Re: New onset in 6 year old

[Guest guest]

Hi Misty,

You have already had good posts about PANS/PANDAS. Just thought I'd mention

about behaviors. The defiance, temper, inflexibility all go will OCD, maybe not

for all, but common, we dealt with this a lot.

Our son was seemingly overnight, the severe onset was anyway, can name the date

same as you. In the end we could trace back and see that it was always there,

but hidden. The severe onset was a nightmare, overnight your world is turned

upside down, no easy answers to all the stuff that comes up. Know that with

time you will find your way with this though.

So, in terms of behavior stuff, forget about discipline with anything that has

OCD attached to it, at least for now. If OCD is driving a response nothing will

alter it, and it is not about being bad or deliberately trying to be difficult,

they simply cannot do otherwise - they are " compelled " , ie compulsion.

Reassure her that you know she can't help herself from saying or doing things

she wouldn't normally do, and that it is the OCD bully in her head making her.

Help her find a name to call the OCD, and you can both refer to it as the

" problem " when stuff comes up. It's like focusing on the behavior not the

child, make it about the OCD, not her. Let he know that the therapist will help

her tame the OCD bully, that she will learn how to make the thoughts grow

smaller, little by little. The book, What to do when your brain gets stuck, is

really good to explain ERP, and has a workbook part.

You mention she might be hiding some of her thoughts from you. You might try

talking with her about all the possible kind of thoughts she might have going on

in her head, and reassure her that they are " just " thoughts, not real, not true,

and she does not have to listen to them. It can be pretty scary for them, and

they can feel embarrassed or ashamed, so it's important that they know it has

nothing to do with them as a person, just weird thoughts. Also explain that the

more she is afraid of them and believes them the more power they have, just like

a bully.

Talking about the OCD can trigger it for them, so this can also stop them from

wanting to talk about it. However, it helps take the power away from it to not

keep it secret. A book might be the best way to bring things out. Or maybe if

she likes to draw, she could draw the OCD monster. Even a silly song or poem

can help break the " spell " when they are locked into the OCD. I sang to my 20yr

old son the other day, basically identifying his carrying on as OCD(he needs to

tell me stuff as his ritual), made him laugh, and broke the hold the OCD had on

the moment.

The walking on eggshells syndrome is also pretty common, feels like a war zone,

trying to avoid landmines and resulting explosions. In the crisis stages it's

pretty impossible to not have the outbursts, so much sets them off. The more

neutral you can be, impossible I know, the better. Just let things go, let her

blow, know that it is not " real " , in the sense that there is a discipline

problem. Name it as OCD, and wait it out.

Wait until she is calm and discuss plan for next time. Plan might be to use a

certain word to cue you the OCD is triggered, you can then remind her to make a

good choice, ie. not yell or harm or whatever,tell her what she is allowed to

do, maybe to remove herself, or maybe she needs you to help her calm -

separation anxiety can be a problem. Thing is, they are so overwhelmed and

without any coping skills, they can really regress age-wise, and be very

dependent. Again, with time, as she learns the tools of ERP and how to manage

the OCD this will all improve.

Our son could not sleep, and the OCD was around the clock, could no longer go to

school, or function in any meaningful way,three months non-stop. After ERP was

attempted and was just not possible, we started medication. He could then

sleep, and did not suffer around the clock to the same degree. Took a while for

ERP to be possible, lots of challenges, plus ours was a teen and not on board.

But eventually he took it on and then things got better really quickly. He's ok

now, not doing as well as he has, but at least he knows what he needs to do and

how to do it - that is everything with managing OCD!

In your case, if it IS PANS that needs to be addressed. It is not an easy path,

and access to expert docs a challenge, but many on this board have had good

results. You do want to rule this in or out as a possibility.

It really does feel like you've fallen down the rabbit hole. There is no road

map to follow, but there are many here who have been down this road and can

support you with all this. Keep posting your questions and concerns, and

reaching out to others who understand. The only thing harder than this disorder

is the isolation that can come with trying to cope alone. Know that you are not

alone with this.

Warmly,

Barb

Canada

Son, 20, OCD, LD Plus

>

> Hi. This is my first post here. My daughter is 6 and suddenly developed OCD

May 26th. Behavior problems started 3 days later including defiance, temper

tantrums and cognitive inflexibility. She was an obedient child prior to this

who occasionally had inappropriate behavior when she was overly tired (like most

children). We have met with a therapist once, who basically took her history and

will see her again on Thursday. I am aware of PANDAS and threw a fit to get our

pediatrician to test her. The whole family was swabbed for strep and the

cultures were all negative. My daughter's strep titer was negative, too. As

far as we know she has never had strep. We are waiting on one more lab. I

don't remember the name of it or what it is looking for. The nurse didn't know

what is was for, either.

>

> Her OCD and behavior issues come and go.

>

> Anyway, my husband and I are devastated and lost. Our family is disrupted and

we don't know what to do. Dealing with her is exhausting and last night she

developed insomnia due to her obsessive thoughts, making my husband and me even

more exhausted. She just said to me moments ago, " I don't know why I've gotten

to where I don't obey " out of the blue. I started crying. We are walking on

eggshells around her to not set off behavior issues, but at the same time are

trying to balance a healthy level of discipline. I feel like the stress of this

is going to kill me.

>

> Can anyone offer me any support? Is this going to get better?

>

> Misty

>

[Guest guest]

Hi- great advice Tara. I too have a young child with OCD and live in Chicago!!

It's very difficult treating this so young. My daughter is working through the

same book with her therapist. Are u seeing any bouts of anger? We r struggling

more with the anger at this point. Not sure if that's because of her young age?

Sent from my iPhone

> Just a few thoughts about survival until things settle down a bit.

