Thank you

[Guest guest]

Thank you to all of you who have sent me your kind thoughts and prayers for

my daughter. I'm driving up to her on Thursday. The doctor has told her she

will spend at least a week on her stomach. She's the type that can't sit

still for a minute. I guess I will be the one taking care of her heard of

animals while she's mending. She lives on a wildlife rescue ranch and many

of the critters are all around her house. You never know what may come thru

the door when you go outside. Might be a pig then again it might be an Emu.

I'll post after her surgery to tell you all how things go.

Again, Thank you very much for all your kind wishes.

Kathleen in Calif.

[Guest guest]

- such a thoughtful post and so true. This is an amazing group

of sharing and caring people. I joined late in 2004 also for reasons

like yours, and I'm in much better shape now. It's certainly changed

my life and educated me at the same time. I've become more pro-

active about my health, and my husband is much more at ease about my

symptoms and recovery. We both have been able to advise friends or

spouses of friends with symptoms of hypo to seek new advice from new

doctors, when their docs talk to them like yours did.

I'm thankful every day that I live in the age of the Internet!

All good wishes for continued success in your recovery!

Sara

>

> Hello ~

>

> I discovered this group in June 2004. What led me here is my

> declining health. For 5 years I felt something wasn't right. It

> couldn't be my thyroid even though I was exhausted. Afterall, I

was

> on Synthroid. Doctor after doctor told me I was fine, that I just

> needed to push myself away from the table (overweight) and get

some

> excercise. Excercise - are you out of your friggin mind?????

> I had the thinning hair, major body aches, heart palpitations that

> made me think I had a heart condition, the feeling of not being

able

> to handle a crisis, heavy, heavy menstrual cycles and painfully

dry

> burning eyes.

>

> Well, a year and a half later I'm 30 pounds lighter, I have my

hair

> back and none of the above problems. I am now on 4.5 grains and

> doing so so much better. It took a long time for my body to adjust

> and there were times I wondered if I'd ever be one of those people

> who would post how great they felt. My TPO blood test was at 742

> (normal range 0-34) right before going on Armour. I'm still not

> where I need to be but I am so much better than I was. I often

> think of how sick I would be right now had I not found this group.

>

> You gave me my life back. God Bless you for all you do.

>

[Guest guest]

Oh , you don't know how that makes me feel----(((Joy)))

(((Joy)))!!!!!!!!

Thank you

> Hello ~

>

> I discovered this group in June 2004. What led me here is my

> declining health. For 5 years I felt something wasn't right. It

> couldn't be my thyroid even though I was exhausted. Afterall, I was

> on Synthroid. Doctor after doctor told me I was fine, that I just

> needed to push myself away from the table (overweight) and get some

> excercise. Excercise - are you out of your friggin mind?????

> I had the thinning hair, major body aches, heart palpitations that

> made me think I had a heart condition, the feeling of not being able

> to handle a crisis, heavy, heavy menstrual cycles and painfully dry

> burning eyes.

>

> Well, a year and a half later I'm 30 pounds lighter, I have my hair

> back and none of the above problems. I am now on 4.5 grains and

> doing so so much better. It took a long time for my body to adjust

> and there were times I wondered if I'd ever be one of those people

> who would post how great they felt. My TPO blood test was at 742

> (normal range 0-34) right before going on Armour. I'm still not

> where I need to be but I am so much better than I was. I often

> think of how sick I would be right now had I not found this group.

>

> You gave me my life back. God Bless you for all you do.

[Guest guest]

Danni:

Please, Please! Take of yourself, is there anyone to help yiou with the

arrangements? It is not right for you take on the whole burden. And yes it is

normal for what you are

going through right now, but you need to take some time for yourself to mourn

the loss of your brother as well. AND MOST OF ALL take care of YOU as well.

Let us know if there is anything we can do to help you

Tracilyn

[Guest guest]

Dear Sir,

Is'nt that true for all os us.......I mean looking feeling and acting younger?

Renuka'84

SP Kalantri wrote:

Thanks Mukund, Ravin, Kishore, Shyam, Aasawari, Ashok, Sunil, VK,

Prabha,

Skand and Murtaza for remembering me on August 15. I have joined the

community of 50-plus who wish to look 35, feel 24, and sometimes act 18!

SP

[Guest guest]

Dear Sir,

Is'nt that true for all os us.......I mean looking feeling and acting younger?

Renuka'84

SP Kalantri wrote:

Thanks Mukund, Ravin, Kishore, Shyam, Aasawari, Ashok, Sunil, VK,

Prabha,

Skand and Murtaza for remembering me on August 15. I have joined the

community of 50-plus who wish to look 35, feel 24, and sometimes act 18!

SP

[Guest guest]

Thanks for posting. My son also had licking and spitting stuff as well as

elevator fears mixed in with his other more typical OCD stuff. He was officially

diagnosed at age 3 but had signs from birth in hindsight. His first true

compulsions were at 9 months old with wiping spots off his shoes ( he learned to

walk early) and wiping and wiping and crying and crying and wiping and wiping.

