Re: New here...absolutely devastated

[Guest guest]

Crystal,

I am so sorry for what you and your child and family are going through. My 9 yr

old daughter has OCD as do I (although mine is quite mild at this time). It

sounds to me very likely that your daughter may have PANDAS (this is why they

did the strep test), this is an OCD-like illness brought on by an autoimmune

reaction to the strep virus. There are a number of people on this listserve who

can give you more advice about PANDAS. Hang in there and tell yourself and your

daughter that you will get through this. She is not crazy and you can " get your

daughter back. "

We had a very tough summer with my daughter's OCD; she has contamination issues

and was not able to use a public restroom as she spent up to an hour washing her

entire arms after using the toilet. With a combination of medication and

exposure and response prevention therapy, she has improved dramatically although

she still has work to do.

She is now in 4th grade and as I type she and two friends from her new school

are running around the house playing hide and seek while my younger one and her

friend are playing somewhere else in the house. If you had told me this summer

that we would have made this much progress, I could not have believed it. Also,

she has told both of her friends about her OCD (at least the basics). I am very

proud of her.

A good book you might read to your daughter is " Up and Down the Worry Hill " by

Aureen Pinto Wagner (I think). You should be able to find it at the library.

One of the scariest things for kids and parents both, I think, is to feel lost

and alone, like no one else has ever felt this way. You are not alone; there

are many wonderful people on this listserve which is a lifeline for many of us.

>

> Subject: New here...absolutely devastated

> To:

> Date: Wednesday, October 7, 2009, 3:20 PM

> Hello everyone. My name is Crystal. I

> am new here and in desperate need of support. Let me tell

> you what is going on with us and a little about my daughter.

> Last month my daughter turned five years old. She was

> perfectly fine. A few weeks ago she developed a bad cold

> that STILL has not gone away. About this time she also had a

> problem with a bully at school who insisted that they trade

> books at rest time every day. She told her no and the girl

> got mad and made her cry. She was previously a little

> worried about this girl because she pushed her on the first

> day of school. Yet, my daughter still wants so badly to be

> her friend. About two weeks ago she started asking me to

> check her hands for splinters. Not all the time, but maybe

> once a day. That same week she had a hard time falling

> asleep at night because she was worried about a project she

> had to do at school the next day where she had to poke holes

> in a piece of paper with her name on it with what I am

> assuming was a thumb tack or

> something. She was a fraid the tack would end up on the

> carpet and she would stick her hand on it. She cried a

> little. We talked about it and she went to sleep. The next

> morning she mentioned it again. We talked about it one time

> and she went to school. She came home that day with the

> project complete and said it went fine and she was happy she

> did it. Also a different morning that week she asked me (in

> a very sad way) " Mommy, has anyone ever said they hate you? "

> Turns out a boy came up to her at recess and said that a

> girl hated her but she had no idea why. She was really upset

> by this. I think the girl didn't like that my daughter was

> playing with someone that was " her friend. " I told her that

> it was that girls loss and not to let it bother her because

> some people are just hateful and not everyone has to be our

> friend. That Friday my husband and I went with her to the

> Zoo for a field trip. She was fine although a bit hyper and

> I had a hard time getting her to listen to me. I had

> been having a hard time with her listening to me lately

> though and I also attributed it to being at the zoo and

> being excited. She was also still sick with a cold, but it

> wasn't that bad at the time. Over the weekend her cold got a

> bit worse with a nasty cough. I kept her home from school

> the next Monday, but sent her back the next day. I learned

> from her teacher later that when she came back she washed or

> sanitized her hands all day long. On Wednesday my husband

> picked her up from school and we learned that she had a bad

> day and was crying and missed her parents. She also told us

> that she was upset because she stabbed herself in the hand

> with scissors. I didn't even see a mark though. That night,

> I read to her and put her to bed as normal, but then she

> called me back up and was crying because she said she didn't

> want to use scissors anymore because they might poke her eye

> out. She was very concerned with it, but she calmed down and

> went to sleep pretty fast. The next night at

> bedtime, she was convinced that she had been bitten by a

> spider. She had my husband check her whole body all over and

> the bed several times. It was a 30 minute process. I came up

> to relieve him and I spent the next 20 minutes with her,

> reassuring her that there were no spiders in her room. We

> actually do have an issue with brown recluse spiders in our

> home, but we have our house treated, we rarely see one and

> she has NEVER been scared of them before. Friday night we

> finally realized something was very wrong when she couldn't

> concentrate on anything and kept asking us if various parts

> of her body were okay. She would want us to look at her toes

> to see if they were okay and ask again and again and again

> if they were. Then it was her arm, elbow, knee, leg, head,

> face, EVERYTHING. She would barely touch something like the

> table or door and say it hurt her. She couldnt stop. 

> On Saturday my husband took her to an Open House at the Fire

> Station that she wanted to go to and she asked if

> she had been hit by a car as they were walking up. Then

> she was convinced that she had taken poison at one of the

> exhibits where they discussed how some medicine looks like

> candy. She asked the woman there repeatedly if she was sure.

> That was it, we took her to the clinic since her doctors

> office was closed and they though maybe she was having a

> reaction to the cold medicine she was being given. We

> discontinued and waited a couple day but it just got worse

> and stranger. She asked if her arms were still attached

> because she worried they may have been ripped off. (Found

> out last night that she got that from the Greys Anatomy show

> I was watching a couple of weeks ago that she just saw in

> passing. Then she wanted me to check her pee-pee to see if

> it was hurt because she wanted to make sure she wasn't hurt

> like a little boy who was raped by a teenager that she

> remembered hearing on the news. (That was like 6 months

> ago.) It goes on and on and on. Monday night we went to the

> Children's

> Hospital to find out what was going on. They did blood

> tests, urine tests and a ct scan. They all came back normal.

