hello

[Guest guest]

Kirk thanks so much for the update. I was worried about you. I have been

taking Wellbutrin for depression I started out with a small dose like 37.5mg

three times a day. The exteded release I could not sleep. Anyway it helped me.

( my son was thrown from a horse and had 60 stitches on his face due to deep

deep wounds) so a month later I was in a big hole. This little dose helped

me. I know that pain relief will help you most of all and that is what I am

praying for..wishing you a great day!!!!! Liz NJ

[Guest guest]

Kirk,

It is so good to see you posting even though your situation is so terrible. I

have thought of you many times, wondering if you're okay, so I'm glad to see an

update.

I will be praying for you and your family. When I had to quit work, I had to

see a counselor for six months, the depression was so bad. It's hard to open up

to someone you barely know, isn't it? On the other hand, an objective person

can usually see the things that those close to you cannot.

Hang in there with the disability. Sometimes you feel like these people have

you by they you-know-what, but it will come around. Part of my depression came

from having to even file for disability. I somehow felt shamed by it. But I

swallowed my pride and got over it real fast b/c my kids needed me and that was

the main thing.

Love and hugs to you and yours,

Gail

Visit me, your Kay Independent Beauty Consultant:

http://www.marykay.com/glmurphy (5% of your total order will be donated to the

International Still's Disease Foundation)

Kirk Bonanny wrote:

Hello all. I first think I should apologize for disappearing for a shade over

two months. I am doing about the same physically, but emotionally I am on a

horrible ride.

__________________________________________________

[Guest guest]

Kirk, same for you good man. Nice to have you back. Keep hanging with us. I

know it gets dark sometimes but you have that wonderful family and no matter how

you feel they need you.

Many hugs, Melt

----- Original Message -----

From: Kirk Bonanny

Hello all. I first think I should apologize for disappearing for a shade

over two months. I am doing about the same physically, but emotionally I am on a

horrible ride.

[Guest guest]

Kirk - Glad to see you post and I'm sorry that you are not feeling well.

Know that we are all here if you need to vent. I've been going through some

rough times myself and the emotional rollercoaster is sometimes more than I

can handle! Hang in there.

Hugs,

Peggy

Quakertown, PA

[Guest guest]

and Kirk,

Many prayers to both of you!

Tammi

[Guest guest]

((((((((heather & kirk))))))))))) I hope they finally get to the bottom of

his problems. JH is a great hospital. I'll be praying for both of you. I sure

miss seeing you around.

Oh tell Kirk, I did it! I PASSED CALCULUS! He'll appreciate it and I did

with a B+, not to shabby and I did it online.

Hang in there .

Much love,

Terry

[Guest guest]

I will keep Kirk In my Prayers.. I hope he feels better soon... Keep us updated

Danni

Hello

Hello Stilligans,

Just a little note to let everyone know that Kirk is back in the hospital. They

are supposed to do another MRI on his shoulder area because he cannot lift up

his arm.

His Rheumy wants to send him to Hopkins hospital any day now. hopefully

they'll find something else. I wish he did this a year ago!! he might be gone

for a few weeks, so I'll try to keep everyone updated. Its rare that I'm ever

on this computer. too many other things to do.. talk to you soon, Miss

you

[Guest guest]

Dana

My daughter was diagnosed when she was 13yrs (now 18 yrs and we just

dropped her off at college in Nashville - OCD is no longer an issue for her....

take heart, there are many folks out there who are not as lucky/blessed as

we are, but it could work the same for your daughter).

My child's OCD was also set off by a close death (two actually) within a

couple months our good friend & neighbor passed away suddenly, and then my fa

ther. That's when her OCD really took off. In retrospect, we noticed

things in the past that we had no idea were OCD, but were. She also started

with the hand washing and worrying about germs, etc.

A tip for you early on would be swap out all the hand soap in the house

with baby wash - it helps keep their little hands from turning red & chapped

from all the washing. The best thing that ever happened to us was meds.

Some folks are against them... we were at first. But when we saw how it

almost *magically* changed our baby back into her former self, we were all for

it. She was on meds and therapy for about 1 year. She is now med-free. I

know we still see minor signs of the OCD, but nothing that affects her in

a bad way. I never thought I would see her go off to college - but there

she is.

On the other hand, there are folks on this board who have kids who have

been battling OCD for years and years. I do not know why it was different

for my daughter, but am thankful. I always worry that some horrible thing

will happen & throw her back into it. We've talked to her about knowing the

signs and not to ignore them... go get help so it doesn't get worse.

Anyway, just wanted to share my story.... good luck to you and your

daughter.

LT

In a message dated 8/27/2009 8:28:58 A.M. Eastern Daylight Time,

dana@... writes:

My name is Dana and my daughter is 8y/o. She hasn't received a definite

diagnosis yet, but we feel fairly confident she has OCD. Her father and I

have our first meeting with a therapist tomorrow.

