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lol @ HT's Mom... I could never cope otherwise - God and humor carry me through this! When you see me posting wacky things, it means the stress in my house is sky high! :P


Great posts everyone... thanks for making me chuckle at the wackiness that has become all of our lives on a very stressful evening.

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By age 3, my daughter (nonverbal) is a self injurer and has a bruised forehead and sores on her hands and arms from biting herself. But, when she had been limping for 2 days and I could find no sign of injury, I took her to the doctor. The doc examined her foot and ankle and said, (I told her my daughter's forehead was from banging her head and about the wounds on her arms) and the doc actually said, "I don't see any pathology here. 'These kids' feel pain like anybody else. She would not walk on it if it hurts!" I was sooooooooo furious!


Then the pediatric rheumatologist, when she is 12yo: "PANDAS is a very rare disease and I would be thrilled to find a case of it, but her titers are not elevated, so she doesn't have it." He knew that she'd tested positive for strep every time she was not on abx and that the strep positivity corresponded w/ behavioral changes and the behaviors abated w/ abx.

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From a stupid junior high school gym teacher, in a meeting about how DS was struggling with changing in the locker room due to contamination and was unwilling to scrabble in a pile of other boys for the volley ball or basketball during p.e. drills, just three months before we had to pull him out of school entirely for nearly two months: "I don't see any anxiety. He seems fine to me."

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Oh!!!! How could I forget this one?!?! Oh my God!!!


I had a substitute teacher one day in the seventh grade, RIGHT before we discovered P.A.N.D.A.S. & were still operating under the Tourette's diagnosis. I had a twitch with a "bad word" (which is not a common occurrence for me...) & immediately followed it up with the usual "Oh my God! I am so sorry! I have Tourette's!" This sub, who I had literally never met in my life, looked me dead in the eye & said "No you don't."





The entire class had my back, "No, she really does have Tourette's. Believe me. We all hate it.". But she was unphased & sent me to the office, where I walked in & said "So, apparently I don't have Tourette's....". Never saw that sub working at any of my schools again.




Another good one!


Very first time I ever passed out was in the eighth grade. Also a substitute teacher. This one was ESPECIALLY awesome because he's notorious for literally not speaking English. No, seriously. Cannot understand it, read it, or speak it. Everyone is thrilled when "Mr. S" comes around because it means we do nothing. Being the cool kid that I am, I was sitting at my desk reading a book when BAM. Out like a light, after at least three years without a nap. I wasn't actually asleep for long, but the first time I passed out also just so happened to be my first experience with sleep paralysis & depersonalization as well. An hour later, I still hadn't moved. When the bell rang & someone shook me to wake me up, I freaked the #### out & started screaming & crying that I didn't know who or where I was... & this substitute just goes...


"Next class."


"Next class."


"Next class."








Moral of the story is... subs suck. Well, most of the time.

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From my husband(who claims to be supportive) after I had a moment of feeling sorry for myself about the difficulties of GFCF,organic,and several food allergies as many of you know mealtime can be such a chore. He says "Well it was your choice to put her on such a diet" Yes it was my choice to do what I know is best for my child, I guess he thinks I should just make the choice thats easiest for me. And from our former pedi "Its not Tourettes because so-an -so's son has that and he barks" shes also the one who told me to"do myself a favor and stay off the internet because theres so much info out there that it can be confusing" after I tried to explain to her that my daughters verbal tic was not OCD my daughters own words:It feels all UHHH if I dont do it.--Clearly the tic being done to release a physical tension, not the mental releif of tension that say washing hands gives to a contamiation fear. I hope she does her future patients a favor and gets on the internet,although I guess she might be confused by all the information out there.

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Here's one; I had purchased an extra copy of "Saving Sammy" for our pediatrician (who had seen my d severely OCDing and crawling on the floor in her office...and then witnessed the change w/ antibiotics and steroids), when I gave her the copy of SS she refused to take it because, "Oh no, I can't take that, because you will come back and expect for me to have read it..."

