Re: New to group, and OCD

[Guest guest]

Welcome to the group! Your son sounds very similar to mine. Clearly had the

stuff his whole life then diagnosed at age 3 when things clearly exploded.

Similar compulsions and worries. He is now 16 and doing very well. I know it

feels like things will never get better ,but with treatment they will. OCD also

tends to wax and wane so some of the coming and going may be due to that, not to

'hiding " it. The good thing about being diagnosed is that you can start

treatment which when done well can be very effective. It sounds like you are

really lucky if you have already found a psychiatrist who specializes in

treating children with OCD you are WAY ahead of the game! You might also ask

them for recommendations on therapists in the area. YOu could also check the

OCF website which has a therapist page- people who feel they know enough to want

to post their info to get OCD patients

RE therapy:

Neither CBT alone nor ACT ( I know nothing about it other than what I just read

on internet) is likely to do anything for OCD. If you do CBT, there needs to be

an ERP component (exposure response prevention) and should ideally be done by

someone experienced with OCD in children. Many people say they know how to

treat OCD or say they do CBT, but dont really do effective ERP with it. It is

the ERP component that does the work. If you go with the ACT folks, I would ask

them what sort of exposure component they are doing with the therapy. If there

is none, I would avoid it like the plague ( so to speak ha,ha- a little humor

for the contamination fears). I would ask for the number of OCD kids they have

treated and what percent of those have been treated successfully with the

modality they are using- ask about reduction in Yale Brown scores. Ask to see

their data on OCD in particular because although this is an anxiety disorder, it

can not be treated with cognitive therapy alone. The only PROVEN useful therapy

in OCD as far as I know ( although I admit I have not read the data on ACT) is

CBT/ERP.

Hang in there, this is a really hard time, but once you begin good therapy

things will get better (may get worse first for a period of time- I know taht is

hard to believe). You will survive this and your son can go on to be a strong

and capable young man who has fought to conquer a dragon and succeeded. (

although might want to keep the sword handy and at the ready for the rest of his

life in case the dragon is spotted again)

Start by getting yourself and him some good books about OCD ( see files

section). Ask all the questions you want- this board is full of wonderful people

who understand what you are going through, are knowledgable, and thoughtful and

open minded- Again, welcome and good luck with finding the right person. Good

interviewing before you start therapy can save you a ton of time wasted in

therapy.

>

> I wanted to do a quick intro and ask a few questions, as I'm new to the group.

My 8-year-old son was recently diagnosed with OCD/anxiety. I feel very lost and

scared right now. We are working through setting up all his treatment now, and

are struggling to figure out what all the right decisions are with that. I'll

give you some background on my son before I ask questions. We've always noticed

his " eccentric " behaviors, since he was a toddler. But there was nothing

extremely unusual and they always seemed to go away before they got to the point

of interfering with daily life. But the odd behaviors always came and went.

Counting, lots of hand-washing, repetitive " rituals. " But he has always done

well in school, been very social, not prone to tantrums or terrible behavior, so

none of these things seemed extreme or to interfere with his daily life. A

couple months ago we noticed the behaviors beginning to get more extreme, and at

the same time he was going through a phase where he was terrified something was

going to happen to my husband or I. To the point he'd break down and wouldn't

want to go to bed at night, really unlike him to cry and get really upset like

that. After a few weeks it subsided. We talked to his doctor, and she said

fear of death at his age was fairly normal, but if it didn't subside to bring

him in to discuss it. Again, it subsided. But his " cleaning " behaviors got a

little worse. A month ago we took a trip to visit family. My husband, daughter

(3-years-old), and I flew home after a week and our son stayed with my parents

another two weeks and then flew home with my mom. He was super excited about

his trip and getting to stay with my parents, and seemed to do very well at

first. He didn't act homesick and wasn't upset, but towards the end of the trip

he started worrying a lot about being clean, began showering more, got really

upset about having to sit on dirty things, and within just a couple weeks got to

the point where he was completely obssessing about specs of dirt, hugging his

family when we hadn't just taken a shower, or after we touched anything he

thought was " contaminated " (my word, not his). In just a few weeks things got

so completely extreme, it terrified us. I called his pediatrician and had a

long discussion with her. We then took him in to see her and he talked to her

about what was going on. Through that conversation and our conversations with

him, he told us how he knew it didn't make sense, but he felt like if he made

sure to stay clean and not touch dirty things, it would keep us all safe. The

level of thought he puts into it is unbelieveable to me. He asks questions, and

can trace someone's path through the house, everything they touch, take a

sanitary wipe clean everything up.