We just thought he was high strung and out on the edge of the personality

spectrum. He was potty trained at 4 but would not poop in a toilet and would

ask for a diaper to poop into. Still to this day ( he is almost 16) he will not

poop in a public restroom, and needs to be TOTALLY NAKED to poop- shirt and

socks and all have to be taken off. When he goes away to camp for a week he

either holds it, or breaks into an area of the dorm that has no students in it (

last year he broke into the closed floor above and used the bathroom there as a

" private " restroom.) It can be very hard to sort out when they are very young.

In the end the label OCD just provides a roadmap of how to treat- it doesnt

really change what you are dealing with. Same with getting a dx of PANS or

PANDAS - it is not the label or diagnosis that matters, it is the implications

for where to go from here and how to treat.

CBT/ERP works EVNE IF THEY DONT HAVE OCD. (in fact it works much more quickly).

My nephew had some clothing issues that were making my brother and his wife's

lives really diffficult ( would only wear one thing). I showed them how to do

ERP with other clothes and within 3 days the kid was wearing anything. Either

way- OCD or no OCD, it sounds like you have issues you could use the help of a

good, experienced pediatric behavioral therapist for and much of the fear based

stufff and repetitive behaviors could be addressed by CBT/ERP. Good luck

finding someone good with kids those ages though. Do some good phone

interviewing first.

[Guest guest]

Thanks for posting. My son also had licking and spitting stuff as well as

elevator fears mixed in with his other more typical OCD stuff. He was officially

diagnosed at age 3 but had signs from birth in hindsight. His first true

compulsions were at 9 months old with wiping spots off his shoes ( he learned to

walk early) and wiping and wiping and crying and crying and wiping and wiping.

We just thought he was high strung and out on the edge of the personality

spectrum. He was potty trained at 4 but would not poop in a toilet and would

ask for a diaper to poop into. Still to this day ( he is almost 16) he will not

poop in a public restroom, and needs to be TOTALLY NAKED to poop- shirt and

socks and all have to be taken off. When he goes away to camp for a week he

either holds it, or breaks into an area of the dorm that has no students in it (

last year he broke into the closed floor above and used the bathroom there as a

" private " restroom.) It can be very hard to sort out when they are very young.

In the end the label OCD just provides a roadmap of how to treat- it doesnt

really change what you are dealing with. Same with getting a dx of PANS or

PANDAS - it is not the label or diagnosis that matters, it is the implications

for where to go from here and how to treat.

CBT/ERP works EVNE IF THEY DONT HAVE OCD. (in fact it works much more quickly).

My nephew had some clothing issues that were making my brother and his wife's

lives really diffficult ( would only wear one thing). I showed them how to do

ERP with other clothes and within 3 days the kid was wearing anything. Either

way- OCD or no OCD, it sounds like you have issues you could use the help of a

good, experienced pediatric behavioral therapist for and much of the fear based

stufff and repetitive behaviors could be addressed by CBT/ERP. Good luck

finding someone good with kids those ages though. Do some good phone

interviewing first.

[Guest guest]

Hi, Kathy! I have daughters ages 11 and 8 (and one age 24, but she’s

“normal†or as we say here, “neurotypicalâ€. There is no “normalâ€.)

The 11 was diagnosed with OCD late last year after being labeled SID and ADD.

Both of those things are true of her, but apparently they have their roots in

the OCD. My 8 year old has some degree of OCD as well but it presents

differently than her older sister AND it doesn’t interfere with her daily life

like it does for her sister. I had always pictured OCD as the people who are

scrupulously clean and wash their hands every 5 minutes, but I’ve learned that

is not necessarily the case. My older girl has anxiety-related OCD, which means

she is thinking so far ahead about what *might* happen that she can’t function

in the here and now: am I going to embarrass myself? am I going to get the

wrong answer? and so on. She is also what we call her in the South a bit

“particular†or “persnickety†about her toys and especially her bed.

It’s covered with stuffed animals and pillow but heaven forbid you move

something or worse yet, remove something! She knows the position and name of

every single item on her bed and it is to stay the way she has it unless and

until she decides to rearrange things. My husband (who has his own level of OCD

in the form of cleanliness and neatness) and she butt heads about this on a

regular basis. She was not fully potty trained until after the age of 4. She

is very sensitive is nearly every way possible, both physically and emotionally,

and brushing her hair can be a major ordeal. Brushing her teeth is hit or miss

and I keep waiting for her to start caring about her appearance like most girls

eventually do, but so far it hasn’t happened. She likes certain types of

clothing, and don’t even get me started on what a struggle it was to get her

to start wearing a bra every day! She is under the care of a Developmental

Pediatrician and takes Zoloft, which has caused a huge improvement in her

quality of life without diminishing any of her adorably quirky personality.

My 8 year old thrives on routine and she loathes uncertainty. If she asks you a

question, however, beware of answering with an absolute because she will hold

you to it. After doing some reading I have started leaving things a little more

open-ended with her so that hopefully she learns that uncertainty doesn’t

always mean something unpleasant. There are good surprises too. She is afraid

of self-flushing toilets and other unexpected loud noises. On the outside she

is as normal as normal could appear to be. She’s very smart and is an amazing

athlete, but at home sometimes her need to control her environment takes over.

She has not been seen or diagnosed but if and when her symptoms start to affect

her quality of life, I will get her in to the Dev Ped ASAP. Some of her control

issues may date back to the 8 months she spent in an orphanage as a baby. She

is adopted and the 11 year old is my bio daughter and while we don’t treat

them any differently, sometimes you can’t deny that they had different starts

in life that could affect their behavior.