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When putting together my son's IEP from the Special Ed Director (and incidentally the ONLY person in the room who had never met or interacted with my son):


"Well, he's testing just fine, it's not affecting him academically so there's nothing that we can really do for him. There's no problem here"


Really?? So having him kick, scream, bite, flail and rage for over an hour every morning when I try to drop him off at school b/c the seperation anxiety and OCD are so bad isn't a problem??? Him throwing chairs at classmates if they get too close to him during an activity or mess up one of his rituals isn't a problem? Because I have a kid who tends to be academically gifted and pretty darn smart considering his hardships we don't have a problem???


My response: "So are you seriously telling me we have to wait for our kid to get "stupid" before you will help him???"


Within 3 weeks we got all of the accomodations resolved, and this woman never showed up again to another IEP meeting. My son is now thriving in the EELP class and is controlling his OCD very well (for his age) in that setting. But he never really had a problem :D

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The middle school principal ......


" I just can't help but to think that this is a self perpetuating behavioral problem." Errrrr!!!


This is after my son missing almost two full years of school. Then starting back was doing beautifully and after a month got a virus and crashed! We had an hour long conference call with Dr. K, Psych hospitals, IVIG, etc. How I wish he was right!! Needless to say I don't care for this guy much at all!!

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Do you really think she needs to go back to Chicago to get IVIG # 2?

from everyone in our family..

Ya... I just love to going broke, getting ready to loose our house,living off credit cards, working our butt's off

and not getting anywhere, can't go anywhere, because of the fear of her getting sick from someone else kid who has strep or a cold but there parents dont care,because there child is feeling better..

and just waiting for Saturday to get here so we can tell her that we need to go back.. just watch the fear in her face just for the fun of it!!!oh and I love to watch her going to the bathroom 30 times a day,and oh hey let's stop eating for a week because she feel's like she will choke.

Yes, we do think she needs to go back to Chicago for IVIG #2 WHY?? because God gave her to us to take care of.

because the insurance company can go you know where,and so can everyone else...

And I will live in the homeless shelter if we need to,but she will overcome this and grow up to be strong and healthy and the most beautiful woman inside and out !!

so there take that everyone! YES she needs IVIG # 2


Edited by Doug
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DS had been through lots of trouble in class, got his diagnosis, explained to his teachers, explained to his classmates but his tic- tapping his feet in a rhythmic pattern was disruptive. We had put a rug down, to dampen sound, and other things. His teacher sent him out of class to sit in other teacher's classroom so he wouldn't disturb anyone. (way to make him feel good about himself) Tapping feet resumed, other teacher told him to stop, he explained it was a tic and he couldn't stop. She told him "you are just doing it for attention, you could stop if you really tried." He came so upset that day because he finally had felt he could make sense of things by having diagnosis and then to have an adult tell him that.

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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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I'm gonna pick on the medical professionals a bit... 'cause, heck, they've made our ds's life pretty miserable for the most part over the past 4 years.


  • "No, it can't be PANDAS. PANDAS doesn't come on this abruptly." - from a local child psychiatrist
  • "He's doing this on purpose so we can't examine him. Young man, we're not going to help you until you stop that!" - head of nearby pediatric rheumatology dept when our son could not stop a "seizure-like episode" of chorea in the early days, before diagnosis
  • "There's no medical reason to treat this with antibiotics." - from a local infectious disease specialist dismissing elevated ASO in the absence of strep throat symptoms / positive throat culture
  • "Have you ever heard of OCD?" - local GP as our son was spraying himself with tons of Lysol in the examining room after we'd been trying to explain PANDAS to him
  • "I'm an expert on PANDAS. I don't actually believe it exists, but I believe strep can aggravate latent OCD and Tourette's." - another local child psychiatrist
  • "Yes, I spoke with your out-of-state experts. They haven't published anything, so their information is anecdotal and utterly irrelevant." - a local pediatric ID specialist
  • "I don't know what this means, but it doesn't mean he has PANDAS." - another local pediatric ID specialist, about Cunningham results that placed our ds at upper end of PANDAS range
  • "It can't be SC because the movements aren't continuous. And it can't be PANDAS because that doesn't exist." - local pediatric neurologist
  • "This doctor (Dr. K) isn't qualified to make a PANDAS diagnosis. He's just a pediatrician." - another local pediatric neurologist who admittedly had never treated a case of PANDAS


Gonna stop now. I feel my blood pressure spiking.... <_<

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