Maybe two months ago she began with meltdowns at bedtime that could last

an hour, saying she was afraid she would die in her sleep. Her uncle (she

was close to) died suddenly in January (he was only 30) and I passed it off

as a result of that.

Shortly thereafter, I began to notice her hand washing. I counted 32 times

in one 12 hour period (just the times I was aware of). It has rapidly

progressed to repeatedly telling me throughout the day she has touched

something, something has gotten in her mouth, and " I feel like I want to wash " .

She

now is afraid to touch doorknobs, items out of the fridge, bottles of

water, silverware (if she accidentally touched it before she washed)and becomes

upset if someone touches her hands. She has also begun spitting over the

last few weeks and is constantly running around with foam/saliva all over

her chin. She says she's afraid she'll be poisoned. When I ask her to wipe

her face, she wipes it on her shoulder and washes her elbows.

She seems to have since made some peace with the loss of her uncle by

sleeping in his shirt to keep her safe. Although all of this seemed to come on

suddenly, in retrospect, she has had an issue with unexplained vomiting

since she was 4. She has been tested for everything imaginable and no physical

reason can be found. The vomiting was so frequent that her back teeth are

decaying and the dentist bills are enormous.

Since the hand washing has begun, the vomiting has ceased.

I've had a difficult time dealing. I've done lots of crying and it's been

good to find some people who are dealing with the same. -Dana Knight

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[Guest guest]

>Welcome, Dana

Good luck with the therapist visit. It sure sounds like OCD. You're off to a

good start just knowing and accepting that.

My daughter wasn't diagnosed until she was 19, after her first year in college

which was a nightmare. She took a leave of absence last year and attended a

local college. We had a terrible experience with a therapist and afterward

decided on an intensive therapy program at Penn's ctsa with remarkable results.

My daughter is returning to school tomorrow. We're hopeful, but she knows she

has to manage it daily.

ERP works for everyone, but I think it's crucial that you find the right

therapist, someone that you like and can implement the therapy properly.

Stay positive, things do get better.

Best to you and your family.

Terry

> My name is Dana and my daughter is 8y/o. She hasn't received a definite

diagnosis yet, but we feel fairly confident she has OCD. Her father and I have

our first meeting with a therapist tomorrow.

> Maybe two months ago she began with meltdowns at bedtime that could last an

hour, saying she was afraid she would die in her sleep. Her uncle (she was close

to) died suddenly in January (he was only 30) and I passed it off as a result of

that.

> Shortly thereafter, I began to notice her hand washing. I counted 32 times in

one 12 hour period (just the times I was aware of). It has rapidly progressed to

repeatedly telling me throughout the day she has touched something, something

has gotten in her mouth, and " I feel like I want to wash " . She now is afraid to

touch doorknobs, items out of the fridge, bottles of water, silverware (if she

accidentally touched it before she washed)and becomes upset if someone touches

her hands. She has also begun spitting over the last few weeks and is constantly

running around with foam/saliva all over her chin. She says she's afraid she'll

be poisoned. When I ask her to wipe her face, she wipes it on her shoulder and

washes her elbows.

> She seems to have since made some peace with the loss of her uncle by sleeping

in his shirt to keep her safe. Although all of this seemed to come on suddenly,

in retrospect, she has had an issue with unexplained vomiting since she was 4.

She has been tested for everything imaginable and no physical reason can be

found. The vomiting was so frequent that her back teeth are decaying and the

dentist bills are enormous.

> Since the hand washing has begun, the vomiting has ceased.

> I've had a difficult time dealing. I've done lots of crying and it's been good

to find some people who are dealing with the same. -Dana Knight

>

[Guest guest]

Hi Dana,

I too am new to the list and to OCD. My daughter, who is 11, was diagnosed

about a month ago. Although in hindsight there were definitely some

symptoms, it seems as if OCD came upon us overnight. We were visiting

friends and one night she came down to our room and was up for hours in the

middle of the night, unable to sleep, worried about having touched something

like Windex or toilet bowl cleaner. She couldn't put her hands down for

fear of " contaminating " our friends' covers so she was lying there in the

dark for hours with her hands up in the air.

We've had a very rough summer and I too have cried my heart out as I've seen

my daughter go from a fairly cheerful, talkative child to somebody

completely obsessed with her rituals and compulsions and unable to interact

with the rest of the family.

Now she seems to have moved on from her contamination fears and instead is

scared that if she looks, swallows, or breathes on someone she will " curse "

them and they will either die or become zombies. Of course, on one level

she knows that is absolutely impossible, but the end result has been that

she no longer looks at anyone, talks to anyone, and spends most of her time

with her hair in front of her eyes and her head hanging low. When she does

accidentally do something that will " curse " somebody, she has a very long

and involved ritual of waving her hands in the air several times and blowing

and huffing and puffing.

She manages to hold it together at school but when she comes home she lets

it all hang out. My husband said something that really hit home: It is as

if an alien stole our daughter and now we have somebody who looks like her

but isn't really her.

