Re: Hello

[Guest guest]

Hi

thanks for the welcome

G

----------

To: medical_translationegroups

Subject: Hello

Date: Domingo, 6 de Fevereiro de 2000 14:16

Best of luck to the group.

Tim Mc Fee

Technical Translator Spa-Eng ( Special interest in medical devices)

------------------------------------------------------------------------

Body Paint, Chocolates, & Roses Oh My!

http://click./1/1151/2/_/98296/_/949864652/

-- Create a poll/survey for your group!

-- /vote?listname=medical_translation & m=1

[Guest guest]

I know I'm totally overwhelmed. Hope was diagnosed almost 2 weeks ago and

just doing a lot of reading on options, making phone calls to talk to her

current doctors, finding her another doctor who treats autism, making the

lists of things she can and can't have on the GFCF diet, finding local

health food stores and seeing what they carry, going through the pantry with

the label maker marking what she can have, and making a list of basic rules

and putting them on the fridge......no wonder I'm going out of my mind.

and with all that I still have to do laundry, dishes, housework, supervise

the kids, deal with Faith's therapists coming to the house, make sure both

girls get their meds on time, get to all the doctor appointments that the 3

of us have scheduled, and once the kids are in bed I'm working on a home

business. No wonder my therapist says I need help.

Hope is high function, and we've been dealing with her speech delay since

she was 18 months old. Both of the girls are my miracle babies. I was told I

couldnt have children at all, and these two came along naturally. There are

times my husband comes home from work at midnight and looks at the kitchen,

which is a total disaster. Once he asked me exactly what did I do all day.

I told him I had important stuff I had to do, so the kitchen had to wait.

What was so important? I took the bottom rail off of my quilt frame,

attached a blanket across the top, and the girls and I sat under the " tent "

with sleeping bags and popcorn watching movies. He just grinned and asked

if they had fun, which they did. That's all that matters.

Toni W. - BP mom to

Hope, 4, Seizure disorder, Verbal apraxia, Migraines, Austim

and

Faith, 2, Mild CP, Hypotonia, Asthma, Sensory Integration Dysfunction

Sponsor Hope for the NAAR walk on June 6th

http://www.justgiving.com/PFP/hope

Hello

Hello everyone. I am enjoying the information that has been going

out here recently. Sometimes when you have an Autistic child, so

many people don't understand what all we have to deal with. I love

my daughter and she has taught me so much about life in general.

She is low function, but her smile lights up the room. I find at

times with all the research and the fact that the numbers are going

up, that people are now starting to think that this is something

that is being labeled needlessly. I have started on the CF diet and

see some changes that are encouraging. I plan on implementing it for

awhile before I start the GF. It all seems so overwhelming

sometimes. It is constant dedication to every aspect of their lives.

Do any of you seem overwhelmed? Are there times when you ask, is

all this really necessary? I don't mean the teaching methods and

close supervision, I mean the supplements and diets. Sometimes I

start reading the information and think is all this possible, and is

it really helping that much. There is so much out there to research

and so many conflicting opinions. And it seems that everything is so

expensive. You all are a great bunch of ladies and your post are

very informative, just wondering how you find what will work with

your child.

Nina

Autism_in_Girls-subscribe

------------------------

Autism_in_Girls-unsubscribe

[Guest guest]

Hello!

My name is Reigna pronounced Ray-na. I am 26 year old female with Asperger's

Syndrome. I would love to share my past experiences, with AS. I am so lucky to

be apart of this group. I wasn't sure at first, if I would be able to stay,

but I am glad you all allowed me too.

Thanks for allowing me your time.

Reigna pronounced Ray-na

[Guest guest]

Hello Reigna and welcome to the group!!

Re: Hello

> Hello!

> My name is Reigna pronounced Ray-na. I am 26 year old female with

Asperger's

> Syndrome. I would love to share my past experiences, with AS. I am so

lucky to

> be apart of this group. I wasn't sure at first, if I would be able to

stay,

> but I am glad you all allowed me too.

> Thanks for allowing me your time.

> Reigna pronounced Ray-na

>

>

>

[Guest guest]

welcome reigna, I to like this list much so but it has been less chatty as

it use to be but more quiet and calm.

I to know of you from other lists I to be on.

Sondra

[Guest guest]

Hi Reigna and Lorna

Welcome to this list!!

Tracey

Re: Hello

Hello!

My name is Reigna pronounced Ray-na. I am 26 year old female with Asperger's

Syndrome. I would love to share my past experiences, with AS. I am so lucky to

be apart of this group. I wasn't sure at first, if I would be able to stay,

but I am glad you all allowed me too.

Thanks for allowing me your time.

Reigna pronounced Ray-na

[Guest guest]

Hi Debbie,

I can tell you true, brain fog is real and a terrible thing,

we really can and do go through this with Hep C.