>

> Our son who is 8 had onset of OCD at age 6. Although we can look back and see

behaviors that were ritualistic before that, the disruptive compulsive, fear

based stuff seemed to come on overnight. I do remember our house falling into

total chaos for a few hours each evening. At some point my husband and I looked

at each other and one of us asked, " Do you think this is OCD " We starting

googling OCD in kids and we were on our way.

>

> Helpful finds:

> The ocd foundation website has a list of practitioners. I called and talked

to a dozen on the phone, asking about treatment and recommended therapy and

rates. This took a lot of time but was really helpful. I learned we should be

looking for someone who does exposure-response treatment with children. Then I

went through our insurance until I found someone in network with the right

experience. It was worth doing this, since it have saved us thousands of dollars

staying in network. He is a social worker, and he is just the right person for

our family. You can treat OCD yourself, but it is exhausting and it is

worthwhile to have someone coaching you through it.

>

> There is a book written for children by Dawn Huber - What to do when your

Brain gets stuck. Our library has it, and amazon sells it. We read it aloud to

our son one chapter at a time. It really teaches you how to fight OCD, and since

most therapy happens at home the parents need to be part of the response. It is

a cute book. Best resource ever, and we re-read it again this year.

>

> Tamar Chansky wrote a book about OCD for parents and that was a good read for

me since I was not familiar with this disorder.

>

> My two cents on supporting a young child with OCD: look for someone who is

comfortable with therapy and not someone who wants to jump straight into

medication. We felt completely out of control and things came back in control

very quickly with therapy alone. Meds may be necessary, but maybe not. We were

glad we gave therapy a shot first.

>

> Keep the group posted on how it is going. Hang in there Momma.

>

> Tara (Chicago)

>

>

[Guest guest]

Hi- great advice Tara. I too have a young child with OCD and live in Chicago!!

It's very difficult treating this so young. My daughter is working through the

same book with her therapist. Are u seeing any bouts of anger? We r struggling

more with the anger at this point. Not sure if that's because of her young age?

Sent from my iPhone

> Just a few thoughts about survival until things settle down a bit.

>

> Our son who is 8 had onset of OCD at age 6. Although we can look back and see

behaviors that were ritualistic before that, the disruptive compulsive, fear

based stuff seemed to come on overnight. I do remember our house falling into

total chaos for a few hours each evening. At some point my husband and I looked

at each other and one of us asked, " Do you think this is OCD " We starting

googling OCD in kids and we were on our way.

>

> Helpful finds:

> The ocd foundation website has a list of practitioners. I called and talked

to a dozen on the phone, asking about treatment and recommended therapy and

rates. This took a lot of time but was really helpful. I learned we should be

looking for someone who does exposure-response treatment with children. Then I

went through our insurance until I found someone in network with the right

experience. It was worth doing this, since it have saved us thousands of dollars

staying in network. He is a social worker, and he is just the right person for

our family. You can treat OCD yourself, but it is exhausting and it is

worthwhile to have someone coaching you through it.

>

> There is a book written for children by Dawn Huber - What to do when your

Brain gets stuck. Our library has it, and amazon sells it. We read it aloud to

our son one chapter at a time. It really teaches you how to fight OCD, and since

most therapy happens at home the parents need to be part of the response. It is

a cute book. Best resource ever, and we re-read it again this year.

>

> Tamar Chansky wrote a book about OCD for parents and that was a good read for

me since I was not familiar with this disorder.

>

> My two cents on supporting a young child with OCD: look for someone who is

comfortable with therapy and not someone who wants to jump straight into

medication. We felt completely out of control and things came back in control

very quickly with therapy alone. Meds may be necessary, but maybe not. We were

glad we gave therapy a shot first.

>

> Keep the group posted on how it is going. Hang in there Momma.

>

> Tara (Chicago)

>

>

[Guest guest]

Thank you, Barb. So much of what you said rings true and really helps me feel

understood. I appreciate all the good tips.

From: bnesrallah

Sent: Tuesday, June 05, 2012 9:45 PM

To:

Subject: Re: New onset in 6 year old

Hi Misty,

You have already had good posts about PANS/PANDAS. Just thought I'd mention

about behaviors. The defiance, temper, inflexibility all go will OCD, maybe not

for all, but common, we dealt with this a lot.

Our son was seemingly overnight, the severe onset was anyway, can name the date

same as you. In the end we could trace back and see that it was always there,

but hidden. The severe onset was a nightmare, overnight your world is turned

upside down, no easy answers to all the stuff that comes up. Know that with time

you will find your way with this though.

So, in terms of behavior stuff, forget about discipline with anything that has

OCD attached to it, at least for now. If OCD is driving a response nothing will

alter it, and it is not about being bad or deliberately trying to be difficult,

they simply cannot do otherwise - they are " compelled " , ie compulsion.

Reassure her that you know she can't help herself from saying or doing things

she wouldn't normally do, and that it is the OCD bully in her head making her.

Help her find a name to call the OCD, and you can both refer to it as the

" problem " when stuff comes up. It's like focusing on the behavior not the child,

make it about the OCD, not her. Let he know that the therapist will help her

tame the OCD bully, that she will learn how to make the thoughts grow smaller,

little by little. The book, What to do when your brain gets stuck, is really

good to explain ERP, and has a workbook part.

You mention she might be hiding some of her thoughts from you. You might try

talking with her about all the possible kind of thoughts she might have going on

in her head, and reassure her that they are " just " thoughts, not real, not true,

and she does not have to listen to them. It can be pretty scary for them, and

they can feel embarrassed or ashamed, so it's important that they know it has

nothing to do with them as a person, just weird thoughts. Also explain that the

more she is afraid of them and believes them the more power they have, just like

a bully.