> The only thing they said was that she had some fluid in her

> ears and her sinuses were really full. They called Psych who

> came and spoke with us and she told us that my daughter

> seems to have OCD brought on by illness and anxiety. She

> also had them do a strep test and we should have the results

> from that tomorrow. She said it may clear up when she gets

> better or not go away and improve we just don't know for

> sure. It feels like I lost my little girl. She can't stop

> having these fears and worrying about everything and she is

> just not herself. She is acting so strange and I don't know

> how to handle it or where to go from here. Is it going to

> get better? Will she ever be normal again? Last night was so

> hard. It took her 2 1/2 hours to go to sleep and that was

> only when we all decided to go to bed and she slept with us.

> She seems to understand that she is acting compulsive.

> She asks us what is wrong with her and she will say, " How

> do I stop Mommy? I don't know how to stop. " I really need

> some advice or just some support. Thank you. Crystal

>

>

>

>

>

>

> ------------------------------------

>

> Our list archives feature may be accessed at: 

http://health.groups.yahoo.com/group//

> by scrolling down to the archives calendar .  Our links

> may be accessed at http://health.groups.yahoo.com/group//links

> .  Our files may be accessed at

> http://health.groups.yahoo.com/group//files

> .

> Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ),

Tamar Chansky, Ph.D.( http://www.worrywisekids.org ), and Dan Geller, M.D.

> (http://www2.massgeneral.org/pediatricpsych/staff/geller.html

> ). You may ask a question of any of these mental health

> professionals by inserting the words " Ask Dr.(insert name) "

> in the subject line of a post to the list.  Our list

> moderators are Castle, Judy Chabot, BJ Closner, and

> Barb Nesrallah.   Subscription issues or

> suggestions may be addressed to Louis Harkins, list

> administrator, at louisharkins@...

> .   Our group and related groups are listed

> at http://health.groups.yahoo.com/group/ocdsupportgroups/links

> .  OCF treatment providers list may be viewed at

http://www.ocfoundation.info/treatment-providers-list.php

> .

> NLM-NIH Drug Information Portal may be viewed at

>

http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp?APPLICATION_NAME=drugporta\

l

> .  OCF recommended reading list may be viewed at

http://www.ocfoundation.org/ocd-oc-spectrum-disorders-book-list.html

> .

>

[Guest guest]

Hi Crystal,there is ocd that is brought on by a Strep virus.It is called

Pandas.There is  a Md in NJ and  she recently was on tv.Her name is

Dr.Nicolaides.Phone # .She treats Pandas.There is also a book about

a boy who  had ocd  from strep called " Saving Sammy " There is also a website

pandasnetwork.org .There is a book for children " What to do when your brain gets

stuck " Our daughter is 6 1/2 years old and has ocd.We are going to Dr.N in

November to rule out pandas.Hang in there it will get better!Steph

Subject: New here...absolutely devastated

To:

Date: Wednesday, October 7, 2009, 3:20 PM

 

Hello everyone. My name is Crystal. I am new here and in

desperate need of support. Let me tell you what is going on with us and a little

about my daughter. Last month my daughter turned five years old. She was

perfectly fine. A few weeks ago she developed a bad cold that STILL has not gone

away. About this time she also had a problem with a bully at school who insisted

that they trade books at rest time every day. She told her no and the girl got

mad and made her cry. She was previously a little worried about this girl

because she pushed her on the first day of school. Yet, my daughter still wants

so badly to be her friend. About two weeks ago she started asking me to check

her hands for splinters. Not all the time, but maybe once a day. That same week

she had a hard time falling asleep at night because she was worried about a

project she had to do at school the next day where she had to poke holes in a

piece of paper with her name on

it with what I am assuming was a thumb tack or something. She was a fraid the

tack would end up on the carpet and she would stick her hand on it. She cried a

little. We talked about it and she went to sleep. The next morning she mentioned

it again. We talked about it one time and she went to school. She came home that

day with the project complete and said it went fine and she was happy she did

it. Also a different morning that week she asked me (in a very sad way) " Mommy,

has anyone ever said they hate you? " Turns out a boy came up to her at recess

and said that a girl hated her but she had no idea why. She was really upset by

this. I think the girl didn't like that my daughter was playing with someone

that was " her friend. " I told her that it was that girls loss and not to let it

bother her because some people are just hateful and not everyone has to be our

friend. That Friday my husband and I went with her to the Zoo for a field trip.

