Today, though, the gloves came off.
As you are well aware, we are trying to navigate this new world of seizures. We chose the neurology department we did because they are associated with the center B was diagnosed with Aspergers, and it's also the same hospital that's affiliated with his GI. I like to keep things under one roof if I can.
At first, I thought things were going swimmingly. We got our initial appointment just a few days after his first seizure, and ended up getting his EEG the day after his second (not that there wasn't some drama there, as the doctor made it sound like an emergent situation, until she called back and said there were no openings the next day, so it was fine to wait until the following week. Dear doctors, let me fill you in on something: once you say something is emergent, it stays emergent in a parent's mind. You can't come back and change your mind. Also, thank goodness for cancellations).
I was promised a call back the same day as the EEG (a Friday), and that we would discuss further testing and the follow up appointment then.
But the call never came, and I went into "too nice" mode. Ben isn't her only patient. I can't expect answers immediately (even if promised them). It's fine, I'll just wait...
Friends prodded me to page the on-call doctor Saturday, though, to get the results. I did, and was glad I did. I really wanted to know, I was just slipping into my "too nice" ways, and pretending I was fine waiting until Monday.
Monday came, and the neurologist finally called. I had 1000 questions, but she didn't want to go into depth until we met face to face. The next week or two we'd be able to meet. She'd have them call me the next day to set up an appointment.
Again, no one called. Twenty minutes before I was to leave to get the kids from camp, I called the clinic myself. After a very long time on hold, I was told we could come in Aug 26th.
Three weeks away.
Also, we had planned a much anticipated camping trip, and would be gone the 26th. But that was neither here nor there. The 26th was unacceptable. I was not waiting three weeks to get any answers, a school plan, or talk about further testing (which the neurologist already told me she wasn't planning...?).
Back on hold I went, after the very rude admin lectured me on when Attendings work, and how I wasn't allowed to see the resident without the attending there. Fine, I get that. I'm still not waiting until 2 days before school starts for an appointment, though.
After another 20 minutes, I'm told the best they can do is the 23rd, with a totally different doctor. By this point, I had already decided I was transferring to another hospital, but I politely (or maybe no so politely) thanked her and hung up the phone.
Maybe my expectations are too high, but my kid had 2 grand mal seizures in a week, and I want to pinpoint where they are coming from (if possible), why they are happening (if possible), discuss medication choices in detail, and do further testing. A MRI. Extended EEG's. Heck, I even want genetic testing done, because I know our insurance will pay for it, and I want to cover all bases. What I don't want is to float around in limbo until the end of August, or September, even, because "that's just the way it works".
It would be different if the doctor was willing to tell me anything over the phone, but she's not. I don't know why. I don't know if that's common practice. The fact that I can't get one teeny question answered without a face to face means I better get that face to face ASAP.
What it boils down to is that I'll never be happy with this practice. They don't care about their patients the way they should. They don't care that parents, brand new to the world of seizures, are scared and can't wait almost a month to talk about...anything.
Thankfully, I have great friends. Great friends who have experience with this, and who call their neurologists to asks what they can do for me. Who explain B's situation, and ask when we can be seen.
So, now we have a plan. I've already left a detailed message for our pediatrician, who only needs to call the new hospital and say B needs to be seen in the next week or two, and they'll fit us in. Unlike our current practice who won't even go out of their way to feign niceness to a scared mother.
So, Massachusetts General Hospital (yeah, I'm naming names), you are fired. I will tell friends to look elsewhere when their child needs a specialist. No one deserves to be treated the way we were these past couple of weeks. Maybe seeing another kid with a seizure disorder is no big deal to you, but it's a big deal to that kid and his parents. At least learn to fake concern.
I'm glad I found the strength to stop being nice. This is my kid we're talking about. I'm done being nice.
I’m not ready to make niceI’m not ready to back down
I’m still mad as hell and
I don’t have time to go round and round and round
It’s too late to make it right
I probably wouldn’t if I could
‘Cause I’m mad as hell
Can’t bring myself to do what it is you think I should