Talking about the OCD can trigger it for them, so this can also stop them from

wanting to talk about it. However, it helps take the power away from it to not

keep it secret. A book might be the best way to bring things out. Or maybe if

she likes to draw, she could draw the OCD monster. Even a silly song or poem can

help break the " spell " when they are locked into the OCD. I sang to my 20yr old

son the other day, basically identifying his carrying on as OCD(he needs to tell

me stuff as his ritual), made him laugh, and broke the hold the OCD had on the

moment.

The walking on eggshells syndrome is also pretty common, feels like a war zone,

trying to avoid landmines and resulting explosions. In the crisis stages it's

pretty impossible to not have the outbursts, so much sets them off. The more

neutral you can be, impossible I know, the better. Just let things go, let her

blow, know that it is not " real " , in the sense that there is a discipline

problem. Name it as OCD, and wait it out.

Wait until she is calm and discuss plan for next time. Plan might be to use a

certain word to cue you the OCD is triggered, you can then remind her to make a

good choice, ie. not yell or harm or whatever,tell her what she is allowed to

do, maybe to remove herself, or maybe she needs you to help her calm -

separation anxiety can be a problem. Thing is, they are so overwhelmed and

without any coping skills, they can really regress age-wise, and be very

dependent. Again, with time, as she learns the tools of ERP and how to manage

the OCD this will all improve.

Our son could not sleep, and the OCD was around the clock, could no longer go to

school, or function in any meaningful way,three months non-stop. After ERP was

attempted and was just not possible, we started medication. He could then sleep,

and did not suffer around the clock to the same degree. Took a while for ERP to

be possible, lots of challenges, plus ours was a teen and not on board. But

eventually he took it on and then things got better really quickly. He's ok now,

not doing as well as he has, but at least he knows what he needs to do and how

to do it - that is everything with managing OCD!

In your case, if it IS PANS that needs to be addressed. It is not an easy path,

and access to expert docs a challenge, but many on this board have had good

results. You do want to rule this in or out as a possibility.

It really does feel like you've fallen down the rabbit hole. There is no road

map to follow, but there are many here who have been down this road and can

support you with all this. Keep posting your questions and concerns, and

reaching out to others who understand. The only thing harder than this disorder

is the isolation that can come with trying to cope alone. Know that you are not

alone with this.

Warmly,

Barb

Canada

Son, 20, OCD, LD Plus

>

> Hi. This is my first post here. My daughter is 6 and suddenly developed OCD

May 26th. Behavior problems started 3 days later including defiance, temper

tantrums and cognitive inflexibility. She was an obedient child prior to this

who occasionally had inappropriate behavior when she was overly tired (like most

children). We have met with a therapist once, who basically took her history and

will see her again on Thursday. I am aware of PANDAS and threw a fit to get our

pediatrician to test her. The whole family was swabbed for strep and the

cultures were all negative. My daughter's strep titer was negative, too. As far

as we know she has never had strep. We are waiting on one more lab. I don't

remember the name of it or what it is looking for. The nurse didn't know what is

was for, either.

>

> Her OCD and behavior issues come and go.

>

> Anyway, my husband and I are devastated and lost. Our family is disrupted and

we don't know what to do. Dealing with her is exhausting and last night she

developed insomnia due to her obsessive thoughts, making my husband and me even

more exhausted. She just said to me moments ago, " I don't know why I've gotten

to where I don't obey " out of the blue. I started crying. We are walking on

eggshells around her to not set off behavior issues, but at the same time are

trying to balance a healthy level of discipline. I feel like the stress of this

is going to kill me.

>

> Can anyone offer me any support? Is this going to get better?

>

> Misty

>

[Guest guest]

Thank you, Barb. So much of what you said rings true and really helps me feel

understood. I appreciate all the good tips.

From: bnesrallah

Sent: Tuesday, June 05, 2012 9:45 PM

To:

Subject: Re: New onset in 6 year old

Hi Misty,

You have already had good posts about PANS/PANDAS. Just thought I'd mention

about behaviors. The defiance, temper, inflexibility all go will OCD, maybe not

for all, but common, we dealt with this a lot.

Our son was seemingly overnight, the severe onset was anyway, can name the date

same as you. In the end we could trace back and see that it was always there,

but hidden. The severe onset was a nightmare, overnight your world is turned

upside down, no easy answers to all the stuff that comes up. Know that with time

you will find your way with this though.

So, in terms of behavior stuff, forget about discipline with anything that has

OCD attached to it, at least for now. If OCD is driving a response nothing will

alter it, and it is not about being bad or deliberately trying to be difficult,

they simply cannot do otherwise - they are " compelled " , ie compulsion.

Reassure her that you know she can't help herself from saying or doing things

she wouldn't normally do, and that it is the OCD bully in her head making her.

Help her find a name to call the OCD, and you can both refer to it as the

" problem " when stuff comes up. It's like focusing on the behavior not the child,

make it about the OCD, not her. Let he know that the therapist will help her

tame the OCD bully, that she will learn how to make the thoughts grow smaller,

little by little. The book, What to do when your brain gets stuck, is really

good to explain ERP, and has a workbook part.

You mention she might be hiding some of her thoughts from you. You might try

talking with her about all the possible kind of thoughts she might have going on

in her head, and reassure her that they are " just " thoughts, not real, not true,

and she does not have to listen to them. It can be pretty scary for them, and

they can feel embarrassed or ashamed, so it's important that they know it has

nothing to do with them as a person, just weird thoughts. Also explain that the

more she is afraid of them and believes them the more power they have, just like

a bully.