We starts CBT therapy about 3 weeks ago. So far, I have seen little

improvement, but the therapist (who specializes in pediatric anxiety

disorders) has said that progress can be slow and not to be too concerned

about the pace right now.

Bedtimes are always extremely difficult as my DD is very tired from waking

at 6 a.m. to go to school and the fatigue makes everything worse. So now we

have started giving her some melatonin, upon the recommendation of the

psychologist, and sometimes that helps.

Needless to say, our family life is a mess since we spend so much time

trying to calm her down. We also have a son with Down syndrome, who I

thought was going to be my " challenge " child. Instead, the Down syndrome

has proven to be a walk in the park compared to this.

I wish I had some advice for you, but as it is I am just struggling to make

it through each day. I have hope for the future and I have been doing a lot

of reading on OCD. Right now, our therapist has suggested that we challenge

her worries, so when she says " I just looked at my brother's door and now

I'm worried that he's dead " I say things like " Really? Do you really think

that just looking at a door can kill somebody? How likely is that to

happen? "

Good luck on this " journey. " None of us wanted to go on it, but here we are

and we have to just try to muddle through and do what's best for our child.

I would be very interested in hearing from others on this list whose

children have made significant progress and what their

tips/suggestions/therapies have been. This would be very encouraging for

those of us just starting out.

Thanks,

in Colorado

>

>

> My name is Dana and my daughter is 8y/o. She hasn't received a definite

> diagnosis yet, but we feel fairly confident she has OCD. Her father and I

> have our first meeting with a therapist tomorrow.

> Maybe two months ago she began with meltdowns at bedtime that could last an

> hour, saying she was afraid she would die in her sleep. Her uncle (she was

> close to) died suddenly in January (he was only 30) and I passed it off as a

> result of that.

> Shortly thereafter, I began to notice her hand washing. I counted 32 times

> in one 12 hour period (just the times I was aware of). It has rapidly

> progressed to repeatedly telling me throughout the day she has touched

> something, something has gotten in her mouth, and " I feel like I want to

> wash " . She now is afraid to touch doorknobs, items out of the fridge,

> bottles of water, silverware (if she accidentally touched it before she

> washed)and becomes upset if someone touches her hands. She has also begun

> spitting over the last few weeks and is constantly running around with

> foam/saliva all over her chin. She says she's afraid she'll be poisoned.

> When I ask her to wipe her face, she wipes it on her shoulder and washes her

> elbows.

> She seems to have since made some peace with the loss of her uncle by

> sleeping in his shirt to keep her safe. Although all of this seemed to come

> on suddenly, in retrospect, she has had an issue with unexplained vomiting

> since she was 4. She has been tested for everything imaginable and no

> physical reason can be found. The vomiting was so frequent that her back

> teeth are decaying and the dentist bills are enormous.

> Since the hand washing has begun, the vomiting has ceased.

> I've had a difficult time dealing. I've done lots of crying and it's been

> good to find some people who are dealing with the same. -Dana Knight

>

>

>

[Guest guest]

Hi Dana -

I am so sorry that you and your daughter are going through this. It can be very

frightening. We have an 8 year old daughter that has had 3 episodes very

similar to this - even down to the spitting. After 4 months of therapy &

intense work at home, she has not spit for the last 5 days, and is seeming free

of most OCD symptoms - 95% better. She was diagnosed with PANDAS (do you know

about this?) and does ERP (Exposure and Ritual Prevention Therapy), and likely

will for the foreseeable future. She was diagnosed after a coincidental dose of

Prednisone eliminated 80% of all symptoms. Obviously she cannot stay on

Predisone long term, but we have found that the combination of ERP and an

antibiotic to be very effective. If you need to know more about PANDAS,you can

post your story at http://www.latitudes.org/forums/index.php?showforum=17. Many

children present with only OCD, so don't be thrown off by the discussion of

tics. It is also entirely possible that her OCD started after the trauma with

her uncle. You just may want to check both possibilites at the same time.

ERP therapy is very effective, for fairly severe OCD that is taking up a lot of

their life, I'd really recommend that you urgently find one. Also, you can read

" What to do when your brain gets Stuck " which is a great age appropriate

workbook for kids her age.

I'm really sorry this has happened, and hope it goes well at the therapist. The

best advice I can give you is to make SURE that they do ERP therapy, and that

they are very familiar with how to do this with a young child.

in NC

>

> My name is Dana and my daughter is 8y/o. She hasn't received a definite

diagnosis yet, but we feel fairly confident she has OCD. Her father and I have

our first meeting with a therapist tomorrow.

> Maybe two months ago she began with meltdowns at bedtime that could last an

hour, saying she was afraid she would die in her sleep. Her uncle (she was close

to) died suddenly in January (he was only 30) and I passed it off as a result of

that.