>

> In so many ways, it feels like in a extremely short period of time, he is

absolutely slipping away from us, and it is terrifying. I can't stop crying, I

am so afraid of what the future holds. At the same time I am trying to be

logical and realize that these behaviors have always been there, they have

gotten gradually worse, he's just been hiding them. Now that its in the open he

isn't hiding them at much (good I guess). The doctor and therapists we've

talked to also feel that the trip away from us for the first time caused some

anxiety and the compulsive behaviors getting extreme had to do with him trying

to deal with that anxiety (which, from what I'm reading so far sounds like the

norm with OCD). So I guess what we're seeing is in the " normal " realm for a

child with OCD. It is all new to us, so it is just very unnerving and

difficult.

>

> We've now talked with a few psychologists and gotten referrals to a couple

different programs for him. Our pediatrician recommended cognitive behavioral

therapy. But one of the better programs in the area uses a newer type of

therapy called " ACT " (Acceptance and Commitment Therapy). Both the program that

does CBT and the one that does ACT includes the whole family. We're also going

to take him to a psychiatrist who specialized is children with OCD.

>

> But we feel like we're going through this blindly, not sure about what the

right programs are. We've also been reading a number of books our pediatrician

recommended. We are in the Seattle area, so if there is anyone out there who

can recommend great therapists in this area that specialize in children with

OCD, I would love to hear from you. Our pediatrician is being extremely

helpful, and the two psychologists we've talked with so far are as well, but we

just want some more data to make sure we're making the right decisions on

approach.

>

> --Kim

>

[Guest guest]

Thank you so much for your response! I actually just got off the phone with a

therapist our pediatrician recommended trying that I've been playing phone tag

with for three days. He uses CBT and talked to me explicitly about the " very

important " ERP component of it! Which fits in exactly with what you wrote in

your response. He spent about 30 mins on the phone with me going over my son's

history and then discussed how he would approach a treatment plan. My husband

and I have a 9am session scheduled with him for Monday! After that, he'll start

sessions with our son (if we like him of course). I really really liked him

based on our phone conversation and feel about 100 times better after talking

with him. He has worked with many OCD/anxiety children. I didn't ask about

references to the Yale Brown scores you list below, but will do that on Monday.

We also called the psychiatrist our pedi recommended today. She is on vacation

until Monday, but will return our call then. We may setup a session with her as

well. Thank you thank you for the info, it is extremely helpful!

> >

> > I wanted to do a quick intro and ask a few questions, as I'm new to the

group. My 8-year-old son was recently diagnosed with OCD/anxiety. I feel very

lost and scared right now. We are working through setting up all his treatment

now, and are struggling to figure out what all the right decisions are with

that. I'll give you some background on my son before I ask questions. We've

always noticed his " eccentric " behaviors, since he was a toddler. But there was

nothing extremely unusual and they always seemed to go away before they got to

the point of interfering with daily life. But the odd behaviors always came and

went. Counting, lots of hand-washing, repetitive " rituals. " But he has always

done well in school, been very social, not prone to tantrums or terrible

behavior, so none of these things seemed extreme or to interfere with his daily

life. A couple months ago we noticed the behaviors beginning to get more

extreme, and at the same time he was going through a phase where he was

terrified something was going to happen to my husband or I. To the point he'd

break down and wouldn't want to go to bed at night, really unlike him to cry and

get really upset like that. After a few weeks it subsided. We talked to his

doctor, and she said fear of death at his age was fairly normal, but if it

didn't subside to bring him in to discuss it. Again, it subsided. But his

" cleaning " behaviors got a little worse. A month ago we took a trip to visit

family. My husband, daughter (3-years-old), and I flew home after a week and

our son stayed with my parents another two weeks and then flew home with my mom.

He was super excited about his trip and getting to stay with my parents, and

seemed to do very well at first. He didn't act homesick and wasn't upset, but

towards the end of the trip he started worrying a lot about being clean, began

showering more, got really upset about having to sit on dirty things, and within

just a couple weeks got to the point where he was completely obssessing about

specs of dirt, hugging his family when we hadn't just taken a shower, or after

we touched anything he thought was " contaminated " (my word, not his). In just a

few weeks things got so completely extreme, it terrified us. I called his

pediatrician and had a long discussion with her. We then took him in to see her

and he talked to her about what was going on. Through that conversation and our

conversations with him, he told us how he knew it didn't make sense, but he felt

like if he made sure to stay clean and not touch dirty things, it would keep us

all safe. The level of thought he puts into it is unbelieveable to me. He asks

questions, and can trace someone's path through the house, everything they

touch, take a sanitary wipe clean everything up.