Talking about the OCD can trigger it for them, so this can also stop them from

wanting to talk about it. However, it helps take the power away from it to not

keep it secret. A book might be the best way to bring things out. Or maybe if

she likes to draw, she could draw the OCD monster. Even a silly song or poem can

help break the " spell " when they are locked into the OCD. I sang to my 20yr old

son the other day, basically identifying his carrying on as OCD(he needs to tell

me stuff as his ritual), made him laugh, and broke the hold the OCD had on the

moment.

The walking on eggshells syndrome is also pretty common, feels like a war zone,

trying to avoid landmines and resulting explosions. In the crisis stages it's

pretty impossible to not have the outbursts, so much sets them off. The more

neutral you can be, impossible I know, the better. Just let things go, let her

blow, know that it is not " real " , in the sense that there is a discipline

problem. Name it as OCD, and wait it out.

Wait until she is calm and discuss plan for next time. Plan might be to use a

certain word to cue you the OCD is triggered, you can then remind her to make a

good choice, ie. not yell or harm or whatever,tell her what she is allowed to

do, maybe to remove herself, or maybe she needs you to help her calm -

separation anxiety can be a problem. Thing is, they are so overwhelmed and

without any coping skills, they can really regress age-wise, and be very

dependent. Again, with time, as she learns the tools of ERP and how to manage

the OCD this will all improve.

Our son could not sleep, and the OCD was around the clock, could no longer go to

school, or function in any meaningful way,three months non-stop. After ERP was

attempted and was just not possible, we started medication. He could then sleep,

and did not suffer around the clock to the same degree. Took a while for ERP to

be possible, lots of challenges, plus ours was a teen and not on board. But

eventually he took it on and then things got better really quickly. He's ok now,

not doing as well as he has, but at least he knows what he needs to do and how

to do it - that is everything with managing OCD!

In your case, if it IS PANS that needs to be addressed. It is not an easy path,

and access to expert docs a challenge, but many on this board have had good

results. You do want to rule this in or out as a possibility.

It really does feel like you've fallen down the rabbit hole. There is no road

map to follow, but there are many here who have been down this road and can

support you with all this. Keep posting your questions and concerns, and

reaching out to others who understand. The only thing harder than this disorder

is the isolation that can come with trying to cope alone. Know that you are not

alone with this.

Warmly,

Barb

Canada

Son, 20, OCD, LD Plus

>

> Hi. This is my first post here. My daughter is 6 and suddenly developed OCD

May 26th. Behavior problems started 3 days later including defiance, temper

tantrums and cognitive inflexibility. She was an obedient child prior to this

who occasionally had inappropriate behavior when she was overly tired (like most

children). We have met with a therapist once, who basically took her history and

will see her again on Thursday. I am aware of PANDAS and threw a fit to get our

pediatrician to test her. The whole family was swabbed for strep and the

cultures were all negative. My daughter's strep titer was negative, too. As far

as we know she has never had strep. We are waiting on one more lab. I don't

remember the name of it or what it is looking for. The nurse didn't know what is

was for, either.

>

> Her OCD and behavior issues come and go.

>

> Anyway, my husband and I are devastated and lost. Our family is disrupted and

we don't know what to do. Dealing with her is exhausting and last night she

developed insomnia due to her obsessive thoughts, making my husband and me even

more exhausted. She just said to me moments ago, " I don't know why I've gotten

to where I don't obey " out of the blue. I started crying. We are walking on

eggshells around her to not set off behavior issues, but at the same time are

trying to balance a healthy level of discipline. I feel like the stress of this

is going to kill me.

>

> Can anyone offer me any support? Is this going to get better?

>

> Misty

>

[Guest guest]

Welcome Misty. I got pretty long-winded there! Tend to start going back in

time remembering when.... Glad if something was helpful. This group was a life

line for me and carried me through some really dark times.

Keep posting!

Warmly,

Barb

>

> Thank you, Barb. So much of what you said rings true and really helps me feel

understood. I appreciate all the good tips.

>

[Guest guest]

Welcome Misty. I got pretty long-winded there! Tend to start going back in

time remembering when.... Glad if something was helpful. This group was a life

line for me and carried me through some really dark times.

Keep posting!

Warmly,

Barb

>

> Thank you, Barb. So much of what you said rings true and really helps me feel

understood. I appreciate all the good tips.

>

[Guest guest]

I really appreciate your post. I think the isolation is one of the hardest

things...no one around us seems to understand how awful this is.

From: bnesrallah

Sent: Thursday, June 07, 2012 8:07 PM

To:

Subject: Re: New onset in 6 year old

Welcome Misty. I got pretty long-winded there! Tend to start going back in time

remembering when.... Glad if something was helpful. This group was a life line

for me and carried me through some really dark times.

Keep posting!

Warmly,

Barb

>

> Thank you, Barb. So much of what you said rings true and really helps me feel

understood. I appreciate all the good tips.

>

[Guest guest]

I really appreciate your post. I think the isolation is one of the hardest

things...no one around us seems to understand how awful this is.

From: bnesrallah

Sent: Thursday, June 07, 2012 8:07 PM

To:

Subject: Re: New onset in 6 year old

Welcome Misty. I got pretty long-winded there! Tend to start going back in time

remembering when.... Glad if something was helpful. This group was a life line

for me and carried me through some really dark times.

Keep posting!

Warmly,

Barb

>

> Thank you, Barb. So much of what you said rings true and really helps me feel

understood. I appreciate all the good tips.

>

[Guest guest]

Not sure if the anger question was directed at me or Tara, but I’ll answer. :

) Our daughter is being really aggressive, not really angry. She has

scratched her dad several times and threw shoes at me four times yesterday- all

while I was driving her to and from therapy. She has thrown things and dumped

out containers of toys. She’s very threatening that if we don’t comply with

her OCD related demands she’ll do __________. The behavior stuff is really

the most troubling for our family. She was compliant and sweet before this. I

agree about the young age complicating things. I think she doesn’t know how

to voice her feelings or cope.