> Shortly thereafter, I began to notice her hand washing. I counted 32 times in

one 12 hour period (just the times I was aware of). It has rapidly progressed to

repeatedly telling me throughout the day she has touched something, something

has gotten in her mouth, and " I feel like I want to wash " . She now is afraid to

touch doorknobs, items out of the fridge, bottles of water, silverware (if she

accidentally touched it before she washed)and becomes upset if someone touches

her hands. She has also begun spitting over the last few weeks and is constantly

running around with foam/saliva all over her chin. She says she's afraid she'll

be poisoned. When I ask her to wipe her face, she wipes it on her shoulder and

washes her elbows.

> She seems to have since made some peace with the loss of her uncle by sleeping

in his shirt to keep her safe. Although all of this seemed to come on suddenly,

in retrospect, she has had an issue with unexplained vomiting since she was 4.

She has been tested for everything imaginable and no physical reason can be

found. The vomiting was so frequent that her back teeth are decaying and the

dentist bills are enormous.

> Since the hand washing has begun, the vomiting has ceased.

> I've had a difficult time dealing. I've done lots of crying and it's been good

to find some people who are dealing with the same. -Dana Knight

>

[Guest guest]

Hi - I just posted a reply to Dana about PANDAS. I would strongly

encourage you to look at this, as well as to find an ERP therapist for your

daughter. Whenever a Parent can remember the day that OCD started (sudden

onset) and they are talking about possession - it just takes me back to our

early search. That is exactly the way we felt. Our wild charming social

daughter retreated into a shell of fear and I can tell you the day that it

happened. Either way, it's a very difficult diagnosis - OCD or PANDAS w/OCD -

but ERP therapy does offer hope & healing, and if PANDAS, there are also medical

treatments you can try.

I am also a bit concerned about your therapist - talk therapy which is normal

for other anxiety disorders, does NOT work for OCD. ERP is the only proven

therapy - and it works as well as meds for many kids. In combo with meds, it is

really great. We wasted months with a therapist that was not really trained in

doing ERP therapy for kids. With a change to a new therapist we saw

improvements very quickly. Get the book " What to do when your brain gets Stuck "

- your daughter will likely love it.

If you would like some specific ideas about ERP therapy, please let us know -

that is a fairly long post.

All my best -

in NC.

>

> Hi Dana,

>

> I too am new to the list and to OCD. My daughter, who is 11, was diagnosed

> about a month ago. Although in hindsight there were definitely some

> symptoms, it seems as if OCD came upon us overnight. We were visiting

> friends and one night she came down to our room and was up for hours in the

> middle of the night, unable to sleep, worried about having touched something

> like Windex or toilet bowl cleaner. She couldn't put her hands down for

> fear of " contaminating " our friends' covers so she was lying there in the

> dark for hours with her hands up in the air.

>

> We've had a very rough summer and I too have cried my heart out as I've seen

> my daughter go from a fairly cheerful, talkative child to somebody

> completely obsessed with her rituals and compulsions and unable to interact

> with the rest of the family.

>

> Now she seems to have moved on from her contamination fears and instead is

> scared that if she looks, swallows, or breathes on someone she will " curse "

> them and they will either die or become zombies. Of course, on one level

> she knows that is absolutely impossible, but the end result has been that

> she no longer looks at anyone, talks to anyone, and spends most of her time

> with her hair in front of her eyes and her head hanging low. When she does

> accidentally do something that will " curse " somebody, she has a very long

> and involved ritual of waving her hands in the air several times and blowing

> and huffing and puffing.

>

> She manages to hold it together at school but when she comes home she lets

> it all hang out. My husband said something that really hit home: It is as

> if an alien stole our daughter and now we have somebody who looks like her

> but isn't really her.

>

> We starts CBT therapy about 3 weeks ago. So far, I have seen little

> improvement, but the therapist (who specializes in pediatric anxiety

> disorders) has said that progress can be slow and not to be too concerned

> about the pace right now.

>

[Guest guest]

Thanks for the advice.

My impression of my therapist is that she is trained in CBT, which I thought

also included ERP. Are they two totally different things?

As for PANDAS, we have been thinking about it because my son had a cold/ear

infection which was treated with an antibiotic (because he has Down

syndrome, he is much more susceptible to getting sick and, when sick, does

not get better very easily) and my daughter complained of a sore throat--but

it went away on its own so I never worried about it being strep.

How do you go about being diagnosed with PANDAS? Does she need to be tested

for strep? Once she gets on an antibiotic, does the OCD go away?

Thanks to all you " veterans " out there. I know, from my experience with my

son with Down syndrome, that doctors and therapists are of course very

helpful, but the advice of other parents " in the trenches " is invaluable.

>

>

> Hi - I just posted a reply to Dana about PANDAS. I would strongly

> encourage you to look at this, as well as to find an ERP therapist for your

> daughter. Whenever a Parent can remember the day that OCD started (sudden

> onset) and they are talking about possession - it just takes me back to our

> early search. That is exactly the way we felt. Our wild charming social

> daughter retreated into a shell of fear and I can tell you the day that it

> happened. Either way, it's a very difficult diagnosis - OCD or PANDAS w/OCD

> - but ERP therapy does offer hope & healing, and if PANDAS, there are also

> medical treatments you can try.