I wish that someone would have mentioned OCD as a possibility to me earlier. My

11 year old has been in treatment of one kind or another since the age of 5, and

never once was OCD brought up, and I didn’t know to consider it. First it was

sensory processing disorder (which she does have, but could be a symptom of the

OCD), and then it was ADD (definitely due to the OCD). We wasted a lot of time

that we can never get back and it makes me sad that we could have made things

better for her if we had known better what to do. At least we know now and

she’s not being made to just get through it, like my husband was. So I

commend you for being on top of things and not dismissing your sons’

differences. The elevator pretend play sounds almost like his own version of

ERP. Smart boy!

Kim A.

From: Kathy Heinen

Sent: Wednesday, June 06, 2012 5:49 AM

To:

Subject: Thank you

Hello,

I am fairly new to the group and this is my first post. I have been reading most

of the post on this site and have learned so much. It's totaly eye opening for

me. I wish my children's teachers were as knowledgable as the parents on this

site.

I have 2 boys, 6 and 4. Neither of my children have been diagnosed with OCD

BUT...

My 6 year old has a tic disorder. And, maybe ADHD, and or maybe high functioning

autism or OCD, or something like Touretts. I think we've been sent on a wild

goose chase to find a diagnosis for him for over 2 years now. He spits, wipes

his nose on furniture, washes his hands quite a bit, He will scream at his

litter brother if he touches him inthe wrong place yelling " you have germs " .

Also, he licks his finger tips, touches his knees, touches his arms, (he's like

a first base coach in baseball). He breaks down and cries when we have a change

in our schedule. He has no friends. He has a hard time interacting with his

peers. He is always silly, and gets into trouble at school for being silly.

My 4 year old does not officialy have anything except for the label " preschooler

with a disability " and gets a special ed teacher and an OT at his preschool. He

is terrfied of elevators, he won't walk past them. However, he will pretend to

be in elevator during free play at home for hours. In fact, it's been a long

on-going game for him, to pretend to go up and down in an elevator. He will only

wear his black socks, long sleves, sweats. He screams when I brush his teeth or

have to wash his hair. He is not potty trained. He is afarid of hand dryers and

toilets that flush by themselves. He will only use our potty at home and he

hates underwear, its a stuggle getting them on and keeping them on.

So, I guess I just wanted to say I feel pretty sure my kids have some form of

OCD, based on reading these post for the last few months. I have actually called

a behaviral therapist, even though we don't offically have a diagnosis, to talk

about starting behavioral therapy and ERP. If it were not for this post I would

of never heard of ERP or even be aware of all the ways OCD can present itself.

Thank you everyone for posting your stories. It's truly helping me to feel a bit

more in control, I can have a plan instead of waiting years and years for

doctors and teachers to help me.

Sincerely,

Kathy

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

No virus found in this message.

Checked by AVG - www.avg.com

Version: 10.0.1424 / Virus Database: 2425/5048 - Release Date: 06/05/12

[Guest guest]

Hi, Kathy! I have daughters ages 11 and 8 (and one age 24, but she’s

“normal†or as we say here, “neurotypicalâ€. There is no “normalâ€.)

The 11 was diagnosed with OCD late last year after being labeled SID and ADD.

Both of those things are true of her, but apparently they have their roots in

the OCD. My 8 year old has some degree of OCD as well but it presents

differently than her older sister AND it doesn’t interfere with her daily life

like it does for her sister. I had always pictured OCD as the people who are

scrupulously clean and wash their hands every 5 minutes, but I’ve learned that

is not necessarily the case. My older girl has anxiety-related OCD, which means

she is thinking so far ahead about what *might* happen that she can’t function

in the here and now: am I going to embarrass myself? am I going to get the

wrong answer? and so on. She is also what we call her in the South a bit

“particular†or “persnickety†about her toys and especially her bed.

It’s covered with stuffed animals and pillow but heaven forbid you move

something or worse yet, remove something! She knows the position and name of

every single item on her bed and it is to stay the way she has it unless and

until she decides to rearrange things. My husband (who has his own level of OCD

in the form of cleanliness and neatness) and she butt heads about this on a

regular basis. She was not fully potty trained until after the age of 4. She

is very sensitive is nearly every way possible, both physically and emotionally,

and brushing her hair can be a major ordeal. Brushing her teeth is hit or miss

and I keep waiting for her to start caring about her appearance like most girls

eventually do, but so far it hasn’t happened. She likes certain types of

clothing, and don’t even get me started on what a struggle it was to get her

to start wearing a bra every day! She is under the care of a Developmental

Pediatrician and takes Zoloft, which has caused a huge improvement in her

quality of life without diminishing any of her adorably quirky personality.

My 8 year old thrives on routine and she loathes uncertainty. If she asks you a

question, however, beware of answering with an absolute because she will hold

you to it. After doing some reading I have started leaving things a little more

open-ended with her so that hopefully she learns that uncertainty doesn’t

always mean something unpleasant. There are good surprises too. She is afraid

of self-flushing toilets and other unexpected loud noises. On the outside she

is as normal as normal could appear to be. She’s very smart and is an amazing

athlete, but at home sometimes her need to control her environment takes over.