From: krispesola@...

Sent: Wednesday, June 06, 2012 3:00 AM

To:

Subject: Re: Re: New onset in 6 year old

Hi- great advice Tara. I too have a young child with OCD and live in Chicago!!

It's very difficult treating this so young. My daughter is working through the

same book with her therapist. Are u seeing any bouts of anger? We r struggling

more with the anger at this point. Not sure if that's because of her young age?

Sent from my iPhone

On Jun 5, 2012, at 9:15 PM, Tara Montgomery <mailto:montgomerytara%40yahoo.com>

wrote:

> Just a few thoughts about survival until things settle down a bit.

>

> Our son who is 8 had onset of OCD at age 6. Although we can look back and see

behaviors that were ritualistic before that, the disruptive compulsive, fear

based stuff seemed to come on overnight. I do remember our house falling into

total chaos for a few hours each evening. At some point my husband and I looked

at each other and one of us asked, " Do you think this is OCD " We starting

googling OCD in kids and we were on our way.

>

> Helpful finds:

> The ocd foundation website has a list of practitioners. I called and talked to

a dozen on the phone, asking about treatment and recommended therapy and rates.

This took a lot of time but was really helpful. I learned we should be looking

for someone who does exposure-response treatment with children. Then I went

through our insurance until I found someone in network with the right

experience. It was worth doing this, since it have saved us thousands of dollars

staying in network. He is a social worker, and he is just the right person for

our family. You can treat OCD yourself, but it is exhausting and it is

worthwhile to have someone coaching you through it.

>

> There is a book written for children by Dawn Huber - What to do when your

Brain gets stuck. Our library has it, and amazon sells it. We read it aloud to

our son one chapter at a time. It really teaches you how to fight OCD, and since

most therapy happens at home the parents need to be part of the response. It is

a cute book. Best resource ever, and we re-read it again this year.

>

> Tamar Chansky wrote a book about OCD for parents and that was a good read for

me since I was not familiar with this disorder.

>

> My two cents on supporting a young child with OCD: look for someone who is

comfortable with therapy and not someone who wants to jump straight into

medication. We felt completely out of control and things came back in control

very quickly with therapy alone. Meds may be necessary, but maybe not. We were

glad we gave therapy a shot first.

>

> Keep the group posted on how it is going. Hang in there Momma.

>

> Tara (Chicago)

>

>

[Guest guest]

As someone with OCD and with two kids with OCD, I totally get your child feeling

she needs to get you to comply with her rituals, but it is really important that

you have consequences for aggressive behavior. Scratching, throwing shoes,

etc., should not be accepted. What can help minimize it is that her therapist

should work with her to set up a hierarchy of her fears and they should slowly

agree to work through this. While she is doing this, you will be working with

the therapist as to what is rituals are okay to still go along with and which

are no longer going to be followed. If your child isn't able to do this because

the fears are so strong, as has always been true for me and my kids, medication

can be an amazing help. I watched my daughter go from having really bizarre OCD

thoughts and behaving in a way that caused her to be ostracized by her peers, to

no longer thinking that way once she was on the right dose of OCD med. I have

been both on and off medication, and I can tell you that I feel like two

different people when I am on vs. when I am off. The same has always been true

for my children. If your daughter's aggressiveness is due to her being so

believing in her fears and need for her rituals, medication may be the key for

her to be able to succeed with the therapy.

Re: Re: New onset in 6 year old

Hi- great advice Tara. I too have a young child with OCD and live in Chicago!!

It's very difficult treating this so young. My daughter is working through the

same book with her therapist. Are u seeing any bouts of anger? We r struggling

more with the anger at this point. Not sure if that's because of her young age?

Sent from my iPhone

On Jun 5, 2012, at 9:15 PM, Tara Montgomery <mailto:montgomerytara%40yahoo.com>;

wrote:

> Just a few thoughts about survival until things settle down a bit.

>

> Our son who is 8 had onset of OCD at age 6. Although we can look back and see

behaviors that were ritualistic before that, the disruptive compulsive, fear

based stuff seemed to come on overnight. I do remember our house falling into

total chaos for a few hours each evening. At some point my husband and I looked

at each other and one of us asked, " Do you think this is OCD " We starting

googling OCD in kids and we were on our way.

>

> Helpful finds:

> The ocd foundation website has a list of practitioners. I called and talked to

a dozen on the phone, asking about treatment and recommended therapy and rates.

This took a lot of time but was really helpful. I learned we should be looking

for someone who does exposure-response treatment with children. Then I went

through our insurance until I found someone in network with the right

experience. It was worth doing this, since it have saved us thousands of dollars

staying in network. He is a social worker, and he is just the right person for

our family. You can treat OCD yourself, but it is exhausting and it is

worthwhile to have someone coaching you through it.

>

> There is a book written for children by Dawn Huber - What to do when your

Brain gets stuck. Our library has it, and amazon sells it. We read it aloud to

our son one chapter at a time. It really teaches you how to fight OCD, and since

most therapy happens at home the parents need to be part of the response. It is

a cute book. Best resource ever, and we re-read it again this year.

>

> Tamar Chansky wrote a book about OCD for parents and that was a good read for

me since I was not familiar with this disorder.

>

> My two cents on supporting a young child with OCD: look for someone who is

comfortable with therapy and not someone who wants to jump straight into

medication. We felt completely out of control and things came back in control

very quickly with therapy alone. Meds may be necessary, but maybe not. We were

glad we gave therapy a shot first.

>

> Keep the group posted on how it is going. Hang in there Momma.

