Re: New onset in 6 year old

[Guest guest]

Misty I am going through the same thing with

My six year old son. They may be checking for mycroplasma.

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

wrote:

> 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]

Did something happen in her life that maybe you don't yet know about? I am not

an expert, but if you can point to the exact day ... I mean, I noticed symptoms

develop over time. At first was able to pass it off as ... this or that, but it

was months before I saw a clear pattern.

If you can say, if I am understanding your post, that on the 25th she was a

typically developing child, on the 26th had OCD behaviors ....then maybe there

is a cause you can find?

-JuLeah

________________________________

To: " " < >

Sent: Monday, June 4, 2012 9:38 AM

Subject: Re: New onset in 6 year old

 

Misty I am going through the same thing with

My six year old son. They may be checking for mycroplasma.

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

wrote:

> 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]

Did something happen in her life that maybe you don't yet know about? I am not

an expert, but if you can point to the exact day ... I mean, I noticed symptoms

develop over time. At first was able to pass it off as ... this or that, but it

was months before I saw a clear pattern.

If you can say, if I am understanding your post, that on the 25th she was a

typically developing child, on the 26th had OCD behaviors ....then maybe there

is a cause you can find?

-JuLeah

________________________________

To: " " < >

Sent: Monday, June 4, 2012 9:38 AM

Subject: Re: New onset in 6 year old

 

Misty I am going through the same thing with

My six year old son. They may be checking for mycroplasma.

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

wrote:

> 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]

A couple things to try while u wait r ibuprofren.

It seems to work on bringing some inflammation

Down in the brain. Crazy but I've been doing it.

Also we give my son melatonin and clonidine

At night to help him get to sleep. Cbt therapy helps when

Symptoms calm down a bit. I would still try and

Get an antibiotic to see if it works. One that

Works for a wider range of infections maybe, as strep

Is not the only cause (PANS). We r waiting on

A boat load of tests that my son had done last week

When he had his tonsils out. I will let u know

What we find. You can email me if u like.

Debbie

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

wrote:

> 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]

Debbie – I wondered about trying ibuprofen. I’m waiting on a call from the

pediatrician for advice on the sleep issue. We’ll see what they say...I may

try melatonin. I’m not familiar with clonidine.

From: Debbie

Sent: Monday, June 04, 2012 11:47 AM

To:

Subject: Re: New onset in 6 year old

A couple things to try while u wait r ibuprofren.

It seems to work on bringing some inflammation

Down in the brain. Crazy but I've been doing it.

Also we give my son melatonin and clonidine

At night to help him get to sleep. Cbt therapy helps when

Symptoms calm down a bit. I would still try and

Get an antibiotic to see if it works. One that

Works for a wider range of infections maybe, as strep

Is not the only cause (PANS). We r waiting on

A boat load of tests that my son had done last week

When he had his tonsils out. I will let u know

What we find. You can email me if u like.

Debbie

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

> 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]

Debbie – I wondered about trying ibuprofen. I’m waiting on a call from the

pediatrician for advice on the sleep issue. We’ll see what they say...I may

try melatonin. I’m not familiar with clonidine.

From: Debbie

Sent: Monday, June 04, 2012 11:47 AM

To:

Subject: Re: New onset in 6 year old

A couple things to try while u wait r ibuprofren.

It seems to work on bringing some inflammation

Down in the brain. Crazy but I've been doing it.

Also we give my son melatonin and clonidine

At night to help him get to sleep. Cbt therapy helps when

Symptoms calm down a bit. I would still try and

Get an antibiotic to see if it works. One that

Works for a wider range of infections maybe, as strep

Is not the only cause (PANS). We r waiting on

A boat load of tests that my son had done last week

When he had his tonsils out. I will let u know

What we find. You can email me if u like.

Debbie

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

> 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]

JuLeah - There’s not anything that we know of that has happened. I’m a stay

at home mom and we homeschool, so she is very rarely away from us at all. The

sudden onset is a hallmark of PANDAS and PANS, so we feel strongly that this is

possibly an autoimmune problem. It may not be, but it is very suspicious to

happen so suddenly.

From: JuLeah Willson

Sent: Monday, June 04, 2012 11:45 AM

To:

Subject: Re: New onset in 6 year old

Did something happen in her life that maybe you don't yet know about? I am not

an expert, but if you can point to the exact day ... I mean, I noticed symptoms

develop over time. At first was able to pass it off as ... this or that, but it

was months before I saw a clear pattern.

