Join Date: Jun 2006
Location: Villa Incognito
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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?