She has not been seen or diagnosed but if and when her symptoms start to affect

her quality of life, I will get her in to the Dev Ped ASAP. Some of her control

issues may date back to the 8 months she spent in an orphanage as a baby. She

is adopted and the 11 year old is my bio daughter and while we don’t treat

them any differently, sometimes you can’t deny that they had different starts

in life that could affect their behavior.

I wish that someone would have mentioned OCD as a possibility to me earlier. My

11 year old has been in treatment of one kind or another since the age of 5, and

never once was OCD brought up, and I didn’t know to consider it. First it was

sensory processing disorder (which she does have, but could be a symptom of the

OCD), and then it was ADD (definitely due to the OCD). We wasted a lot of time

that we can never get back and it makes me sad that we could have made things

better for her if we had known better what to do. At least we know now and

she’s not being made to just get through it, like my husband was. So I

commend you for being on top of things and not dismissing your sons’

differences. The elevator pretend play sounds almost like his own version of

ERP. Smart boy!

Kim A.

From: Kathy Heinen

Sent: Wednesday, June 06, 2012 5:49 AM

To:

Subject: Thank you

Hello,

I am fairly new to the group and this is my first post. I have been reading most

of the post on this site and have learned so much. It's totaly eye opening for

me. I wish my children's teachers were as knowledgable as the parents on this

site.

I have 2 boys, 6 and 4. Neither of my children have been diagnosed with OCD

BUT...

My 6 year old has a tic disorder. And, maybe ADHD, and or maybe high functioning

autism or OCD, or something like Touretts. I think we've been sent on a wild

goose chase to find a diagnosis for him for over 2 years now. He spits, wipes

his nose on furniture, washes his hands quite a bit, He will scream at his

litter brother if he touches him inthe wrong place yelling " you have germs " .

Also, he licks his finger tips, touches his knees, touches his arms, (he's like

a first base coach in baseball). He breaks down and cries when we have a change

in our schedule. He has no friends. He has a hard time interacting with his

peers. He is always silly, and gets into trouble at school for being silly.

My 4 year old does not officialy have anything except for the label " preschooler

with a disability " and gets a special ed teacher and an OT at his preschool. He

is terrfied of elevators, he won't walk past them. However, he will pretend to

be in elevator during free play at home for hours. In fact, it's been a long

on-going game for him, to pretend to go up and down in an elevator. He will only

wear his black socks, long sleves, sweats. He screams when I brush his teeth or

have to wash his hair. He is not potty trained. He is afarid of hand dryers and

toilets that flush by themselves. He will only use our potty at home and he

hates underwear, its a stuggle getting them on and keeping them on.

So, I guess I just wanted to say I feel pretty sure my kids have some form of

OCD, based on reading these post for the last few months. I have actually called

a behaviral therapist, even though we don't offically have a diagnosis, to talk

about starting behavioral therapy and ERP. If it were not for this post I would

of never heard of ERP or even be aware of all the ways OCD can present itself.

Thank you everyone for posting your stories. It's truly helping me to feel a bit

more in control, I can have a plan instead of waiting years and years for

doctors and teachers to help me.

Sincerely,

Kathy

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

No virus found in this message.

Checked by AVG - www.avg.com

Version: 10.0.1424 / Virus Database: 2425/5048 - Release Date: 06/05/12

[Guest guest]

Sounds like SPD to me. I have 1 child, he is 9 now, and I am so familiar with

the goose chase of diagnoses.

He's been labeled with:

OCD

possible Asperger's

Tourette's

GAD

CAPD

Hyperacusis

and more

but SPD, tics and anxiety are the biggest symptoms he is dealing with. At this

point I don't care what they call it, I just want the help and it's a constant

struggle.

http://www.sensory-processing-disorder.com/

>

> Hello,

>

> I am fairly new to the group and this is my first post. I have been reading

most of the post on this site and have learned so much. It's totaly eye opening

for me. I wish my children's teachers were as knowledgable as the parents on

this site.

>

> I have 2 boys, 6 and 4. Neither of my children have been diagnosed with OCD

BUT...

>

> My 6 year old has a tic disorder. And, maybe ADHD, and or maybe high

functioning autism or OCD, or something like Touretts. I think we've been sent

on a wild goose chase to find a diagnosis for him for over 2 years now. He

spits, wipes his nose on furniture, washes his hands quite a bit, He will scream

at his litter brother if he touches him inthe wrong place yelling " you have

germs " . Also, he licks his finger tips, touches his knees, touches his arms,

(he's like a first base coach in baseball). He breaks down and cries when we

have a change in our schedule. He has no friends. He has a hard time interacting

with his peers. He is always silly, and gets into trouble at school for being

silly.

>

> My 4 year old does not officialy have anything except for the label

" preschooler with a disability " and gets a special ed teacher and an OT at his

preschool. He is terrfied of elevators, he won't walk past them. However, he

will pretend to be in elevator during free play at home for hours. In fact, it's

been a long on-going game for him, to pretend to go up and down in an elevator.

He will only wear his black socks, long sleves, sweats. He screams when I brush

his teeth or have to wash his hair. He is not potty trained. He is afarid of

hand dryers and toilets that flush by themselves. He will only use our potty at

home and he hates underwear, its a stuggle getting them on and keeping them on.

