It is also the name of our daughter's neurologist. Of course, his name is not Saint Martin exactly, but the Catalan translation of this name. We had yet another meeting with him this past week to discuss Matilda's condition, progress, medication, and seizure control. It must be said, before updating on our most recent visit, that Dr. SM and I do not have the best relationship. I think he finds me to be an outspoken American, and he does not like when his patients' parents ask questions. And I ask questions. What mother doesn't? Apparently, all of the other mothers he deals with, as he tends to get quite argumentative with me when I ask him to look at our daughter's case on an individual basis, and not to just pump her full of drugs because that is 'how you treat Dravet Syndrome.' (Said with a stern look, and a cursory glance at Jordi as if to say: 'Why on Earth did you marry this pushy American woman?') Matilda does have the genetic mutation that is associated with Dravet Syndrome, and she certainly does have many of the characteristics - but her mutation is in a different position (whatever that means, though apparently it is a good thing in this case), and therefore she is not presenting as severe as many of the other children who have this diagnosis. She has far fewer seizures, always associated with a fever, and though she does have some difficulty with motor control as well as speech and cognitive delays, she is progressing with the aid of her speech therapist, psychologist, and physical therapist. We had to fight for those things, however, as when I first questioned this doctor of the possibility of getting her started with physical therapy about a year-and-a-half ago, his response was: 'Motor skill issues are part of the syndrome.' As if this means that she is hopeless, and there is no way to improve her coordination. Dick. (Sorry for the expletive.) Anyway, he really hates it when I ask about different medications or lowering certain ones (especially when I suggest that the reason our daughter has stopped eating/sleeping/walking well/etc. has something to do with one of his precious prescriptions that still has yet to get our daughter's seizures under control). Again, dick. (Apologies.)
So on to last week's appointment. I had encountered another mother whose daughter has the same diagnosis, and she has been seizure-free for 15 months. Her medication is different than Matilda's, so we wanted to ask about this med for Mati. However, knowing the doc's love and respect for yours truly, I made Jordi ask him. Man, the response was off the charts. He got really pissed off, pounded the table, looked directly at me (recall that I did not utter a word!) and said 'It is always the same with you, you want to change everything. If you don't have confidence in your doctor, you should change. It wouldn't bother me. (Note: I actually think he would prefer it - maybe he was being mean to me in the vein of how guys are mean to girls when they want the girl to break it off with them.) There are just two ways to treat this syndrome, with this, this, and this, or what you are currently using. You didn't like the previous three medications (Note: Matilda woke up EVERY night from 2 to 5 am, hyper and ready to party - would you like that medication? Maybe she could have bunked with Dr. SM for the six months of sleepless hell that was Stiripentol.) Switch doctors, it wouldn't bother me.' Again, this was all directed at me! There were two student doctors in the room, both looking baffled and a bit wary of their 'mentor' doctor.
What shall we do? To find a new neurologist would be difficult, as he is the chief of the neuro crew there. Maybe with Obamacare being upheld by the Supreme Court, it is a signal to us to make the move to the US where most doctors seem to have a better handle on bedside manner.
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