Back from DC (plasmapheresis)

[NancyD]

We were SO CLOSE...

 

DD14 threw a nutsy during the hematology/oncology consult one day before being admitted because what they told her about the procedure was contradictory to what she had heard and she couldn't handle it. She was completely fine with having the line put in and dealing with any pain associated with it.. And she was completely fine with not being able to move around for days. All she asked was to not have the blood pressure cuff on all the time (she was fine having her blood pressure taken as often as they wanted and having to wear the cuff if her pressure went too high or too low) and to be inclined enough during the pheresis so she could read or be on her computer (hematology/oncology told her she would have to lie flat on her back).

 

They told us they were going to postpone the procedure by a day and that she would have to meet with a psychiatrist the next morning who would determine if she was capable of having the procedure or if she was at risk for pulling out the line. She told them she would not meet with a psychiatrist but I convinced her that if she wanted the procedure she would have to.

 

The next day she was perfectly calm and ready to turn things around. We waited almost an hour for the psychiatrist to arrive. He came complete with a police escort out of fear that DD would become aggressive with him. He had the policeman walk right in front of her twice to try and scare her (it did not). Actually, the only thing he had to fear was her foul mouth (and she did tell him off!). He was one of the strangest psychiatrists I have ever met (I think he was a descendent of Bruno Bettelheim!) and he knew very little about PANDAS. Also did not know what ASD meant. I tried to explain that it was just her heightened anxiety from the PANDAS and once they admitted her she would be fine and that she would be too scared to pull out the line. He interviewed both of us together and separately and laid down rules that neither of us could interrupt. Yet, every question he asked he kept interrupting us and tried to twist what we were saying. It was almost like it came right from a movie script. He admitted to me that he pushed DD's buttons on purpose, which only antagonized her more. At the end they told us to go back to the hotel and wait while they made their decision. We waited and waited and waited...

 

NO ONE EVER CALLED...

 

Finally, 24 hours later, we found out they would not take her. So we flew back home minus $1200+ for airfare, food, and hotel!

 

Turns out, the head of the pheresis dep't was away on vacation. Supposedly this NEVER would have happened had he been there.

 

Call us crazy, but we're going to try again in October. I have waited 5+ years to do this!!

 

I hope no one here ever has to go through this!

Edited August 20, 2010 by NancyD

[dut]

I'm so very sorry you had to go through this. Hopefully, next time you'll get better staff, who really want to help.

[amy s]

OMG Nancy I am so sorry for all you and your family are going through/have been through. I can only imagine the feeling of waiting there for over 24 hours for their decision to be made only to have it not go through. I am so sorry for your heartbreak. You are such a wonderful mother...keep up the fight! My heart goes out to you.

[philamom]

My heart really goes out to you! The psychiatrist sounds like a real *@^#!! I would think there's an easier way to work around a fear of a blood pressure cuff. I hope it goes a LOT smoother next time!

[thereishope]

O...M...G...I'm speechless. I am so sorry. ....I am secretly happy she told them off!

[bubblegum]

If they only knew how difficult it is in the first place to get our children to these appointments!I am not the type of person to complain but I would contact someone in the hospital(Usually there is some type of patient advocate)and I would make a complaint thus this Psych MD would not be able to do this again to someone else!It is Psych 101 that you don't want to push someone buttons on purpose and using a calm approach is alot more effective.Also if he was concerned regarding his safety he should have had security out in the hall and could have called him if necessary.So sorry that you have to repeat the trip and I hope that it will be successful!

[melanie]

Sorry for what they did to you and your DD.How dare they,sorrry but how dare they..I dont really get the Psychiatrists part in the whole thing.wasnt there a MD prescribing the Plasm??Where were they?

 

Was this throught Dr L?

 

So Sorry and I know what ASD is a little to well

 

Melanie

[saidie10]

We were SO CLOSE...

 

DD14 threw a nutsy during the hematology/oncology consult one day before being admitted because what they told her about the procedure was contradictory to what she had heard and she couldn't handle  it. She was completely fine with having the line put in and dealing with any pain associated with it.. And she was completely fine with not being able to move around for days. All she asked was to not have the blood pressure cuff on all the time (she was fine having her blood pressure taken as often as they wanted and having to wear the cuff if her pressure went too high or too low) and to be inclined enough during the pheresis so she could read or be on her computer (hematology/oncology told her she would have to lie flat on her back). 

 

They told us they were going to postpone the procedure by a day and that she would have to meet with a psychiatrist the next morning who would determine if she was capable of having the procedure or if she was at risk for pulling out the line. She told them she would not meet with a psychiatrist but I convinced her that if she wanted the procedure she would have to. 