>

> So, I guess I just wanted to say I feel pretty sure my kids have some form of

OCD, based on reading these post for the last few months. I have actually called

a behaviral therapist, even though we don't offically have a diagnosis, to talk

about starting behavioral therapy and ERP. If it were not for this post I would

of never heard of ERP or even be aware of all the ways OCD can present itself.

>

> Thank you everyone for posting your stories. It's truly helping me to feel a

bit more in control, I can have a plan instead of waiting years and years for

doctors and teachers to help me.

>

> Sincerely,

> Kathy

>

[Guest guest]

Sounds like SPD to me. I have 1 child, he is 9 now, and I am so familiar with

the goose chase of diagnoses.

He's been labeled with:

OCD

possible Asperger's

Tourette's

GAD

CAPD

Hyperacusis

and more

but SPD, tics and anxiety are the biggest symptoms he is dealing with. At this

point I don't care what they call it, I just want the help and it's a constant

struggle.

http://www.sensory-processing-disorder.com/

>

> Hello,

>

> I am fairly new to the group and this is my first post. I have been reading

most of the post on this site and have learned so much. It's totaly eye opening

for me. I wish my children's teachers were as knowledgable as the parents on

this site.

>

> I have 2 boys, 6 and 4. Neither of my children have been diagnosed with OCD

BUT...

>

> My 6 year old has a tic disorder. And, maybe ADHD, and or maybe high

functioning autism or OCD, or something like Touretts. I think we've been sent

on a wild goose chase to find a diagnosis for him for over 2 years now. He

spits, wipes his nose on furniture, washes his hands quite a bit, He will scream

at his litter brother if he touches him inthe wrong place yelling " you have

germs " . Also, he licks his finger tips, touches his knees, touches his arms,

(he's like a first base coach in baseball). He breaks down and cries when we

have a change in our schedule. He has no friends. He has a hard time interacting

with his peers. He is always silly, and gets into trouble at school for being

silly.

>

> My 4 year old does not officialy have anything except for the label

" preschooler with a disability " and gets a special ed teacher and an OT at his

preschool. He is terrfied of elevators, he won't walk past them. However, he

will pretend to be in elevator during free play at home for hours. In fact, it's

been a long on-going game for him, to pretend to go up and down in an elevator.

He will only wear his black socks, long sleves, sweats. He screams when I brush

his teeth or have to wash his hair. He is not potty trained. He is afarid of

hand dryers and toilets that flush by themselves. He will only use our potty at

home and he hates underwear, its a stuggle getting them on and keeping them on.

>

> So, I guess I just wanted to say I feel pretty sure my kids have some form of

OCD, based on reading these post for the last few months. I have actually called

a behaviral therapist, even though we don't offically have a diagnosis, to talk

about starting behavioral therapy and ERP. If it were not for this post I would

of never heard of ERP or even be aware of all the ways OCD can present itself.

>

> Thank you everyone for posting your stories. It's truly helping me to feel a

bit more in control, I can have a plan instead of waiting years and years for

doctors and teachers to help me.

>

> Sincerely,

> Kathy

>

[Guest guest]

Hi Kathy,

Glad you stepped out of reading and posted!

Good for you for seeking out information too. Wish I had done this when mine

was younger. OCD was not even on the radar. I certainly sought out help, read

everything I could, just had no idea it was OCD, nothing to see that looked

remotely like it. Our son was always quirky, and was diagnosed with GAD at 9,

told LD had a lot to do with anxiety so wrote it off as that. Big difficulty

with separation since birth, issues with everything sensory, so probably SID,

was just difficult much of the time and nothing worked - just felt like an inept

parent Now we have diag. of OCD and much later PDD-NOS(on the spectrum of

many things basically, and delays).

Ours didn't toilet train before 4 either. Instinctively I knew there was

something preventing him, but never understood it, until we learned about OCD.

Ours has " just right " type OCD as one of his types, sure it was always there in

some form, and it can be very hidden, nothing to really see.

Looking back I suspect when he would flip out and have wild,long lasting

tantrums over seemingly nothing, it was OCD. He also had big challenge with

transitions of any kind. He has told us he would " check, tap, and pray, or just

worry " , since he was young. We saw none of it, and he was an only and I was a

pretty involved Mum, so sometimes you just don't know until you do.

You might want to get the book, " What to do when your brain gets stuck " , Dawn

Huebner. It is good for younger children, probably your 6yr old you could read

it together, and there is a workbook component. For your younger son, " A

thought is just a thought " might be good. For parents, I like Tamar Chansky's

book, Freeing your child from OCD. There are others, check the ocfoundation

website, or our booklist found in our files.

Knowledge really is your best defense when it comes to understanding and

learning how to manage OCD. So, you are certainly getting an early start. As

much as doctors are helpful with doing the ERP, ultimately it is the individual

who must understand how it works and learn how to use it in their own way. So,

anything that you can start on your own with your kids will serve you all well.

Left untreated with ERP, what can be small can grow big, and it is so much

easier to learn how to manage when it IS smaller/milder.

Warmly,

Barb

Canada

Son, 20, OCD, LD Plus

>

> Hello,

>

> I am fairly new to the group and this is my first post. I have been reading

most of the post on this site and have learned so much. It's totaly eye opening

for me. I wish my children's teachers were as knowledgable as the parents on

this site.

>

> I have 2 boys, 6 and 4. Neither of my children have been diagnosed with OCD

BUT...

