When Good News Isn't Good News
Who would have thought this horrible form of epilepsy would have stemmed from one grand mal seizure on January 20th, just six short months ago.
The Doodle has been on a fast-track to Hell as the seizures increase and get worse every single day.
I'm not going to knock the medical intelligence of the few doctors and nurse practitioners I've dealt with at Stanford. They most certainly know their stuff. They are the best of the best. What bothers me is their terrible bedside manner. They have zero compassion and when they deliver what might seem like good news, they are quick to be matter of fact that it is not; so wipe that smile off your face.
Like ripping the carpet out from under you, they don't want you getting off the phone with even a trace of hope. Fine. But check your giant medical egos at the door and stop being offensive and self-important when talking to a distraught parent at their wits end.
I believe that because some of these Doctors don't know everything about epilepsy that when they feel cornered with questions they cannot answer, they are quick to be short with you instead of taking the high road and just saying, "I don't know".
Now that I have an appointment at UCSF and because we've already been seen at Stanford, even though they made it clear that they were not OUR DOCTOR...they aren't quick to part with critical test results and copies of the video eeg. I just called the Nurse Practitioner, again, to re-ask for the results and got a nasty message back that the odds that I would have the items in time for our appointment next week were slim because they were really busy there with all of the "really sick children". WTF? My child isn't sick? A severe form of untreatable epilepsy might categorize the Doodle into being "really sick" I would think. Are 60 seizures a day not enough to classify a little boy as "really sick"? So I called her back and left her a message explaining that I must have had a bad connection, because it seemed to me I heard her insinuate in my voicemail that my child wasn't sick enough to get any kind of expedited service and get copies of test results which we have paid greatly for. I reminded her that we still had not received the results of our Genetic Testing that was done back in May.
She phoned me back and assured me that our test results were sent out to us and our local neurologist on June 1st. I told her again that neither of us received the results. I asked her to fax it to me and she refused. She said she would put it in the mail today and "hopefully" I would have it by next Monday in time for our UCSF appointment.
We also had a conversation as to what my goal was by going to UCSF; which I thought was the oddest question ever. I told her obviously my goal was to get the seizures under control and see a Pediatric Neurologist for the Doodle's rare and untreatable form of epilepsy. That they have gotten 3 times worse since we were seen in May at Stanford. I told her I was hoping they could do a surgical procedure with their cutting edge technology and she quickly dismissed that idea--telling me that Doodle Bug is not a candidate based on his type and generalized location of the seizures. She even used the word "mentally retarded". Nice.
We talked further about the genetic testing for Fragile X, Angelmen's Syndrome, and Prodder Willy that were done and came back normal. Originally when I found out from her Doodle Bug did not have these, I was so very happy. Yay. This Stanford Nurse Practitioner was quick to squash my happiness by telling me..."Just because he doesn't have one of those, he probably still has some form of dna corruption and that they will just have to keep testing him for different things. If those come back normal, that also is not good news. It only means they don't have a genetic test yet for what he does have."
Please. Please. Please be nice considerate people at UCSF. I know they too will be very knowledgable, but I don't think I can take dealing with another Asshole with a superiority complex. I appreciate that these people know what they are doing but I would like to put on the Stanford feedback form that they need to take a course in human relations and get their empathy chip checked.