Newbie: Re 5 yr old daughter changed practically overnight

[Guest guest]

Hi Leah,

Welcome and great that you found us. Yeah, it can seem like an

overnight change but in hindsight, it's a buildup of behaviors that

increase in their severity and also change. So it seems sudden, and

the severity is.

It seems like you're doing all the right things. I can tell you

personally that my 8 year old son also went full blown OCD overnight.

Literally.

Like your daughter, there were a few behaviors, but one day, he

started with the exact same things you're hearing: the constant

confessing, the need to say things exactly right, and he confessed a

lot of incredibly inappropriate sexual thoughts.

My son also said, " I don't know if I did that on purpose " ,and he

became increasingly confused. It got very rough very fast.

And he got a psychiatric team, there were medication trials, and he's

a LOT better now.

Feel free to write to me off list if you'd like and good luck and take

comfort that you're doing all the right things!

Dana

[Guest guest]

Hi Leah,

Welcome and great that you found us. Yeah, it can seem like an

overnight change but in hindsight, it's a buildup of behaviors that

increase in their severity and also change. So it seems sudden, and

the severity is.

It seems like you're doing all the right things. I can tell you

personally that my 8 year old son also went full blown OCD overnight.

Literally.

Like your daughter, there were a few behaviors, but one day, he

started with the exact same things you're hearing: the constant

confessing, the need to say things exactly right, and he confessed a

lot of incredibly inappropriate sexual thoughts.

My son also said, " I don't know if I did that on purpose " ,and he

became increasingly confused. It got very rough very fast.

And he got a psychiatric team, there were medication trials, and he's

a LOT better now.

Feel free to write to me off list if you'd like and good luck and take

comfort that you're doing all the right things!

Dana

[Guest guest]

Hi Leah,

YES! Our ds had an abrupt - literally overnight - explosion of sx

about 5.5 years ago (he was almost 7). Before the sx, he was an easy

going, calm, happy child. Everything started immediately after a bad

sore throat - tics, OCD, fears, separation anxiety, handwriting

changes, extreme silliness, etc. He has a PANDAS dx, but that

doesn't help much.

The doctor would need to do a strep culture (which is what they did,

I think) plus a blood draw to test for ASO and AntiDNAse levels. You

would need to follow changes in these levels over time and in

relation to sx for a PANDAS dx. However, if she tests positive for

strep - treatment with an antibiotic (usually Penicillin) should

start right away. You should also look into available studies in

your area. What part of the country are you in?

What you describe sounds fairly consistent with pediatric onset

Bipolar Disorder. ***One bit of advice I would give is to absolutely

stay away from antidepressants medications until you know for sure

what you are dealing with and trying to treat.*** It's good that you

are getting in to see the pdoc at the end of the month. I'm so sorry

your dd is going through this. I know how heartbreaking and scary it

is for you, too. Hang in there.

Khris

>

> Hello Everyone,

>

> I am new here and I am looking for some one who has had a similar

> experience. My 5 yr old daughter started about a month ago telling

> me everything: I touched this, I picked my nose, I jumped on my

> bed, etc. Then overnight she started things like: I don't know if

I

> love you, I want to run away, I can't say I Love You, I can't say

> mom or dad, I can't say please or thank you etc. She still won't

> say the words, and has added phrases like: " Forget I said that " , " I

> don't know if I did that on purpose " , after everything she says.

> She has an obsession with having babies, and masturbation. She

says

> she has bad thoughts, and bad words in her head and they won't go

> away. I read up on PANDAS, and had her tested for strep, and

> retested after about 2 weeks, and they both came back negative.

> Could it still be PANDAS, and what should the doctor look for on

the

> blood work? He is not familar with PANDAS, and I am afraid

> something might get missed. OCD does run in my family, and I

> noticed some minor things in her, but nothing to explain the sudden

> onset. I have always told her doctor that I thought she had ADHD,

> but his response was that she was too young to be diagnosed. She

> has always been on the go, never sits still, runs when she should

> not, talks all the time, laughs inappropreately, runs around while

I

> read to her, and has a hard time going to sleep.

>

> She is a hoarder, and has always been terrified of loud noises.

She

> is extremely clumbsy, loses everything, takes days to clean her

room

> because she is so easily distracted, shows aggressive behavior, and

> is angered very easily.

>

> I have an appointment for a full Physical exam on the 24th, and

have

> requested a neuro exam also. She has an appointment with a child

> psychiatrist on the 29th. Is there anything else I should be doing

> or trying? Has anyone else seen this sudden onset?