>

> Tara (Chicago)

>

>

[Guest guest]

We understand!! When my son was homebound, living in horrific conditions, I

would go out to a social group and feel like I was living on two planets. I did

not tell my extended family anything, even when son was in hospital for 2 weeks.

The worst part was that the hospital staff turned us in to Children's Services

twice for medical neglect, during the period they were treating our son. That's

difficult to take, when medical professionals tell you that somehow you should

have beat OCD, the biggest abuser there is.

Hang in there, I can tell you, IT WILL GET BETTER!!

Rhonda

Re: New onset in 6 year old

Welcome Misty. I got pretty long-winded there! Tend to start going back in

time remembering when.... Glad if something was helpful. This group was a life

line for me and carried me through some really dark times.

Keep posting!

Warmly,

Barb

>

> Thank you, Barb. So much of what you said rings true and really helps me

feel understood. I appreciate all the good tips.

>

[Guest guest]

That is unbelievable that you would be reported for medical neglect when in

the hospital seeking treatment!! That is scary. I know you feel like you would

do anything to make this better, but it’s like being in the wilderness for us

right now...we don’t know what to do and we’re just searching wildly for

answers but we feel helpless to make this better.

From: beachy

Sent: Friday, June 08, 2012 8:26 PM

To:

Subject: Re: Re: New onset in 6 year old

We understand!! When my son was homebound, living in horrific conditions, I

would go out to a social group and feel like I was living on two planets. I did

not tell my extended family anything, even when son was in hospital for 2 weeks.

The worst part was that the hospital staff turned us in to Children's Services

twice for medical neglect, during the period they were treating our son. That's

difficult to take, when medical professionals tell you that somehow you should

have beat OCD, the biggest abuser there is.

Hang in there, I can tell you, IT WILL GET BETTER!!

Rhonda

Re: New onset in 6 year old

Welcome Misty. I got pretty long-winded there! Tend to start going back in time

remembering when.... Glad if something was helpful. This group was a life line

for me and carried me through some really dark times.

Keep posting!

Warmly,

Barb

>

> Thank you, Barb. So much of what you said rings true and really helps me feel

understood. I appreciate all the good tips.

>

[Guest guest]

I am open to meds down the road, but we are only 2-3 weeks in right now. We

aren’t allowing any behavior that harms others (and we’ve always had a zero

tolerance policy to that) – we have 3 year old twins, too, and their safety

will be maintained. It’s just like she becomes a wild animal at times and she

doesn’t care what the consequence is. She is just out of control and I

don’t really think it’s necessarily OCD related. Sometimes us not complying

sets her off but that doesn’t seem to be what’s continuing to drive it once

she’s in that state, if that makes sense. If this is PANDAS/PANS related, my

understanding is that SSRIs may not help and may have more severe side effects

in these kids. I’m pretty green at all this, so I could be wrong. Her

therapist doesn’t want to consider meds right now. We just started an

antibiotic in case this is autoimmune related and have to wait it out to see if

it helps before we do anything else that could skew the results.

From: Jordana120@...

Sent: Friday, June 08, 2012 4:11 PM

To:

Subject: Re: Re: New onset in 6 year old

As someone with OCD and with two kids with OCD, I totally get your child feeling

she needs to get you to comply with her rituals, but it is really important that

you have consequences for aggressive behavior. Scratching, throwing shoes, etc.,

should not be accepted. What can help minimize it is that her therapist should

work with her to set up a hierarchy of her fears and they should slowly agree to

work through this. While she is doing this, you will be working with the

therapist as to what is rituals are okay to still go along with and which are no

longer going to be followed. If your child isn't able to do this because the

fears are so strong, as has always been true for me and my kids, medication can

be an amazing help. I watched my daughter go from having really bizarre OCD

thoughts and behaving in a way that caused her to be ostracized by her peers, to

no longer thinking that way once she was on the right dose of OCD med. I have

been both on and off medication, and I can tell you that I feel like two

different people when I am on vs. when I am off. The same has always been true

for my children. If your daughter's aggressiveness is due to her being so

believing in her fears and need for her rituals, medication may be the key for

her to be able to succeed with the therapy.

Re: Re: New onset in 6 year old

Hi- great advice Tara. I too have a young child with OCD and live in Chicago!!

It's very difficult treating this so young. My daughter is working through the

same book with her therapist. Are u seeing any bouts of anger? We r struggling

more with the anger at this point. Not sure if that's because of her young age?

Sent from my iPhone

On Jun 5, 2012, at 9:15 PM, Tara Montgomery <mailto:montgomerytara%40yahoo.com>;

wrote:

> Just a few thoughts about survival until things settle down a bit.

>

> Our son who is 8 had onset of OCD at age 6. Although we can look back and see

behaviors that were ritualistic before that, the disruptive compulsive, fear

based stuff seemed to come on overnight. I do remember our house falling into

total chaos for a few hours each evening. At some point my husband and I looked

at each other and one of us asked, " Do you think this is OCD " We starting

googling OCD in kids and we were on our way.

>

> Helpful finds:

> The ocd foundation website has a list of practitioners. I called and talked to

a dozen on the phone, asking about treatment and recommended therapy and rates.

This took a lot of time but was really helpful. I learned we should be looking

for someone who does exposure-response treatment with children. Then I went

through our insurance until I found someone in network with the right

experience. It was worth doing this, since it have saved us thousands of dollars

staying in network. He is a social worker, and he is just the right person for

our family. You can treat OCD yourself, but it is exhausting and it is

worthwhile to have someone coaching you through it.

>

> There is a book written for children by Dawn Huber - What to do when your

Brain gets stuck. Our library has it, and amazon sells it. We read it aloud to

our son one chapter at a time. It really teaches you how to fight OCD, and since

most therapy happens at home the parents need to be part of the response. It is

a cute book. Best resource ever, and we re-read it again this year.