>

> I am also a bit concerned about your therapist - talk therapy which is

> normal for other anxiety disorders, does NOT work for OCD. ERP is the only

> proven therapy - and it works as well as meds for many kids. In combo with

> meds, it is really great. We wasted months with a therapist that was not

> really trained in doing ERP therapy for kids. With a change to a new

> therapist we saw improvements very quickly. Get the book " What to do when

> your brain gets Stuck " - your daughter will likely love it.

>

> If you would like some specific ideas about ERP therapy, please let us know

> - that is a fairly long post.

>

> All my best -

>

> in NC.

>

>

> >

> > Hi Dana,

> >

> > I too am new to the list and to OCD. My daughter, who is 11, was

> diagnosed

> > about a month ago. Although in hindsight there were definitely some

> > symptoms, it seems as if OCD came upon us overnight. We were visiting

> > friends and one night she came down to our room and was up for hours in

> the

> > middle of the night, unable to sleep, worried about having touched

> something

> > like Windex or toilet bowl cleaner. She couldn't put her hands down for

> > fear of " contaminating " our friends' covers so she was lying there in the

> > dark for hours with her hands up in the air.

> >

> > We've had a very rough summer and I too have cried my heart out as I've

> seen

> > my daughter go from a fairly cheerful, talkative child to somebody

> > completely obsessed with her rituals and compulsions and unable to

> interact

> > with the rest of the family.

> >

> > Now she seems to have moved on from her contamination fears and instead

> is

> > scared that if she looks, swallows, or breathes on someone she will

> " curse "

> > them and they will either die or become zombies. Of course, on one level

> > she knows that is absolutely impossible, but the end result has been that

> > she no longer looks at anyone, talks to anyone, and spends most of her

> time

> > with her hair in front of her eyes and her head hanging low. When she

> does

> > accidentally do something that will " curse " somebody, she has a very long

> > and involved ritual of waving her hands in the air several times and

> blowing

> > and huffing and puffing.

> >

> > She manages to hold it together at school but when she comes home she

> lets

> > it all hang out. My husband said something that really hit home: It is as

> > if an alien stole our daughter and now we have somebody who looks like

> her

> > but isn't really her.

> >

> > We starts CBT therapy about 3 weeks ago. So far, I have seen little

> > improvement, but the therapist (who specializes in pediatric anxiety

> > disorders) has said that progress can be slow and not to be too concerned

> > about the pace right now.

> >

>

>

>

[Guest guest]

ERP therapy is a form of CBT. But just because a therapist is trained in CBT

therapy does NOT mean that they understand and can implement ERP therapy for

Pediatric OCD. There is a 3 day class that they can attend through the OC

Foundation - and classes in school of course. But many therapist have just had

a CE class for 3 -5 hours in treating OCD. It is a complex disease, and a great

therapist can make a miraculous difference.

In regards to PANDAS - yes, there are treatments and for some children, they do

seem to be cured by antibiotics. I can tell you that we were shocked by the

accidental results of the prednisone. Especially if there was an untreated

illness directly prior - then you should at least check it out. There are also

other treatments, such as IVIG, but they are usually for a while down the road,

depending on severity and response to steroids and antibiotics. There are no

hard fast tests for this, although some labs are working on developing this. It

is a clinical diagnosis at this time, meaning that they examine your child and

decide based on a multitude of data points. The main one is Sudden Onset,

especially if you have a documented case of strep. But even without this, you

can figure it out. We were diagnosed by a Neurologist. Things any child should

be tested for if they have sudden onset, are ANA levels, strep titers, thyroid

disease. A good neurologist can test for all these things. PANDAS has been

controversial in the past, and many praticioners are still not educated about

the disease. However, there have been a lot of studies lately, that are showing

the connection very clearly. Post on Latitudes - I am a newbie to this disease,

but there are a lot of parents that are years into this. You can also log onto

www.pandasnetwork.com for more info. Here are some of the symptoms - you don't

have to have them all:

Choreiform movements; involuntary or irregular writhing movements of the legs,

arm or face

Presence of tics and/or hyperactivity

Irritability, temper tantrums, or mood lability

Nighttime difficulties

Severe nightmares and new bedtime rituals or fears

Separation Anxiety

Age regression: going back to younger developmental stage

New handwriting problems, loss of math skills, sensory sensitivities

There are other tests and clues as well.