She was fine

although a bit hyper and I had a hard time getting her to listen to me. I had

been having a hard time with her listening to me lately though and I also

attributed it to being at the zoo and being excited. She was also still sick

with a cold, but it wasn't that bad at the time. Over the weekend her cold got a

bit worse with a nasty cough. I kept her home from school the next Monday, but

sent her back the next day. I learned from her teacher later that when she came

back she washed or sanitized her hands all day long. On Wednesday my husband

picked her up from school and we learned that she had a bad day and was crying

and missed her parents. She also told us that she was upset because she stabbed

herself in the hand with scissors. I didn't even see a mark though. That night,

I read to her and put her to bed as normal, but then she called me back up and

was crying because she said she didn't want to use scissors anymore because they

might poke her eye

out. She was very concerned with it, but she calmed down and went to sleep

pretty fast. The next night at bedtime, she was convinced that she had been

bitten by a spider. She had my husband check her whole body all over and the bed

several times. It was a 30 minute process. I came up to relieve him and I spent

the next 20 minutes with her, reassuring her that there were no spiders in her

room. We actually do have an issue with brown recluse spiders in our home, but

we have our house treated, we rarely see one and she has NEVER been scared of

them before. Friday night we finally realized something was very wrong when she

couldn't concentrate on anything and kept asking us if various parts of her body

were okay. She would want us to look at her toes to see if they were okay and

ask again and again and again if they were. Then it was her arm, elbow, knee,

leg, head, face, EVERYTHING. She would barely touch something like the table or

door and say it hurt

her. She couldnt stop. On Saturday my husband took her to an Open House at the

Fire Station that she wanted to go to and she asked if she had been hit by a car

as they were walking up. Then she was convinced that she had taken poison at one

of the exhibits where they discussed how some medicine looks like candy. She

asked the woman there repeatedly if she was sure. That was it, we took her to

the clinic since her doctors office was closed and they though maybe she was

having a reaction to the cold medicine she was being given. We discontinued and

waited a couple day but it just got worse and stranger. She asked if her arms

were still attached because she worried they may have been ripped off. (Found

out last night that she got that from the Greys Anatomy show I was watching a

couple of weeks ago that she just saw in passing. Then she wanted me to check

her pee-pee to see if it was hurt because she wanted to make sure she wasn't

hurt like a little boy

who was raped by a teenager that she remembered hearing on the news. (That was

like 6 months ago.) It goes on and on and on. Monday night we went to the

Children's Hospital to find out what was going on. They did blood tests, urine

tests and a ct scan. They all came back normal. The only thing they said was

that she had some fluid in her ears and her sinuses were really full. They

called Psych who came and spoke with us and she told us that my daughter seems

to have OCD brought on by illness and anxiety. She also had them do a strep test

and we should have the results from that tomorrow. She said it may clear up when

she gets better or not go away and improve we just don't know for sure. It feels

like I lost my little girl. She can't stop having these fears and worrying about

everything and she is just not herself. She is acting so strange and I don't

know how to handle it or where to go from here. Is it going to get better? Will

she ever be normal

again? Last night was so hard. It took her 2 1/2 hours to go to sleep and that

was only when we all decided to go to bed and she slept with us. She seems to

understand that she is acting compulsive. She asks us what is wrong with her and

she will say, " How do I stop Mommy? I don't know how to stop. " I really need

some advice or just some support. Thank you. Crystal

[Guest guest]

Crystal,

I know just how you feel.? My daughter is now 7 and we suspect PANDAS (OCD

brought on by a Strep infection).? It's confusing, controversial, and scary but

take a deep breath and know that there is treatment for OCD.? You need to find a

therapist who specializes in pediatric OCD and uses exposure therapy (the only

proven method) and who also knows about PANDAS.? Whether it's PANDAS or not, the

therapy is the same, so she/he can begin treatment and set you on course to deal

with the infection aspect.? My daughter is doing very well now and is not on any

medication.? It will be ok.

MIssy in OH

New here...absolutely devastated

> To:

> Date: Wednesday, October 7, 2009, 3:20 PM

> Hello everyone. My name is Crystal. I

> am new here and in desperate need of support. Let me tell

> you what is going on with us and a little about my daughter.

> Last month my daughter turned five years old. She was

> perfectly fine. A few weeks ago she developed a bad cold

> that STILL has not gone away. About this time she also had a

> problem with a bully at school who insisted that they trade

> books at rest time every day. She told her no and the girl

> got mad and made her cry. She was previously a little

> worried about this girl because she pushed her on the first

> day of school. Yet, my daughter still wants so badly to be

> her friend. About two weeks ago she started asking me to

> check her hands for splinters. Not all the time, but maybe

> once a day. That same week she had a hard time falling

> asleep at night because she was worried about a project she

> had to do at school the next day where she had to poke holes

> in a piece of paper with her name on it with what I am

> assuming was a thumb tack or

> something. She was a fraid the tack would end up on the

> carpet and she would stick her hand on it. She cried a

> little. We talked about it and she went to sleep. The next

> morning she mentioned it again. We talked about it one time

> and she went to school. She came home that day with the

> project complete and said it went fine and she was happy she

> did it. Also a different morning that week she asked me (in

> a very sad way) " Mommy, has anyone ever said they hate you? "

> Turns out a boy came up to her at recess and said that a

> girl hated her but she had no idea why. She was really upset

> by this. I think the girl didn't like that my daughter was

> playing with someone that was " her friend. " I told her that

> it was that girls loss and not to let it bother her because

> some people are just hateful and not everyone has to be our

> friend. That Friday my husband and I went with her to the

> Zoo for a field trip. She was fine although a bit hyper and

> I had a hard time getting her to listen to me. I had

> been having a hard time with her listening to me lately

> though and I also attributed it to being at the zoo and

> being excited. She was also still sick with a cold, but it

> wasn't that bad at the time. Over the weekend her cold got a

> bit worse with a nasty cough. I kept her home from school

> the next Monday, but sent her back the next day. I learned

> from her teacher later that when she came back she washed or

> sanitized her hands all day long. On Wednesday my husband

> picked her up from school and we learned that she had a bad

> day and was crying and missed her parents. She also told us

> that she was upset because she stabbed herself in the hand

> with scissors. I didn't even see a mark though. That night,

> I read to her and put her to bed as normal, but then she

> called me back up and was crying because she said she didn't

> want to use scissors anymore because they might poke her eye

> out. She was very concerned with it, but she calmed down and

> went to sleep pretty fast. The next night at

> bedtime, she was convinced that she had been bitten by a

> spider. She had my husband check her whole body all over and

> the bed several times. It was a 30 minute process. I came up

> to relieve him and I spent the next 20 minutes with her,

> reassuring her that there were no spiders in her room. We

> actually do have an issue with brown recluse spiders in our

> home, but we have our house treated, we rarely see one and

> she has NEVER been scared of them before. Friday night we

> finally realized something was very wrong when she couldn't

> concentrate on anything and kept asking us if various parts

> of her body were okay. She would want us to look at her toes

> to see if they were okay and ask again and again and again

> if they were. Then it was her arm, elbow, knee, leg, head,

> face, EVERYTHING. She would barely touch something like the

> table or door and say it hurt her. She couldnt stop.?