If you can say, if I am understanding your post, that on the 25th she was a

typically developing child, on the 26th had OCD behaviors ....then maybe there

is a cause you can find?

-JuLeah

________________________________

From: Debbie <mailto:theekizians%40gmail.com>

To: " mailto:%40yahoogroups.com "

<mailto:%40yahoogroups.com>

Sent: Monday, June 4, 2012 9:38 AM

Subject: Re: New onset in 6 year old

Misty I am going through the same thing with

My six year old son. They may be checking for mycroplasma.

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

> 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]

JuLeah - There’s not anything that we know of that has happened. I’m a stay

at home mom and we homeschool, so she is very rarely away from us at all. The

sudden onset is a hallmark of PANDAS and PANS, so we feel strongly that this is

possibly an autoimmune problem. It may not be, but it is very suspicious to

happen so suddenly.

From: JuLeah Willson

Sent: Monday, June 04, 2012 11:45 AM

To:

Subject: Re: New onset in 6 year old

Did something happen in her life that maybe you don't yet know about? I am not

an expert, but if you can point to the exact day ... I mean, I noticed symptoms

develop over time. At first was able to pass it off as ... this or that, but it

was months before I saw a clear pattern.

If you can say, if I am understanding your post, that on the 25th she was a

typically developing child, on the 26th had OCD behaviors ....then maybe there

is a cause you can find?

-JuLeah

________________________________

From: Debbie <mailto:theekizians%40gmail.com>

To: " mailto:%40yahoogroups.com "

<mailto:%40yahoogroups.com>

Sent: Monday, June 4, 2012 9:38 AM

Subject: Re: New onset in 6 year old

Misty I am going through the same thing with

My six year old son. They may be checking for mycroplasma.

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

> 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]

You know her best of course, just tossing out ideas to consider. Regardless of

how, it is in front of you now and I wish you all the best. I've experienced a

lot of heat ache and heart break watching my baby walk through this.

She keeps asking me 'why' and I have no answer.

Good luck

-JuLeah

________________________________

To:

Sent: Monday, June 4, 2012 10:01 AM

Subject: Re: New onset in 6 year old

 

JuLeah - There’s not anything that we know of that has happened. I’m a stay

at home mom and we homeschool, so she is very rarely away from us at all. The

sudden onset is a hallmark of PANDAS and PANS, so we feel strongly that this is

possibly an autoimmune problem. It may not be, but it is very suspicious to

happen so suddenly.

From: JuLeah Willson

Sent: Monday, June 04, 2012 11:45 AM

To:

Subject: Re: New onset in 6 year old

Did something happen in her life that maybe you don't yet know about? I am not

an expert, but if you can point to the exact day ... I mean, I noticed symptoms

develop over time. At first was able to pass it off as ... this or that, but it

was months before I saw a clear pattern.

If you can say, if I am understanding your post, that on the 25th she was a

typically developing child, on the 26th had OCD behaviors ....then maybe there

is a cause you can find?

-JuLeah

________________________________

From: Debbie <mailto:theekizians%40gmail.com>

To: " mailto:%40yahoogroups.com "

<mailto:%40yahoogroups.com>

Sent: Monday, June 4, 2012 9:38 AM

Subject: Re: New onset in 6 year old

Misty I am going through the same thing with

My six year old son. They may be checking for mycroplasma.

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

> 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]

You know her best of course, just tossing out ideas to consider. Regardless of

how, it is in front of you now and I wish you all the best. I've experienced a

lot of heat ache and heart break watching my baby walk through this.

She keeps asking me 'why' and I have no answer.

Good luck

-JuLeah

________________________________

To:

Sent: Monday, June 4, 2012 10:01 AM

Subject: Re: New onset in 6 year old

 

JuLeah - There’s not anything that we know of that has happened. I’m a stay

at home mom and we homeschool, so she is very rarely away from us at all. The

sudden onset is a hallmark of PANDAS and PANS, so we feel strongly that this is

possibly an autoimmune problem. It may not be, but it is very suspicious to

happen so suddenly.

From: JuLeah Willson

Sent: Monday, June 04, 2012 11:45 AM

To:

Subject: Re: New onset in 6 year old

Did something happen in her life that maybe you don't yet know about? I am not

an expert, but if you can point to the exact day ... I mean, I noticed symptoms

develop over time. At first was able to pass it off as ... this or that, but it

was months before I saw a clear pattern.