It seems before treatment, on treatment and even after treatment.

Have to be consistent with Supplements and they do take time..

Trying again to send the pictures directly to your e-mail.

Many prayers for you, too, hon.

Sheena

My prayers added to everyones. Jackie -been working on that project I talked to you about. Still need to work on that messaging thing and get back to you. Sheena -I don't get pictures for some reason and am still looking for your cute little babies. I've started on some of those supplements too but I use that brain fog excuse way too often to tell anyone I'm improving. thoughts and prayers to the guys. With all our practice we should be able to get together and move the world.Debbie

[Guest guest]

Welcome to this group, Sonja! I've only been on a few weeks, but already have

gotten some great support and advice! I have a 14-year old daughter with OCD.

Debbie

____________________________________________________________

Beauty School Programs - Get the career you've always wanted. Click Now.

http://thirdpartyoffers.netzero.net/TGL2241/fc/Ioyw6i4vHBNaznKrTGfWL8eRsBwtrDS0U\

X77HbWF81TEg7b4FoTLpn/

[Guest guest]

Welcome Sonija. Glad you are here. It is hard to go through the

trials of OCD, without others to talk to about it. It helps so much

to find someone who understands and has been there. This is a great

group and I think you will find many here you can relate to.

Is your son on antibiotics for the PANDAS? Have you noticed any

improvement?

We suspected PANDAS with our son, because he had strep that seemed

incurable when he was young (he is now 16). But the titer test showed

differently. He's gone through times where he has been completely

disabled by his OCD and GAD. But, he has been seeing a therapist who

uses CBT and ERP, and is also on an SSRI, and is functioning well, for

now.

Glad you found us.

BJ

>

> Just wanted to say hello to everyone. I am Sonija and my son Robbie

> is 7. I joined this group for myself, my husband and Robbie as he

> doesnt read or write well yet. He is in first grade. He was

> recently diagnosed with PANDAS.

> below is a brief discription of PANDAS

>

> PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric

> Disorders Associated with Streptococcal Infections. The term is used

> to describe a subset of children who have Obsessive Compulsive

> Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and

> in whom symptoms worsen following strep. infections such as " Strep

> throat " and Scarlet Fever.

>

> The children usually have dramatic, " overnight " onset of symptoms,

> including motor or vocal tics, obsessions, and/or compulsions. In

> addition to these symptoms, children may also become moody, irritable

> or show concerns about separating from parents or loved ones. This

> abrupt onset is generally preceeded by a Strep. throat infection.

>

> His symptoms started Aug 4th. It is nearly impossible to find

> support groups for kids his age with OCD. He has OCD and ADHD now

> since he got sick with Strep in July. I am glad that we found this

> group and we look forward to being able to tak with others that are

> going thru the same thing. SO far I have not had much luck for

> support, cant find local groups:( So I have been going thru all of

> this blind so to speak. Many times feeling helpless and all alone as

> my husband works ful time to keep us afloat. I have been unable to

> work as Robbie has been a handful and we are at the all childrens

> hospital 3 times a week.

>

> Thanks

> Sonija

>

[Guest guest]

Thanks so much for the warm welcome. Things have been crazy here to say the

least so I am hoping to find some guidence or at least people going thru the

same. Somehow it eases the stress. He has good days and bad days but either way

it kills me to see him with so much depression and anxiety at such a young age.

Sonija

Re: hello

Welcome to this group, Sonja! I've only been on a few weeks, but already have

gotten some great support and advice! I have a 14-year old daughter with OCD.

Debbie

__________________________________________________________

Beauty School Programs - Get the career you've always wanted. Click Now.

http://thirdpartyoffers.netzero.net/TGL2241/fc/Ioyw6i4vHBNaznKrTGfWL8eRsBwtrDS0U\

X77HbWF81TEg7b4FoTLpn/

[Guest guest]

Hi BJ, Yes he was on antibiotics for nearly 28 days and there was definatley

marked signs of improvment. he is doing the cbt as well and they are holding

off on meds til they see how much of the PANDAS goes away. They said he will

always have the ADHD. We are just starting to get the school involved. I got

him on a 504 at school so that is helping. They are talking about prozac for

him and said that might help with both the ADHD and the OCD. Is it common for

the OCD to get worse when he gets stressed or is around loud noisy places? He

has good days where all I see is a super hyper kid and then there are bad days

when I can barely get him up and dressed let alone to school without them having

to peel him off of me.

Thanks for the warm welcome. I have bene beside myself this last month and have

had no outside support till I got him to see Dr. and Dr.

Storch. She is one of the top 3 PANDAS specialists in the world and Dr. Storch

is said to be a world renound Psychiatrist for PANDAS, OCD, ADHD etc... I guess

I was lucky as they just moved here in over the summer.

