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Ooo... ok, so if we're going to print this and present it to researchers/docs (I would like to post some of these on my blog... of course, those docs who are fearful of all the info we parents might find on the internet would probably never see it :wacko: ), I guess I'll forgo writing how I would have liked to deliver that apple pie to MomCaps ped... a face full of it. Oops! :P Not that it would have altered his opinion... probably would have reinforced it, but dare I say, I might have felt a little better for a few mins!

 

Truly, how they live with themselves given the pride and egos I have seen getting in the way of helping a sick child, is beyond me!

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Tracie, your post made me cry.

 

At age 3, sudden onset #1: developmental ped: "propably PANDAS, but we'd need to see multiple exacerbations". Everyone else: "sorry, we don't treat 3 year olds for psychiatric conditions. Good luck"

 

At age 6, sudden onset #2: developmental ped (who I begged for an appt): "nope, she is not washing her hands, so this not OCD, so not PANDAS (it was obsessive thoughts & reassurance compulsions 100's of times a day). I think it is generalized anxiety. Try giving her something special of yours when you leave, and tell her to keep it safe for you". (That, by the way, was like putting out a house fire with a pan of water). Everyone else: "Sorry, we don't treat 6 year olds. But I think she has (fill in the blank) Agoraphobia, Panic Disorder. But she is really too young to have...Agoraphobia, Panic disorder. Would you like an ssri?"

 

At age 7, sudden onset #3 and 4, with no break between: Conversation with therapist. Me: "is there anything else that can cause her entire personality to change like this? Anything else we should be testing for, or trying, any other kind of doctor we should go to?" Therapist "you like to be in control of situations, don't you". WTF? In the car, my husband "I guess we are not going back to her again?"

 

For the record - YES, I would like to be in control. I don't have many options about that, but I sure would LIKE it!

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Tracie, your post made me cry.

 

At age 3, sudden onset #1: developmental ped: "propably PANDAS, but we'd need to see multiple exacerbations". Everyone else: "sorry, we don't treat 3 year olds for psychiatric conditions. Good luck"

 

At age 6, sudden onset #2: developmental ped (who I begged for an appt): "nope, she is not washing her hands, so this not OCD, so not PANDAS (it was obsessive thoughts & reassurance compulsions 100's of times a day). I think it is generalized anxiety. Try giving her something special of yours when you leave, and tell her to keep it safe for you". (That, by the way, was like putting out a house fire with a pan of water). Everyone else: "Sorry, we don't treat 6 year olds. But I think she has (fill in the blank) Agoraphobia, Panic Disorder. But she is really too young to have...Agoraphobia, Panic disorder. Would you like an ssri?"

 

At age 7, sudden onset #3 and 4, with no break between: Conversation with therapist. Me: "is there anything else that can cause her entire personality to change like this? Anything else we should be testing for, or trying, any other kind of doctor we should go to?" Therapist "you like to be in control of situations, don't you". WTF? In the car, my husband "I guess we are not going back to her again?"

 

For the record - YES, I would like to be in control. I don't have many options about that, but I sure would LIKE it!

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From doctor who had been educated on PANDAS and was completely 100% aware that my dd had PANDAS induced anorexia....

"Oh, all the weight she's lost from the surgery is nothing to be worried about. She won't have any trouble gaining it back."

Or from the doctor prescribing new medication (who also is aware of the anorexia) - "Now, one of the side effects is weight gain." Right there in front of her. Great job. You think she'll actually take that medicine now??

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Gotta love Neurologist#1...

 

Neurologist#1 ~ Well, it's not exactly conventional but we're gonna try this pill called Aricept. It's used for Alzheimer's.

Me ~ ...did I just hear you right?

 

Me ~ Doctor, I couldn't sleep & nothing helped. Now all I do is sleep & nothing helps.

Neurologist#1 ~ I think you have Epilepsy.

Me ~ Wait. Are you listening to what I'm saying...?

 

Me ~ I'm not sure how okay I am with the fact that Trazadone metabolizes into mcPP. (the closest chemical piperazine to MDMA/Ecstasy)

Neurologist#1 ~ Stay off Wikipedia.

 

Me ~ Doctor, I'm sleeping even less than usual. I haven't slept in two days.

Neurologist#1 ~ Well, that's probably from the Risperidone. Insomnia is a side effect.

Me ~ Isn't that what we're trying to get rid of...?

 

Me, after not having seen him in a year & a half ~ I've never asked you for pills. I've never asked you for help. But I can't stay awake & I need something.

Neurologist#1 ~ Well, stimulants are just not something I just want to throw around & there doesn't seem to be any reason for you to be this tired.

^After having already prescribed me Clonazepam, Klonopin, Xanax, Aricept, Depakote, Risperidone, Mirtazapine, Trazodone, Tenex, & God only knows what else...

 

Last but not least...

 

Neurologist#1 ~ You seem well now, so I'm going to run your ASO only because you're asking me to.

Later...

Me ~ How was it?

Neurologist#1 ~ Over double positive. But that doesn't mean it has anything to do with all of this.

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Emerson--You are so right, you have got to love that neurologist #1, yikes!!! :)

 

Here is one I said -- (still makes me laugh!)