If you can say, if I am understanding your post, that on the 25th she was a

typically developing child, on the 26th had OCD behaviors ....then maybe there

is a cause you can find?

-JuLeah

________________________________

From: Debbie <mailto:theekizians%40gmail.com>

To: " mailto:%40yahoogroups.com "

<mailto:%40yahoogroups.com>

Sent: Monday, June 4, 2012 9:38 AM

Subject: Re: New onset in 6 year old

Misty I am going through the same thing with

My six year old son. They may be checking for mycroplasma.

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

> 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]

Clonidine is a prescription that works at calming

Him down but I noticed it doesn't work as well

Without the melatonin.

Sent from my iPhone

> Debbie – I wondered about trying ibuprofen. I’m waiting on a call from the

pediatrician for advice on the sleep issue. We’ll see what they say...I may

try melatonin. I’m not familiar with clonidine.

>

> From: Debbie

> Sent: Monday, June 04, 2012 11:47 AM

> To:

> Subject: Re: New onset in 6 year old

>

> A couple things to try while u wait r ibuprofren.

> It seems to work on bringing some inflammation

> Down in the brain. Crazy but I've been doing it.

> Also we give my son melatonin and clonidine

> At night to help him get to sleep. Cbt therapy helps when

> Symptoms calm down a bit. I would still try and

> Get an antibiotic to see if it works. One that

> Works for a wider range of infections maybe, as strep

> Is not the only cause (PANS). We r waiting on

> A boat load of tests that my son had done last week

> When he had his tonsils out. I will let u know

> What we find. You can email me if u like.

> Debbie

>

> Sent from my iPhone

>

> On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

>

> > 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]

Clonidine is a prescription that works at calming

Him down but I noticed it doesn't work as well

Without the melatonin.

Sent from my iPhone

> Debbie – I wondered about trying ibuprofen. I’m waiting on a call from the

pediatrician for advice on the sleep issue. We’ll see what they say...I may

try melatonin. I’m not familiar with clonidine.

>

> From: Debbie

> Sent: Monday, June 04, 2012 11:47 AM

> To:

> Subject: Re: New onset in 6 year old

>

> A couple things to try while u wait r ibuprofren.

> It seems to work on bringing some inflammation

> Down in the brain. Crazy but I've been doing it.

> Also we give my son melatonin and clonidine

> At night to help him get to sleep. Cbt therapy helps when

> Symptoms calm down a bit. I would still try and

> Get an antibiotic to see if it works. One that

> Works for a wider range of infections maybe, as strep

> Is not the only cause (PANS). We r waiting on

> A boat load of tests that my son had done last week

> When he had his tonsils out. I will let u know

> What we find. You can email me if u like.

> Debbie

>

> Sent from my iPhone

>

> On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

>

> > 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. It is just so upsetting to have our world turned upside down so

suddenly with no answers.

From: JuLeah Willson

Sent: Monday, June 04, 2012 12:12 PM

To:

Subject: Re: New onset in 6 year old

You know her best of course, just tossing out ideas to consider. Regardless of

how, it is in front of you now and I wish you all the best. I've experienced a

lot of heat ache and heart break watching my baby walk through this.

She keeps asking me 'why' and I have no answer.

Good luck

-JuLeah

________________________________

From: " mailto:mistymyres%40centurytel.net " <mailto:mistymyres%40centurytel.net>

To: mailto:%40yahoogroups.com

Sent: Monday, June 4, 2012 10:01 AM

Subject: Re: New onset in 6 year old

JuLeah - There’s not anything that we know of that has happened. I’m a stay

at home mom and we homeschool, so she is very rarely away from us at all. The

sudden onset is a hallmark of PANDAS and PANS, so we feel strongly that this is

possibly an autoimmune problem. It may not be, but it is very suspicious to

happen so suddenly.

From: JuLeah Willson

Sent: Monday, June 04, 2012 11:45 AM

To: mailto:%40yahoogroups.com

Subject: Re: New onset in 6 year old

Did something happen in her life that maybe you don't yet know about? I am not

an expert, but if you can point to the exact day ... I mean, I noticed symptoms

develop over time. At first was able to pass it off as ... this or that, but it

was months before I saw a clear pattern.

If you can say, if I am understanding your post, that on the 25th she was a

typically developing child, on the 26th had OCD behaviors ....then maybe there

is a cause you can find?