Thanks for listening

this is much appreciated

Sonija

Re: hello

Welcome Sonija. Glad you are here. It is hard to go through the

trials of OCD, without others to talk to about it. It helps so much

to find someone who understands and has been there. This is a great

group and I think you will find many here you can relate to.

Is your son on antibiotics for the PANDAS? Have you noticed any

improvement?

We suspected PANDAS with our son, because he had strep that seemed

incurable when he was young (he is now 16). But the titer test showed

differently. He's gone through times where he has been completely

disabled by his OCD and GAD. But, he has been seeing a therapist who

uses CBT and ERP, and is also on an SSRI, and is functioning well, for

now.

Glad you found us.

BJ

>

> Just wanted to say hello to everyone. I am Sonija and my son Robbie

> is 7. I joined this group for myself, my husband and Robbie as he

> doesnt read or write well yet. He is in first grade. He was

> recently diagnosed with PANDAS.

> below is a brief discription of PANDAS

>

> PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric

> Disorders Associated with Streptococcal Infections. The term is used

> to describe a subset of children who have Obsessive Compulsive

> Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and

> in whom symptoms worsen following strep. infections such as " Strep

> throat " and Scarlet Fever.

>

> The children usually have dramatic, " overnight " onset of symptoms,

> including motor or vocal tics, obsessions, and/or compulsions. In

> addition to these symptoms, children may also become moody, irritable

> or show concerns about separating from parents or loved ones. This

> abrupt onset is generally preceeded by a Strep. throat infection.

>

> His symptoms started Aug 4th. It is nearly impossible to find

> support groups for kids his age with OCD. He has OCD and ADHD now

> since he got sick with Strep in July. I am glad that we found this

> group and we look forward to being able to tak with others that are

> going thru the same thing. SO far I have not had much luck for

> support, cant find local groups:( So I have been going thru all of

> this blind so to speak. Many times feeling helpless and all alone as

> my husband works ful time to keep us afloat. I have been unable to

> work as Robbie has been a handful and we are at the all childrens

> hospital 3 times a week.

>

> Thanks

> Sonija

>

[Guest guest]

If you haven't already read some of these books. . I would highly

recommend them. They helped me to understand what our son was going

through so much more. And also to understand what the correct therapy

needed, entailed.

*****************

What to do when your Child has Obsessive-Compulsive Disorder by Aureen

Pinto Wagner Ph.D.

Freeing Your Child from Obsessive-Compulsive Disorder by Tamar E. Chansky

Helping Your Child With Ocd: A Workbook for Parents of Children With

Obsessive-Compulsive Disorder by Lee Fitzgibbons and Cherry Pedrick

Talking Back to OCD by March

The last two are workbooks that walk you through CBT and ERP, which is

the only therapy proven to help OCD.

*******************

It is very tough to watch your child suffer so much. Our son got

depressed, from struggling to cope with the OCD and GAD thoughts.

Once they were under control, the depression lifted.

For some, loud noises bother them. My husband is one. It is not

uncommon for those who have OCD to be sensitive to sounds and how

things feel. There's actually a term/label for it, but I can't recall

it right now. lol Sorry, brain is mush sometimes. Our son has always

had issues with clothing, socks, shoes, etc. They had to feel right,

or he would melt down, unable to tolerate them.

There are many things that can set OCD off. Little blips in their

lives, that upset the balance, always carry the potential to stir

things up. An illness (even a minor cold), not getting enough rest,

or a change in their lives or the the family. Going to school, is a

common thing that can get things stirred up.

I'm not familiar with the docs you mentioned. You said they are using

CBT, does his therapy also include ERP (exposure and response

prevention)? ERP is so very important to their getting better and

learning how to fight the OCD.

Does the psychiatrist also do the therapy? I know there are some who

do, but it seems they usually only prescribe meds, then refer out to a

therapist. Are you seeing results with the therapy? How long has he

been doing therapy?

Sorry, don't mean to sound like the Inquisition. lol Just curious,

and hoping to help by sharing our experiences.

If you haven't been to the OCFoundation.org, it has a lot of great

information too, including lists of therapists in state by state

areas. . .Just in case you ever have need of it.

Are you still ending up at the Children's hospital 3 times a week?

I also have a hubby that works full time + overtime to make ends meet.

I have health issues, then our son has always been a handful, due to

his OCD, so I've always handled it on my own too. On top of that, we

homeschooled. OCD can be very stressful and isolating. Many " think "

they know what it is, but the reality can be so much worse.

So glad you are here, Sonija.

