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Appointment for Worry

  • Posted on July 17, 2013 at 10:00 AM

After Willy had his first major seizure, the one we knew was a seizure, I took him to a neurologist up in Madison. After discussing our family history, I took Alex to the neurologist, too. The neurologist had enough reason for concern to recommend we conducted some additional tests, including a second MRI. At Willy’s last appointment, we canceled Alex’s appointment to discuss the results of his MRI, because the doctor had peeked at the results and declared all was well.

Then, the nurse called and uncanceled the appointment.

Naturally, I was concerned. Was all not well after all? Actually, those who know me better know that I was, underneath a front of my own version of normal, seething with anxiety.

We waited months, of course. We arrived in a rush, of course. Then, to my surprise, it turned out our appointment was never actually rescheduled. It took some persistence with the receptionist, but finally she called the nurse and the nurse talked to the doctor and the doctor, being the conscientious man that he is, agreed to see us.

We met with the nurse, who asked me leading questions. We met with the medical student, who asked more leading questions. I got the impression that we’d missed something, because all those questions were geared toward revealing the changes in Alex’s behaviors that we’d seen.

But, we hadn’t seen any. Alex seemed like Alex, which is far from normal, but it is his own version of normal, so I wasn’t concerned about that! Oh no, what had I missed? What hadn’t I seen? Had I been too busy to notice that something was really wrong with my child?

Then, the doctor came in. I explained why I’m here. He was obviously relieved. He explained what had happened. I was immediately relieved.

The gist of it is this: The nurse was NOT supposed to uncancel our appointment; she was supposed to confirm that the doctor had compared MRI results and verified that there was no significant change to the area of concern and that there was therefore no cause for concern. In short, Alex didn’t need to come back unless we observed significant, worrisome alterations in his behavior. So, obviously, when we showed up for an appointment that didn’t exist, the doctor thought we had observed significant, worrisome alterations in Alex’s behavior.

All that worrying for nothing but a case of the miscommunications! At least it ended with relief.

A Reason Not to Medicate

  • Posted on April 24, 2010 at 1:52 PM

Among my busyness, I recently took the boys to a medical appointment.  I brought up the issue of medicating Alex, because despite my preference not to do so, I recognize that he is experiencing distress and that, like Mark, medication may help Alex smooth out his experience of life.  This doctor is not the one who initiated the discussion, nor is this doctor the one who would be prescribing the medication.  However, this doctor did have a significant insight that I found invaluable.  The medication comes in the form of a bi-monthly shot, so if we choose to medicate Alex we will not also have to choose to put him through the daily trauma of administering medication by mouth.

This is very important to me.  This was a break-through concept that had me thinking maybe.  Then, the doctor spoiled it for me.

From start to finish, our appointment (taking both Alex & Ben at the same time) took about 2 hours.  First, we started in a rather largish appointment room.  By the time we were done that big room was getting rather confining for the boys.  They’d explored everything that had interested them.  They people came.  They talked.  They left.  As far as the boys were concerned, it was time to go.

But then we move to the smaller exam room.  It’s a much tighter space for two active boys and two much less active adults.  The boys were tired, they disliked the transition, and they were done.  No more cooperation.  No more quiet.  They were done.

Knowing my children as I do, living with my children as I do, I knew this was to be expected—I planned on it even.  The boys were loud, anxious, and done.  Yet the appointment was not done.  The conflict was natural.  Their impatience was “normal,” at least for them.  Their behavior—turning off lights to communicate they were done, getting frustrated and loud when their request was denied, moving constantly—was completely predictable, understandable, and even necessary.

The doctor did not appreciate this.  “Do they act like this all the time?”

The question took me off guard.  This is hardly the first time this doctor had treated my boys, nor was this the first time they had behaved like this.  It happened every time.

“Well, they’re often loud and active—but we are in a confined space and we’ve exhausted their patience.”

The significance of this condensed explanation seemed to have no impact.  “This would drive me crazy if I had to deal with this every day.  The medication would help with this.”

I take this concept in and look at it as if it’s a strange species of thought.  Then, with a shrug, I toss it in the pile of its familiars.  “I’m used to it,” I say.  What I don’t say, what I would say if I wasn’t just as tired and just as done as my boys is, “That’s no reason to medicate a child.  I’m not considering this for my sake.  The only reason I’m considering this is for what it may do to help Alex.  If you have nothing to add in that regard, say nothing at all.”  But that’s rude, so I’m told; and I didn’t have the energy to spare to try to open the doctor’s mind to this paradigm shift.

So I don’t say that.  Not there.  Not to the doctor.  I save it, knowing that as helpful as this doctor is concerning the issues this doctor addresses, my sons’ autism is not something this doctor can address effectively.  The idea that this—the behavior the doctor found so objectionable—had nothing to do with that—the mood swings and the increasing frustration and distress that has prompted us to consider medication for Alex—seemed unattainable.  The thought—the this/that difference—was so obvious and essential to me, I couldn’t think out to express it in words to someone who didn’t intuitively understand it.  Beyond that, the philosophy that medication should not be administered for the convenience of others—for any reason that focuses on benefiting others—but for the benefit of the patient is so fundamental to me, and yet so divergent from the contemporary norm.  How do you put that into words to someone who probably hadn’t considered the distinction?

So, I reflect and wonder if I should have scrounged up the energy to make the point.  Perhaps I should have.  Perhaps not.  It occurs to me, though, that some things should just be self-evident.