> >

> > In so many ways, it feels like in a extremely short period of time, he is

absolutely slipping away from us, and it is terrifying. I can't stop crying, I

am so afraid of what the future holds. At the same time I am trying to be

logical and realize that these behaviors have always been there, they have

gotten gradually worse, he's just been hiding them. Now that its in the open he

isn't hiding them at much (good I guess). The doctor and therapists we've

talked to also feel that the trip away from us for the first time caused some

anxiety and the compulsive behaviors getting extreme had to do with him trying

to deal with that anxiety (which, from what I'm reading so far sounds like the

norm with OCD). So I guess what we're seeing is in the " normal " realm for a

child with OCD. It is all new to us, so it is just very unnerving and

difficult.

> >

> > We've now talked with a few psychologists and gotten referrals to a couple

different programs for him. Our pediatrician recommended cognitive behavioral

therapy. But one of the better programs in the area uses a newer type of

therapy called " ACT " (Acceptance and Commitment Therapy). Both the program that

does CBT and the one that does ACT includes the whole family. We're also going

to take him to a psychiatrist who specialized is children with OCD.

> >

> > But we feel like we're going through this blindly, not sure about what the

right programs are. We've also been reading a number of books our pediatrician

recommended. We are in the Seattle area, so if there is anyone out there who

can recommend great therapists in this area that specialize in children with

OCD, I would love to hear from you. Our pediatrician is being extremely

helpful, and the two psychologists we've talked with so far are as well, but we

just want some more data to make sure we're making the right decisions on

approach.

> >

> > --Kim

> >

>

[Guest guest]

Kim, I have heard really, really good things about:

 

L. Osborne PhD

BTTI Graduate

1200 5th Ave., Suite 800

Seattle, Washington 98101

 

You can also check on www.ocfoundation.org and do a search of treatment

providers in the Seattle area.  I moved to Kitsap County a few years ago and

was able to find good help over here, but asked alot before moving and Dr.

Osborne was very highly recommended.

 

in WA

To:

Sent: Thursday, July 19, 2012 11:20 AM

Subject: Re: New to group, and OCD

 

Welcome to the group! Your son sounds very similar to mine. Clearly had the

stuff his whole life then diagnosed at age 3 when things clearly exploded.

Similar compulsions and worries. He is now 16 and doing very well. I know it

feels like things will never get better ,but with treatment they will. OCD also

tends to wax and wane so some of the coming and going may be due to that, not to

'hiding " it. The good thing about being diagnosed is that you can start

treatment which when done well can be very effective. It sounds like you are

really lucky if you have already found a psychiatrist who specializes in

treating children with OCD you are WAY ahead of the game! You might also ask

them for recommendations on therapists in the area. YOu could also check the OCF

website which has a therapist page- people who feel they know enough to want to

post their info to get OCD patients

RE therapy:

Neither CBT alone nor ACT ( I know nothing about it other than what I just read

on internet) is likely to do anything for OCD. If you do CBT, there needs to be

an ERP component (exposure response prevention) and should ideally be done by

someone experienced with OCD in children. Many people say they know how to treat

OCD or say they do CBT, but dont really do effective ERP with it. It is the ERP

component that does the work. If you go with the ACT folks, I would ask them

what sort of exposure component they are doing with the therapy. If there is

none, I would avoid it like the plague ( so to speak ha,ha- a little humor for

the contamination fears). I would ask for the number of OCD kids they have

treated and what percent of those have been treated successfully with the

modality they are using- ask about reduction in Yale Brown scores. Ask to see

their data on OCD in particular because although this is an anxiety disorder, it

can not be treated with

cognitive therapy alone. The only PROVEN useful therapy in OCD as far as I know

( although I admit I have not read the data on ACT) is CBT/ERP.

Hang in there, this is a really hard time, but once you begin good therapy

things will get better (may get worse first for a period of time- I know taht is

hard to believe). You will survive this and your son can go on to be a strong

and capable young man who has fought to conquer a dragon and succeeded. (

although might want to keep the sword handy and at the ready for the rest of his

life in case the dragon is spotted again)

Start by getting yourself and him some good books about OCD ( see files

section). Ask all the questions you want- this board is full of wonderful people

who understand what you are going through, are knowledgable, and thoughtful and

open minded- Again, welcome and good luck with finding the right person. Good

interviewing before you start therapy can save you a ton of time wasted in

therapy.

>

> I wanted to do a quick intro and ask a few questions, as I'm new to the group.