 

The next day she was perfectly calm and ready to turn things around. We waited almost an hour for the psychiatrist to arrive. He came complete with a police escort out of fear that DD would become aggressive with him. He had the policeman walk right in front of her twice to try and scare her (it did not). Actually, the only thing he had to fear was her foul mouth (and she did tell him off!). He was one of the strangest psychiatrists I have ever met (I think he was a descendent of Bruno Bettelheim!) and he knew very little about PANDAS. Also did not know what ASD meant. I tried to explain that it was just her heightened anxiety from the PANDAS and once they admitted her she would be fine and that she would be too scared to pull out the line. He interviewed both of us together and separately and laid down rules that neither of us could interrupt. Yet, every question he asked he kept interrupting us and tried to twist what we were saying. It was almost like it came right from a movie script. He admitted to me that he pushed DD's buttons on purpose, which only antagonized her more. At the end they told us to go back to the hotel and wait while they made their decision. We waited and waited and waited...

 

NO ONE EVER CALLED...

 

Finally, 24 hours later, we found out they would not take her. So we flew back home minus $1200+ for airfare, food, and hotel!

 

Turns out, the head of the pheresis dep't was away on vacation. Supposedly this NEVER would have happened had he been there. 

 

Call us crazy, but we're going to try again in October. I have waited 5+ years to do this!!

 

I hope no one here ever has to go through this!

 

I am completely flabbergasted and speechless too! Unbelievable!!!! I am so so sorry you and your daughter had to go through this. This is completely unacceptable.

[RNmom]

We were SO CLOSE...

 

DD14 threw a nutsy during the hematology/oncology consult one day before being admitted because what they told her about the procedure was contradictory to what she had heard and she couldn't handle  it. She was completely fine with having the line put in and dealing with any pain associated with it.. And she was completely fine with not being able to move around for days. All she asked was to not have the blood pressure cuff on all the time (she was fine having her blood pressure taken as often as they wanted and having to wear the cuff if her pressure went too high or too low) and to be inclined enough during the pheresis so she could read or be on her computer (hematology/oncology told her she would have to lie flat on her back). 

 

They told us they were going to postpone the procedure by a day and that she would have to meet with a psychiatrist the next morning who would determine if she was capable of having the procedure or if she was at risk for pulling out the line. She told them she would not meet with a psychiatrist but I convinced her that if she wanted the procedure she would have to. 

 

The next day she was perfectly calm and ready to turn things around. We waited almost an hour for the psychiatrist to arrive. He came complete with a police escort out of fear that DD would become aggressive with him. He had the policeman walk right in front of her twice to try and scare her (it did not). Actually, the only thing he had to fear was her foul mouth (and she did tell him off!). He was one of the strangest psychiatrists I have ever met (I think he was a descendent of Bruno Bettelheim!) and he knew very little about PANDAS. Also did not know what ASD meant. I tried to explain that it was just her heightened anxiety from the PANDAS and once they admitted her she would be fine and that she would be too scared to pull out the line. He interviewed both of us together and separately and laid down rules that neither of us could interrupt. Yet, every question he asked he kept interrupting us and tried to twist what we were saying. It was almost like it came right from a movie script. He admitted to me that he pushed DD's buttons on purpose, which only antagonized her more. At the end they told us to go back to the hotel and wait while they made their decision. We waited and waited and waited...

 

NO ONE EVER CALLED...

 

Finally, 24 hours later, we found out they would not take her. So we flew back home minus $1200+ for airfare, food, and hotel!

 

Turns out, the head of the pheresis dep't was away on vacation. Supposedly this NEVER would have happened had he been there. 

 

Call us crazy, but we're going to try again in October. I have waited 5+ years to do this!!

 

I hope no one here ever has to go through this!

 

I am completely flabbergasted and speechless too! Unbelievable!!!! I am so so sorry you and your daughter had to go through this. This is completely unacceptable.

[RNmom]

I am so sorry to read this. I cannot believe the psychiatrist intervened by showing up with the police and intentionally "pushing your daughter's buttons." That makes her into a criminal rather than an anxious patient. I would have hoped that Georgetown University Hospital would have a psychiatrist on staff who understood "therapeutic approach" and "therapeutic support." My ds14 just had plasmapheresis in the Georgetown ICU. The nursing staff was very supportive. The physicians were very kind. They treated him with dignity - the complete opposite of what you are describing here. We did not have to deal with this psychiatrist however. I hope you can go around him in the future. Was he the head of the psychiatric department?

