Re: New here...absolutely devastated - PANDAS

[Guest guest]

Oh, my dear - I am so very sorry. This post brought tears to my eyes, as I

remember all too well the day that this happened in our house as well, and how

frantic we were to find a reason or some logic in what was stealing our child

from us in a day. This is very normal for a PANDAS parent to be able to tell

you the day that their child changed - it is a dramatic and frightening thing.

OCD is terrifying in any version - no matter how it happens.

So, they are testing for strep, because they are looking for PANDAS (pediatric

autoimmune neuropsyciatric disorders associated with strep). However, if your

test comes back negative (did you do the 72 hour?), you can still have PANDAS,

but you will need to diagnosis clinically with an expert. I am sad to tell you

that there are few in the country, but if you need one, please feel free to

email you and I will send you our file of information.

The first line of defense is anti-biotics. There are other treatments, but I

would suggest starting there - -personally, I would ask for a 10 day trial of

Azithromyacin. This is twice the normal time frame, so you may need studies to

back you up. You can go to

http://www.latitudes.org/forums/index.php?showforum=17 and post for more

information, or read the pinned thread, helpful information for PANDAS. You can

also go to http://www.pandasnetwork.org/index.html for a lot of information.

It is important that you also begin to consider ERP therapy for your daughter.

She may have more than one episode of this, and having a foundation in ERP

(Exposure and Ritual Prevention) will give her the answers to " how do I help

myself " that she is already asking. On the positive side, I think a PANDAS

child is very motivated internally to do the work, as they are not used to

" thinking in an OCD way " .

Please know, in my parental opinion, that children do not develop severe OCD

overnight, due to a few small issues at school. That is most likely

coincidence. There is always something going on in your childs life - don't be

swayed by anyone that tells you otherwise. This is way too dramatic for that.

Write down everything about what you child was like 2 weeks ago. Ask teachers

to write you a note, friends. Start building a file about this, as many docs

will only see her as she is today and not understand the dramatic sudden

transformation that you are describing.

Please email me if you need more information.

in NC.

>

>

> >

> > 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,

I'm so sorry to hear of your daughter's problems. Know that we have all

been down your path. My daughter, who is 11, was diagnosed with OCD last

summer. I was terrified when she stayed up until 2 or 3 in the morning,

worrying about this toxin or that. She had a lot of bad thoughts and

rituals associated with them. I felt that we had lost our daughter. My

husband said that it seemed as if aliens had kidnapped our daughter and

returned another one who looked just like her, but behaved very differently.

I want to tell you that there is hope. First of all, our doctor recommended

melatonin to help her go to sleep. Then we started working with a therapist

who specializes in pediatric anxiety disorders and uses cognitive behavior

therapy and exposure and response prevention. She has really helped my

daughter. If I felt it was necessary, I would look at inositol or

medication. There is no shame is doing what is necessary to help your

child. There are a lot of books out there, including some for children.

Just go to Amazon and search for " children " and " OCD " and you will get quite

a list.

BTW, my daughter first exhibited symptoms at 5. We had one episode when she

stayed up really late worrying that she had had some coffee from an empty

coffee can her teacher had used for an art project (we're LDS so we don't

drink coffee, but I certainly never demonized it in any way). Anyhow, that

went away and then we just classified my daughter as " a worrier " until we

had our next full blown OCD episode this summer.

I would like to second what said. Therapy is invaluable. Cognitive

behavior therapy (CBT) and exposure and response prevention (ERP) will help

you daughter to help herself. Like you, I have spent hours and hours

reassuring my daughter, showing her books, Internet references, household

cleaner labels, etc. etc. It may make her feel better in the short term,

but in the long term it is better if she has the tools to face her own fears

and realize that they're not very realistic. So I recommend that you call

your pediatrician and local children's hospital to get the names of a few

therapists who specialize in CBT and ERP. As far as I know, these are the

most effective therapies for our kids.

Best of luck and know that there is light at the end of the tunnel!

>

>

> Oh, my dear - I am so very sorry. This post brought tears to my eyes, as I

> remember all too well the day that this happened in our house as well, and

> how frantic we were to find a reason or some logic in what was stealing our

> child from us in a day. This is very normal for a PANDAS parent to be able

> to tell you the day that their child changed - it is a dramatic and

> frightening thing. OCD is terrifying in any version - no matter how it

> happens.

>

> So, they are testing for strep, because they are looking for PANDAS

> (pediatric autoimmune neuropsyciatric disorders associated with strep).

> However, if your test comes back negative (did you do the 72 hour?), you can

> still have PANDAS, but you will need to diagnosis clinically with an expert.

> I am sad to tell you that there are few in the country, but if you need one,

> please feel free to email you and I will send you our file of information.

>

> The first line of defense is anti-biotics. There are other treatments, but

> I would suggest starting there - -personally, I would ask for a 10 day trial

> of Azithromyacin. This is twice the normal time frame, so you may need

> studies to back you up. You can go to

> http://www.latitudes.org/forums/index.php?showforum=17 and post for more

> information, or read the pinned thread, helpful information for PANDAS. You

> can also go to http://www.pandasnetwork.org/index.html for a lot of

> information.

>

> It is important that you also begin to consider ERP therapy for your

> daughter. She may have more than one episode of this, and having a

> foundation in ERP (Exposure and Ritual Prevention) will give her the answers

> to " how do I help myself " that she is already asking. On the positive side,

> I think a PANDAS child is very motivated internally to do the work, as they

> are not used to " thinking in an OCD way " .

>

> Please know, in my parental opinion, that children do not develop severe

> OCD overnight, due to a few small issues at school. That is most likely

> coincidence. There is always something going on in your childs life - don't

> be swayed by anyone that tells you otherwise. This is way too dramatic for

> that. Write down everything about what you child was like 2 weeks ago. Ask

> teachers to write you a note, friends. Start building a file about this, as

> many docs will only see her as she is today and not understand the dramatic

> sudden transformation that you are describing.

>

> Please email me if you need more information.

>

> in NC.

> >

> >

> > >

> > > Subject: New here...absolutely devastated

> > > To: <%40yahoogroups.com>

> > > 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

> > > .

> > >