My 8-year-old son was recently diagnosed with OCD/anxiety. I feel very lost and

scared right now. We are working through setting up all his treatment now, and

are struggling to figure out what all the right decisions are with that. I'll

give you some background on my son before I ask questions. We've always noticed

his " eccentric " behaviors, since he was a toddler. But there was nothing

extremely unusual and they always seemed to go away before they got to the point

of interfering with daily life. But the odd behaviors always came and went.

Counting, lots of hand-washing, repetitive " rituals. " But he has always done

well in school, been very social, not prone to tantrums or terrible behavior, so

none of these things seemed extreme or to interfere with his daily life. A

couple months ago we noticed the behaviors beginning to get more extreme, and at

the same time he was going

through a phase where he was terrified something was going to happen to my

husband or I. To the point he'd break down and wouldn't want to go to bed at

night, really unlike him to cry and get really upset like that. After a few

weeks it subsided. We talked to his doctor, and she said fear of death at his

age was fairly normal, but if it didn't subside to bring him in to discuss it.

Again, it subsided. But his " cleaning " behaviors got a little worse. A month ago

we took a trip to visit family. My husband, daughter (3-years-old), and I flew

home after a week and our son stayed with my parents another two weeks and then

flew home with my mom. He was super excited about his trip and getting to stay

with my parents, and seemed to do very well at first. He didn't act homesick and

wasn't upset, but towards the end of the trip he started worrying a lot about

being clean, began showering more, got really upset about having to sit on dirty

things, and within just

a couple weeks got to the point where he was completely obssessing about specs

of dirt, hugging his family when we hadn't just taken a shower, or after we

touched anything he thought was " contaminated " (my word, not his). In just a few

weeks things got so completely extreme, it terrified us. I called his

pediatrician and had a long discussion with her. We then took him in to see her

and he talked to her about what was going on. Through that conversation and our

conversations with him, he told us how he knew it didn't make sense, but he felt

like if he made sure to stay clean and not touch dirty things, it would keep us

all safe. The level of thought he puts into it is unbelieveable to me. He asks

questions, and can trace someone's path through the house, everything they

touch, take a sanitary wipe clean everything up.

>

> In so many ways, it feels like in a extremely short period of time, he is

absolutely slipping away from us, and it is terrifying. I can't stop crying, I

am so afraid of what the future holds. At the same time I am trying to be

logical and realize that these behaviors have always been there, they have

gotten gradually worse, he's just been hiding them. Now that its in the open he

isn't hiding them at much (good I guess). The doctor and therapists we've talked

to also feel that the trip away from us for the first time caused some anxiety

and the compulsive behaviors getting extreme had to do with him trying to deal

with that anxiety (which, from what I'm reading so far sounds like the norm with

OCD). So I guess what we're seeing is in the " normal " realm for a child with

OCD. It is all new to us, so it is just very unnerving and difficult.

>

> We've now talked with a few psychologists and gotten referrals to a couple

different programs for him. Our pediatrician recommended cognitive behavioral

therapy. But one of the better programs in the area uses a newer type of therapy

called " ACT " (Acceptance and Commitment Therapy). Both the program that does CBT

and the one that does ACT includes the whole family. We're also going to take

him to a psychiatrist who specialized is children with OCD.

>

> But we feel like we're going through this blindly, not sure about what the

right programs are. We've also been reading a number of books our pediatrician

recommended. We are in the Seattle area, so if there is anyone out there who can

recommend great therapists in this area that specialize in children with OCD, I

would love to hear from you. Our pediatrician is being extremely helpful, and

the two psychologists we've talked with so far are as well, but we just want

some more data to make sure we're making the right decisions on approach.

>

> --Kim

>

[Guest guest]

Ok, so here is how it should work- Threrapist meets you and explains process- 1

visit

Therapist meets your son, explains process and evaluates severity-1-2 visits

Homework- your son records his OCD thoughts and actions for 1-2 weeks every day

as homework

Therapist and son set up fear heirarchy- 1 visit

You establish a reward system ( homework)

You get to work on CBT/ERP with DAILY ( or several times daily) homework. If

you are not doing ERP within 3-5 visits (with your son) there is a problem. They

may want to see him 1-2 times a week initially. You should be in the room for

most or all of every session because you need to be the one setting up the

exposures and working through it with your child. There is not the

confidentially stuff associated with other therapy (ie lie on the couch and tell

me about your mother) and it is not observed play therapy- this is very goal

directed and explicit.

Evaluating severity is done with some metric like a Yale Brown and puts them

into mild/ mod/ severe categories. The hope is that the score will reduce

SIGNIFICANTLY within about 3-4 months ( with good therapy it is not a lifelong

process of actively going to therapy weekly but spot treatments here and there

and then ongoing maintinance which many can do at home). They should be checking

some severity metric here and there to see that the work is effective. The last

time my son did therapy he went from a YB score of 22 (moderate) to not

diagnosable in 10 weeks. He is a teen now and rebels against any therapy

although we are dong some at home over the summer ( perfectionism and holding or

shaking hands or passing something directly to someone as well as spots and

messiness).