>

> My 6 year old has a tic disorder. And, maybe ADHD, and or maybe high

functioning autism or OCD, or something like Touretts. I think we've been sent

on a wild goose chase to find a diagnosis for him for over 2 years now. He

spits, wipes his nose on furniture, washes his hands quite a bit, He will scream

at his litter brother if he touches him inthe wrong place yelling " you have

germs " . Also, he licks his finger tips, touches his knees, touches his arms,

(he's like a first base coach in baseball). He breaks down and cries when we

have a change in our schedule. He has no friends. He has a hard time interacting

with his peers. He is always silly, and gets into trouble at school for being

silly.

>

> My 4 year old does not officialy have anything except for the label

" preschooler with a disability " and gets a special ed teacher and an OT at his

preschool. He is terrfied of elevators, he won't walk past them. However, he

will pretend to be in elevator during free play at home for hours. In fact, it's

been a long on-going game for him, to pretend to go up and down in an elevator.

He will only wear his black socks, long sleves, sweats. He screams when I brush

his teeth or have to wash his hair. He is not potty trained. He is afarid of

hand dryers and toilets that flush by themselves. He will only use our potty at

home and he hates underwear, its a stuggle getting them on and keeping them on.

>

> So, I guess I just wanted to say I feel pretty sure my kids have some form of

OCD, based on reading these post for the last few months. I have actually called

a behaviral therapist, even though we don't offically have a diagnosis, to talk

about starting behavioral therapy and ERP. If it were not for this post I would

of never heard of ERP or even be aware of all the ways OCD can present itself.

>

> Thank you everyone for posting your stories. It's truly helping me to feel a

bit more in control, I can have a plan instead of waiting years and years for

doctors and teachers to help me.

>

> Sincerely,

> Kathy

>

[Guest guest]

Hi Kathy,

Glad you stepped out of reading and posted!

Good for you for seeking out information too. Wish I had done this when mine

was younger. OCD was not even on the radar. I certainly sought out help, read

everything I could, just had no idea it was OCD, nothing to see that looked

remotely like it. Our son was always quirky, and was diagnosed with GAD at 9,

told LD had a lot to do with anxiety so wrote it off as that. Big difficulty

with separation since birth, issues with everything sensory, so probably SID,

was just difficult much of the time and nothing worked - just felt like an inept

parent Now we have diag. of OCD and much later PDD-NOS(on the spectrum of

many things basically, and delays).

Ours didn't toilet train before 4 either. Instinctively I knew there was

something preventing him, but never understood it, until we learned about OCD.

Ours has " just right " type OCD as one of his types, sure it was always there in

some form, and it can be very hidden, nothing to really see.

Looking back I suspect when he would flip out and have wild,long lasting

tantrums over seemingly nothing, it was OCD. He also had big challenge with

transitions of any kind. He has told us he would " check, tap, and pray, or just

worry " , since he was young. We saw none of it, and he was an only and I was a

pretty involved Mum, so sometimes you just don't know until you do.

You might want to get the book, " What to do when your brain gets stuck " , Dawn

Huebner. It is good for younger children, probably your 6yr old you could read

it together, and there is a workbook component. For your younger son, " A

thought is just a thought " might be good. For parents, I like Tamar Chansky's

book, Freeing your child from OCD. There are others, check the ocfoundation

website, or our booklist found in our files.

Knowledge really is your best defense when it comes to understanding and

learning how to manage OCD. So, you are certainly getting an early start. As

much as doctors are helpful with doing the ERP, ultimately it is the individual

who must understand how it works and learn how to use it in their own way. So,

anything that you can start on your own with your kids will serve you all well.

Left untreated with ERP, what can be small can grow big, and it is so much

easier to learn how to manage when it IS smaller/milder.

Warmly,

Barb

Canada

Son, 20, OCD, LD Plus

>

> Hello,

>

> I am fairly new to the group and this is my first post. I have been reading

most of the post on this site and have learned so much. It's totaly eye opening

for me. I wish my children's teachers were as knowledgable as the parents on

this site.

>

> I have 2 boys, 6 and 4. Neither of my children have been diagnosed with OCD

BUT...

>

> My 6 year old has a tic disorder. And, maybe ADHD, and or maybe high

functioning autism or OCD, or something like Touretts. I think we've been sent

on a wild goose chase to find a diagnosis for him for over 2 years now. He

spits, wipes his nose on furniture, washes his hands quite a bit, He will scream

at his litter brother if he touches him inthe wrong place yelling " you have

germs " . Also, he licks his finger tips, touches his knees, touches his arms,

(he's like a first base coach in baseball). He breaks down and cries when we

have a change in our schedule. He has no friends. He has a hard time interacting

with his peers. He is always silly, and gets into trouble at school for being

silly.

>

> My 4 year old does not officialy have anything except for the label

" preschooler with a disability " and gets a special ed teacher and an OT at his

preschool. He is terrfied of elevators, he won't walk past them. However, he

will pretend to be in elevator during free play at home for hours. In fact, it's

been a long on-going game for him, to pretend to go up and down in an elevator.

He will only wear his black socks, long sleves, sweats. He screams when I brush

his teeth or have to wash his hair. He is not potty trained. He is afarid of

hand dryers and toilets that flush by themselves. He will only use our potty at

home and he hates underwear, its a stuggle getting them on and keeping them on.