 

Honestly, using the police as a "therapeutic tool" does not strike me as "best practice" no matter what the psychiatric diagnosis. Definitely try again when the head of the pheresis department is back from vacation. All the best to you and your family.

[momto2pandas]

Wow, so sorry (and upset) to hear this story. What a crazy thing! I really admire your "we'll try again next time" attitude though!

[Worried_Dad]

Oh, Nancy... that just plain sucks! So sorry this happened to you. We had a similar experience about 18 months ago when we tried to get IVIG done locally ( http://www.latitudes.org/forums/index.php?showtopic=4447 ) - not nearly as brutal as what you just experienced, but I can empathize.

 

Based on our experience back then, though, I think you're doing exactly the right thing by pushing forward and trying again. We ended up delaying while we tried (in vain) to find some other way to get IVIG done locally; 6 weeks later, our son had his worst PANDAS exacerbation ever. I've often wondered how things might have gone if we'd gotten that 2nd IVIG as planned.

 

Have you spoken to Dr. L about this (I'm assuming she ordered it)? From what I know of her, I'm sure she'll be livid that your daughter was treated this way and will do everything in her power to get you that procedure ASAP. Don't give up!

[NancyD]

Thank you everyone!

 

Gatito said it best..."If they only knew how difficult it is in the first place to get our children to these appointments."

 

Yes Melanie, the plasmapheresis is through Dr. L, but this is absolutely no reflection on her, her staff, or the plasmapheresis staff. Dr. L and her staff are FABULOUS and they go above and beyond! And from what I have heard the pheresis staff is fantastic too. Unfortunately we never had an opportunity to interact with the pheresis staff. I asked many times to speak with a pheresis nurse but they kept putting me off. I can understand that they were being VERY cautious since they had an older male patient recently rip out the line and I can understand that they would have us see a psychiatrist. BUT...like Philamom suggests, this psychiatrist was a real "*@^#!!"...and like gatito said, "if he was concerned regarding his safety he should have had security out in the hall and could have called him if necessary."

 

At one point this psychiatrist said to me, "Did you know that Dr. L is considered to be the most aggressive doctor who treats PANDAS?" I ALMOST said, "NO ######, THAT'S WHY I'M HERE!" But I bit my tongue. Vickie, I too was secretly applauding DD for telling him off, although I knew she was destroying any chance of ever turning this around. Oy, you should have seen how she told him off!

 

This psychiatrist, who shall remain nameless (PM me if you want to know his name), tried "shrinking" me (as if out of a movie script). He looks up, he looks down, he struggles to get the proper words out..." This must be R-E-A-L-L-Y D-I-F-F-I-C-U-L-T for you to deal with" or something like that. I wasn't sure if he was looking for me to cry, break down, or jump down his throat, but I just smiled and said, "I have a good support system and I do what I have to do for my daughter." What I really wanted to say was, "only when *@^#!* like you stand in the way of parents like me who are trying to help their children."

 

Then this psychiatrist asked me what I did for a living. I told him I run a non-profit and train doctors how to screen children for ASD. He wanted to know what ASD was! Then he quizzed me on whether I had a PhD or Masters. IS THIS REALLY GERMANE TO THE SITUATION AT HAND?!!

 

I definitely want to file a complaint with the head of the hospital, HOWEVER, I do not want to compromise DD's chances (or those of any other children) of getting plasmapheresis in the future. On the other hand, this is the first time this psychiatrist has seen any PANDAS patients. And, if he is going to see many more PANDAS patients down the road (as I know he will), the hospital needs to know that his approach is inappropriate and unacceptable. The anguish and emotional distress that he caused, not to mention the financial loss, could have been avoided completely if he had handled this in a more professional and compassionate manner. This was like psychiatry out of the early 1900s!!!

 

SO, WHAT DO YOU THINK...SHOULD I SEND A LETTER NOW OR NOT?

 

Nancy

[matis_mom]

That is unbelievable! Who does that psychiatrist think he is helping??? I would be so mad. But then again, everything happens for a reason. So be at peace that it was not meant to be now and hopefully soon it will happen. In the meantime, I would so write a letter to Georgetown about the whole incident.

Hang in there!

[NancyD]

Michael, I did not speak directly with Dr. L. Just with Andrea who works for her.

 

RNmom,were you there this week? Andrea said I would not have to deal with him again. I hope this is true. In fact, she encouraged me to write a letter before leaving DC. Was your son inclined enough to be able to read or be on a computer or was he lying flat on his back? Was he allowed to get up and pee before/after the pheresis. They told me she would have to use a bed pan during the entire stay. This, I believe, is wrong too. I could go on and on with the many discrepancies...