Our daughter presented first with panic attacks, sudden and debilitating

seperation anxiety, severe OCD, urinary changes and age regression. Her

handwriting is awful naturally, so I can't tell you if it regressed! Her

Neurologist also showed me her hands making a piano movement, which I had never

seen on my own & was astonished when he showed me how to see it. We ended up in

sensory integration therapy, ERP, and on antibiotics. Through all that, she is

95% back, and still improving. Some days I still wonder about the PANDAS

diagnosis, but I cannot argue that she healed on steroids, and that this came on

out of the blue. We have OCD in our family, so for a long time, I thought it

was just genetic. Now I think she may have had the tendency towards OCD

genetically, and the PANDAS put it into a severe state with sudden onset.

Hope this is helpful - my main message would be that there is hope, not matter

the diagnosis. in NC.

..

>

> Thanks for the advice.

>

> My impression of my therapist is that she is trained in CBT, which I thought

> also included ERP. Are they two totally different things?

>

> As for PANDAS, we have been thinking about it because my son had a cold/ear

> infection which was treated with an antibiotic (because he has Down

> syndrome, he is much more susceptible to getting sick and, when sick, does

> not get better very easily) and my daughter complained of a sore throat--but

> it went away on its own so I never worried about it being strep.

>

> How do you go about being diagnosed with PANDAS? Does she need to be tested

> for strep? Once she gets on an antibiotic, does the OCD go away?

>

[Guest guest]

Hi Dana,

You have some great replies already, I just wanted to add my welcome to the

rest. I undertand your tears, there is a grieving process in coming to terms

with your child having this disorder. I think it is almost a daily process, as

you let go of how it was, and come to accept how it is, and then just deal. Two

months is not that long, with time and help it will all gets easier.

OCD is a chronic disorder, but it can be managed. I'm glad you are meeting with

a therapist, do let us know how this goes. I'm guessing others have already

underlined that you want to ensure that they do ERP(exposure and response

prevention) based CBT, but just in case.

Since you mention that your daughter's vomitting stopped when the hand washing

started, I'm wondering if the vomitting might have been a coping/ritual type

behavior to cope with her fear of being poisoned or dying, or possibly something

else? Just a thought. The underlying OCD thoughts can drive them to do some

very bizarre and sometimes even self harming things.

Keep posting your questions, concerns, or just asking for support. This is a

great group who will understand and usually have ideas.

Warmly,

Barb

Ontario, Canada

Son, 18, OCD, LD - doing quite well now!

>

> >

> > My name is Dana and my daughter is 8y/o. She hasn't received a definite

diagnosis yet, but we feel fairly confident she has OCD. Her father and I have

our first meeting with a therapist tomorrow.

> > Maybe two months ago she began with meltdowns at bedtime that could last an

hour, saying she was afraid she would die in her sleep. Her uncle (she was close

to) died suddenly in January (he was only 30) and I passed it off as a result of

that.

> > Shortly thereafter, I began to notice her hand washing. I counted 32 times

in one 12 hour period (just the times I was aware of). It has rapidly progressed

to repeatedly telling me throughout the day she has touched something, something

has gotten in her mouth, and " I feel like I want to wash " . She now is afraid to

touch doorknobs, items out of the fridge, bottles of water, silverware (if she

accidentally touched it before she washed)and becomes upset if someone touches

her hands. She has also begun spitting over the last few weeks and is constantly

running around with foam/saliva all over her chin. She says she's afraid she'll

be poisoned. When I ask her to wipe her face, she wipes it on her shoulder and

washes her elbows.

> > She seems to have since made some peace with the loss of her uncle by

sleeping in his shirt to keep her safe. Although all of this seemed to come on

suddenly, in retrospect, she has had an issue with unexplained vomiting since

she was 4. She has been tested for everything imaginable and no physical reason

can be found. The vomiting was so frequent that her back teeth are decaying and

the dentist bills are enormous.

> > Since the hand washing has begun, the vomiting has ceased.

> > I've had a difficult time dealing. I've done lots of crying and it's been

good to find some people who are dealing with the same. -Dana Knight

> >

>

[Guest guest]

Hi ,

What you wrote below is interesting. Are you saying an

antibiotic or the prednisone coincidentally alleviated symptoms? And,

is that why it is daignosed PANDAS? Thanks for the clarification.

Dorelle

[Guest guest]

Hi Dana, welcome! Do let us know how the therapist appt goes tomorrow! I saw

you had lots of other replies, so I'm sure you got some tips there about what to

look for with a therapist and treating OCD.

Was wondering, was she ever on any type " med " to help with the vomiting, did

anything help? Spitting - oh yes, we've had quite a few posts about that over

the years, so you're not alone there either.

I'm a single mom, 3 sons. They're all grown now pretty much, but one ()

started with OCD in 6th grade. He's 20 now. I joined this group not long after

his OCD began and it's been the best support, to have others who understand, and

it doesn't matter if the OCD isn't the same, we still can understand living with

OCD and the behaviors it causes, etc.

Again, do let us know how the appointment goes!

>

> My name is Dana and my daughter is 8y/o. She hasn't received a definite

diagnosis yet, but we feel fairly confident she has OCD. Her father and I have

our first meeting with a therapist tomorrow.