-JuLeah

________________________________

From: Debbie <mailto:theekizians%40gmail.com>

To: " mailto:%40yahoogroups.com "

<mailto:%40yahoogroups.com>

Sent: Monday, June 4, 2012 9:38 AM

Subject: Re: New onset in 6 year old

Misty I am going through the same thing with

My six year old son. They may be checking for mycroplasma.

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

> 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. It is just so upsetting to have our world turned upside down so

suddenly with no answers.

From: JuLeah Willson

Sent: Monday, June 04, 2012 12:12 PM

To:

Subject: Re: New onset in 6 year old

You know her best of course, just tossing out ideas to consider. Regardless of

how, it is in front of you now and I wish you all the best. I've experienced a

lot of heat ache and heart break watching my baby walk through this.

She keeps asking me 'why' and I have no answer.

Good luck

-JuLeah

________________________________

From: " mailto:mistymyres%40centurytel.net " <mailto:mistymyres%40centurytel.net>

To: mailto:%40yahoogroups.com

Sent: Monday, June 4, 2012 10:01 AM

Subject: Re: New onset in 6 year old

JuLeah - There’s not anything that we know of that has happened. I’m a stay

at home mom and we homeschool, so she is very rarely away from us at all. The

sudden onset is a hallmark of PANDAS and PANS, so we feel strongly that this is

possibly an autoimmune problem. It may not be, but it is very suspicious to

happen so suddenly.

From: JuLeah Willson

Sent: Monday, June 04, 2012 11:45 AM

To: mailto:%40yahoogroups.com

Subject: Re: New onset in 6 year old

Did something happen in her life that maybe you don't yet know about? I am not

an expert, but if you can point to the exact day ... I mean, I noticed symptoms

develop over time. At first was able to pass it off as ... this or that, but it

was months before I saw a clear pattern.

If you can say, if I am understanding your post, that on the 25th she was a

typically developing child, on the 26th had OCD behaviors ....then maybe there

is a cause you can find?

-JuLeah

________________________________

From: Debbie <mailto:theekizians%40gmail.com>

To: " mailto:%40yahoogroups.com "

<mailto:%40yahoogroups.com>

Sent: Monday, June 4, 2012 9:38 AM

Subject: Re: New onset in 6 year old

Misty I am going through the same thing with

My six year old son. They may be checking for mycroplasma.

Sent from my iPhone

On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

> 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]

oh, Okay. My mind is just reeling from all this. I’m going to email you.

From: Debbie

Sent: Monday, June 04, 2012 12:17 PM

To:

Subject: Re: New onset in 6 year old

Clonidine is a prescription that works at calming

Him down but I noticed it doesn't work as well

Without the melatonin.

Sent from my iPhone

On Jun 4, 2012, at 12:58 PM, mailto:mistymyres%40centurytel.net wrote:

> Debbie – I wondered about trying ibuprofen. I’m waiting on a call from the

pediatrician for advice on the sleep issue. We’ll see what they say...I may

try melatonin. I’m not familiar with clonidine.

>

> From: Debbie

> Sent: Monday, June 04, 2012 11:47 AM

> To: mailto:%40yahoogroups.com

> Subject: Re: New onset in 6 year old

>

> A couple things to try while u wait r ibuprofren.

> It seems to work on bringing some inflammation

> Down in the brain. Crazy but I've been doing it.

> Also we give my son melatonin and clonidine

> At night to help him get to sleep. Cbt therapy helps when

> Symptoms calm down a bit. I would still try and

> Get an antibiotic to see if it works. One that

> Works for a wider range of infections maybe, as strep

> Is not the only cause (PANS). We r waiting on

> A boat load of tests that my son had done last week

> When he had his tonsils out. I will let u know

> What we find. You can email me if u like.

> Debbie

>

> Sent from my iPhone

>

> On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

>

> > 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]

oh, Okay. My mind is just reeling from all this. I’m going to email you.

From: Debbie

Sent: Monday, June 04, 2012 12:17 PM

To:

Subject: Re: New onset in 6 year old

Clonidine is a prescription that works at calming

Him down but I noticed it doesn't work as well

Without the melatonin.

Sent from my iPhone

On Jun 4, 2012, at 12:58 PM, mailto:mistymyres%40centurytel.net wrote:

> Debbie – I wondered about trying ibuprofen. I’m waiting on a call from the

pediatrician for advice on the sleep issue. We’ll see what they say...I may

try melatonin. I’m not familiar with clonidine.

