Top stupid comments...

[momcap]

Pediatrician #1: "Have you ever heard of a time out?" I had just described my then 3 year old who was biting himself, banging his head against walls, and had tried to stab me. I said I've read many books on parenting and don't you think this goes beyond a parenting issue? His response, "Don't read all those books. You'll just get confused." He then proceeded to give me handouts on basic parenting skills. I went home, cried, and then made an appointment with pedi #2.

 

Pedi #2: "He seems to be at risk for an anxiety disorder and ADHD, but he's only 4. We don't diagnose kids this young because they often grow out of it. We'll keep an eye on things over the next 2 years and see if he outgrows it."

 

2 years later...my personal favourite:

Pedi #3: "You need to bake apple pie and make your home a happier place to be." (We still call him Dr. Apple Pie, and actually still see him. In the end he has helped us through the PANDAS diagnosis and on to lyme. Love him / hate him!

 

Last week:

Psychiatrist: Talking about DS7's mood disorder and generalized anxiety disorder in relation to PANDAS: "I'm not a medical doctor. What do you want me to do?"

[ajcire]

First ped I asked about PANDAS too... "If you are wearing a red shirt and you fall out of a tree and break your arm.. it doesn't mean you broke your arm because you were wearing a red shirt" He then told me to try tough love.

[peglem]

The previous school my daughter went to had a behavioral expert (master degree in it!) who called me to have a meeting with an independent psychologist (because school personnel are not allowed to recommend medicating) because they'd "been through the ABA book twice and behavioral interventions are not working." I explained that we'd run the gammut of psych meds and hadn't gotten much help there either, but wanted them to try an intervention called Relationship Development Intervention, that we had recently just begun in the home and were seeing some progress with. The behaviorist refused to use anything other than ABA because its the only thing that has been scientifically tested and found to be effective. He even sent me references to @ 325 articles on the effectiveness of ABA. (most cite about a 47% success rate- that's 53% failure rate). Ummmmm....didn't he just emphatically state that ABA is NOT effective for my child? When I pointed that out to him, he still was unwilling to try another stategy...we found another school.

[airial95]

Peglem - did that behavioral expert have a beard? I would only trust him if he is very smart, has a PhD AND a beard!

 

momcap - I literally shot pepsi out of my nose when I read the apple pie comment! Now I have to clean up my desk at work! You should put a warning on that one!!!

[peglem]

Peglem - did that behavioral expert have a beard? I would only trust him if he is very smart, has a PhD AND a beard!

 

momcap - I literally shot pepsi out of my nose when I read the apple pie comment! Now I have to clean up my desk at work! You should put a warning on that one!!!

You know, the outside psychologist did not have a beard, but when I was called about setting up a meeting, those exact words- "he is very smart" were used. Love that video!

[airial95]

Peglem -

 

The first behaviorist that was sent to observe and evaluate my son actually was observing and reporting on the WRONG CHILD! And when confroted, she actually tried to modify and falsify the reports. (My son was absent 2 of the 3 days she was there "observing" and she tried to claim she had the date wrong on her reports - but the schools visitor logs busted her quite nicely!) So the whole Zachary/Jacob thing really struck a nerve with us! My husband, while he doesn't have a PhD, he does have a beard, and I'm fairly certain he likely was the smartest one in the room during our IEP meetings!!

[Phasmid]

Here's a twist! A quote where the tables are turned (I bet I am the ONLY one here who can tell THIS one!)

 

Statement by psychiatrist whom I consulted at the very start:

"Gosh, this sounds like PANDAS. There is quite a bit of evidence for this."

Stupid Comment by ME in 2004:

"No, not PANDAS; I have read the studies, and the data just isn't there."

 

[MomWithOCDSon]

Peglem - did that behavioral expert have a beard? I would only trust him if he is very smart, has a PhD AND a beard!

 

 

 

Now I'M the one shooting Pepsi out my nose!!

[MomWithOCDSon]

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

 

Boy, would my DS high-five you on that one! Not a day goes by that he doesn't come home with some story about a sub who either 1) wasn't given the necessary pertinent information regarding DS and/or any other kids in the class with accommodations, or 2) who, even with the information in hand, seems to think they're smarter than the regular teacher or the rest of the school and "see through" DS and have him correctly pegged as a behavior problem!