> On Saturday my husband took her to an Open House at the Fire

> Station that she wanted to go to and she asked if

> she had been hit by a car as they were walking up. Then

> she was convinced that she had taken poison at one of the

> exhibits where they discussed how some medicine looks like

> candy. She asked the woman there repeatedly if she was sure.

> That was it, we took her to the clinic since her doctors

> office was closed and they though maybe she was having a

> reaction to the cold medicine she was being given. We

> discontinued and waited a couple day but it just got worse

> and stranger. She asked if her arms were still attached

> because she worried they may have been ripped off. (Found

> out last night that she got that from the Greys Anatomy show

> I was watching a couple of weeks ago that she just saw in

> passing. Then she wanted me to check her pee-pee to see if

> it was hurt because she wanted to make sure she wasn't hurt

> like a little boy who was raped by a teenager that she

> remembered hearing on the news. (That was like 6 months

> ago.) It goes on and on and on. Monday night we went to the

> Children's

> Hospital to find out what was going on. They did blood

> tests, urine tests and a ct scan. They all came back normal.

> The only thing they said was that she had some fluid in her

> ears and her sinuses were really full. They called Psych who

> came and spoke with us and she told us that my daughter

> seems to have OCD brought on by illness and anxiety. She

> also had them do a strep test and we should have the results

> from that tomorrow. She said it may clear up when she gets

> better or not go away and improve we just don't know for

> sure. It feels like I lost my little girl. She can't stop

> having these fears and worrying about everything and she is

> just not herself. She is acting so strange and I don't know

> how to handle it or where to go from here. Is it going to

> get better? Will she ever be normal again? Last night was so

> hard. It took her 2 1/2 hours to go to sleep and that was

> only when we all decided to go to bed and she slept with us.

> She seems to understand that she is acting compulsive.

> She asks us what is wrong with her and she will say, " How

> do I stop Mommy? I don't know how to stop. " I really need

> some advice or just some support. Thank you. Crystal

>

>

>

>

>

>

> ------------------------------------

>

> Our list archives feature may be accessed at:?

http://health.groups.yahoo.com/group//

> by scrolling down to the archives calendar .? Our links

> may be accessed at http://health.groups.yahoo.com/group//links

> .? Our files may be accessed at

> http://health.groups.yahoo.com/group//files

> .

> Our list advisors are Gail B. , Ed.D.(http://www.ocdawareness.com ),

Tamar Chansky, Ph.D.( http://www.worrywisekids.org ), and Dan Geller, M.D.

> (http://www2.massgeneral.org/pediatricpsych/staff/geller.html

> ). You may ask a question of any of these mental health

> professionals by inserting the words " Ask Dr.(insert name) "

> in the subject line of a post to the list.? Our list

> moderators are Castle, Judy Chabot, BJ Closner, and

> Barb Nesrallah.???Subscription issues or

> suggestions may be addressed to Louis Harkins, list

> administrator, at louisharkins@...

> .???Our group and related groups are listed

> at http://health.groups.yahoo.com/group/ocdsupportgroups/links

> .? OCF treatment providers list may be viewed at

http://www.ocfoundation.info/treatment-providers-list.php

> .

> NLM-NIH Drug Information Portal may be viewed at

>

http://druginfo.nlm.nih.gov/drugportal/drugportal.jsp?APPLICATION_NAME=drugporta\

l

> .? OCF recommended reading list may be viewed at

http://www.ocfoundation.org/ocd-oc-spectrum-disorders-book-list.html

> .

>

[Guest guest]

Hi Crystal! I'm (short for Crystal!) I saw where others have already

mentioned therapy (Cognitive Behavioral Therapy and Exposure & Response

Prevention - CBT with ERP) and have suggested children's books. And PANDAS type

OCD.

Yeah, it's rough with the seemingly abrupt OCD onset, hang in there! My son

(now 20) began with OCD in 6th grade. Suddenly OCD stuff 24/7, just

constant. However, when younger he also asked a lot of reassurance type

questions, some of them similar to your daughter, asking so much about his body

(what's that mark/blemish, how long will it take this to heal, I'm feeling

something in my stomach/chest...what's wrong, could it be cancer...and on & on).

And I could answer him and then maybe 30 min or less later, he'd be back, even

with same question. At the time I just thought of him as worrying too much and

hoped he'd get thru this " stage " - which he eventually did. He had a few other

quirks too. Just nothing that signaled " disorder " to me. The questions weren't

everyday but often, same with other stuff, nothing so bad I sought help. But

when OCD began in 6th grade with all types of compulsions, etc., constantly,

well the " disorder " was here!

Sounds like your daughter also has the 24/7 daily OCD and sounds like it started

due to illness. You'll read lots about PANDAS OCD if that is determined, but

the therapy (CBT with ERP) will still be the same. Doctor might approach any

other treatment (meds or antibiotics) differently than non-PANDAS. Sometimes

with PANDAS the OCD will wane, even go away, after a few weeks but begin again

with future illness. Not always the case.

's OCD hasn't been determined as PANDAS but his OCD still worsened with a

fever or strep.

I'm sorry she's got the bully type at school, that's rough enough without

throwing in OCD amid the worries of that!