>

> From: Debbie

> Sent: Monday, June 04, 2012 11:47 AM

> To: mailto:%40yahoogroups.com

> Subject: Re: New onset in 6 year old

>

> A couple things to try while u wait r ibuprofren.

> It seems to work on bringing some inflammation

> Down in the brain. Crazy but I've been doing it.

> Also we give my son melatonin and clonidine

> At night to help him get to sleep. Cbt therapy helps when

> Symptoms calm down a bit. I would still try and

> Get an antibiotic to see if it works. One that

> Works for a wider range of infections maybe, as strep

> Is not the only cause (PANS). We r waiting on

> A boat load of tests that my son had done last week

> When he had his tonsils out. I will let u know

> What we find. You can email me if u like.

> Debbie

>

> Sent from my iPhone

>

> On Jun 4, 2012, at 12:28 PM, " thrifty_al_mama "

<mailto:mistymyres%40centurytel.net> wrote:

>

> > 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 Misty, welcome! So she had bloodwork too for strep and came back negative?

Well there are other illnesses that have triggered it too, which go with the

PANS acronym now. You've probably seen this:

http://www.ocfoundation.org/PANDAS/

My son, now 23, also seemed to have overnight onset in 6th grade. I'd have

sworn he was fine even the week before it. He had some of the criteria for

PANDAS but we never had him tested at that time because so far as I knew he

hadn't been sick.

You might still ask the doc to prescribe an antibiotic like augmentin, as stated

in above article.

So aside from the prescription type help, there is still therapy for OCD,

whatever the cause. Even if her OCD isn't " around " some days, she may enjoy

some of the children's books about OCD. And of course there are great parent

books available too! But she'd still be learning how OCD is treated and what it

is with the children's books.

If you know what her triggers are, which the therapist will help with, then you

can begin working on things. Now - some behaviors you may be accommodating

(ignoring) while you work on the " chosen " ones; generally, as you probably have

read, she will pick just a few things out (2 or 3) to begin working on " bossing

back " OCD. Are any of her triggers about germs or having things " just right " or

are they some physical type compulsions she has to do? For bedtime thoughts,

you may want to find some distraction right now. Read an extra book to her at

bed, hoping she'll fall asleep during it, have some music on or a

book-on-tape.... I saw someone suggest Melatonin, many parents feel that helps

too, given not long before bedtime I think.

Is she confessing any of her thoughts to you/dad?

single mom, 3 sons

>

> 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

[Guest guest]

Hi Misty, welcome! So she had bloodwork too for strep and came back negative?

Well there are other illnesses that have triggered it too, which go with the

PANS acronym now. You've probably seen this:

http://www.ocfoundation.org/PANDAS/

My son, now 23, also seemed to have overnight onset in 6th grade. I'd have

sworn he was fine even the week before it. He had some of the criteria for

PANDAS but we never had him tested at that time because so far as I knew he

hadn't been sick.

You might still ask the doc to prescribe an antibiotic like augmentin, as stated

in above article.

So aside from the prescription type help, there is still therapy for OCD,

whatever the cause. Even if her OCD isn't " around " some days, she may enjoy

some of the children's books about OCD. And of course there are great parent

books available too! But she'd still be learning how OCD is treated and what it

is with the children's books.

If you know what her triggers are, which the therapist will help with, then you

can begin working on things. Now - some behaviors you may be accommodating

(ignoring) while you work on the " chosen " ones; generally, as you probably have

read, she will pick just a few things out (2 or 3) to begin working on " bossing

back " OCD. Are any of her triggers about germs or having things " just right " or

are they some physical type compulsions she has to do? For bedtime thoughts,

you may want to find some distraction right now. Read an extra book to her at

bed, hoping she'll fall asleep during it, have some music on or a

book-on-tape.... I saw someone suggest Melatonin, many parents feel that helps

too, given not long before bedtime I think.

Is she confessing any of her thoughts to you/dad?

single mom, 3 sons

>

> 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

[Guest guest]

I give melatonin about 1/2 hour before bed.

Started with a dropper full and over 2 weeks

Time went up to 2. Doc said I could do three.

Sent from my iPhone

> Hi Misty, welcome! So she had bloodwork too for strep and came back negative?

