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!

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

[Guest guest]

Nina, we all just crawl along and try different things in the hope that

something will help. Its pretty much all trial & error. Its wonderful that you

are

seeing results with the CF diet, how long have you been using it? And what

results are you seeing so far?

Robin

[Guest guest]

Hi again Sonija, oh those reassurance questions!! Lots here have been

through that (or presently going through).

I never realized those could be part of OCD. 's OCD began

around 11.5. But way before that, younger years, he would ask me

questions repeatedly. He was worried about getting cancer or how

long it would take a cut/scratch to heal, noticed every little

feeling his body had to ask me about. I would answer a question, he

might be back in 30 minutes or less to ask again. Luckily that did

finally stop as he got older (or maybe he got tired of getting on my

nerves, my big sighs, he did like to please me back before teenage

years, LOL). Those questions and his tracing over letters are the 2

things I remember most right now. He also has Aspergers Syndrome (on

autism spectrum) and is mild in ways but " affected " in others. The

word " autism " would pop into my head back then too. (finally got AS

dx in 8th grade, hadn't tried before then)

When 's OCD hit, he also had me involved. It was sort of like

he needed me to help end it. He would reach out and touch me. And

then of course I also helped him with schoolwork. With the 504 Plan

we had it arranged that I could write his homework for him and read

to him. So I got to go through middle school again and it was MUCH

harder these days, LOL. So many times I'd want to say " you'll never

need to use/know this! " and just skip it, LOL.

Glad you are feeling some relief now. I wonder do we parents finally

get " adjusted " a little and that provides some relief, even when OCD

can pop up new things daily (especially in the beginning it seems).

Oh you and BJ and other brave parents!! Yes I did try to act

like " no big deal, we'll get through this, you will get through this "

but with the other 2 sons sometimes " demanding " too, I sometimes just

let them see my cry. OCD's demands/stress can take it's toll on

parents too. Did I want some pity maybe? Well, I wanted them to

know I was stressed too, tired, not superwoman. Yeah, LOL, maybe

some pity and an " it's okay mom! "

I did have to apologize a few times to over time. I know

after a while I had to remind myself that I loved , it was the

OCD I didn't want to be around and disliked so much. So at times I

was a bit short with him (fed up with OCD) I would apologize or if I

said something hurtful. (he'd keep me up really late and I liked my

sleep before work) But overall I tried to be supportive each day,

he'd get past this OCD, things will get better, takes TIME, have to

work at it, etc.

Presently has the scrupulosity type OCD. The stuff from the

beginning went away (YAY!), we had some calm times. But mid 11th

grade (several months after stopping medication) his OCD came back

with the bad thoughts/scrupe. He won't go on medication (was on

Celexa), nothing " alternative " has yet helped and so he suffers. (We

used inositol powder in middle school, it helped, but not this time)

He saw a therapist for a while but I think the Aspergers doesn't

help. doesn't see his thoughts as OCD caused, he sees the

OCD just making him obsess on them or repeat them 100x, that type

thing.

He's managed to do well in school all along, college is going great.

(well in school except for the first year OCD started...and then with

all my help thru middle school, LOL, grades dropped from all A's

sometimes) I am really worried about his going away to college, he's

at local community these first 2 years before transferring. Now he

will find some " alone time " in some room or outside to " vent " his

OCD. Where will he do that at college with a roommate? and others

will hear maybe, notice anyway. At least will notice the mumbling to

himself. He's managed being away from home for over a week with his

church youth group though during summers.

Well, supper to go cook. Sorry if that got too long, but it's short

to cover 7 years since it began!

>

> 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

[Guest guest]

Hi Sonija,

Welcome to the group!!!

I have two children with OCD, my daughter is 11 and my son is 6. PANDAS was

suspected with my son also, because he had all the symptoms you mentioned but

when I took him to get his titers checked they were low, and the doctor said

they would be elevated at all times if he had PANDAS. I was almost certain he

had PANDAS. Now the doctor feels he also has ADHD. My son also has a mood

disorder, so we can't use the ADHD meds.

 

Well, I just wanted to wish you a quick WELCOME!

Hugs

Judy

Subject: hello

To:

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]

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 just jinxed myself. He has had no

intrusive thoughts and hasnt asked the questions over and over again. It has

been over a week since he said he wante to kill anyone. He also has thoughts

about sex stuff. The docs said all of these thoughts are comon with OCD, not

eveyone will have the same symptoms but these thoughts have been seen in OCD

with kids.