>

> Tamar Chansky wrote a book about OCD for parents and that was a good read for

me since I was not familiar with this disorder.

>

> My two cents on supporting a young child with OCD: look for someone who is

comfortable with therapy and not someone who wants to jump straight into

medication. We felt completely out of control and things came back in control

very quickly with therapy alone. Meds may be necessary, but maybe not. We were

glad we gave therapy a shot first.

>

> Keep the group posted on how it is going. Hang in there Momma.

>

> Tara (Chicago)

>

>

[Guest guest]

It was absurd but some things you just have to walk through, right?

Keep looking, keep asking, you will realize at some point that you can take

power back from the OCD. It's hard, but keep going.

Rhonda

Re: Re: New onset in 6 year old

That is unbelievable that you would be reported for medical neglect when in

the hospital seeking treatment!! That is scary. I know you feel like you would

do anything to make this better, but it’s like being in the wilderness for us

right now...we don’t know what to do and we’re just searching wildly for

answers but we feel helpless to make this better.

From: beachy

[Guest guest]

It is very hard. I told my mom that it seems like some kind of terrible medical

thing would be easier than this. With this, no one understands how awful it is

or seems to care what you’re going through. If it was strictly medical,

people would be jumping through hoops to fix it. I called one immunologist this

morning who has never heard of PANDAS and I’m waiting to hear back from

another. It’s exhausting just trying to find someone to run tests.

Misty

From: beachy

Sent: Sunday, June 10, 2012 9:19 PM

To:

Subject: Re: Re: New onset in 6 year old

It was absurd but some things you just have to walk through, right?

Keep looking, keep asking, you will realize at some point that you can take

power back from the OCD. It's hard, but keep going.

Rhonda

Re: Re: New onset in 6 year old

That is unbelievable that you would be reported for medical neglect when in the

hospital seeking treatment!! That is scary. I know you feel like you would do

anything to make this better, but it’s like being in the wilderness for us

right now...we don’t know what to do and we’re just searching wildly for

answers but we feel helpless to make this better.

From: beachy

[Guest guest]

You have my total empathy Misty! It is very hard, and, as you say, no one seems

to get how hard. I remember feeling like I could seriously harm some of the

doctors we had. They had no idea what we were living and would say the most

useless, or unhelpful things.

Like suggest we get some parenting help, since we couldn't cope with the

outbursts, which had the medication they prescribed to treat the OCD at the root

of the problem. When it got worse, they suggested signing our kid over to

children's aid, and later when he was older a homeless shelter! Yes, this is

the kind of help we got But I'm not bitter..... Sorry, that got to be

about me, back to you....

Possibly the one good thing you could consider, is that you know about PANDAS

and can advocate/fight/search for treatment. Imagine if you didn't know about

it. ERP is the same. I get people contacting me weekly for help with OCD, and

they have never heard of ERP, and may even have been in treatment for OCD. So,

knowledge is everything.

Would be nice if the treatment was just waiting for us though. Knowing what

needs to be done, but not be able to secure the treatment is negligent if not

criminal. As far as I'm concerned it is a human rights issue, others have said

the same. As you can guess I've made noise about this whenever I can. " Change

is Gonna Come " , is the song I hear in my head, and slowly I am seeing things

shift. We all have to make noise about what is not there for our kids, so that

it will change for those who come after us.

Ok, I'll stop my rant. Hang in there Misty! Know that all of us here get it.

Sending you a BIG HUG!!!

Barb

>

> It is very hard. I told my mom that it seems like some kind of terrible

medical thing would be easier than this. With this, no one understands how

awful it is or seems to care what you’re going through. If it was strictly

medical, people would be jumping through hoops to fix it. I called one

immunologist this morning who has never heard of PANDAS and I’m waiting to

hear back from another. It’s exhausting just trying to find someone to run

tests.

>

> Misty

>

>

[Guest guest]

Thank you, Barb. I am so sorry you’ve gotten that kind of “adviceâ€. This

is a hard, hard thing to go through. You are right about looking on the bright

side that at least I know about PANDAS – and in the first week it happened

instead of months in. She is so, so severe now. She is having palpitations

tonight. That is heartbreaking in a 6 year old who keeps asking if it’s

normal and if she’s going to be okay. I met with a different pediatrician

yesterday who is pursuing information from the immunology dept of our closest

Children’s Hospital. He is very kind and compassionate. I feel like we have

some hope now that he will help us with this.

Misty

From: bnesrallah

Sent: Monday, June 11, 2012 7:00 PM

To:

Subject: Re: New onset in 6 year old

You have my total empathy Misty! It is very hard, and, as you say, no one seems

to get how hard. I remember feeling like I could seriously harm some of the

doctors we had. They had no idea what we were living and would say the most

useless, or unhelpful things.

Like suggest we get some parenting help, since we couldn't cope with the

outbursts, which had the medication they prescribed to treat the OCD at the root

of the problem. When it got worse, they suggested signing our kid over to

children's aid, and later when he was older a homeless shelter! Yes, this is the

kind of help we got But I'm not bitter..... Sorry, that got to be about me,

back to you....

Possibly the one good thing you could consider, is that you know about PANDAS

and can advocate/fight/search for treatment. Imagine if you didn't know about

it. ERP is the same. I get people contacting me weekly for help with OCD, and

they have never heard of ERP, and may even have been in treatment for OCD. So,

knowledge is everything.

Would be nice if the treatment was just waiting for us though. Knowing what

needs to be done, but not be able to secure the treatment is negligent if not

criminal. As far as I'm concerned it is a human rights issue, others have said

the same. As you can guess I've made noise about this whenever I can. " Change is

Gonna Come " , is the song I hear in my head, and slowly I am seeing things shift.