However, as i said, my son, who lost 5 years of his life to this disease-

totally nonfunctional, crying 20 hours a day, not eating (Yale Brown score of

40) etc, is a straight A student, star varsity athlete on 3 varsity ( not JV )

teams as a freshman, totally popular kid. He is mostly happy (except when I

make him do something he doesnt want to do- like ERP or turning off the TV). He

is not currently in therapy, takes a tiny dose of Zoloft ( not really even a

dose considered effective for OCD) and my guess would be has a YB score of

something like 12-15 ( mild) if he were honest about it. It still gets in the

way here and there, but his life is good. And let me tell you, I was pretty sure

for a long long time that he needed lifelong inpatient hospitalization in some

facility. I tell you this because I know it can feel hopeless when you are in

the middle of it. Your kid has been swept away by a horrible undertow, and you

are not sure when/ if you will see the kid again.

It sounds like you are way ahead of the game if you already got an appointment

with someone who actually knows about CBT/ERP ( if they actually know how to do

it- you can only hope). Where we are it takes 6-8 months to get a child

psychiatrist and is impossible to find anyone trained in CBT/ERP so I have had

to become an expert myself. If you want some practical advice about what it

should look like, I have written a lot of posts in the past describing it in

detail. If you search my name, and go back to posts about CBT/ERP you can see

what I have written in past as a guide for what real CBT/ERP should be like.

Good luck with it. it is super hard and painful work, but totally worth it. If

he is unable to engage with it due to too much anxiety then that is when meds or

other options ( inositol, NAC, herbals) should be tried. Already might be good

to begin fishoil, a multivit high in B vitamins, calcium/ magnesium and Vit D (

you live in Seattle right _no sun). We also found diet changes to be very

helpful. A diet with low sugar and high protein and low food additives( coloring

, nitrates/ nitrites, MSG) was very helpful- easier to do young and harder as a

teen

[Guest guest]

Sorry to hear what you are going through. Our daughter had a lot of similar

issues. It amazing how they can remember every move anyone makes and tie it

together to rationalize how something gets contaminated.

I'm curious, has your doctor or therapist suggested looking into

PANS/PANDAS/PITAND at all? Have they run any tests for infections or autoimmune

issues (strep, Lyme, mycoplasma pneumonia are just a few). These can all result

in OCD and other neuropsychiatric behaviors. My dd was diagnosed with PANDAS a

couple of years ago, then Lyme and Bartonella (another tick born illness). With

treatment for those infections she is basically back to normal (knock on wood).

It was not a short or smooth path, but it seems to have worked.

There is a PANDAS folder in the " files " section on this site with some

information.

The International OCD foundation also has some info and public service

announcement about PANS. You may want to take a look at those.

http://ocfoundation.org/PANDAS/

Also: www.pandasresourcenetwork.org

www.pandasnetwork.org

And I just have to say, the sudden/acute onset does not really have to be

overnight. My dd, like yours, had some quirkiness, then the OCD slowly ramped up

over the course of a few months, until, bang, she couldn't function.

If you have any questions, feel free to post or email me.

Kara

>

> I wanted to do a quick intro and ask a few questions, as I'm new to the group.

My 8-year-old son was recently diagnosed with OCD/anxiety. I feel very lost and

scared right now. We are working through setting up all his treatment now, and

are struggling to figure out what all the right decisions are with that. I'll

give you some background on my son before I ask questions. We've always noticed

his " eccentric " behaviors, since he was a toddler. But there was nothing

extremely unusual and they always seemed to go away before they got to the point

of interfering with daily life. But the odd behaviors always came and went.