I know this time is like a nightmare, roller coaster, just worry about your

daughter, but you're still in the diagnosing, getting help with school, seeking

help...initial phase, this WILL get better! Just hang in there, breathe, and do

find some OCD-free time for you & dad, even just minutes here & there during the

day!

>

> Hello everyone. My name is Crystal. I am new here and in desperate need of

support. Let me tell you what is going on with us and a little about my

daughter. Last month my daughter turned five years old. She was perfectly fine.

A few weeks ago she developed a bad cold that STILL has not gone away. About

this time she also had a problem with a bully at school who insisted that they

trade books at rest time every day. She told her no and the girl got mad and

made her

[Guest guest]

Hi Crystal,

Welcome to the group. So sorry about all that is going on right now. Glad you

joined the group. You'll receive tons of information and support. I ditto what

said so eloquently, especially stressing ERP and how hard this is

initially and that it does get better. Good luck and remember we're here.

Terry

>

> Hello everyone. My name is Crystal. I am new here and in desperate need of

support. Let me tell you what is going on with us and a little about my

daughter. Last month my daughter turned five years old. She was perfectly fine.

A few weeks ago she developed a bad cold that STILL has not gone away. About

this time she also had a problem with a bully at school who insisted that they

trade books at rest time every day. She told her no and the girl got mad and

made her cry. She was previously a little worried about this girl because she

pushed her on the first day of school. Yet, my daughter still wants so badly to

be her friend. About two weeks ago she started asking me to check her hands for

splinters. Not all the time, but maybe once a day. That same week she had a hard

time falling asleep at night because she was worried about a project she had to

do at school the next day where she had to poke holes in a piece of paper with

her name on it with what I am assuming was a thumb tack or something. She was a

fraid the tack would end up on the carpet and she would stick her hand on it.

She cried a little. We talked about it and she went to sleep. The next morning

she mentioned it again. We talked about it one time and she went to school. She

came home that day with the project complete and said it went fine and she was

happy she did it. Also a different morning that week she asked me (in a very sad

way) " Mommy, has anyone ever said they hate you? " Turns out a boy came up to her

at recess and said that a girl hated her but she had no idea why. She was really

upset by this. I think the girl didn't like that my daughter was playing with

someone that was " her friend. " I told her that it was that girls loss and not to

let it bother her because some people are just hateful and not everyone has to

be our friend. That Friday my husband and I went with her to the Zoo for a field

trip. She was fine although a bit hyper and I had a hard time getting her to

listen to me. I had been having a hard time with her listening to me lately

though and I also attributed it to being at the zoo and being excited. She was

also still sick with a cold, but it wasn't that bad at the time. Over the

weekend her cold got a bit worse with a nasty cough. I kept her home from school

the next Monday, but sent her back the next day. I learned from her teacher

later that when she came back she washed or sanitized her hands all day long. On

Wednesday my husband picked her up from school and we learned that she had a bad

day and was crying and missed her parents. She also told us that she was upset

because she stabbed herself in the hand with scissors. I didn't even see a mark

though. That night, I read to her and put her to bed as normal, but then she

called me back up and was crying because she said she didn't want to use

scissors anymore because they might poke her eye out. She was very concerned

with it, but she calmed down and went to sleep pretty fast. The next night at

bedtime, she was convinced that she had been bitten by a spider. She had my

husband check her whole body all over and the bed several times. It was a 30

minute process. I came up to relieve him and I spent the next 20 minutes with

her, reassuring her that there were no spiders in her room. We actually do have

an issue with brown recluse spiders in our home, but we have our house treated,

we rarely see one and she has NEVER been scared of them before. Friday night we

finally realized something was very wrong when she couldn't concentrate on

anything and kept asking us if various parts of her body were okay. She would

want us to look at her toes to see if they were okay and ask again and again and

again if they were. Then it was her arm, elbow, knee, leg, head, face,

EVERYTHING. She would barely touch something like the table or door and say it

hurt her. She couldnt stop. On Saturday my husband took her to an Open House at

the Fire Station that she wanted to go to and she asked if she had been hit by a

car as they were walking up. Then she was convinced that she had taken poison at

one of the exhibits where they discussed how some medicine looks like candy. She

asked the woman there repeatedly if she was sure. That was it, we took her to

the clinic since her doctors office was closed and they though maybe she was

having a reaction to the cold medicine she was being given. We discontinued and

waited a couple day but it just got worse and stranger. She asked if her arms

were still attached because she worried they may have been ripped off. (Found

out last night that she got that from the Greys Anatomy show I was watching a

couple of weeks ago that she just saw in passing. Then she wanted me to check

her pee-pee to see if it was hurt because she wanted to make sure she wasn't

hurt like a little boy who was raped by a teenager that she remembered hearing

on the news. (That was like 6 months ago.) It goes on and on and on. Monday

night we went to the Children's Hospital to find out what was going on. They did

blood tests, urine tests and a ct scan. They all came back normal. The only

thing they said was that she had some fluid in her ears and her sinuses were

really full. They called Psych who came and spoke with us and she told us that

my daughter seems to have OCD brought on by illness and anxiety. She also had

them do a strep test and we should have the results from that tomorrow. She said

it may clear up when she gets better or not go away and improve we just don't

know for sure. It feels like I lost my little girl. She can't stop having these

fears and worrying about everything and she is just not herself. She is acting

so strange and I don't know how to handle it or where to go from here. Is it

going to get better? Will she ever be normal again? Last night was so hard. It

took her 2 1/2 hours to go to sleep and that was only when we all decided to go

to bed and she slept with us. She seems to understand that she is acting

compulsive. She asks us what is wrong with her and she will say, " How do I stop

Mommy? I don't know how to stop. " I really need some advice or just some

support. Thank you. Crystal

>

[Guest guest]

Crystal,

I am so sorry for what you and your family are going through. I know how very

scary it is to put your child to bed and have them wake up a different person.