>

> So, I guess I just wanted to say I feel pretty sure my kids have some form of

OCD, based on reading these post for the last few months. I have actually called

a behaviral therapist, even though we don't offically have a diagnosis, to talk

about starting behavioral therapy and ERP. If it were not for this post I would

of never heard of ERP or even be aware of all the ways OCD can present itself.

>

> Thank you everyone for posting your stories. It's truly helping me to feel a

bit more in control, I can have a plan instead of waiting years and years for

doctors and teachers to help me.

>

> Sincerely,

> Kathy

>

[Guest guest]

In response to your 4 year old: this sounds like classic sensory integration-

tactile defensiveness - resisting hair brushing, hair washing, teeth

brushing, not wanting to wear underwear.  An OT who has experience with sensory

integration could help you sort that out.  My son has OCD but we see an OT for

the sensory intergration therapy and it has really been helpful.  He has a list

of activities we do each morning and night called a " sensory diet " including

brushing his arms and legs with a soft special brush to make the skin less

defensive to other forms of touch.  An interesting connecting our OT made, is

that if the sensory input is not provided anxiety can shoot way up, and OCD is

anxiety based.  Good luck, you are ahead of the game if you are sorting this out

with a 4 year old.  Lots of us don't figure this stuff out until our kids hit

grade school...

 

Tara

 

 

 

" My 4 year old does not officialy have anything except for the label

" preschooler with a disability " and gets a special ed teacher and an OT at his

preschool. He is terrfied of elevators, he won't walk past them. However, he

will pretend to be in elevator during free play at home for hours. In fact, it's

been a long on-going game for him, to pretend to go up and down in an elevator.

He will only wear his black socks, long sleves, sweats. He screams when I brush

his teeth or have to wash his hair. He is not potty trained. He is afarid of

hand dryers and toilets that flush by themselves. He will only use our potty at

home and he hates underwear, its a stuggle getting them on and keeping them on.

"

 

>

[Guest guest]

In response to your 4 year old: this sounds like classic sensory integration-

tactile defensiveness - resisting hair brushing, hair washing, teeth

brushing, not wanting to wear underwear.  An OT who has experience with sensory

integration could help you sort that out.  My son has OCD but we see an OT for

the sensory intergration therapy and it has really been helpful.  He has a list

of activities we do each morning and night called a " sensory diet " including

brushing his arms and legs with a soft special brush to make the skin less

defensive to other forms of touch.  An interesting connecting our OT made, is

that if the sensory input is not provided anxiety can shoot way up, and OCD is

anxiety based.  Good luck, you are ahead of the game if you are sorting this out

with a 4 year old.  Lots of us don't figure this stuff out until our kids hit

grade school...

 

Tara

 

 

 

" My 4 year old does not officialy have anything except for the label

" preschooler with a disability " and gets a special ed teacher and an OT at his

preschool. He is terrfied of elevators, he won't walk past them. However, he

will pretend to be in elevator during free play at home for hours. In fact, it's

been a long on-going game for him, to pretend to go up and down in an elevator.

He will only wear his black socks, long sleves, sweats. He screams when I brush

his teeth or have to wash his hair. He is not potty trained. He is afarid of

hand dryers and toilets that flush by themselves. He will only use our potty at

home and he hates underwear, its a stuggle getting them on and keeping them on.

"

 

>

[Guest guest]

My son transitioned OK to MS prob. b/c he had been there so much prior.Both my

husband and I have offices there. If you can get in to MS this summer so he gets

to walk through his schedule, that helps. Also a key for locker is helpful

versus the combination b/c can be a major stressor for kids.

HS transition was very difficult. We did some things prior that helped a bit.

His therapist walked him through the HS, ERP stuff 2-3 times before he went. I

talked with counselor so he could have a pass. I also talked to each teacher

about his needs. Made sure he had a " safe " room of sorts to go to before,

during, and after school. Got permission for him to call me if needed. Worked

for a while then eventually snowballed and needed 504.Would have worked more on

his schedule if I knew more what he needed. I learned eventually that he needed

to have " hands on " type classes in the morning and more academic later. Also

extra resource periods helped. Just some ideas if you haven't already done this

for him. kelly

>

> Thanks for responding to my concerns about my son. My son is transitioning to

middle school. I think this is what the trigger was. He is a perfectionist and

has started worrying about next year. We are meeting with a therapist next week

that is trained in CBT for ocd. The therapist is a BTTI graduate. I started with

another therapist that said she could do CBT but was not aggressive enough. I

found the new therapist on the OCDfoundation website. This website has given me

so much helpful info. I had read about hospital and it sounded great. Has

anyone heard of the mayo clinic in minnesota having a intensive week long

program for ocd?

>

[Guest guest]

Sounds like you will be in good hands but if not I would go for an intensive or

hospitalization if the eating/weight loss does not turn around soon. I heard

through the grapevine that the 1 week intensive study that was going on

(multicenter trial) is no longer running due to the fact that it was not all

that helpful for only a week. Sounds like 3 weeks of intensive is what the

standard " short intensive " is that is thought to be helpful. If you stick with

your new therapist, you want to be sure they are giving daily homework for your

child that you help participate in. Any CBT/ERP that is done only in the office

will not be effective. It needs to be done daily ( or multiple times daily).