> Maybe two months ago she began with meltdowns at bedtime that could last an

hour, saying she was afraid she would die in her sleep. Her uncle (she was close

to) died suddenly in January (he was only 30) and I passed it off as a result of

that.

>

[Guest guest]

Hi Dorelle - I see that I did not explain that very well! A typical test to see

if a child with sudden onset OCD has PANDAS, after looking at other clinical

data, is to given them Prednisone - I believe for 5-10 days. If the OCD receeds

significantly, then you have a very strong clue that it is PANDAS. For us, the

Prednisone use was coincidental (we did not use it intentionally to figure out

PANDAS) - Meg had terrible Poison Ivy & it was prescribed for that. However, we

had the same result - dramatic reduction in OCD symptoms, general stress level,

seperation concerns - for the first time in months, she could sit quietly and do

a game by herself. She dropped a box of small pieces on the floor, and picked

them up calmly without a giant fit. It is hard to describe the difference.

About three days after the Prednisone, the OCD came roaring back. A strange

time for us.

As a result, we went back to our Neurologist twice. After much evalutaion, he

prescribed the Zithro anti-biotic. This is also a recommended plan by some

doctors that work with PANDAS patients. It does not always work, but in Meg's

case, again the OCD receeded significantly. She was already doing extremely

well with ERP therapy, so it was not as dramatic as the Prednisone experience 6

weeks before. I credit the ERP with much of the improvement, but on the

antibiotic, her bad thoughts went down to almost none - not that she was

fighting all the time, but that the thoughts were no longer flooding in all the

time. She continues ERP therapy, and it continues to get easier every day. I

hope that is helpful. I would suggest that there is still a lot to be learned

about this disease, but that research is moving forward now. Here is a copy of

a study recently done, where researchers were able to " give " mice OCD.

http://www.sarnet.org/doc/PANDAS_Mol_Psychiatry_2009.pdf. And here is teh press

release about it.

http://www.eurekalert.org/pub_releases/2009-08/cums-ats081009.php

We have done a LOT of ERP therapy over the years, as this was 's 3rd sudden

and debilitating episode of OCD & Seperation Anxiety. We did not understand

what it was for a long time, but were lucky that we stumbled into ERP principles

from the beginning. Except for one set-back with a therapist that did not

understand ERP, and I was a little underconfident. I learned a sad lot from

that experience! in NC

Best - in NC

>

> Hi ,

>

> What you wrote below is interesting. Are you saying an

> antibiotic or the prednisone coincidentally alleviated symptoms? And,

> is that why it is daignosed PANDAS? Thanks for the clarification.

>

> Dorelle

>

[Guest guest]

Hey girls and boy,

Thanks for the welcome and lets see if we can get past this quiet thing. I'm all ears and mouth. I got a new computer but can't seem to transfer the data from the old to the new....so.......if you feel like it, email me so I have your contact info. I have this set up to read every email until I get back in the swing of things.

I feel good and my stats haven't changed. Stage and grade 3.

It sure is nice to be back.

liz

[Guest guest]

Hey Liz........welcome back.

Dick

At 06:00 PM 4/12/2011, you wrote:

>Hey girls and boy,

> Thanks for the welcome and lets see if we can get past this quiet

> thing. I'm all ears and mouth. I got a new computer but can't seem

> to transfer the data from the old to the new....so.......if you

> feel like it, email me so I have your contact info. I have this set

> up to read every email until I get back in the swing of things.

> I feel good and my stats haven't changed. Stage and grade 3.

> It sure is nice to be back.

> liz

[Guest guest]

Hello. Thought I'd write and let you know what is going on with .

Week 21 will be starting today. Haven't missed a shot or any pills, but the

treatment is kicking his butt. The first shot made him really sick, but every

shot since then has been not bad. The pills are hurting his stomach, but the

gingerale is helping a little. And he needs to remember to eat small meals

throughout the day. I also wish he would drink more water, but that is a

struggle for him as he's not a huge fan of water - even if I flavour it!

's liver is stage 3 level 3 but liver enzymes are 37 so the nurse was

happy with that. We still don't have the results for the week 12 blood work

(which they didn't do until week 14) but hope to hear this week. Even if the

numbers aren't what the government is looking for he says he'll stay on the

treatment and take his shot of it working anyway.

It's the arthritis, caused by the HepC, that is really killing him. The pain is

so bad that he wimpers at night in his sleep and I feel like a torturer when I

wake him up in the morning. " Morning honey, wake up. I know you feel like shit.

Here's some food and yummy pills! " Ugh...I sure hope this works. The

Rhuematologist has him on very mild arthritis medicine because he doesn't want

to interfere with the HepC meds. His hands are so sore that he can't even open a

bottle of water.

Anyway, we are fighting and are confident that the treatment is working. Pray

that his results are good! Thanks for listening!!