Well there are other illnesses that have triggered it too, which go with the

PANS acronym now. You've probably seen this:

> http://www.ocfoundation.org/PANDAS/

>

> My son, now 23, also seemed to have overnight onset in 6th grade. I'd have

sworn he was fine even the week before it. He had some of the criteria for

PANDAS but we never had him tested at that time because so far as I knew he

hadn't been sick.

>

> You might still ask the doc to prescribe an antibiotic like augmentin, as

stated in above article.

>

> So aside from the prescription type help, there is still therapy for OCD,

whatever the cause. Even if her OCD isn't " around " some days, she may enjoy some

of the children's books about OCD. And of course there are great parent books

available too! But she'd still be learning how OCD is treated and what it is

with the children's books.

>

> If you know what her triggers are, which the therapist will help with, then

you can begin working on things. Now - some behaviors you may be accommodating

(ignoring) while you work on the " chosen " ones; generally, as you probably have

read, she will pick just a few things out (2 or 3) to begin working on " bossing

back " OCD. Are any of her triggers about germs or having things " just right " or

are they some physical type compulsions she has to do? For bedtime thoughts, you

may want to find some distraction right now. Read an extra book to her at bed,

hoping she'll fall asleep during it, have some music on or a book-on-tape.... I

saw someone suggest Melatonin, many parents feel that helps too, given not long

before bedtime I think.

>

> Is she confessing any of her thoughts to you/dad?

>

>

> single mom, 3 sons

>

>

> >

> > 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

>

>

[Guest guest]

Debbie- our pediatrician finally called back and said benadryl was the safest

thing, he felt, as this age. I didn’t specifically ask about Melatonin, but I

may ask the therapist about it. I know she mentioned some herbal treatments at

our initial appt. I figure benadryl won’t hurt for a short time until I can

ask his opinion. Thanks for the dosing info, though.

Chris- Yes, they did throat cultures on us all and did ASO titers on her plus

D-NASE (however you write that). We don’t have the last one back yet. Her ASO

titer came back 1:1 and they said 1:2 was considered significant. I don’t

really know how to interpret that. She has never in her life been diagnosed

with strep, so if anything shows up it would have been untreated. I have read a

little about PANS, but I have focused my energy on PANDAS because I just figured

that would be what it was. The therapist recommended What to do When Your Brain

Gets Stuck so we’ve got that ordered from Amazon. Her triggers are very much

germs and contaminants (her food allergies). She doesn’t really have any

demands about things being a certain order. She has some compulsive hand

washing, but it is pretty mild. Her biggest problem is definitely compulsive

thoughts. On the bedtime things, she is pretty structured with a bedtime routine

that we’ve done since she was 2 or 3. She gets her story and then my husband

carries her to bed and tells her what the plans are for the next day and prays

with her. She then listens to a CD while she goes to sleep. Since the

behavior problems have started I have had to lay down with her some and distract

her with questions about the day or pleasant memories or whatever. She will

tell us some of her thoughts, but we usually have to dig for them a little. She

is hiding some things.

Misty

From: Debbie

Sent: Monday, June 04, 2012 8:14 PM

To:

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

I give melatonin about 1/2 hour before bed.

Started with a dropper full and over 2 weeks

Time went up to 2. Doc said I could do three.

Sent from my iPhone

On Jun 4, 2012, at 6:48 PM, " " <mailto:%40hotmail.com> wrote:

> Hi Misty, welcome! So she had bloodwork too for strep and came back negative?

Well there are other illnesses that have triggered it too, which go with the

PANS acronym now. You've probably seen this:

> http://www.ocfoundation.org/PANDAS/

>

> My son, now 23, also seemed to have overnight onset in 6th grade. I'd have

sworn he was fine even the week before it. He had some of the criteria for

PANDAS but we never had him tested at that time because so far as I knew he

hadn't been sick.

>

> You might still ask the doc to prescribe an antibiotic like augmentin, as

stated in above article.

>

> So aside from the prescription type help, there is still therapy for OCD,

whatever the cause. Even if her OCD isn't " around " some days, she may enjoy some

of the children's books about OCD. And of course there are great parent books

available too! But she'd still be learning how OCD is treated and what it is

with the children's books.