Counting, lots of hand-washing, repetitive " rituals. " But he has always done

well in school, been very social, not prone to tantrums or terrible behavior, so

none of these things seemed extreme or to interfere with his daily life. A

couple months ago we noticed the behaviors beginning to get more extreme, and at

the same time he was going through a phase where he was terrified something was

going to happen to my husband or I. To the point he'd break down and wouldn't

want to go to bed at night, really unlike him to cry and get really upset like

that. After a few weeks it subsided. We talked to his doctor, and she said

fear of death at his age was fairly normal, but if it didn't subside to bring

him in to discuss it. Again, it subsided. But his " cleaning " behaviors got a

little worse. A month ago we took a trip to visit family. My husband, daughter

(3-years-old), and I flew home after a week and our son stayed with my parents

another two weeks and then flew home with my mom. He was super excited about

his trip and getting to stay with my parents, and seemed to do very well at

first. He didn't act homesick and wasn't upset, but towards the end of the trip

he started worrying a lot about being clean, began showering more, got really

upset about having to sit on dirty things, and within just a couple weeks got to

the point where he was completely obssessing about specs of dirt, hugging his

family when we hadn't just taken a shower, or after we touched anything he

thought was " contaminated " (my word, not his). In just a few weeks things got

so completely extreme, it terrified us. I called his pediatrician and had a

long discussion with her. We then took him in to see her and he talked to her

about what was going on. Through that conversation and our conversations with

him, he told us how he knew it didn't make sense, but he felt like if he made

sure to stay clean and not touch dirty things, it would keep us all safe. The

level of thought he puts into it is unbelieveable to me. He asks questions, and

can trace someone's path through the house, everything they touch, take a

sanitary wipe clean everything up.

>

> In so many ways, it feels like in a extremely short period of time, he is

absolutely slipping away from us, and it is terrifying. I can't stop crying, I

am so afraid of what the future holds. At the same time I am trying to be

logical and realize that these behaviors have always been there, they have

gotten gradually worse, he's just been hiding them. Now that its in the open he

isn't hiding them at much (good I guess). The doctor and therapists we've

talked to also feel that the trip away from us for the first time caused some

anxiety and the compulsive behaviors getting extreme had to do with him trying

to deal with that anxiety (which, from what I'm reading so far sounds like the

norm with OCD). So I guess what we're seeing is in the " normal " realm for a

child with OCD. It is all new to us, so it is just very unnerving and

difficult.

>

> We've now talked with a few psychologists and gotten referrals to a couple

different programs for him. Our pediatrician recommended cognitive behavioral

therapy. But one of the better programs in the area uses a newer type of

therapy called " ACT " (Acceptance and Commitment Therapy). Both the program that

does CBT and the one that does ACT includes the whole family. We're also going

to take him to a psychiatrist who specialized is children with OCD.

>

> But we feel like we're going through this blindly, not sure about what the

right programs are. We've also been reading a number of books our pediatrician

recommended. We are in the Seattle area, so if there is anyone out there who

can recommend great therapists in this area that specialize in children with

OCD, I would love to hear from you. Our pediatrician is being extremely

helpful, and the two psychologists we've talked with so far are as well, but we

just want some more data to make sure we're making the right decisions on

approach.

>

> --Kim

>

[Guest guest]

Yes, both docs have talked about PANDAS to verify recent colds/sore throats, etc

but haven't run any tests. Based on the long history of OCD like behaviors that

were just never very severe, they don't believe this is a PANDA type situation.

They think the more " sudden " onset we witnessed had to do with the anxiety of

being away from home for two weeks for the first time, plus the fact that we'd

already seen the behaviors worstening over the past few months.

> >

> > I wanted to do a quick intro and ask a few questions, as I'm new to the

group. My 8-year-old son was recently diagnosed with OCD/anxiety. I feel very

lost and scared right now. We are working through setting up all his treatment

now, and are struggling to figure out what all the right decisions are with

that. I'll give you some background on my son before I ask questions. We've

always noticed his " eccentric " behaviors, since he was a toddler. But there was

nothing extremely unusual and they always seemed to go away before they got to

the point of interfering with daily life. But the odd behaviors always came and

went. Counting, lots of hand-washing, repetitive " rituals. " But he has always

done well in school, been very social, not prone to tantrums or terrible

behavior, so none of these things seemed extreme or to interfere with his daily

life. A couple months ago we noticed the behaviors beginning to get more

extreme, and at the same time he was going through a phase where he was

terrified something was going to happen to my husband or I. To the point he'd

break down and wouldn't want to go to bed at night, really unlike him to cry and

get really upset like that. After a few weeks it subsided. We talked to his

doctor, and she said fear of death at his age was fairly normal, but if it

didn't subside to bring him in to discuss it. Again, it subsided. But his

" cleaning " behaviors got a little worse. A month ago we took a trip to visit

family. My husband, daughter (3-years-old), and I flew home after a week and

our son stayed with my parents another two weeks and then flew home with my mom.