BJ

> >

> > Just wanted to say hello to everyone. I am Sonija and my son Robbie

> > is 7. I joined this group for myself, my husband and Robbie as he

> > doesnt read or write well yet. He is in first grade. He was

> > recently diagnosed with PANDAS.

> > below is a brief discription of PANDAS

> >

> > PANDAS, is an abbreviation for Pediatric Autoimmune

Neuropsychiatric

> > Disorders Associated with Streptococcal Infections. The term is

used

> > to describe a subset of children who have Obsessive Compulsive

> > Disorder (OCD) and/or tic disorders such as Tourette's Syndrome,

and

> > in whom symptoms worsen following strep. infections such as " Strep

> > throat " and Scarlet Fever.

> >

> > The children usually have dramatic, " overnight " onset of symptoms,

> > including motor or vocal tics, obsessions, and/or compulsions. In

> > addition to these symptoms, children may also become moody,

irritable

> > or show concerns about separating from parents or loved ones. This

> > abrupt onset is generally preceeded by a Strep. throat infection.

> >

> > His symptoms started Aug 4th. It is nearly impossible to find

> > support groups for kids his age with OCD. He has OCD and ADHD now

> > since he got sick with Strep in July. I am glad that we found this

> > group and we look forward to being able to tak with others that are

> > going thru the same thing. SO far I have not had much luck for

> > support, cant find local groups:( So I have been going thru all of

> > this blind so to speak. Many times feeling helpless and all

alone as

> > my husband works ful time to keep us afloat. I have been unable to

> > work as Robbie has been a handful and we are at the all childrens

> > hospital 3 times a week.

> >

> > Thanks

> > Sonija

> >

>

>

>

>

>

>

[Guest guest]

Hi again BJ:)

You didnt sound like an inquistion lol. Lets see if I can answer the questions.

First, the All Childrens hospital has a building of specialists seperate from

the hosptial so he sees the doctors there. One day for speech, one day for the

CBT and ERP (yes we are doing that as well) and one to see Dr. .

She is great with him as are the other specialists he sees. They are very

interested in him due to the PANDAS and that I caught it with the first

outbreak. So they are diligent with his treatment.

I have the book Talking Back to OCD and that has helped immensely! The doc

suggested it but I had already grabbed it from the library. The methods in the

book are what they do for him and I have seen a huge difference since he tarted

therapy. They are not doing any meds yet as it can make the PANDAS stuff worse.

He has so much goingon in his head that they wanted to get some of the symptoms

calmed down before they used meds.

Today he is having a hard time staying focused on anything, which can be trying

some times when it comes to him eating and functioning. His mind is racing so

much he looks like he got into some type of speed drugs.

I was thinking of home schooling but for now the doc wants to keep him in school

and try to work around it. They are afraid that he will change his rituals and

become afraid to go out. I hate that each day they have to literally peel him

off of me. My heart breaks each day a little more.

I find it so hard sometimes to keep it together when he is having a hard day,

but if I get upset he falls apart even more.

I really think that this site will help a great deal. I am at least in the

right direction now for treatment and getting some support from places such as

here.

Do u see your son as being easily angred (spelling bad)

Sonija

Re: hello

If you haven't already read some of these books. . I would highly

recommend them. They helped me to understand what our son was going

through so much more. And also to understand what the correct therapy

needed, entailed.

*****************

What to do when your Child has Obsessive-Compulsive Disorder by Aureen

Pinto Wagner Ph.D.

Freeing Your Child from Obsessive-Compulsive Disorder by Tamar E. Chansky

Helping Your Child With Ocd: A Workbook for Parents of Children With

Obsessive-Compulsive Disorder by Lee Fitzgibbons and Cherry Pedrick

Talking Back to OCD by March

The last two are workbooks that walk you through CBT and ERP, which is

the only therapy proven to help OCD.

*******************

It is very tough to watch your child suffer so much. Our son got

depressed, from struggling to cope with the OCD and GAD thoughts.

Once they were under control, the depression lifted.

For some, loud noises bother them. My husband is one. It is not

uncommon for those who have OCD to be sensitive to sounds and how

things feel. There's actually a term/label for it, but I can't recall

it right now. lol Sorry, brain is mush sometimes. Our son has always

had issues with clothing, socks, shoes, etc. They had to feel right,

or he would melt down, unable to tolerate them.

There are many things that can set OCD off. Little blips in their

lives, that upset the balance, always carry the potential to stir

things up. An illness (even a minor cold), not getting enough rest,

or a change in their lives or the the family. Going to school, is a

common thing that can get things stirred up.

I'm not familiar with the docs you mentioned. You said they are using

CBT, does his therapy also include ERP (exposure and response

prevention)? ERP is so very important to their getting better and

learning how to fight the OCD.

Does the psychiatrist also do the therapy? I know there are some who

do, but it seems they usually only prescribe meds, then refer out to a

therapist. Are you seeing results with the therapy? How long has he

been doing therapy?