We all have to make noise about what is not there for our kids, so that it will

change for those who come after us.

Ok, I'll stop my rant. Hang in there Misty! Know that all of us here get it.

Sending you a BIG HUG!!!

Barb

>

> It is very hard. I told my mom that it seems like some kind of terrible

medical thing would be easier than this. With this, no one understands how awful

it is or seems to care what you’re going through. If it was strictly

medical, people would be jumping through hoops to fix it. I called one

immunologist this morning who has never heard of PANDAS and I’m waiting to

hear back from another. It’s exhausting just trying to find someone to run

tests.

>

> Misty

>

>

[Guest guest]

Thank you, Barb. I am so sorry you’ve gotten that kind of “adviceâ€. This

is a hard, hard thing to go through. You are right about looking on the bright

side that at least I know about PANDAS – and in the first week it happened

instead of months in. She is so, so severe now. She is having palpitations

tonight. That is heartbreaking in a 6 year old who keeps asking if it’s

normal and if she’s going to be okay. I met with a different pediatrician

yesterday who is pursuing information from the immunology dept of our closest

Children’s Hospital. He is very kind and compassionate. I feel like we have

some hope now that he will help us with this.

Misty

From: bnesrallah

Sent: Monday, June 11, 2012 7:00 PM

To:

Subject: Re: New onset in 6 year old

You have my total empathy Misty! It is very hard, and, as you say, no one seems

to get how hard. I remember feeling like I could seriously harm some of the

doctors we had. They had no idea what we were living and would say the most

useless, or unhelpful things.

Like suggest we get some parenting help, since we couldn't cope with the

outbursts, which had the medication they prescribed to treat the OCD at the root

of the problem. When it got worse, they suggested signing our kid over to

children's aid, and later when he was older a homeless shelter! Yes, this is the

kind of help we got But I'm not bitter..... Sorry, that got to be about me,

back to you....

Possibly the one good thing you could consider, is that you know about PANDAS

and can advocate/fight/search for treatment. Imagine if you didn't know about

it. ERP is the same. I get people contacting me weekly for help with OCD, and

they have never heard of ERP, and may even have been in treatment for OCD. So,

knowledge is everything.

Would be nice if the treatment was just waiting for us though. Knowing what

needs to be done, but not be able to secure the treatment is negligent if not

criminal. As far as I'm concerned it is a human rights issue, others have said

the same. As you can guess I've made noise about this whenever I can. " Change is

Gonna Come " , is the song I hear in my head, and slowly I am seeing things shift.

We all have to make noise about what is not there for our kids, so that it will

change for those who come after us.

Ok, I'll stop my rant. Hang in there Misty! Know that all of us here get it.

Sending you a BIG HUG!!!

Barb

>

> It is very hard. I told my mom that it seems like some kind of terrible

medical thing would be easier than this. With this, no one understands how awful

it is or seems to care what you’re going through. If it was strictly

medical, people would be jumping through hoops to fix it. I called one

immunologist this morning who has never heard of PANDAS and I’m waiting to

hear back from another. It’s exhausting just trying to find someone to run

tests.

>

> Misty

>

>

[Guest guest]

Thank you, Barb. I am so sorry you’ve gotten that kind of “adviceâ€. This

is a hard, hard thing to go through. You are right about looking on the bright

side that at least I know about PANDAS – and in the first week it happened

instead of months in. She is so, so severe now. She is having palpitations

tonight. That is heartbreaking in a 6 year old who keeps asking if it’s

normal and if she’s going to be okay. I met with a different pediatrician

yesterday who is pursuing information from the immunology dept of our closest

Children’s Hospital. He is very kind and compassionate. I feel like we have

some hope now that he will help us with this.

Misty

From: bnesrallah

Sent: Monday, June 11, 2012 7:00 PM

To:

Subject: Re: New onset in 6 year old

You have my total empathy Misty! It is very hard, and, as you say, no one seems

to get how hard. I remember feeling like I could seriously harm some of the

doctors we had. They had no idea what we were living and would say the most

useless, or unhelpful things.

Like suggest we get some parenting help, since we couldn't cope with the

outbursts, which had the medication they prescribed to treat the OCD at the root

of the problem. When it got worse, they suggested signing our kid over to

children's aid, and later when he was older a homeless shelter! Yes, this is the

kind of help we got But I'm not bitter..... Sorry, that got to be about me,

back to you....

Possibly the one good thing you could consider, is that you know about PANDAS

and can advocate/fight/search for treatment. Imagine if you didn't know about

it. ERP is the same. I get people contacting me weekly for help with OCD, and

they have never heard of ERP, and may even have been in treatment for OCD. So,

knowledge is everything.

Would be nice if the treatment was just waiting for us though. Knowing what

needs to be done, but not be able to secure the treatment is negligent if not

criminal. As far as I'm concerned it is a human rights issue, others have said

the same. As you can guess I've made noise about this whenever I can. " Change is

Gonna Come " , is the song I hear in my head, and slowly I am seeing things shift.

We all have to make noise about what is not there for our kids, so that it will

change for those who come after us.

Ok, I'll stop my rant. Hang in there Misty! Know that all of us here get it.

Sending you a BIG HUG!!!

Barb

>

> It is very hard. I told my mom that it seems like some kind of terrible

medical thing would be easier than this. With this, no one understands how awful

it is or seems to care what you’re going through. If it was strictly

medical, people would be jumping through hoops to fix it. I called one

immunologist this morning who has never heard of PANDAS and I’m waiting to

hear back from another. It’s exhausting just trying to find someone to run

tests.

>

> Misty

>

>