>

> She is homeschooled, and is never out of my sight, so I know

nothing

> has happened to her sexually, and there have not been any major

> happenings in our lives as to trigger this behavior.

>

> Thank you for listening. If you have any info that might help

> please let me know.

> Leah

>

[Guest guest]

Hi Leah,

YES! Our ds had an abrupt - literally overnight - explosion of sx

about 5.5 years ago (he was almost 7). Before the sx, he was an easy

going, calm, happy child. Everything started immediately after a bad

sore throat - tics, OCD, fears, separation anxiety, handwriting

changes, extreme silliness, etc. He has a PANDAS dx, but that

doesn't help much.

The doctor would need to do a strep culture (which is what they did,

I think) plus a blood draw to test for ASO and AntiDNAse levels. You

would need to follow changes in these levels over time and in

relation to sx for a PANDAS dx. However, if she tests positive for

strep - treatment with an antibiotic (usually Penicillin) should

start right away. You should also look into available studies in

your area. What part of the country are you in?

What you describe sounds fairly consistent with pediatric onset

Bipolar Disorder. ***One bit of advice I would give is to absolutely

stay away from antidepressants medications until you know for sure

what you are dealing with and trying to treat.*** It's good that you

are getting in to see the pdoc at the end of the month. I'm so sorry

your dd is going through this. I know how heartbreaking and scary it

is for you, too. Hang in there.

Khris

>

> Hello Everyone,

>

> I am new here and I am looking for some one who has had a similar

> experience. My 5 yr old daughter started about a month ago telling

> me everything: I touched this, I picked my nose, I jumped on my

> bed, etc. Then overnight she started things like: I don't know if

I

> love you, I want to run away, I can't say I Love You, I can't say

> mom or dad, I can't say please or thank you etc. She still won't

> say the words, and has added phrases like: " Forget I said that " , " I

> don't know if I did that on purpose " , after everything she says.

> She has an obsession with having babies, and masturbation. She

says

> she has bad thoughts, and bad words in her head and they won't go

> away. I read up on PANDAS, and had her tested for strep, and

> retested after about 2 weeks, and they both came back negative.

> Could it still be PANDAS, and what should the doctor look for on

the

> blood work? He is not familar with PANDAS, and I am afraid

> something might get missed. OCD does run in my family, and I

> noticed some minor things in her, but nothing to explain the sudden

> onset. I have always told her doctor that I thought she had ADHD,

> but his response was that she was too young to be diagnosed. She

> has always been on the go, never sits still, runs when she should

> not, talks all the time, laughs inappropreately, runs around while

I

> read to her, and has a hard time going to sleep.

>

> She is a hoarder, and has always been terrified of loud noises.

She

> is extremely clumbsy, loses everything, takes days to clean her

room

> because she is so easily distracted, shows aggressive behavior, and

> is angered very easily.

>

> I have an appointment for a full Physical exam on the 24th, and

have

> requested a neuro exam also. She has an appointment with a child

> psychiatrist on the 29th. Is there anything else I should be doing

> or trying? Has anyone else seen this sudden onset?

>

> She is homeschooled, and is never out of my sight, so I know

nothing

> has happened to her sexually, and there have not been any major

> happenings in our lives as to trigger this behavior.

>

> Thank you for listening. If you have any info that might help

> please let me know.

> Leah

>

[Guest guest]

Leah-

My daughter had a sudden onset also. We have been completely

dumbfounded of where all this came from. She has the bad thoughts,

she calls it " the guy in my head " . At times she will cry saying the

guy in her head is telling her all these bad words to think of, or

say. She has severe separation anxiety. Loud noises send her into a

screaming ball, grabbing her ears. Easily angered. Frusrated.

She'll start repeating over and over, " I don;t understand, I don't

get it " . She too tells me everything, and if she thinks I'm not

listening she'll repeat it, again, again. She has a hard time

getting to sleep. Laughs inappropriatly (spelling ?) If someone is

laughing she ggets mad saying they are laughing at her, and how rude

it is. If she wants to play a game, she won't tell anyone, she'll

come running to me in full blown blowout screaming " everyone knows I

like to play that. "

With her, the onset of this was baffeling. Then they told me it

could of been set off by something small to us, but big to her. The

only thing that had happened just before she went into this, her

horse was taken to be bred. Docs say something like that could of

triggered it. The meds she is on right now are Topomax, Serequel,

melatonin to help her sleep. Whick by the way doesn't make much of a

difference.

So I don't know ! but there is my two cents.