He was super excited about his trip and getting to stay with my parents, and

seemed to do very well at first. He didn't act homesick and wasn't upset, but

towards the end of the trip he started worrying a lot about being clean, began

showering more, got really upset about having to sit on dirty things, and within

just a couple weeks got to the point where he was completely obssessing about

specs of dirt, hugging his family when we hadn't just taken a shower, or after

we touched anything he thought was " contaminated " (my word, not his). In just a

few weeks things got so completely extreme, it terrified us. I called his

pediatrician and had a long discussion with her. We then took him in to see her

and he talked to her about what was going on. Through that conversation and our

conversations with him, he told us how he knew it didn't make sense, but he felt

like if he made sure to stay clean and not touch dirty things, it would keep us

all safe. The level of thought he puts into it is unbelieveable to me. He asks

questions, and can trace someone's path through the house, everything they

touch, take a sanitary wipe clean everything up.

> >

> > In so many ways, it feels like in a extremely short period of time, he is

absolutely slipping away from us, and it is terrifying. I can't stop crying, I

am so afraid of what the future holds. At the same time I am trying to be

logical and realize that these behaviors have always been there, they have

gotten gradually worse, he's just been hiding them. Now that its in the open he

isn't hiding them at much (good I guess). The doctor and therapists we've

talked to also feel that the trip away from us for the first time caused some

anxiety and the compulsive behaviors getting extreme had to do with him trying

to deal with that anxiety (which, from what I'm reading so far sounds like the

norm with OCD). So I guess what we're seeing is in the " normal " realm for a

child with OCD. It is all new to us, so it is just very unnerving and

difficult.

> >

> > We've now talked with a few psychologists and gotten referrals to a couple

different programs for him. Our pediatrician recommended cognitive behavioral

therapy. But one of the better programs in the area uses a newer type of

therapy called " ACT " (Acceptance and Commitment Therapy). Both the program that

does CBT and the one that does ACT includes the whole family. We're also going

to take him to a psychiatrist who specialized is children with OCD.

> >

> > But we feel like we're going through this blindly, not sure about what the

right programs are. We've also been reading a number of books our pediatrician

recommended. We are in the Seattle area, so if there is anyone out there who

can recommend great therapists in this area that specialize in children with

OCD, I would love to hear from you. Our pediatrician is being extremely

helpful, and the two psychologists we've talked with so far are as well, but we

just want some more data to make sure we're making the right decisions on

approach.

> >

> > --Kim

> >

>

[Guest guest]

You sound like you have some good knowledgable doctors- you are very lucky with

that! My son also has always had OCD- his whole entire life with first true

conpulsive symptoms at 9 months old. But not dx til age 3 when he was severe.

He always gets worse when he is sick, but has only had strep once and was well

at the time and I agree that he is unlikely to have PANS. I just think the

stress of sickness makes him worse.

> > >

> > > I wanted to do a quick intro and ask a few questions, as I'm new to the

group. My 8-year-old son was recently diagnosed with OCD/anxiety. I feel very

lost and scared right now. We are working through setting up all his treatment

now, and are struggling to figure out what all the right decisions are with

that. I'll give you some background on my son before I ask questions. We've

always noticed his " eccentric " behaviors, since he was a toddler. But there was

nothing extremely unusual and they always seemed to go away before they got to

the point of interfering with daily life. But the odd behaviors always came and

went. Counting, lots of hand-washing, repetitive " rituals. " But he has always

done well in school, been very social, not prone to tantrums or terrible

behavior, so none of these things seemed extreme or to interfere with his daily

life. A couple months ago we noticed the behaviors beginning to get more

extreme, and at the same time he was going through a phase where he was

terrified something was going to happen to my husband or I. To the point he'd

break down and wouldn't want to go to bed at night, really unlike him to cry and

get really upset like that. After a few weeks it subsided. We talked to his

doctor, and she said fear of death at his age was fairly normal, but if it

didn't subside to bring him in to discuss it. Again, it subsided. But his

" cleaning " behaviors got a little worse. A month ago we took a trip to visit

family. My husband, daughter (3-years-old), and I flew home after a week and

our son stayed with my parents another two weeks and then flew home with my mom.

He was super excited about his trip and getting to stay with my parents, and

seemed to do very well at first. He didn't act homesick and wasn't upset, but

towards the end of the trip he started worrying a lot about being clean, began

showering more, got really upset about having to sit on dirty things, and within

just a couple weeks got to the point where he was completely obssessing about

specs of dirt, hugging his family when we hadn't just taken a shower, or after

we touched anything he thought was " contaminated " (my word, not his). In just a

few weeks things got so completely extreme, it terrified us. I called his

pediatrician and had a long discussion with her. We then took him in to see her

and he talked to her about what was going on. Through that conversation and our

conversations with him, he told us how he knew it didn't make sense, but he felt

like if he made sure to stay clean and not touch dirty things, it would keep us

all safe. The level of thought he puts into it is unbelieveable to me. He asks

questions, and can trace someone's path through the house, everything they

touch, take a sanitary wipe clean everything up.