Sorry, don't mean to sound like the Inquisition. lol Just curious,

and hoping to help by sharing our experiences.

If you haven't been to the OCFoundation.org, it has a lot of great

information too, including lists of therapists in state by state

areas. . .Just in case you ever have need of it.

Are you still ending up at the Children's hospital 3 times a week?

I also have a hubby that works full time + overtime to make ends meet.

I have health issues, then our son has always been a handful, due to

his OCD, so I've always handled it on my own too. On top of that, we

homeschooled. OCD can be very stressful and isolating. Many " think "

they know what it is, but the reality can be so much worse.

So glad you are here, Sonija.

BJ

> >

> > Just wanted to say hello to everyone. I am Sonija and my son Robbie

> > is 7. I joined this group for myself, my husband and Robbie as he

> > doesnt read or write well yet. He is in first grade. He was

> > recently diagnosed with PANDAS.

> > below is a brief discription of PANDAS

> >

> > PANDAS, is an abbreviation for Pediatric Autoimmune

Neuropsychiatric

> > Disorders Associated with Streptococcal Infections. The term is

used

> > to describe a subset of children who have Obsessive Compulsive

> > Disorder (OCD) and/or tic disorders such as Tourette's Syndrome,

and

> > in whom symptoms worsen following strep. infections such as " Strep

> > throat " and Scarlet Fever.

> >

> > The children usually have dramatic, " overnight " onset of symptoms,

> > including motor or vocal tics, obsessions, and/or compulsions. In

> > addition to these symptoms, children may also become moody,

irritable

> > or show concerns about separating from parents or loved ones. This

> > abrupt onset is generally preceeded by a Strep. throat infection.

> >

> > His symptoms started Aug 4th. It is nearly impossible to find

> > support groups for kids his age with OCD. He has OCD and ADHD now

> > since he got sick with Strep in July. I am glad that we found this

> > group and we look forward to being able to tak with others that are

> > going thru the same thing. SO far I have not had much luck for

> > support, cant find local groups:( So I have been going thru all of

> > this blind so to speak. Many times feeling helpless and all

alone as

> > my husband works ful time to keep us afloat. I have been unable to

> > work as Robbie has been a handful and we are at the all childrens

> > hospital 3 times a week.

> >

> > Thanks

> > Sonija

> >

>

>

>

>

>

>

[Guest guest]

Hi Sonija, welcome!! I read some of the replies and your posts.

Well you certainly lucked out on getting him in the best treatment!!

And with CBT/ERP too. (that can be really hard to find sometimes)

I'm sure it's been a rough couple of months.

My OCD son is now 19. He had just started 6th grade, wasn't 12 yet

when his OCD began. I wondered about PANDAS for him too (seemed so

sudden to start) but never got it tied to that. I know 's OCD

seemed soooo much more intense the first months (not that it wasn't

bad a few months later too) as it was changing so much it seemed

like. I mean some compulsions he had stayed but some just stopped

and something new would pop up. Seemed to settle down later.

had a lot of rituals/compulsions he was doing. A lot

involved touching (certain ways and/or until a " just right " feeling),

some things he repeated, some things were just a " need to do " and by

that it might mean something on TV. And he also had a feeling he had

to do these things or something bad would happen to him.

It also affected him at school and we also got a 504 Plan for him.

That was VERY helpful for him/us. Couldn't find a therapist in our

little rural type county though.

I can't recall what you wrote, but does the ADHD seem any worse since

OCD started? What type OC behaviors is your son having, is it more

thoughts or compulsions or...?

There has been lots written here on PANDAS, you might find it

interesting to look back and search through the archives for PANDAS

and see what turns up. Some have done the antibiotics, some have

gone with medication....

I'm glad you found this group, it has been my best support through

the years. A great place to vent on bad days, share how kids are

doing, ask for suggestions, thoughts and just read and know you're

not alone!

>

> Just wanted to say hello to everyone. I am Sonija and my son

Robbie

> is 7. I joined this group for myself, my husband and Robbie as he

> doesnt read or write well yet. He is in first grade. He was

> recently diagnosed with PANDAS.

> below is a brief discription of PANDAS

>

> PANDAS, is an abbreviation for Pediatric Autoimmune

[Guest guest]

Hey Chris!

We are in Florida, I see your in NC. I do consider us lucky to have the doctors

we have. I moved fast and was diligent with every doc I saw about what I

thought it was. We saw 5 doctors in less then a week and a half.

