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Would you fire your neuro for this?

post #1 of 26
Thread Starter 
I just feel really let down by our neurologist. She asked me a month ago if I would be willing to come speak to a room of residents about DD and her Infantile Spasms, and our choice of medication for her. (the med we picked was only recently FDA approved) She made a lot of complimentary comments about how well spoken and researched I am, and how the residents can really learn from the parents perspective. I agreed and thought it would be a nice experience. I come an hour early to do an exam before the lecture, and she says to me, "I want to warn you that the point of my presentation is to look at the correlation between stroke patients and epilepsy and how IQ is significantly lower in stroke patients that go on to develop epilepsy." Then I had to sit and watch 20 minutes of slides about how low IQ scores were in the epilepsy post brain injury group, and how in some studies IQ declined throughout childhood. It was horrible.

I felt totally blind sided, and frankly I NEVER would have agreed to come had I known that was the topic. One of the hardest things I do as a new mom of a SN kid is to walk the tightrope of hope vs worst case scenario. I feel like she really upset that for me, and I spent two days a mess and super upset. I am back to hating mainstream doctors. She had me so hopeful that they all don't suck... but this was just super selfish and disrespectful. I did however, just go in to see our ped who is amazing-and super hopeful- just to sort of cancel the other doc out.

So I was in major shock when I left the hospital, and did not say anything to the neuro, but our ped thinks I should tell her that was totally unacceptable. She is a fellow and her fellowship is over in June anyway and she moves into adult stroke instead of ped stroke- so we would likely be transferred to another doc anyway. I am thinking about write our neuro an email telling her how crappy I think what she did is, and ask her to transfer us to the senior ped neuro in the stroke clinic. My DH thinks I am overreacting- as he has really liked this doc, but he was not there... he wasn't invited to the school under false pretenses. And the fact that she warned me 10 minutes before the lecture means to me that she knew it would be sensitive but she did not have the respect to tell me before I said I would come. KWIM?
post #2 of 26
Dropping into this forum as I saw this on the main board/updated posts and now that I read your post, I have to say that what your doctor did was totally unacceptable and dishonest. I would write her a letter about it and copy the senior doctor she works with so that everyone recognizes that is not an OK way to treat people, particularly those in your care. Maybe it will prompt some discussion at a staff meeting and some expectation of full disclosure when you ask a patient to help you out like that.

IF you are ever in that sort of situation again, you are totally free to walk out. It's hard to realize and act on that when you are in that stunned state, at least for me it is.

I can feel your distress in your post and I'm sending you some hugs. I'm sorry that this happened.

ETA - My decision to fire her or not would depend on her response to my letter, provided all care and interactions with her had been positive to date.
post #3 of 26
I would write a letter, and take both the professional and parent approach. She asked you to speak to a group of residents to share your experiences, however she did not adequately prepare you for the content of the discussion. That is an unacceptiable professional practice. It was irresponsible and wasted your time. She should have told you up front what her approach would be and notified you if there were any changes. She also short changed the students by not making sure her guest speaker was prepared.

In addition, she skewed the bounds of her professional relationship with you. I speak to nursing students on a regular basis about community health nursing (which is what I practice). If I was treated as you were, I would have not come back. However, you are still in a relationship with her, and she has violated your trust. She needs to understand the significance of that.

I would be open and honest, I would also CC her supervising physician. If she does not learn the lesson now, she will go on treating patients this way.
post #4 of 26
Thread Starter 
Can I email them, or should I write an actual letter?
post #5 of 26
Real letter. paper and a stamp.
post #6 of 26
I am sorry you had that happen. That's awful. I would be livid. I'm glad you're writing. She needs to know what she did was unacceptable.
post #7 of 26
And consider sending a copy to the licensing board. Or at least say that you are considering such action because you were intentionally misled which means lied to so seriously unethical.
post #8 of 26
Quote:
One of the hardest things I do as a new mom of a SN kid is to walk the tightrope of hope vs worst case scenario.
I am so sorry this happened and I couldn't agree MORE with the above statement. It is such a hard line to walk and keeps me in knots. To me, the balance between hopeful and panic-stricken is just so so fragile and being blindsided like that would be horrible.

I do hope you write a letter and I have "fired" a neurologist for less so I think you're well justified in seeing another doctor.
post #9 of 26
Quote:
Originally Posted by askew View Post
She is a fellow and her fellowship is over in June anyway...
First, . I would have felt absolutely terrible with this experience. And like you, my reactions are stunted until the immediacy of my shock/anger has subsided. My advice: Direct your letter to her fellowship supervisor (s).
post #10 of 26
If I had an otherwise good relationship with this doctor, I would talk to her face-to-face. She was extremely thoughtless, not malicious. She can be educated. I would level with her about how you felt and how you would have liked some more information about the presentation, because you would not have sat through it if you had known.