This is exactly what happened with my daughter when she was five.

Unfortunately, it took us almost one year to figure out what was going on. The

very positive thing in your case is that you hopefully will not have to endure

that.

What you are describing is PANDAS, no question. Go to these two following web

sites to learn more:

www.pandasnetwork.org and www.latitudes.org (there is a PANDAS section) There

are over 100 families on the latitudes forum whose children have PANDAS, so

there is lots of info and help for you!

Strep can be in many different places in the body, the tonsils are just one

place. Getting normal strep titers means nothing b/c many kids with PANDAS have

strep but their titers are normal. When the physician sees a normal titer

he/she says the child cannot have strep, which is absolutely not the case. You

can also get a negative throat culture and still have strep. One of the places

that strep hides in in the ear (way down in the eustachian tube and middle ear)

and the sinuses. You said her sinuses are full and she has fluid in her ears?

They very well could have strep- it is very common. She needs to be placed on a

strong dose of an effective antibiotic ASAP (not penicillin or amoxicillin b/c

they have high failure rates with strep) A cephalosporin (like keflex or

omniceph) or zithromax.

One of the best ways to diagnose PANDAS is by the response to antibiotics. You

do not want to delay getting her on antibiotics.

Unfortunately a lot of physicians are still clueless as to PANDAS existence and

some physicians don't even believe it can exist. With that said, let me tell

you that there are physicians around the world (they are busily studying this in

many countries) who absolutely know how real PANDAS is. Please don't let any

doctor tell you this is not what is going on or that PANDAS is " controversial " .

You hang in there and let me know if I can help. Bottom line is she needs

antibiotics asap.

Colleen

>

> Hello everyone. My name is Crystal. I am new here and in desperate need of

support. Let me tell you what is going on with us and a little about my

daughter. Last month my daughter turned five years old. She was perfectly fine.

A few weeks ago she developed a bad cold that STILL has not gone away. About

this time she also had a problem with a bully at school who insisted that they

trade books at rest time every day. She told her no and the girl got mad and

made her cry. She was previously a little worried about this girl because she

pushed her on the first day of school. Yet, my daughter still wants so badly to

be her friend. About two weeks ago she started asking me to check her hands for

splinters. Not all the time, but maybe once a day. That same week she had a hard

time falling asleep at night because she was worried about a project she had to

do at school the next day where she had to poke holes in a piece of paper with

her name on it with what I am assuming was a thumb tack or something. She was a

fraid the tack would end up on the carpet and she would stick her hand on it.

She cried a little. We talked about it and she went to sleep. The next morning

she mentioned it again. We talked about it one time and she went to school. She

came home that day with the project complete and said it went fine and she was

happy she did it. Also a different morning that week she asked me (in a very sad

way) " Mommy, has anyone ever said they hate you? " Turns out a boy came up to her

at recess and said that a girl hated her but she had no idea why. She was really

upset by this. I think the girl didn't like that my daughter was playing with

someone that was " her friend. " I told her that it was that girls loss and not to

