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I'm just having a day today! :(

 

I need to connect, vent and laugh over the wackiness that has become my life. Let's start a "Top Stupid Comments" thread... can be from parents without a PANDAS/PITAND child, doubting doctors, helpful friends, judging family members... whatever!

 

Go for it - let 'er rip!

 


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  • From an ER doc in a Children's hospital (that claims they are on the cutting edge of diagnosis & treatment): "Have you considered that this might be a psychiatric issues?" Well, duh... explain to me why it resolves soon after the strep infections and why it returns with strep infections?
  • From a school nurse: "She's just going through a phase as a pre-teen." Ha!! I'm not exaggerating when I say "rage"; something is very wrong with my child.
  • From a teacher: "At nine years old, she should be old enough to remember to wash her own hands without being reminded." Ugh... have you not heard anything I said? She is sick, she has an inflammation in her brain (remember the brain, where memories are stored?) due to an auto-immune condition and can not remember. If she gets sick, we're not talking a typical week long cold for this child.
  • From a teacher: "No, I will not check her planner to be sure she has her assignments noted; she will need to call a friend if she doesn't get them." Thanks... just add more stress to her evenings. All I'm asking is to be sure things are organized at school; I'll take it from there.
  • From her father: "She's playing you; there is nothing wrong with her." Ahhh... priceless.
  • "She needs more discipline and she would not have these episodes." Oh, I see... let's spank her for having encephalitis in her basal ganglia? Yeah, right... I'm sure that will help - not!
  • From her father: "These episodes never happen at my house; there must be a trigger at your house." (spoken to me as well as in front of various doctors.)
  • From a counselor & numerous teachers: "Why can't you get her here on time?" bahahahaha
     

 

Ok, I'm getting punchy now... someone else have a shot. ;)

Edited by browneyesmom
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Well, this won't top yours, but here goes...

 

"You can't tell me that just dealing with his PANDAS stuff is the reason for your depression. I mean, my mom is dying of ALS and she's not depressed."

 

~ Dear Husband

 

"... *JUST* dealing with... " ???? Ugh!

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"Her pandas test was normal....her titers are not elevated, so she doesn't have pandas....it's likely just a tic disorder..."

Well-meaning pediatrician (well, at least I got this one to even draw titers...other one wouldn't)....

In fact, that leads me to this quote from ped. #1: "I'm not going to draw blood and run a test for something I don't even understand." Well, at least he was honest.

 

God bless my husband, but last night, while I was floundering again...as dd is not improving on almost 3 months of abx:

"WEll, we've tried everything." puke.

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"you'll find the strep and the behaviors are not related"

spoken by pediatrician at follow up for CYA 5 day course of azith for ASO of 898, positive throat culture and sudden onset PANDAS behaviors.

 

also the last day i set foot in that office!

 

new pediatrician did 30 days keflex and sinus CT. CT showed all 6 cavities infected and within about 3 days of kelfex, 100% remission of behaviors.

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Here is one we heard from a noted neurologist, about 2 years ago--

We took my ticcing d in to see him, our d was still struggling with mild OCD, but much improved after steroids and 10 days of antibiotics...He noted that, "Even a doubter would have to say this looks like PANDAS."

...and then, when I ask how we get her back to 100% he said, "Well, no one is 100%" !!!

We left knowing he would be no help.

Edited by T.Mom
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Oh... here's another one!

 

Took ds to ped for first time at sudden onset of his chorea, tics, ocd and we were absolutely terrified- that's how bad he was! He said,

"I don't see a thing wrong with this kid, but you need to go see a psychiatrist- you're going to make him ill."

 

After all was said and done, and after a beer or two, I wrote him a five page letter and told him exactly what I thought of him. Ran into him at a restaurant last year- wanted to attack him with my steak knife!!

:o

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Me ~ "Do you believe in P.A.N.D.A.S.?"

Neurologist1 ~ "The only pandas I believe in are black, white, fuzzy, & live in China."

 

Eleven year old me ~ "I sleep three hours a night, & sometimes not for three days at a time."

Neurologist1 ~ "Well, Napoleon Bonaparte didn't sleep much & he was okay. You'll be fine." while handing my Mom a prescription for Klonopin.

 

Me ~ "Well, I've had untreated Lyme Disease for five years."

Pulmonologist ~ "Sounds like something you should be telling a rheumatologist, not me."

 

Me ~ "Doctor... I had two chemical burns."

Neurologist2 ~ "Yes, I understand that."

Me ~ "So... why are you even looking at the results?"

Neurologist2 ~ "Because we'll have to redo the MSLT."

Me ~ "Why did I get burned?"

Neurologist2 ~ "I don't know."

Me ~ "Will I get burned again?"

Neurologist2 ~ "I don't know."

Me ~ "Can you do anything differently?"

Neurologist2 ~ "No."

 

& most recent, although not necessarily P.A.N.D.A.S. related...

 

My Mom ~ "Hi, I'm calling to get a note for Emerson. She had a fever yesterday & couldn't go to school today."

Nurse ~ "We can't give her a note. We haven't seen her in 24 hours."

My Mom ~ "You saw her Friday... & told her she had strep. It's Monday. She had a fever last night."

Nurse ~ "Oh, you wouldn't get a fever that late with strep."

Me ~ "You seem to think she's asking you a question when we're really just telling you I had a fever."

Nurse ~ "Can't give you a note."

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From MY psychotherapist, whom I hired b/c of my boys' ongoing pandas and gut issues: "WHO gave you this diagnosis (writes down the names of our DAN doctors??? I'm sure that will go over real well). I'm going to talk to a psychiatrist about this disorder, I have never heard of it" said with a look on her face that says "lady, you are the problem, not your kids". She proceeded to tell me that I need to take a deep breath and not become emotionally involved when the kids have rages/meltdowns.

 

Walked out, never went back. For gosh sakes, it's partly the doubters that brought me to the therapists office to begin with, now SHE wants to treat me like I'm crazy, too???

 

Aren't they taught to not blame the victim?

 

Oh, and there's the classic from my mom "I'm old school, back in the day we would just discipline our kids, not hire psychologists and obsess over them"!!!!!!!!!!!!!! To this day she thinks I'm:

a. an incompetent mom

b. making up problems about my kids for attention

c. going completely broke for the fun of it

Edited by Stephanie2
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