 

Going to an appt., frantic for help. My husband is carrying our d through the parking lot, she is standing board straight facing forward. My husband is carrying her with his arms wrapped around her waist. She has one arm extended in the air over her head in a fist, the other arm sticking out to the side like a windmill, eyes are closed, spit drooled all over her soaked shirt, hair unbrushed, in pjs--We are entering the hospital and literally a line of about 6 developmentally disabled adults in wheelchairs w/ IVs and hospital gowns are wheeled in front of us so we stop and wait for them to pass. They are all staring at our daughter.

 

We proceed from there to the elevator, where a nicely dressed woman is standing to get on (with us now!)

 

She too looks at us with wonder...As the elevator doors open I turn to the woman (who is staring aghast) and say, "Don't worry, we are not contagious!"

:)

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Sorry I'm posting so much but there are just so many stupid comments!!!

 

We had a substitute in 9th grade Biology... I did the worksheet he asked me to, & when I turned it in told me "I can't take this. I can't read your handwriting.", like he was even gonna be the one grading it!!!! Made me stay after class to rewrite the whole thing.

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After sudden onset severe OCD in my 2yo (all doors had to be closed, all day rages, etc.), 36 hours later I brought him in for a throat culture. I told the walk-in doc what had been happening for the past 36 hours (and by the way, by now I had medicated the kid):

 

doc:"well, he doesn't look sick"

me: "he's not sick, he has sudden onset severe OCD"

 

doc: "well, he's acting just fine" (after it took 3 of us to hold him down for the cultures which he raged through)

me: "he's medicated"

 

and after a faint, pink line shows up on the rapid:

doc: "well, this faint line means that we don't really know if it's strep"

 

luckily the guy gave me the antibiotics and within 36 hours my sweet boy was back. unfortunately, he refused to write on the report that it's strep, so still to this day we have no documentation on my youngest of pandas.

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I was just getting ready for bed and I thought of a good one. When I told our ped that ds2 (at the time he was 15 months and had eye tics and sudden onset rages) has now developed pandas, she smiled and said, "oh, kids this age don't get pandas. he is just mimicking his older brother". I told her that his older brother never ever had eye tics so where else would he have learned them? She just smiled at me as if I had 10 heads!

 

He is now about to turn 3, she has witnessed me bringing him in for strep test based on sudden behavior changes, he tests positive and she still thinks it is impossible for him to have it before the age of 3.

 

BY THE WAY, WHO IN THE WORLD DECIDED THAT YOU HAVE TO BE 3 TO HAVE PANDAS?? MY OLDEST WAS 20 MONTHS AT FIRST EXACERBATION. THEY REALLY NEED TO CHANGE THE GUIDELINES ON THAT!!!!

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I was just getting ready for bed and I thought of a good one. When I told our ped that ds2 (at the time he was 15 months and had eye tics and sudden onset rages) has now developed pandas, she smiled and said, "oh, kids this age don't get pandas. he is just mimicking his older brother". I told her that his older brother never ever had eye tics so where else would he have learned them? She just smiled at me as if I had 10 heads!

 

He is now about to turn 3, she has witnessed me bringing him in for strep test based on sudden behavior changes, he tests positive and she still thinks it is impossible for him to have it before the age of 3.

 

BY THE WAY, WHO IN THE WORLD DECIDED THAT YOU HAVE TO BE 3 TO HAVE PANDAS?? MY OLDEST WAS 20 MONTHS AT FIRST EXACERBATION. THEY REALLY NEED TO CHANGE THE GUIDELINES ON THAT!!!!

 

Stephanie,

 

That's the reason Dr. Murphy is doing a case study on my son - she said that he is the youngest confirmed case that she has come accross and she wanted our permission to publish a case study on it so others can see how it presents in young children!!!

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I was just getting ready for bed and I thought of a good one. When I told our ped that ds2 (at the time he was 15 months and had eye tics and sudden onset rages) has now developed pandas, she smiled and said, "oh, kids this age don't get pandas. he is just mimicking his older brother". I told her that his older brother never ever had eye tics so where else would he have learned them? She just smiled at me as if I had 10 heads!

 

He is now about to turn 3, she has witnessed me bringing him in for strep test based on sudden behavior changes, he tests positive and she still thinks it is impossible for him to have it before the age of 3.

 

BY THE WAY, WHO IN THE WORLD DECIDED THAT YOU HAVE TO BE 3 TO HAVE PANDAS?? MY OLDEST WAS 20 MONTHS AT FIRST EXACERBATION. THEY REALLY NEED TO CHANGE THE GUIDELINES ON THAT!!!!

Its because people have taken the criteria to be a subject in Swedo's studies as diagnostic criteria.

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I've got a good one.....FORMER drs office, one of the pediatricians was looking at dd7's chart and realized we had recently had a ton of bloodwork done, so she asked me why. I told her that I believed that dd had Pandas.....did she know anything about it. She said yes, but the kids who have pandas don't have behavioral problems, once the strep is gone, they are fine.

WOW....good thing we looked for another dr!

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There have been so many, but the all time most stupid has come from my mother on several occasions, "All you have to do is pray and he'll be healed." Seriously wish I had thought of that in the last 4 years of meltdowns, anger, aggression, suicidal thoughts (my child's), 2 1/2 years of antibiotics, 2 years of IVIG, countless doctor consultations and hundreds of hours of research, not to mention watching self-esteen suffer and his brain capacity be annihalated. Now that my other 2 have high numbers on their Cunningham tests and the entire family is on antibiotics, I'll figure out and finally say a prayer. Hadn't thought of that, mom. Gee thanks.

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