let it bother her because some people are just hateful and not everyone has to

be our friend. That Friday my husband and I went with her to the Zoo for a field

trip. She was fine although a bit hyper and I had a hard time getting her to

listen to me. I had been having a hard time with her listening to me lately

though and I also attributed it to being at the zoo and being excited. She was

also still sick with a cold, but it wasn't that bad at the time. Over the

weekend her cold got a bit worse with a nasty cough. I kept her home from school

the next Monday, but sent her back the next day. I learned from her teacher

later that when she came back she washed or sanitized her hands all day long. On

Wednesday my husband picked her up from school and we learned that she had a bad

day and was crying and missed her parents. She also told us that she was upset

because she stabbed herself in the hand with scissors. I didn't even see a mark

though. That night, I read to her and put her to bed as normal, but then she

called me back up and was crying because she said she didn't want to use

scissors anymore because they might poke her eye out. She was very concerned

with it, but she calmed down and went to sleep pretty fast. The next night at

bedtime, she was convinced that she had been bitten by a spider. She had my

husband check her whole body all over and the bed several times. It was a 30

minute process. I came up to relieve him and I spent the next 20 minutes with

her, reassuring her that there were no spiders in her room. We actually do have

an issue with brown recluse spiders in our home, but we have our house treated,

we rarely see one and she has NEVER been scared of them before. Friday night we

finally realized something was very wrong when she couldn't concentrate on

anything and kept asking us if various parts of her body were okay. She would

want us to look at her toes to see if they were okay and ask again and again and

again if they were. Then it was her arm, elbow, knee, leg, head, face,

EVERYTHING. She would barely touch something like the table or door and say it

hurt her. She couldnt stop. On Saturday my husband took her to an Open House at

the Fire Station that she wanted to go to and she asked if she had been hit by a

car as they were walking up. Then she was convinced that she had taken poison at

one of the exhibits where they discussed how some medicine looks like candy. She

asked the woman there repeatedly if she was sure. That was it, we took her to

the clinic since her doctors office was closed and they though maybe she was

having a reaction to the cold medicine she was being given. We discontinued and

waited a couple day but it just got worse and stranger. She asked if her arms

were still attached because she worried they may have been ripped off. (Found

out last night that she got that from the Greys Anatomy show I was watching a

couple of weeks ago that she just saw in passing. Then she wanted me to check

her pee-pee to see if it was hurt because she wanted to make sure she wasn't

hurt like a little boy who was raped by a teenager that she remembered hearing

on the news. (That was like 6 months ago.) It goes on and on and on. Monday

night we went to the Children's Hospital to find out what was going on. They did

blood tests, urine tests and a ct scan. They all came back normal. The only

thing they said was that she had some fluid in her ears and her sinuses were

really full. They called Psych who came and spoke with us and she told us that

my daughter seems to have OCD brought on by illness and anxiety. She also had

them do a strep test and we should have the results from that tomorrow. She said

it may clear up when she gets better or not go away and improve we just don't

know for sure. It feels like I lost my little girl. She can't stop having these

fears and worrying about everything and she is just not herself. She is acting

so strange and I don't know how to handle it or where to go from here. Is it

going to get better? Will she ever be normal again? Last night was so hard. It

took her 2 1/2 hours to go to sleep and that was only when we all decided to go

to bed and she slept with us. She seems to understand that she is acting

compulsive. She asks us what is wrong with her and she will say, " How do I stop

Mommy? I don't know how to stop. " I really need some advice or just some

support. Thank you. Crystal

>

[Guest guest]

Crystal,

So sorry you are experiencing this. All of us on this list can remember our

lives before OCD reared its ugly head. It is devastating. We wish we didn't

have to deal with it. It's o.k. to be angry and grieve. But know that there is

hope, this is a very common disorder, and there are people (like this wonderful

group) to help you and your family through this. A book that has helped my

understanding, Tamar Chansky's book " Freeing you child from Obsessive Compulsive

Disorder "

I would visit with your daughter's teacher and principal also about the

bullying. My 12 yr. old son with OCD has major flares with his OCD due to the

stress of being bullied. I don't believe school stress caused his OCD, but it

sure can make it worse. I am working with our school to become more aware of

verbal bullying. We have even threatened to bring in protection and advocacy.

Otherwise, I can't add anything to what the rest of the members have already

said. They are an invaluable source of knowledge, wisdom and experience.

Blessings from NOrth Dakota,

Becky

[Guest guest]

Hi Crystal,

I can see that you have gotten lots of good information regarding PANDAS,

which this certainly sounds like. I didn't see that anyone sent you this

link. This is the story that the Today Show did on Saving Sammy.

http://today. <http://today.msnbc.msn.com/id/26184891/vp/33000818#33000818>

msnbc.msn.com/id/26184891/vp/33000818#33000818

I hope you are starting to find the help that you need for your daughter. I

too had tears in my eyes as I read your story because it was all too

familiar. I know just how hard this can be to deal with. But there is help

out there and as I know someone else told you, there IS a light at the end

of the tunnel!

All the best,

_____

From:

[mailto: ] On Behalf Of sosures2009

Sent: Wednesday, October 07, 2009 2:21 PM

To:

Subject: New here...absolutely devastated

Hello everyone. My name is Crystal. I am new here and in desperate need of

support. Let me tell you what is going on with us and a little about my

daughter. Last month my daughter turned five years old. She was perfectly

fine. A few weeks ago she developed a bad cold that STILL has not gone away.

About this time she also had a problem with a bully at school who insisted

that they trade books at rest time every day. She told her no and the girl

got mad and made her cry. She was previously a little worried about this

girl because she pushed her on the first day of school. Yet, my daughter

still wants so badly to be her friend. About two weeks ago she started

asking me to check her hands for splinters. Not all the time, but maybe once

a day. That same week she had a hard time falling asleep at night because

she was worried about a project she had to do at school the next day where

she had to poke holes in a piece of paper with her name on it with what I am

assuming was a thumb tack or something. She was a fraid the tack would end

up on the carpet and she would stick her hand on it. She cried a little. We

talked about it and she went to sleep. The next morning she mentioned it

again. We talked about it one time and she went to school. She came home

that day with the project complete and said it went fine and she was happy

she did it. Also a different morning that week she asked me (in a very sad

way) " Mommy, has anyone ever said they hate you? " Turns out a boy came up to

her at recess and said that a girl hated her but she had no idea why. She

was really upset by this. I think the girl didn't like that my daughter was

playing with someone that was " her friend. " I told her that it was that

girls loss and not to let it bother her because some people are just hateful

and not everyone has to be our friend. That Friday my husband and I went

with her to the Zoo for a field trip. She was fine although a bit hyper and

I had a hard time getting her to listen to me. I had been ! having a hard

time with her listening to me lately though and I also attributed it to

being at the zoo and being excited. She was also still sick with a cold, but

it wasn't that bad at the time. Over the weekend her cold got a bit worse

with a nasty cough. I kept her home from school the next Monday, but sent

her back the next day. I learned from her teacher later that when she came

back she washed or sanitized her hands all day long. On Wednesday my husband

picked her up from school and we learned that she had a bad day and was

crying and missed her parents. She also told us that she was upset because

she stabbed herself in the hand with scissors. I didn't even see a mark

though. That night, I read to her and put her to bed as normal, but then she

called me back up and was crying because she said she didn't want to use

scissors anymore because they might poke her eye out. She was very concerned

with it, but she calmed down and went to sleep pretty fast. The next night

at bedtime, she was convinced that she had been bitten by a spider. She had

my husband check her whole body all over and the bed several times. It was a

30 minute process. I came up to relieve him and I spent the next 20 minutes

with her, reassuring her that there were no spiders in her room. We actually

do have an issue with brown recluse spiders in our home, but we have our

house treated, we rarely see one and she has NEVER been scared of them

before. Friday night we finally realized something was very wrong when she

couldn't concentrate on anything and kept asking us if various parts of her

body were okay. She would want us to look at her toes to see if they were

okay and ask again and again and again if they were. Then it was her arm,

elbow, knee, leg, head, face, EVERYTHING. She would barely touch something

like the table or door and say it hurt her. She couldnt stop. On Saturday my

husband took her to an Open House at the Fire Station that she wanted to go

to and she asked if she had been hit by a car as they were walking up. Then

she was c! onvinced that she had taken poison at one of the exhibits where

they discussed how some medicine looks like candy. She asked the woman there

repeatedly if she was sure. That was it, we took her to the clinic since her

doctors office was closed and they though maybe she was having a reaction to

the cold medicine she was being given. We discontinued and waited a couple

day but it just got worse and stranger. She asked if her arms were still

attached because she worried they may have been ripped off. (Found out last

night that she got that from the Greys Anatomy show I was watching a couple

of weeks ago that she just saw in passing. Then she wanted me to check her

pee-pee to see if it was hurt because she wanted to make sure she wasn't

hurt like a little boy who was raped by a teenager that she remembered

hearing on the news. (That was like 6 months ago.) It goes on and on and on.