As far as I knew, I was his only ritual. he comes to me for reassurance on

every thought he has. He has thoughts of hurting others, worries about saying

bad words, was obsessed with germs and the middle toe and middle finger.

some of that stuff has calmed down but it seems like he is a different kid each

day. Each day brings something new. I just found out that he does some rituals

at school when Iam not there for him. The therapy we are doing is puling me

away from him and making him face his fears so he isnt doing the questions so

much but he tells me he stil hs questions.

He taps on stuff at school and makes humming noises. He also told me he likes

to blink the thoughts away.

The first few weeks with this was so trying and I felt I was at my wits end. I

am finally feeling a little relief but I find that I get sad and cry alot after

he goes to school (espceially when he has a bad day)

I guess I got to get it out so I dont let it all build up. I try to alway look

strong for him so he dont get worried. He deal so much better if I act like

everything is no big deal. Hard thing to do sometimes though.

All of his symptoms started on August 4th. He went to bed being his usual self

then got up completely different. Thankfully I worked in a psych hospital for

years so I knew what his syptoms were. Its all been challenging.

How is our son handleing his OCD now? How did he do throughout school? I am

glad we got the 504. They are real supportive so taht helps.

I am also online on yahoo messenger if anyone want to drop me a line on there

sometimes. I work from home ( I am a writer) dont laugh at my spelling on

here.lol I am not paying much attention to my spelling

sonij - yahoo messenger name

soni87@... is my name on msn

Thanks

Sonija

Re: hello

Hi Sonija, welcome!! I read some of the replies and your posts.

Well you certainly lucked out on getting him in the best treatment!!

And with CBT/ERP too. (that can be really hard to find sometimes)

I'm sure it's been a rough couple of months.

My OCD son is now 19. He had just started 6th grade, wasn't 12 yet

when his OCD began. I wondered about PANDAS for him too (seemed so

sudden to start) but never got it tied to that. I know 's OCD

seemed soooo much more intense the first months (not that it wasn't

bad a few months later too) as it was changing so much it seemed

like. I mean some compulsions he had stayed but some just stopped

and something new would pop up. Seemed to settle down later.

had a lot of rituals/compulsions he was doing. A lot

involved touching (certain ways and/or until a " just right " feeling),

some things he repeated, some things were just a " need to do " and by

that it might mean something on TV. And he also had a feeling he had

to do these things or something bad would happen to him.

It also affected him at school and we also got a 504 Plan for him.

That was VERY helpful for him/us. Couldn't find a therapist in our

little rural type county though.

I can't recall what you wrote, but does the ADHD seem any worse since

OCD started? What type OC behaviors is your son having, is it more

thoughts or compulsions or...?

There has been lots written here on PANDAS, you might find it

interesting to look back and search through the archives for PANDAS

and see what turns up. Some have done the antibiotics, some have

gone with medication....

I'm glad you found this group, it has been my best support through

the years. A great place to vent on bad days, share how kids are

doing, ask for suggestions, thoughts and just read and know you're

not alone!

>

> Just wanted to say hello to everyone. I am Sonija and my son

Robbie

> is 7. I joined this group for myself, my husband and Robbie as he

> doesnt read or write well yet. He is in first grade. He was

> recently diagnosed with PANDAS.

> below is a brief discription of PANDAS

>

> PANDAS, is an abbreviation for Pediatric Autoimmune

[Guest guest]

I really liked the book by March too.

is right, Sonija. You are so incredibly lucky to have found

such great competent help, so quickly. It can be hard, since there

are so few who really understand it. I'm glad for you.

I'm assuming the racing thoughts are the ADHD? It's so hard when you

are dealing with more than one diagnosis. Although, when the OCD has

been really bad for our son at times, he would put his head down

(while doing schoolwork) and say he couldn't concentrate. Although,

he had " intrusive thoughts " too. Does your son also deal with those?

It is tough, when they are struggling. When we pulled our son out of

school, I didn't even know it was OCD he was dealing with. I just

knew neither of us could take it anymore. The final straw was he

raced out the door of our house, screaming he couldn't go back to that

school, crying and losing it. He was 7. I scooped him up, took him

into the house, rocked him until he calmed down, then told him he

never had to go there again. There were teacher issues too. . Sort of

complicated, and I won't bore you with the details, but she was

definitely making things worse. .Even ignoring doctor's instructions.

For us, homeschooling worked. Our son didn't become isolated and he

didn't retreat from life. But, I realize it's not for everyone. I

will say, I never found a doctor/therapist that thought it was a good

idea. But, for us, it worked better than we ever expected. That's

why we are still doing it, partially, for our 10th year. Our son

started taking classes at a vocational high school this year too, and

loves it. It didn't cause us any problems. It made life easier. And

because our son was such a brainiac, he was able to work ahead and

stay challenged.