>

> If you know what her triggers are, which the therapist will help with, then

you can begin working on things. Now - some behaviors you may be accommodating

(ignoring) while you work on the " chosen " ones; generally, as you probably have

read, she will pick just a few things out (2 or 3) to begin working on " bossing

back " OCD. Are any of her triggers about germs or having things " just right " or

are they some physical type compulsions she has to do? For bedtime thoughts, you

may want to find some distraction right now. Read an extra book to her at bed,

hoping she'll fall asleep during it, have some music on or a book-on-tape.... I

saw someone suggest Melatonin, many parents feel that helps too, given not long

before bedtime I think.

>

> Is she confessing any of her thoughts to you/dad?

>

>

> single mom, 3 sons

>

>

> >

> > 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

>

>

[Guest guest]

Debbie- our pediatrician finally called back and said benadryl was the safest

thing, he felt, as this age. I didn’t specifically ask about Melatonin, but I

may ask the therapist about it. I know she mentioned some herbal treatments at

our initial appt. I figure benadryl won’t hurt for a short time until I can

ask his opinion. Thanks for the dosing info, though.

Chris- Yes, they did throat cultures on us all and did ASO titers on her plus

D-NASE (however you write that). We don’t have the last one back yet. Her ASO

titer came back 1:1 and they said 1:2 was considered significant. I don’t

really know how to interpret that. She has never in her life been diagnosed

with strep, so if anything shows up it would have been untreated. I have read a

little about PANS, but I have focused my energy on PANDAS because I just figured

that would be what it was. The therapist recommended What to do When Your Brain

Gets Stuck so we’ve got that ordered from Amazon. Her triggers are very much

germs and contaminants (her food allergies). She doesn’t really have any

demands about things being a certain order. She has some compulsive hand

washing, but it is pretty mild. Her biggest problem is definitely compulsive

thoughts. On the bedtime things, she is pretty structured with a bedtime routine

that we’ve done since she was 2 or 3. She gets her story and then my husband

carries her to bed and tells her what the plans are for the next day and prays

with her. She then listens to a CD while she goes to sleep. Since the

behavior problems have started I have had to lay down with her some and distract

her with questions about the day or pleasant memories or whatever. She will

tell us some of her thoughts, but we usually have to dig for them a little. She

is hiding some things.

Misty

From: Debbie

Sent: Monday, June 04, 2012 8:14 PM

To:

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

I give melatonin about 1/2 hour before bed.

Started with a dropper full and over 2 weeks

Time went up to 2. Doc said I could do three.

Sent from my iPhone

On Jun 4, 2012, at 6:48 PM, " " <mailto:%40hotmail.com> wrote:

> Hi Misty, welcome! So she had bloodwork too for strep and came back negative?

Well there are other illnesses that have triggered it too, which go with the

PANS acronym now. You've probably seen this:

> http://www.ocfoundation.org/PANDAS/

>

> My son, now 23, also seemed to have overnight onset in 6th grade. I'd have

sworn he was fine even the week before it. He had some of the criteria for

PANDAS but we never had him tested at that time because so far as I knew he

hadn't been sick.

>

> You might still ask the doc to prescribe an antibiotic like augmentin, as

stated in above article.

>

> So aside from the prescription type help, there is still therapy for OCD,

whatever the cause. Even if her OCD isn't " around " some days, she may enjoy some

of the children's books about OCD. And of course there are great parent books

available too! But she'd still be learning how OCD is treated and what it is

with the children's books.

>

> If you know what her triggers are, which the therapist will help with, then

you can begin working on things. Now - some behaviors you may be accommodating

(ignoring) while you work on the " chosen " ones; generally, as you probably have

read, she will pick just a few things out (2 or 3) to begin working on " bossing

back " OCD. Are any of her triggers about germs or having things " just right " or

are they some physical type compulsions she has to do? For bedtime thoughts, you

may want to find some distraction right now. Read an extra book to her at bed,

hoping she'll fall asleep during it, have some music on or a book-on-tape.... I

saw someone suggest Melatonin, many parents feel that helps too, given not long

before bedtime I think.

>

> Is she confessing any of her thoughts to you/dad?

>

>

> single mom, 3 sons

>

>

> >

> > 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

>

>

[Guest guest]

I agree- it sure sounds suspicious for PANS if not PANDAS. Other infections

like lyme and mycoplasma as well as viruses can cause it so neg strep tests dont

rule out PANS. I also agree trying antibiiotics and ibuprofin

[Guest guest]

yes...it can get better with good ERP treatment. Even if it is PANS it will

help. For sleep issues, try the highest rec. dose of Benedryl OTR. Hang in

there...

>

> > 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]

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 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

>