Monday night we went to the Children's Hospital to find out what was going

on. They did blood tests, urine tests and a ct scan. They all came back

normal. The only thing they said was that she had some fluid in her ears and

her sinuses were really full. They called Psych who came and spoke with us

and she told us that my daughter seems to have OCD brought on by illness and

anxiety. She also had them do a strep test and we should have the results

from that tomorrow. She said it may clear up when she gets better or not go

away and improve we just don't know for sure. It feels like I lost my little

girl. She can't stop having these fears and worrying about everything and

she is just not herself. She is acting so strange and I don't know how to

handle it or where to go from here. Is it going to get better? Will she ever

be normal again? Last night was so hard. It took her 2 1/2 hours to go to

sleep and that was only when we all decided to go to bed and she slept with

us. She seems to understand that she is acting compulsive. She asks us what

is wrong with her and she will say, " How do I stop Mommy? I don't know how

to stop. " I reall! y need s ome advice or just some support. Thank you.

Crystal

[Guest guest]

I did want to say, since we have so many " kinds of OCD " here - from parents of

children with regular OCD, child with co-morbid diagnosis, such as asperger &

OCD, and children with PANDAS - that they are all stories that inspire sadness

when I read them - but that they all also have opportunities for great hope

though medication and therapy. I am so inspired by the stories of Stormy &

& Colleen & others- stories with such respect and courage. No matter what

your child's " start " , there can be a hopeful ending, especially in this day and

age, when we finally have access to proven therapy in ERP.

Just don't forget to check the medical side with a sudden onset - it can really

help your child.

All my best - in NC

[Guest guest]

Crystal,

Not much else to add, but wanted to give you a hug and let you know you

aren't alone.

Shaw

[Guest guest]

Lord do I feel for you. My little girl has had episodes like this periodically

since she was 4. She is now almost 8 and when recently she started hand washing

we thought of ocd. We are waiting to see a pediatrician and a psychologist. No

one here on P.E.I. seems to specialize in treating ocd. My family Doctor said

she is normal....but I know my child. The pediatrician sent us forms to fill out

and they were for adhd. I'm betting it will be a battle with the Doctors to take

me seriously. Her symptoms come and go....usually around a cold. It is

frightening. She gets voices in her head telling her to do bad things. She

worries about accidents...like being hit by a car. She won't leave my side. She

cries when she is not with me. She gets scared of her teachers. She worries

about doing something bad that will get her punished.She washes her hands only

at school. She has strong temper flares with me. She thinks swear words in her

mind and thinks she will get into trouble. She says the voice in her head tells

her to just die...that she is no good. She checks with me continually to be sure

she is not in trouble. Worry worry worry.Then suddenly...it will all disappear.

She returns to her old playful funny self. She is normally outgoing and

hilarious. I wait for it to return...praying it won't. We are in limbo right now

waiting for help. When her symptoms go away I wonder if I'm the crazy one....but

when we are in the thick of these obsessions I am convinced there is something

terribly wrong.

[Guest guest]

I'm so sorry this OCD has taken over your daughter too. I can totally relate to

you in that feeling you have. My daugther has had her OCD for a while and we

just had a Mother/daughter family therapy session in which I realized that I've

felt that way ever since her OCD became in the forefront in 2005-2006 time

frame. I just feel like my sweet girl has been overshadowed by all the

irrational thoughts of this horrible OCD. I almost lost hope for her for a

while. I hope it helps you to know that just the very fact that you are

learning about it and taking it on is really what's going to get her back

sooner. I took a very long time to really even understand that this OCD is REAL

and it's not going to go away unless we really fight back. I just wanted to

write in response to you because I feel that huge difference between the kid she

was before OCD and the kid she is now is so drastic. It's something that I've

heard parents of children with Autism have described. In some ways the OCD is

similar, I think. My daughter had so much happiness and enjoyed life before the

OCD and after the OCD crept in her world became so scary no matter what we did

or did not do. She is doing much better now with medication, but we still have

to find the ERP therapist. You are at the very beginning stages and so trust me

in that, it will get better! It's very difficult right now to hear some of the

things your daughter is experiencing, I know. I have had many many nights of

sadness and reading for hours to try to get some relief for myself and

de-stress. I never did allow myself to get away and take breaks, until recently

when the wear and tear on me got me physically. I have to say that you will

have much more tolerance and positive outlook if you do get someone to take over

on a regular basis for your family's sake. I now spend a day each week alone

with her and do things she enjoys and an evening once a week either on a date

with my husband or doing something with my friends. Also, I think of the OCD as

separate from my daughter. I used to think, my daughter has OCD and somewhere I

read or heard that it's better for the child to think of the OCD as not them.

Maybe someone else can better explain that, but it does help us. She fights off

the thoughts better with that outlook. Please keep us posted on your progress.

I hope that you and your daughter get relief and things get better soon!

-Colleen (I have a daughter, 14 yrs.)