It's not uncommon for kids with anxiety to be a little on the immature

side. I found with our son, if we sometimes backed off and gave him

time to work things out, he did. He always ended up doing things

later than most kids his age. . Anyway, anything that was a bit

challenging, like riding a bike, or learning to swim. He always had a

bit of fear involved that would hold him back. Pushing him, made his

fear grow and he would melt down. Giving him space would give him the

opportunity to confront it and move forward at the level of anxiety he

felt he could cope with. So, I learned to coach, instead of push.

Josh would do the same (fall apart if he thought I was), so I hid a

lot of my anxiety and worries (about him) from him. I turned into a

pretty good actress. lol Of course, for a long time I didn't know it

was OCD we were dealing with. I just knew something wasn't right. He

still (at 16) does better if I stay calm, positive, and assertive

though. I think they need to know someone knows what is going on, and

it's going to be okay. You need to make sure to try to find time to

take care of you too. I know it's hard, but it's so important. Even

if it's a few extra minutes in the shower to just breath. It can be

hard when you feel like a single (married) parent, I know. (((hugs)))

Yes, our son used to get really angry at times. I'm sure it was

frustration on his part. When OCD demanded things be a certain way,

and they weren't, he would get frustrated, then angry. Or if he was

anxious about something and felt cornered, he would sometimes strike

out. He got better over the years. I think partly due to maturity

and just learning how to deal with it better.

Is your son showing anger? Do you think it is OCD or ADHD related?

Or both? Do you see a direct connection to him struggling with

something and the anger? If he's doing ERP, he could be getting

frustrated with that. I know Josh would literally groan out loud at

times, while fighting his OCD when using ERP.

Okay, I will end this novel now. lol :oD

BJ

> > >

> > > Just wanted to say hello to everyone. I am Sonija and my son

Robbie

> > > is 7. I joined this group for myself, my husband and Robbie as he

> > > doesnt read or write well yet. He is in first grade. He was

> > > recently diagnosed with PANDAS.

> > > below is a brief discription of PANDAS

> > >

> > > PANDAS, is an abbreviation for Pediatric Autoimmune

> Neuropsychiatric

> > > Disorders Associated with Streptococcal Infections. The term is

> used

> > > to describe a subset of children who have Obsessive Compulsive

> > > Disorder (OCD) and/or tic disorders such as Tourette's Syndrome,

> and

> > > in whom symptoms worsen following strep. infections such as

" Strep

> > > throat " and Scarlet Fever.

> > >

> > > The children usually have dramatic, " overnight " onset of

symptoms,

> > > including motor or vocal tics, obsessions, and/or compulsions. In

> > > addition to these symptoms, children may also become moody,

> irritable

> > > or show concerns about separating from parents or loved ones.

This

> > > abrupt onset is generally preceeded by a Strep. throat infection.

> > >

> > > His symptoms started Aug 4th. It is nearly impossible to find

> > > support groups for kids his age with OCD. He has OCD and ADHD now

> > > since he got sick with Strep in July. I am glad that we found

this

> > > group and we look forward to being able to tak with others

that are

> > > going thru the same thing. SO far I have not had much luck for

> > > support, cant find local groups:( So I have been going thru

all of

> > > this blind so to speak. Many times feeling helpless and all

> alone as

> > > my husband works ful time to keep us afloat. I have been

unable to

> > > work as Robbie has been a handful and we are at the all childrens

> > > hospital 3 times a week.

> > >

> > > Thanks

> > > Sonija

> > >

> >

> >

> >

> >

> >

> >

[Guest guest]

Welcome!  What are Robbie's symptoms?  My daughter seems to also have OCD

affected by strep.  She is 9 now.

hello

Just wanted to say hello to everyone. I am Sonija and my son Robbie

is 7. I joined this group for myself, my husband and Robbie as he

doesnt read or write well yet. He is in first grade. He was

recently diagnosed with PANDAS.

below is a brief discription of PANDAS

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric

Disorders Associated with Streptococcal Infections. The term is used

to describe a subset of children who have Obsessive Compulsive

Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and

in whom symptoms worsen following strep. infections such as " Strep

throat " and Scarlet Fever.

The children usually have dramatic, " overnight " onset of symptoms,

including motor or vocal tics, obsessions, and/or compulsions. In

addition to these symptoms, children may also become moody, irritable

or show concerns about separating from parents or loved ones. This

abrupt onset is generally preceeded by a Strep. throat infection.

His symptoms started Aug 4th. It is nearly impossible to find

support groups for kids his age with OCD. H

e has OCD and ADHD now

since he got sick with Strep in July. I am glad that we found this

group and we look forward to being able to tak with others that are

going thru the same thing. SO far I have not had much luck for

support, cant find local groups:( So I have been going thru all of

this blind so to speak. Many times feeling helpless and all alone as

my husband works ful time to keep us afloat. I have been unable to

work as Robbie has been a handful and we are at the all childrens

hospital 3 times a week.