I can see a huge difference since he finished his antibiotics. Now I really see

the ADHD coming out. He still has the OCD come out epecially when he gets

stressed or is in loud situations. I do hope that your handles things

well when get is off to college. I worry about Robbie being away from me and he

is just 7 starting with all of this! I am sure he will do fine. I find that

Robbie does beter when he is away from me. I guess I enable too much lol

Well I gotta go get some laundry done.

I will talk to you soon

Thanks

your friend Sonija

Re: hello

Hi again Sonija, oh those reassurance questions!! Lots here have been

through that (or presently going through).

I never realized those could be part of OCD. 's OCD began

around 11.5. But way before that, younger years, he would ask me

questions repeatedly. He was worried about getting cancer or how

long it would take a cut/scratch to heal, noticed every little

feeling his body had to ask me about. I would answer a question, he

might be back in 30 minutes or less to ask again. Luckily that did

finally stop as he got older (or maybe he got tired of getting on my

nerves, my big sighs, he did like to please me back before teenage

years, LOL). Those questions and his tracing over letters are the 2

things I remember most right now. He also has Aspergers Syndrome (on

autism spectrum) and is mild in ways but " affected " in others. The

word " autism " would pop into my head back then too. (finally got AS

dx in 8th grade, hadn't tried before then)

When 's OCD hit, he also had me involved. It was sort of like

he needed me to help end it. He would reach out and touch me. And

then of course I also helped him with schoolwork. With the 504 Plan

we had it arranged that I could write his homework for him and read

to him. So I got to go through middle school again and it was MUCH

harder these days, LOL. So many times I'd want to say " you'll never

need to use/know this! " and just skip it, LOL.

Glad you are feeling some relief now. I wonder do we parents finally

get " adjusted " a little and that provides some relief, even when OCD

can pop up new things daily (especially in the beginning it seems).

Oh you and BJ and other brave parents!! Yes I did try to act

like " no big deal, we'll get through this, you will get through this "

but with the other 2 sons sometimes " demanding " too, I sometimes just

let them see my cry. OCD's demands/stress can take it's toll on

parents too. Did I want some pity maybe? Well, I wanted them to

know I was stressed too, tired, not superwoman. Yeah, LOL, maybe

some pity and an " it's okay mom! "

I did have to apologize a few times to over time. I know

after a while I had to remind myself that I loved , it was the

OCD I didn't want to be around and disliked so much. So at times I

was a bit short with him (fed up with OCD) I would apologize or if I

said something hurtful. (he'd keep me up really late and I liked my

sleep before work) But overall I tried to be supportive each day,

he'd get past this OCD, things will get better, takes TIME, have to

work at it, etc.

Presently has the scrupulosity type OCD. The stuff from the

beginning went away (YAY!), we had some calm times. But mid 11th

grade (several months after stopping medication) his OCD came back

with the bad thoughts/scrupe. He won't go on medication (was on

Celexa), nothing " alternative " has yet helped and so he suffers. (We

used inositol powder in middle school, it helped, but not this time)

He saw a therapist for a while but I think the Aspergers doesn't

help. doesn't see his thoughts as OCD caused, he sees the

OCD just making him obsess on them or repeat them 100x, that type

thing.

He's managed to do well in school all along, college is going great.

(well in school except for the first year OCD started...and then with

all my help thru middle school, LOL, grades dropped from all A's

sometimes) I am really worried about his going away to college, he's

at local community these first 2 years before transferring. Now he

will find some " alone time " in some room or outside to " vent " his

OCD. Where will he do that at college with a roommate? and others

will hear maybe, notice anyway. At least will notice the mumbling to

himself. He's managed being away from home for over a week with his

church youth group though during summers.

Well, supper to go cook. Sorry if that got too long, but it's short

to cover 7 years since it began!

>

> 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

[Guest guest]

Hi Judy!

Thanks for the warm welcome. That is much appreciated. Robbie had blood work

done but they never told me what the results were. WHere we were at the doc

office the results wernt back yet so I will have to ask when we go back. As

far as I know they said it was definate PANDAS and that most of everything he

has now will go into remission. We just have to be very careful when he gets

sick again with strep. What kind of mood disorder, if you dont mind me asking?

Robbie has the ADHD too and that alone is exausting.

My hubby took him to the store right now so I have a few min:)

Thanks

Sonija

hello

To:

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]

Thanks Kathy! SO far I love the group and the support I am getting. I looked

all over round where I live for a support group for parents but found nothing.

I wonder if it would be worth it to start one? Heck I wouldnt know what to do

to find people to join....lol

Its a good thought anyway.

Sonija

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