaviorial Therapy starts, does it get

worse before it gets better? We are trying to make our enviornment

as relaxed as possible as she begins this. I'm doing my homework-

signing up on the OCD loops and reading, reading, reading. Then when

I am alone, all I feel like doing is crying. Any input would be

greatly appreciated.

Sheila

[Guest guest]

Hi Alison, I heard you moaning clear across the Atlantic LOL!

You wrote:

> Just writing for a moan really, Henrys hand licking is no better and

it is four weeks till we see the specialist again.

*****Refresh my memory, has the specialist agreed to treat Henry for OCD?

(SSRI medication or CBT/ERP therapy?) If so, can you tell her you need to see

her more often than monthly at least until Henry's symptoms start to improve?

Or can you arrange to contact her if you have problems inbetween appointments?

I am constantly amazed that psychiatrists etc. don't realize that until symptoms

are improving, the family is really in a crisis and deserves top-priority

scheduling.

> We would not have

a problem if he never had to get his hands wet, ever, but that is

not really practical, is it?

*****No it's not practical plus it is avoidance of the trigger to do the

compulsion, which we have all learned the hard way just reinforces the obsession

and makes everything worse. HOWEVER as a nod to practicality, until treatment

starts having its effect, could you identify a minimum number of times that

Henry must wash his hands and let other times slide? Ultimately to extinguish

this compulsion, Henry must get his hands wet and not lick, living with the

anxiety this produces until it falls on its own without doing the compulsion.

This is how you uncouple the obsession from the compulsion, and finally Henry

will no longer even think of licking when his hands are wet.

> I'm sick and tired of hearing it may

just be a phase he is going through or attention seeking behaviour,

(how many children on their 7th birthday complain of voices telling

them they must 'do it,' repeatedly, or could think to make that up.

*****Who on Earth is telling you this? If it's the specialist, cut your

losses and find another who understands that OCD is not behavioral but is

instead a brain-based disorder. If it's friends, teachers, family I suggest

finding a short explaination of OCD by an unassailable authority and handing

these out.

> Just feeling really fustrated at the whole situation and feeling too

tired to ever see an end to this. Henry has only been having these

compulsions for 4 months, five maximum, how you all keep such humor

i really don't know.

*****When you child is suffering and has not yet begun to improve, it is next

to impossible to be calm I know. Those of us who seem more lighthearted and

steady have been dealing with this awhile now and realize some humor and

stepping out of the situation helps us cope. It also helps our kids by lifting

some of the doom-and-gloom atmosphere. Especially with young kids, if you act

overwhelmed by this problem, Henry will likely pick this up. You can go back

through the archives and find posts from me five years ago, just a few months

after my child's onset of OCD. I guarantee they are not calm at all, I was

devastated and desperate, and in constant " emergency mode. " Back then I

wondered the same thing as you, and thought my child must have some different

type of OCD than the others' on this list did. I couldn't begin to fathom how

the folks responding to my posts were on such an even keel if they were dealing

with what I was dealing with in my child.

> I seem to be picking up that other things are

now bothering him like he has gone particular about drinking after

somebody else from the same bottle (because of their germs), this

never bothered him before, and he is always complaing regularly

about labels in clothes itching, again something he has never done

before.

*****I was so depressed when the scales fell from my eyes and I realized how

many obsessions and compulsions my child had.

> Also today when he was told he was being taken to the zoo,

he really cried because he said he was so happy, is this a normal

reaction for a seven year old, or aren't they just really excited

about things they love doing. It is difficult to not look for OCD

symptoms in everything yet try not miss anything that may be an OCD

symptom, if that makes sense.

*****I can't really say how this is related to OCD except that my child's

emotions have been set on " high " since it hit. Crying for joy, or being moved

to tears by slow stately music, I thought were just expressions until Kel began

doing these things following OCD onset.

> Well moan over, they say a problem shared is a problem halved, so

thank you for sharing my fustration. It will all probably look a lot

better in the morning.

thanks again for the support i have had from the group

*****You are welcome :-) Did you ever get hold of Obsessive Action? Since it

is based in Britian they should be a great source of info, doctor suggestions

and perhaps even a way to hook up with other families with OCD kids. I looked

at the site and they had a great page about OCD in kids that perhaps could sway

your specialist's opinion about treatment and etc. or help in explaining the

disorder to friends and family.

(((((Hugs)))))

Kathy R. in Indiana