Thanks

Sonija

[Guest guest]

Hi Sonija,

They believe it is bipolar disorder, but don't want to put a definite label on

him yet with that, seeing he is only 6.

Take Care!

Hugs

Judy

From: Sonija <sgiermantampabay (DOT) rr.com>

Subject: hello

To: @ yahoogroups. com

Date: Friday, September 12, 2008, 1:14 PM

Just wanted to say hello to everyone. I am Sonija and my son Robbie

is 7. I joined this group for myself, my husband and Robbie as he

doesnt read or write well yet. He is in first grade. He was

recently diagnosed with PANDAS.

below is a brief discription of PANDAS

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric

Disorders Associated with Streptococcal Infections. The term is used

to describe a subset of children who have Obsessive Compulsive

Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and

in whom symptoms worsen following strep. infections such as " Strep

throat " and Scarlet Fever.

The children usually have dramatic, " overnight " onset of symptoms,

including motor or vocal tics, obsessions, and/or compulsions. In

addition to these symptoms, children may also become moody, irritable

or show concerns about separating from parents or loved ones. This

abrupt onset is generally preceeded by a Strep. throat infection.

His symptoms started Aug 4th. It is nearly impossible to find

support groups for kids his age with OCD. He has OCD and ADHD now

since he got sick with Strep in July. I am glad that we found this

group and we look forward to being able to tak with others that are

going thru the same thing. SO far I have not had much luck for

support, cant find local groups:( So I have been going thru all of

this blind so to speak. Many times feeling helpless and all alone as

my husband works ful time to keep us afloat. I have been unable to

work as Robbie has been a handful and we are at the all childrens

hospital 3 times a week.

Thanks

Sonija

[Guest guest]

Sonija, always did better away from home too. Luckily he

managed school fine. He enjoys school and learning, likes to make

good grades, and I think school distracted him. He still had OCD

bothering him at school, you could see it if you knew what you were

looking at, watching for. As usual, there's no holding back at home,

I think it bursts forth when they get in the door after holding back

all day.

Glad Robbie is doing better OCD-wise. Hope it all disappears and

that strep/illness stays away for a long time! 's OCD used to

get worse with fevers, one reason I wondered about PANDAS for him but

I don't believe he has that type.

Do keep us updated on how things are going!!!!

>

> Hi Chris!

> It sure is refreshing to not feel all alone anymore. This helps to

give me hope;) Just hearing that there are others that are going

thru or have been there means a great deal. I am having ahard enough

time with just one child going thru all of this, I cant imagine

having more then one child with al of this. I give a huge bow to all

the parents that are getting thru all of this.

>

> Robbie started with all of his symptoms the morning of August 4th

this year so I am a newbie with all of this. Stil green so to

speak. The last two day with his OCD have been great but I probably

[Guest guest]

Welcome Sonija! It's been such a busy week here, I don't think I got a chance to

welcome you.  I've been here a few weeks. MY daughter Joei, 11, was diagnosed in

August.  This group has been a huge assett !

~~Kathy

 

gkathy40@...

http://www.myspace.com/clearingachannel

yahoo messenger id  gkathy40@...

Courage is not living without fear.

Courage is being scared to death and doing the right thing anyway.

-Chae

Subject: hello

To:

Date: Friday, September 12, 2008, 10:14 AM

Just wanted to say hello to everyone. I am Sonija and my son Robbie

is 7. I joined this group for myself, my husband and Robbie as he

doesnt read or write well yet. He is in first grade. He was

recently diagnosed with PANDAS.

below is a brief discription of PANDAS

PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric

Disorders Associated with Streptococcal Infections. The term is used

to describe a subset of children who have Obsessive Compulsive

Disorder (OCD) and/or tic disorders such as Tourette's Syndrome, and

in whom symptoms worsen following strep. infections such as " Strep

throat " and Scarlet Fever.

The children usually have dramatic, " overnight " onset of symptoms,

including motor or vocal tics, obsessions, and/or compulsions. In

addition to these symptoms, children may also become moody, irritable

or show concerns about separating from parents or loved ones. This

abrupt onset is generally preceeded by a Strep. throat infection.

His symptoms started Aug 4th. It is nearly impossible to find

support groups for kids his age with OCD. He has OCD and ADHD now

since he got sick with Strep in July. I am glad that we found this

group and we look forward to being able to tak with others that are

going thru the same thing. SO far I have not had much luck for

support, cant find local groups:( So I have been going thru all of

this blind so to speak. Many times feeling helpless and all alone as

my husband works ful time to keep us afloat. I have been unable to

work as Robbie has been a handful and we are at the all childrens

hospital 3 times a week.

Thanks

Sonija