Bernice

[Guest guest]

Good morning Bernice...Seems you and hubby are having a rough time..He will feel

better as you probably know if he drank the gallon of water a day..it flushes

out all that poison..maybe not all but some to where it makes you feel a little

better..he sounds like he is going through hell with the tx..Im so sorry...I

wonder if you can get him to drink arizona ice tea or powdered flavor

tea..forgot the name of it..I use to drink alot of it..its a powder..anyone

...help me here..its not nestea..AHH..crysal light!!..thats it..and I drank alot

of coffee...also you can make fresh lemonade..thats always

good!..anyway..wishing the best for you and mike and take care of you too!..

Have a good day..Im off to the lake, its Jims bday today and ive made a bday

cake and some ravioli and bad ass sauce..lol..jim has a place up at canyon lake

tx..love it out there..we spend time back and forth..one week at the lake and

then one week here in town...have a good one everyone! pattypooh

---- Our Own Little Lake wrote:

>

> Hello. Thought I'd write and let you know what is going on with .

>

> Week 21 will be starting today. Haven't missed a shot or any pills, but the

treatment is kicking his butt. The first shot made him really sick, but every

shot since then has been not bad. The pills are hurting his stomach, but the

gingerale is helping a little. And he needs to remember to eat small meals

throughout the day. I also wish he would drink more water, but that is a

struggle for him as he's not a huge fan of water - even if I flavour it!

>

> 's liver is stage 3 level 3 but liver enzymes are 37 so the nurse was

happy with that. We still don't have the results for the week 12 blood work

(which they didn't do until week 14) but hope to hear this week. Even if the

numbers aren't what the government is looking for he says he'll stay on the

treatment and take his shot of it working anyway.

>

> It's the arthritis, caused by the HepC, that is really killing him. The pain

is so bad that he wimpers at night in his sleep and I feel like a torturer when

I wake him up in the morning. " Morning honey, wake up. I know you feel like

shit. Here's some food and yummy pills! " Ugh...I sure hope this works. The

Rhuematologist has him on very mild arthritis medicine because he doesn't want

to interfere with the HepC meds. His hands are so sore that he can't even open a

bottle of water.

>

> Anyway, we are fighting and are confident that the treatment is working. Pray

that his results are good! Thanks for listening!!

>

> Bernice

>

>

[Guest guest]

Yea Crystal Light has many flavors, I used to drink it alot. To: HepatitisCSupportGroupForDummies Cc: Our Own Little Lake Sent: Wednesday, April 13, 2011 8:57 AMSubject: Re: Re: hello

Good morning Bernice...Seems you and hubby are having a rough time..He will feel better as you probably know if he drank the gallon of water a day..it flushes out all that poison..maybe not all but some to where it makes you feel a little better..he sounds like he is going through hell with the tx..Im so sorry...I wonder if you can get him to drink arizona ice tea or powdered flavor tea..forgot the name of it..I use to drink alot of it..its a powder..anyone ..help me here..its not nestea..AHH..crysal light!!..thats it..and I drank alot of coffee...also you can make fresh lemonade..thats always good!..anyway..wishing the best for you and mike and take care of you too!..

Have a good day..Im off to the lake, its Jims bday today and ive made a bday cake and some ravioli and bad ass sauce..lol..jim has a place up at canyon lake tx..love it out there..we spend time back and forth..one week at the lake and then one week here in town...have a good one everyone! pattypooh

[Guest guest]

Hi Everyone. Thanks for the nice words and prayers. I really appreciate it! I'm

going to tell that drinking water really is going to help. I'm hoping

that if he drinks a lot for the next three days he'll feel better and it won't

be such an issue to get him to continue drinking.

Be healthy and happy!

Bernice

>

>

> Hello. Thought I'd write and let you know what is going on with .

>

> Week 21 will be starting today. Haven't missed a shot or any pills, but the

treatment is kicking his butt. The first shot made him really sick, but every

shot since then has been not bad. The pills are hurting his stomach, but the

gingerale is helping a little. And he needs to remember to eat small meals

throughout the day. I also wish he would drink more water, but that is a

struggle for him as he's not a huge fan of water - even if I flavour it!

>

> 's liver is stage 3 level 3 but liver enzymes are 37 so the nurse was

happy with that. We still don't have the results for the week 12 blood work

(which they didn't do until week 14) but hope to hear this week. Even if the

numbers aren't what the government is looking for he says he'll stay on the

treatment and take his shot of it working anyway.

>

> It's the arthritis, caused by the HepC, that is really killing him. The pain

is so bad that he wimpers at night in his sleep and I feel like a torturer when

I wake him up in the morning. " Morning honey, wake up. I know you feel like

shit. Here's some food and yummy pills! " Ugh...I sure hope this works. The

Rhuematologist has him on very mild arthritis medicine because he doesn't want

to interfere with the HepC meds. His hands are so sore that he can't even open a

bottle of water.

>

> Anyway, we are fighting and are confident that the treatment is working. Pray

that his results are good! Thanks for listening!!

>

> Bernice

>