 

I admit it: over the years, I've "verbally drop-kicked" a few of them.

 

More stupid lines, this time from various subs to DS:

 

"I don't care how your regular teacher normally handles assignments with you, I'm telling you to do it this way."

 

"No, you may not go see the social worker; this is work time."

 

"What's YOUR problem?!"

[momcap]

 

momcap - I literally shot pepsi out of my nose when I read the apple pie comment! Now I have to clean up my desk at work! You should put a warning on that one!!!

 

That's better than what was coming out of my nose when he said that. I was fuming! It took me until Christmas to find some humour in it. Then I decided I should bake him an apple pie for a Christmas present (i.e. free therapy for me). Now it's our inside family joke - can't afford the consult, bake an apple pie; the car broke down, bake an apple pie, etc. It's amazing how apple pie has solved all our troubles!

[norcalmom]

LOL - early on I too thought we had discipline problems, or gifteness, quirky personality, stong willed child, .or any number of things beside pandas. We've all been taught so much freudian behavior crap.

 

It really is no wonder that our families cannot support us in this. They cannot get it. It took me months of research and living it to get it.

 

I erased homework pages and made my son redo them because they were illegible, and I thought he was rushing through them and didn't care about his work. that happened several time amid crying and screaming.

I told my son't teacher that is was OK not to give him the bathroom pass because she was right, he couldn't need to go THAT often and he should wait til recess or lunch if he had already gone.

I think I may have actually used the Q-word when referring to Dr K early on. Now, I think he's a god.

 

And with the husband...things were very stressful in the marriage because of pandas, until I flipped the mama-bear switch.."Dude, get on this bus or get out of its way". (no, i didn't say that...but I felt something flip inside me. He didn't read any research I gave him, gave me a hard time about "in network" doctors...he jsut wanted to see a doctor and do what we were told. He couldn't deal with it, and I needed to stop asking him to try. He took his seat, and now even drives on rare occassions!

[mama2alex]

From the assessment written by the psychology INTERN they assigned to help decide whether my ds qualified for a 504 plan (he didn't). This was written after he'd been out of school for several weeks because he was too scared to go back. The psychology intern had to come to our home instead of doing a classroom observation and found him cowering in his closet refusing to look at her, speak or come out.

 

"results of this report indicate that Alex's school refusal is not a result of a

severe anxiety condition related to PANDAS. As indicated on the BASC-2, Alex is not observed

to experience more anxiety that his same-aged peers. Instead, BASC-2 results suggest that Alex

is experiencing more difficulties with attention."

 

Yes, I'm sure all of his "same-aged peers"(10 year olds) cower in their closets when new people come to the house!

[HT's Mom]

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....

OMG!!!!!!!!!! How do these doctors live with themselves letting their egos get in the way of helping/educating themselves/treating suffering patients and their parents with respect?? It's truly inexcusable.

[airial95]

Here's a twist! A quote where the tables are turned (I bet I am the ONLY one here who can tell THIS one!)

 

Statement by psychiatrist whom I consulted at the very start:

"Gosh, this sounds like PANDAS. There is quite a bit of evidence for this."

Stupid Comment by ME in 2004:

"No, not PANDAS; I have read the studies, and the data just isn't there."

 

 

We weren't quite that direct. When we (finally) went to the Dr. about our son's "terrible two's from Hades", the nurse who came in to take our vitals/history etc... looked at my son (who was pitching a nice defiant little fit at the time) and non-chlantly said "I bet you this is PANDAS." Of course we were confused - why was she talking about bears from China? When the Dr. came to a similar conclusion (said we were seeing ODD/OCD and ADHD, he could send us to a psych or we could try abx for 30 days since things seemed to start to get bad after his impteigo infection the previous spring)we walked out of there ready to find a new pediatrician. We thought he had lost his marbles if he though abx was going to expel the demon that had taken hold of my child. We opted to fill the abx, while asking for referrals for other pediatricians - since ours was obviously on applie pie short of a picnic

 

Within 10 days, we quickly changed our tune from our Dr. being a certifiable loon to the unmitigated genius of the world!!! I'm so glad we didn't tell him he was crazy to his face!! (Although we have since shared the story with him and gotten a good chuckle out of it.)

[smartyjones]

can we print this thread and present it at the next NIMH pow wow??

Edited February 3, 2011 by smartyjones