Lynne

> >

> > Hello Everyone,

> >

> > I am new here and I am looking for some one who has had a similar

> > experience. My 5 yr old daughter started about a month ago

telling

> > me everything: I touched this, I picked my nose, I jumped on my

> > bed, etc. Then overnight she started things like: I don't know

if

> I

> > love you, I want to run away, I can't say I Love You, I can't say

> > mom or dad, I can't say please or thank you etc. She still won't

> > say the words, and has added phrases like: " Forget I said

that " , " I

> > don't know if I did that on purpose " , after everything she says.

> > She has an obsession with having babies, and masturbation. She

> says

> > she has bad thoughts, and bad words in her head and they won't go

> > away. I read up on PANDAS, and had her tested for strep, and

> > retested after about 2 weeks, and they both came back negative.

> > Could it still be PANDAS, and what should the doctor look for on

> the

> > blood work? He is not familar with PANDAS, and I am afraid

> > something might get missed. OCD does run in my family, and I

> > noticed some minor things in her, but nothing to explain the

sudden

> > onset. I have always told her doctor that I thought she had

ADHD,

> > but his response was that she was too young to be diagnosed. She

> > has always been on the go, never sits still, runs when she should

> > not, talks all the time, laughs inappropreately, runs around

while

> I

> > read to her, and has a hard time going to sleep.

> >

> > She is a hoarder, and has always been terrified of loud noises.

> She

> > is extremely clumbsy, loses everything, takes days to clean her

> room

> > because she is so easily distracted, shows aggressive behavior,

and

> > is angered very easily.

> >

> > I have an appointment for a full Physical exam on the 24th, and

> have

> > requested a neuro exam also. She has an appointment with a child

> > psychiatrist on the 29th. Is there anything else I should be

doing

> > or trying? Has anyone else seen this sudden onset?

> >

> > She is homeschooled, and is never out of my sight, so I know

> nothing

> > has happened to her sexually, and there have not been any major

> > happenings in our lives as to trigger this behavior.

> >

> > Thank you for listening. If you have any info that might help

> > please let me know.

> > Leah

> >

>

[Guest guest]

Hi Leah and welcome. You will find many to talk to and get support

from here. It can be scary and overwhelming especially when it comes

out of the blue. See if you have a support group in your area,

someone to talk to about everything. You do have this group of course

too!

Our son was 15 at onset and it was also sudden.

Re PANDAS, from what I understand even when they find elevated levels

of strep in the blood it's controversial what to do. For periodic

episodes of strep antibiotics are used, but ongoing use of an

antibiotic will cause other problems.

So this is not a route to follow for most, more rare from what I

understand. Possible that it is a cause for some, but answer is

generally the same in terms of medication and CBT. If it is in your

family that is more likely, since it is such a genetic disorder.

It certainly sounds like OCD from what you describe. See if you can

find a psychologist who specializes in OCD, who will do CBT

(cognitive behavior therapy) with the behavioral part being ERP

(exposure and response prevention). CBT is the only treatment that

works for OCD, and it can be effective without medication, it is the

first thing to try once you have a diagnosis - this kind of

psychologist is who diagnosed our son. Need psychiatrist for

medication though, if needed.

Check files on this website for explanations of OCD, Pandas, CBT etc.

Hang in there. Good that you have appointments set, should have some

answers soon.

Barb

>

> Hello Everyone,

>

> I am new here and I am looking for some one who has had a similar

> experience. My 5 yr old daughter started about a month ago telling

> me everything: I touched this, I picked my nose, I jumped on my

> bed, etc. Then overnight she started things like: I don't know if

I

> love you, I want to run away, I can't say I Love You, I can't say

> mom or dad, I can't say please or thank you etc. She still won't

> say the words, and has added phrases like: " Forget I said that " , " I

> don't know if I did that on purpose " , after everything she says.

> She has an obsession with having babies, and masturbation. She

says

> she has bad thoughts, and bad words in her head and they won't go

> away. I read up on PANDAS, and had her tested for strep, and

> retested after about 2 weeks, and they both came back negative.

> Could it still be PANDAS, and what should the doctor look for on

the

> blood work? He is not familar with PANDAS, and I am afraid

> something might get missed. OCD does run in my family, and I

> noticed some minor things in her, but nothing to explain the sudden

> onset. I have always told her doctor that I thought she had ADHD,

> but his response was that she was too young to be diagnosed. She

> has always been on the go, never sits still, runs when she should

> not, talks all the time, laughs inappropreately, runs around while

I

> read to her, and has a hard time going to sleep.

>

> She is a hoarder, and has always been terrified of loud noises.

She

> is extremely clumbsy, loses everything, takes days to clean her

room

> because she is so easily distracted, shows aggressive behavior, and

> is angered very easily.

