This seems like common sense, I know, but nonetheless I needed to hear it. Brian and I were sitting in a conference our "regular" neurologist had called in response to an email I had sent her following our slightly disastrous first appointment with an epileptologist (a neurologist that specializes in epilepsy).
We'd been referred to the epileptologist following Simon's most recent status seizure. The consensus of the many medical professionals following Simon has been to advise us to seek more aggressive treatment of Simon's seizures, which have not yet been controlled through medication(s). I imagine that, were they all "normal" (i.e. short) seizures, we'd be directed to keep on keeping on with medicines alone, however the fact that Simon has had 4 status episodes (each carrying significant risk for brain damage, or worse) in increasingly rapid succession is a serious cause for concern. We might not always be as lucky as we have been, and it is time to start taking more intense (or drastic, it depends on your opinion...) measures. Currently up for discussion have been brain surgery to remove the area of activity, the ketogenic diet, more medicines, and/or a VNS implant (the latter 2 options are what I am most interested in presently).
So, enter the epileptologist. The über specialist we need to consult in order to determine viability of options, create next steps, and ultimately set a course of action. Unfortunately, it turns out that there aren't that many pediatric epileptologists around, and of the three that work with Simon's neurosurgeon two are not taking patients and the third had a six-month waiting list for new patients. Fortunately, a waiting list is no match for this mom. Knowing how many times we have been in the hospital for seizures over the past several months, I was pretty certain we had seen every neurologist during "rounds" at some point or other. If this doctor had already seen Simon, we weren't a new patient, and therefore we could have the next available appointment. Sure enough, it turned out that this doctor was the guy we saw during our very first stay in the PICU. He had notes on Simon, we were already "in the system," and so we got an appointment to be seen within the week. (Go me.)
But... uh oh. He's the guy we saw the first time. The big shot epileptologist we needed to see was the same guy that wouldn't take five minutes to talk with us, answer questions, or give us any solid info at all (unless you count him condescending to tell me the medicine he prescribed tasted like cherries, like that was my biggest concern. Personally, I don't count that). This was same guy that walked away from me when I asked him questions while standing over my four year old son's comatose body in the pediatric intensive care unit. This was the guy I had to rely on to help us.
Well, crap.
When I wrote to our neuro to tell her I had made the appointment I also (as tactfully as I could) mentioned that I was concerned about the demeanor of the doctor we were being sent to based on prior experience. I asked for her guidance and she advised me to go in with an open mind, and remember that I am a much more educated mom now that I was 2 years ago. She also said that she would email the doctor in advance to discuss both Simon's history and to let him know that Simon's parents are very involved and educated.
If only that had worked.
I can honestly say that in over six years of dealing with many "créme de la créme" of the medical profession, Brian and I have never ever been treated the way we were during this appointment. I won't go into the gory details, but after 15 minutes of talking at us, ignoring Simon (but petting Tigger), suggesting that we "scoop out" part of Simon's brain, repeatedly contradicting himself and other doctors we have consulted, completely dismissing our concerns, and behaving more than a little like a bully when I told him we aren't currently interest in allowing Simon to participate in his research project... he looked at the time and then walked out on our appointment while I was in the middle of asking him a question.
I considered following him. Making him answer my questions fully, making him recognize that he can't dismiss this parent so easily. I've done it before. But those were different circumstances -- I was following the doctor not because he hadn't answered me, but because I hadn't understood fully, or had realized after he left that I needed more information.
This was different. This time, I realized that I didn't want this doctor's help, and he wasn't good enough for me to try to teach a lesson to. If he couldn't deign to answer my questions, if he contradicted myriad other professionals with merely a shrug, and if he thought that it was ever okay to bully a parent into participating in his research before giving them assistance in other areas -- it was clear that he was not a person to be trusted, much less a doctor to entrust with the care of our precious son.
I knew this. My gut screamed it. I acted on it, but I also doubted myself. Maybe he was that brilliant that he was entitled to bad behavior? Maybe he was Simon's best hope and what if I was letting my pride get in the way? He couldn't be all bad if he had other patients and so much power in a "world-class" hospital?
What if I was trying too hard, pushing too much, over-educating myself in areas where I had no business having opinions and was therefore endangering my son.
Talk about walking around with the world on your shoulders!
Fortunately, our neurologist does not treat me like an imbicile. Fortunately, she takes the time to listen to her patients, answer questions, and field the frantic emails of worried moms late at night.
When we finally met with her, she didn't seem terribly surprised by the account of our experience with the epileptologist. She understood where we were coming from in wanting to work with someone we could trust, and she offered to contact her colleagues from another very well-respected hospital to get us in for a second opinion (we took her up on this).
What I am most personally grateful for, was that she took the time to let me know that I am on the right track. I often wonder about how other parents in situations like ours cope. I pay attention to snippets of other's experience from the social media groups and email list serves I belong to. Sometimes I find parents like us -- who take it upon themselves to spend sleepless nights learning about their childrens' condition and searching for ways to keep them safe and improve their quality of life. Other times, I see parents who step aside and put all their faith in external sources. Most often it is something in-between. Sometimes I don't know what approach is better. Like everyone, I simply do what I believe is right. I do what I have to do.
I know that resources, education, culture and personality all play a part in determining how people react in extreme circumstances, and parenting a medically complex kid like ours is definitely an extreme circumstance. I try not to judge others, just help, and provide support where I can. But, sometimes, I need know that I am not only doing what I think is best, I need to know that am doing the right thing.
"The children that do best are the ones whose parents are the most involved."
Even a super mom needs a gold star once in a while.