I'm so sorry that happened to you. That totally sucks.
post #11 of 26
Thread Starter 
I don't even know where to start writing the letter. Talking to her face to face isn't really an option, she is over an hour away and we have way too much going on for the next two weeks. My boss in town, my mom in town, DS on spring break. If I wait two weeks I think it will have less impact.
post #12 of 26
Quote:
Originally Posted by askew View Post
I don't even know where to start writing the letter.
Start with this.

Quote:
Originally Posted by askew View Post
One of the hardest things I do as a new mom of a SN kid is to walk the tightrope of hope vs worst case scenario. I feel like she really upset that for me, and I spent two days a mess and super upset.
She used you without fully informing you of what was going to happen or considering the impact it would have on you.

The letter doesn't need to be long, short is most likely better. It needs to be clear and explain the impact this had on you, but anger won't help.

I think a formal letter copied to her boss (with the little CC and the boss's name on her copy) is in order.

I'm very angry at her because of what she did. I totally get the "walking the tightrope of hope vs worst case scenario" thing because that's where I've been living for years. Professionals who work with kids with sn need to know about this aspect of parenting a sn child and that it's part of there job to not screw with that for us.
post #13 of 26
Wow, that was insensitive. I am not sure she had bad intentions but whoa.

You said:

"One of the hardest things I do as a new mom of a SN kid is to walk the tightrope of hope vs worst case scenario"

and I just wanted to say that I totally get this. It's really a hard thing and so few understand. In fact, I don't think I've met anyone IRL who does.
post #14 of 26
Your letter is written already, it's your first post. Maybe switch some words around, but the hard work is done.

You could even write an introductory sentence or two saying "I wanted to write a letter to you, but didn't know how to start it. So instead I'm going to copy and paste a journal entry I made the day of the workshop." Then paste what you wrote here.
post #15 of 26
that is TOTALLY rotten. i am so sorry you had to experience that.

if you have choices of other good neurologists, i would absolutely fire her. and definitely let her know why.

you, and your little one, are in my thoughts. as if seizures aren't hard enough to deal with
post #16 of 26
Quote:
Originally Posted by RiverTam View Post
If I had an otherwise good relationship with this doctor, I would talk to her face-to-face. She was extremely thoughtless, not malicious. She can be educated. I would level with her about how you felt and how you would have liked some more information about the presentation, because you would not have sat through it if you had known.

I'm so sorry that happened to you. That totally sucks.

Just want to agree with this FWIW.
post #17 of 26
Dear Dr. Neuro,
When you asked me a month ago if I would be willing to come speak to a room of residents about DD and her Infantile Spasms, and our choice of medication for her, I was happy to come. I had learned from you how the residents can really learn from the parents' perspective. I thought it would be a good experience.
When you warned me that the point of my presentation was to look at the correlation between stroke patients and epilepsy and how IQ is significantly lower in stroke patients that go on to develop epilepsy, I felt totally blind sided, and frankly I NEVER would have agreed to come had I known that was the topic. One of the hardest things I do as a new mom of a special needs kid is to walk the tightrope of hope vs worst case scenario.
And the fact that you warned me 10 minutes before the lecture means to me that you knew it would be sensitive but you did not have the respect to tell me before I said I would come.
Then I had to sit and watch 20 minutes of slides about how low IQ scores were in the epilepsy post brain injury group, and how in some studies IQ declined throughout childhood. It was horrible.
The worst outcome of this is that I have spent two days a mess and super upset. I am back to mistrusting doctors... this just feels super selfish and disrespectful.
For the future, I'd like the senior ped neuro in the stroke clinic to take care of my daughter.
sincerely,
post #18 of 26
Oh my! I can't believe she did that!

Did you go ahead and do whatever your part was? I don't think I would have been able to do or say anything at that point.

I agree with writing the letter. Soon.

post #19 of 26
Holy Crap!!!!

Yes, I would fire her. We have numerous friends and acquaintances who are completing their fellowships or have completed a fellowship in different specialities, and even my bff's dh (plastic surgeon) w/not a lot of personality if you don't know him, would NEVER have pulled that stunt. That is soo disrespectful.

FWIW, most docs who are drawn to neuro aren't exactly known for their sparkling personality and interpersonal skills...but that even oversteps that!

Yikes! Sorry that happened to you. I would definitely write the neuro a letter stating your complaint, as well as her supervisor.

GL!

mrsfru
post #20 of 26
Apricot's letter is beautiful.
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