>

> I have an appointment for a full Physical exam on the 24th, and

have

> requested a neuro exam also. She has an appointment with a child

> psychiatrist on the 29th. Is there anything else I should be doing

> or trying? Has anyone else seen this sudden onset?

>

> She is homeschooled, and is never out of my sight, so I know

nothing

> has happened to her sexually, and there have not been any major

> happenings in our lives as to trigger this behavior.

>

> Thank you for listening. If you have any info that might help

> please let me know.

> Leah

>

[Guest guest]

Hi Leah and welcome. You will find many to talk to and get support

from here. It can be scary and overwhelming especially when it comes

out of the blue. See if you have a support group in your area,

someone to talk to about everything. You do have this group of course

too!

Our son was 15 at onset and it was also sudden.

Re PANDAS, from what I understand even when they find elevated levels

of strep in the blood it's controversial what to do. For periodic

episodes of strep antibiotics are used, but ongoing use of an

antibiotic will cause other problems.

So this is not a route to follow for most, more rare from what I

understand. Possible that it is a cause for some, but answer is

generally the same in terms of medication and CBT. If it is in your

family that is more likely, since it is such a genetic disorder.

It certainly sounds like OCD from what you describe. See if you can

find a psychologist who specializes in OCD, who will do CBT

(cognitive behavior therapy) with the behavioral part being ERP

(exposure and response prevention). CBT is the only treatment that

works for OCD, and it can be effective without medication, it is the

first thing to try once you have a diagnosis - this kind of

psychologist is who diagnosed our son. Need psychiatrist for

medication though, if needed.

Check files on this website for explanations of OCD, Pandas, CBT etc.

Hang in there. Good that you have appointments set, should have some

answers soon.

Barb

>

> Hello Everyone,

>

> I am new here and I am looking for some one who has had a similar

> experience. My 5 yr old daughter started about a month ago telling

> me everything: I touched this, I picked my nose, I jumped on my

> bed, etc. Then overnight she started things like: I don't know if

I

> love you, I want to run away, I can't say I Love You, I can't say

> mom or dad, I can't say please or thank you etc. She still won't

> say the words, and has added phrases like: " Forget I said that " , " I

> don't know if I did that on purpose " , after everything she says.

> She has an obsession with having babies, and masturbation. She

says

> she has bad thoughts, and bad words in her head and they won't go

> away. I read up on PANDAS, and had her tested for strep, and

> retested after about 2 weeks, and they both came back negative.

> Could it still be PANDAS, and what should the doctor look for on

the

> blood work? He is not familar with PANDAS, and I am afraid

> something might get missed. OCD does run in my family, and I

> noticed some minor things in her, but nothing to explain the sudden

> onset. I have always told her doctor that I thought she had ADHD,

> but his response was that she was too young to be diagnosed. She

> has always been on the go, never sits still, runs when she should

> not, talks all the time, laughs inappropreately, runs around while

I

> read to her, and has a hard time going to sleep.

>

> She is a hoarder, and has always been terrified of loud noises.

She

> is extremely clumbsy, loses everything, takes days to clean her

room

> because she is so easily distracted, shows aggressive behavior, and

> is angered very easily.

>

> I have an appointment for a full Physical exam on the 24th, and

have

> requested a neuro exam also. She has an appointment with a child

> psychiatrist on the 29th. Is there anything else I should be doing

> or trying? Has anyone else seen this sudden onset?

>

> She is homeschooled, and is never out of my sight, so I know

nothing

> has happened to her sexually, and there have not been any major

> happenings in our lives as to trigger this behavior.

>

> Thank you for listening. If you have any info that might help

> please let me know.

> Leah

>

[Guest guest]

Then overnight she started things like: I don't know if I

> love you, I want to run away, I can't say I Love You, I can't say

> mom or dad, I can't say please or thank you etc. She still won't

> say the words, and has added phrases like: " Forget I said that " , " I

> don't know if I did that on purpose " ,

Leah,

You've described my dd (10) almost exactly. We found a great therapist who

taught me how to respond to her issues without enabling her and I read a lot

and most of them are pretty much under control most of the time. We still

deal with a few issues (not sure why I said that, won't say I love you for

fear of repeating it endlessly) a few times a day but not with the same

intensity as previously. She also still has some anxiety about wiping

herself after using the bathroom but it's manageable now, where before it

was traumatizing every time. Good luck learning how to deal with it and

addressing these issues. It's harder to address these needs for reassurance

than it is a physical compulsion sometimes. My dd is also home schooled and

that helps a lot, I think.