July 31, 2013

Awkward Appointment

   This week we saw my all time favorite neurologist.  Not!!  We have not actually seen Sadie's neurologist since I think Sadie was maybe 5 mo or so.  I don't remember, but I do know it has been a very long time.  I had so much anxiety the days leading up to her appt.  I had to take a sleeping pill the night before because I just could not sleep.  That's ridiculous!  All over a dang Dr.
   I had so much to say to this Dr, I did not even know where to begin cause it had been such a long time since we had seen him and so much has happened.  I did not want to come across as a you know what, but at the same time I wanted him to know how upset I was about everything that has gone down over the last year or so.
   I took a deep breathe and walked in with a smile on my face.  He also came in with a smile on his face.  However, you could cut the tension in that room with a knife.  He obviously had a little bird that whispered in his ear from my past appts with other providers that I was not a happy camper. I was fine with that.  I kept calm and listened to what he had to say (which honestly wasn't much of anything), we made a plan for her next MRI, and he "looked" at her.  His looking at her consisted of checking her joint reflexes (which I'm not sure why he checked since she has never had an issue with these), and talking to her.  He then turns to me and says "have you had her hearing checked, she doesn't seem to be responding".  REALLY?!  Did he just say that me?  I couldn't speak.  I just sat and stared at him for a moment trying to figure out how to respond.  Calmly, I said "yes, it has been checked." and I left it at that.  He didn't ask the results and I didn't feel like telling him.  So obviously, he has not read her chart or looked into the diagnosis of PTCD or he would have known.
   He then starts talking about mito and how hard it is to diagnosis.  That is when I had to open my mouth.  We chatted about all the things that have gone wrong with trying to diagnosis her.  The issues I have had with this office when it came to the muscle biopsy.  How I felt like he didn't care about my daughter and how I felt like he was unwilling to fight for her.  He then stated that a lot of the issues were out of his hands.  I understand that, but I honestly believe he could have tried harder and he could have done better with communicating with me along the way so it could have at least appeared like he cared.  I then informed him that we were seeing a peds neurogeneticist for her mito over at U of M in the middle of August and hopefully she will have better luck diagnosing Sadie.  Silence...
  He then changed the subject.  He started talking about her "new" diagnosis (PTCD, which she has been diagnosed with since December so it's not really new anymore).  He was asking ME questions about what it is!  WHAT?!  Isn't HE the neurologist?  Shouldn't HE have looked up the diagnosis prior to our visit?  I understand that it is a rare, new diagnosis to the world, and I truly do not mind educating people (including Dr's) about the disorder. I understand that no one can know everything about every disease/disorder, however, if you were a Dr (a neurologist especially) and did not know what the disorder was, wouldn't you look it up prior to your patients appointment so that you have a least some sort of an idea what it is?  Her other Dr's have.  It's not hard to find info on PTCD.  As my blood is boiling and I am explaining PTCD to him, he then interrupts me and says "and who gave her this diagnosis?"  I then proceed to tell him that since I believed that she was misdiagnosed and it takes at least 8 -10 mo to get into see him and that there seems to be a lack of communication in this office, I had to go elsewhere to get her diagnosed.  I explained how I found this diagnosis and that it fit her more then PCH so I sent her MRI to this other neurologist and research study and he confirmed that I was correct about her being misdiagnosed.  He was not happy that I did this and stated that he needs to look at her MRI again because he still believes that it is PCH.  I explained that PTCD is in the family of PCH.  He became quiet and did not say anything more about this subject.
   At the end of the visit it was pretty obvious that neither one of us were happy.  He states "well, if you don't feel confident in her care with us, you are welcome to find her a new neurologist".  I said "I know, I just wanted to give you the benefit of the doubt and attempt to see you again".  We were both silent for a moment.  He then turns to Sadie and says "well young lady I hope to see you again" and "shakes" her hand.  I replied "yep, maybe" and (because she hates being touched) she ripped her hand out of his.  It was perfect timing on her part.
   I'm pretty sure this visit ended our relationship with this neurologist.  However, I'm a little conflicted about the situation.  This neurology office is the only peds neurologist in the area and the only neurologists that services our local children's hospital.  This is the hospital that Sadie goes to for everything.  I feel like I should continue seeing them so that they are aware of who she is and what is going on with her so that she can have the best care if she is ever hospitalized for something neurological. However, at the same time, I have so many ill feelings towards them that I never want to deal with this office again.  I don't know what to do.  I guess I will just have to wait until Sadie's appt with the neurogeneticist (mito Dr) in a couple of weeks to make any decisions about changing Dr's.

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