> > >

> > > In so many ways, it feels like in a extremely short period of time, he is

absolutely slipping away from us, and it is terrifying. I can't stop crying, I

am so afraid of what the future holds. At the same time I am trying to be

logical and realize that these behaviors have always been there, they have

gotten gradually worse, he's just been hiding them. Now that its in the open he

isn't hiding them at much (good I guess). The doctor and therapists we've

talked to also feel that the trip away from us for the first time caused some

anxiety and the compulsive behaviors getting extreme had to do with him trying

to deal with that anxiety (which, from what I'm reading so far sounds like the

norm with OCD). So I guess what we're seeing is in the " normal " realm for a

child with OCD. It is all new to us, so it is just very unnerving and

difficult.

> > >

> > > We've now talked with a few psychologists and gotten referrals to a couple

different programs for him. Our pediatrician recommended cognitive behavioral

therapy. But one of the better programs in the area uses a newer type of

therapy called " ACT " (Acceptance and Commitment Therapy). Both the program that

does CBT and the one that does ACT includes the whole family. We're also going

to take him to a psychiatrist who specialized is children with OCD.

> > >

> > > But we feel like we're going through this blindly, not sure about what the

right programs are. We've also been reading a number of books our pediatrician

recommended. We are in the Seattle area, so if there is anyone out there who

can recommend great therapists in this area that specialize in children with

OCD, I would love to hear from you. Our pediatrician is being extremely

helpful, and the two psychologists we've talked with so far are as well, but we

just want some more data to make sure we're making the right decisions on

approach.

> > >

> > > --Kim

> > >

> >

>

[Guest guest]

Quick note:

Kim- have you been recommended a book on OCD written for children:

What to Do When Your Brain Gets Stuck, by Dawn Huber.

Also a book for adults by Tamar Chansky with OCD in the title.  We got both from

our library but you may want to by the HUber book since it has workbook pages in

it.

Hang in there, keep posting.  We are all walking through this alongside you,

Tara

[Guest guest]

Quick note:

Kim- have you been recommended a book on OCD written for children:

What to Do When Your Brain Gets Stuck, by Dawn Huber.

Also a book for adults by Tamar Chansky with OCD in the title.  We got both from

our library but you may want to by the HUber book since it has workbook pages in

it.

Hang in there, keep posting.  We are all walking through this alongside you,

Tara

[Guest guest]

Quick note:

Kim- have you been recommended a book on OCD written for children:

What to Do When Your Brain Gets Stuck, by Dawn Huber.

Also a book for adults by Tamar Chansky with OCD in the title.  We got both from

our library but you may want to by the HUber book since it has workbook pages in

it.

Hang in there, keep posting.  We are all walking through this alongside you,

Tara

[Guest guest]

This sounds SO familiar to me. My daughter was diagnosed at 8...after 2 years

of

questions. BUT, she is doing well now. She is a senior in high school, with a

4.2 gpa

and hopes of attending high school.

We have had many ups and downs... including a spell of agoraphobia.! Problems

with attending school...eating lunch at school...field trips... etc....

She currently has depressional issues.

BUT.... I wanted to give you hope.!! She is doing well in school!!! and

fighting hard against OCD....and winning!!

Feel free to email me at any time. galemontague@.... I won't bore

everyone with the details...but, I am available to any that need support.

gale montague

[Guest guest]

This sounds SO familiar to me. My daughter was diagnosed at 8...after 2 years

of

questions. BUT, she is doing well now. She is a senior in high school, with a

4.2 gpa

and hopes of attending high school.

We have had many ups and downs... including a spell of agoraphobia.! Problems

with attending school...eating lunch at school...field trips... etc....

She currently has depressional issues.

BUT.... I wanted to give you hope.!! She is doing well in school!!! and

fighting hard against OCD....and winning!!

Feel free to email me at any time. galemontague@.... I won't bore

everyone with the details...but, I am available to any that need support.

gale montague

[Guest guest]

This sounds SO familiar to me. My daughter was diagnosed at 8...after 2 years

of

questions. BUT, she is doing well now. She is a senior in high school, with a

4.2 gpa

and hopes of attending high school.

We have had many ups and downs... including a spell of agoraphobia.! Problems

with attending school...eating lunch at school...field trips... etc....

She currently has depressional issues.

BUT.... I wanted to give you hope.!! She is doing well in school!!! and

fighting hard against OCD....and winning!!

Feel free to email me at any time. galemontague@.... I won't bore

everyone with the details...but, I am available to any that need support.

gale montague