We had eating stuff(among many other things) at age 8 with refusal to eat due to

poisoned food. That is what prompted us to start meds which was a huge trial an

error nightmare, but eventually got him eating again. In hindsight, I should

have picked him up and gone to an intensive program or hospitalized him, but

instead chose to handle it and home, without good help from any knowledgable

therapist, and had my own personal nervous breakdown ( not really , but it was

really hard and i got totally depressed). It truely is one of the most

heartbreaking things in the world to watch them suffer like this.

People on this board have said wonderful things about Rodgers for inpatient, but

then often cant find qualified help when they leave, so if you can establish

something good close to home, that is great.

[Guest guest]

Sounds like you will be in good hands but if not I would go for an intensive or

hospitalization if the eating/weight loss does not turn around soon. I heard

through the grapevine that the 1 week intensive study that was going on

(multicenter trial) is no longer running due to the fact that it was not all

that helpful for only a week. Sounds like 3 weeks of intensive is what the

standard " short intensive " is that is thought to be helpful. If you stick with

your new therapist, you want to be sure they are giving daily homework for your

child that you help participate in. Any CBT/ERP that is done only in the office

will not be effective. It needs to be done daily ( or multiple times daily).

We had eating stuff(among many other things) at age 8 with refusal to eat due to

poisoned food. That is what prompted us to start meds which was a huge trial an

error nightmare, but eventually got him eating again. In hindsight, I should

have picked him up and gone to an intensive program or hospitalized him, but

instead chose to handle it and home, without good help from any knowledgable

therapist, and had my own personal nervous breakdown ( not really , but it was

really hard and i got totally depressed). It truely is one of the most

heartbreaking things in the world to watch them suffer like this.

People on this board have said wonderful things about Rodgers for inpatient, but

then often cant find qualified help when they leave, so if you can establish

something good close to home, that is great.

[Guest guest]

Sounds like you will be in good hands but if not I would go for an intensive or

hospitalization if the eating/weight loss does not turn around soon. I heard

through the grapevine that the 1 week intensive study that was going on

(multicenter trial) is no longer running due to the fact that it was not all

that helpful for only a week. Sounds like 3 weeks of intensive is what the

standard " short intensive " is that is thought to be helpful. If you stick with

your new therapist, you want to be sure they are giving daily homework for your

child that you help participate in. Any CBT/ERP that is done only in the office

will not be effective. It needs to be done daily ( or multiple times daily).

We had eating stuff(among many other things) at age 8 with refusal to eat due to

poisoned food. That is what prompted us to start meds which was a huge trial an

error nightmare, but eventually got him eating again. In hindsight, I should

have picked him up and gone to an intensive program or hospitalized him, but

instead chose to handle it and home, without good help from any knowledgable

therapist, and had my own personal nervous breakdown ( not really , but it was

really hard and i got totally depressed). It truely is one of the most

heartbreaking things in the world to watch them suffer like this.

People on this board have said wonderful things about Rodgers for inpatient, but

then often cant find qualified help when they leave, so if you can establish

something good close to home, that is great.

[Guest guest]

Hi there,

Just thought I'd mention some out of town options, since you mentioned you were

willing to travel.

Out of town options:

All Children's Hospital in St. sburg, Florida

Rothman Centre for Pediatric Neuropsychiatry

1-, ex. 8230

Email: rothmanctr@... or estorch@...

website: http://health.usf.edu/medicine/pediatrics/rothman/index.htm

The program was started by Dr. Storch(top specialist for OCD), and is

affiliated with the University of South Florida medical school. Storch and his

team specialize in pediatric OCD.

Features programs to help children, adolescents, and adults with a wide range of

psychiatric, behavioral, and neurocognitive conditions, including, OCD, PANDAS,

Tourettes, Trichotillomania (hair pulling), Skin picking, Body dysmorphic

disorder, Autism Spectrum Disorders. They have a three to four week intensive

treatment program for people coming from out of town. Family's can stay at

Mc house to keep costs down.

Several members in this group have used this program and spoken highly of it.

www.gatewayocd.com (California)

Offers a 3-week intensive treatment program which includes up to 35 hours of

treatment per week. Apartments available for individuals/family to live nearby

during treatment.

Don't know anyone who has used this program, but found when I was looking for

options.

If you feel you have a good specialist now (the new person), you might ask them

if they are willing to treat intensively, say three times a week, if not daily.

If you could do this for three weeks or so, it might turn thing around more

rapidly.

Let us know what you find/do!

Warmly,

Barb

>

> Thanks for responding to my concerns about my son. My son is transitioning to

middle school. I think this is what the trigger was. He is a perfectionist and

has started worrying about next year. We are meeting with a therapist next week

that is trained in CBT for ocd. The therapist is a BTTI graduate. I started with

another therapist that said she could do CBT but was not aggressive enough. I

found the new therapist on the OCDfoundation website. This website has given me

so much helpful info. I had read about hospital and it sounded great. Has

anyone heard of the mayo clinic in minnesota having a intensive week long

program for ocd?

>

[Guest guest]

Thank you to and Barbara for the warm welcome! I'm glad to note that my

stomach has very nearly cleared up and I'm feeling much better. If it continued

I was going to go to the doctor on Monday, but I think I'm OK. XOXOXO