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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.

MRI: Round Two

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

So, after the neurologist giving Alex a clean (neurological) bill of health, he called us back in for another MRI. My husband took the call and didn’t ask the questions I would have asked, like why the sudden change in the doctor’s decision.

I know the MRI technology that is available to this neurologist is superior to the MRI technology available a few years ago at previous facility. I know that the people who ordered that first MRI weren’t looking for the same things this doctor is looking for. I know they didn’t have quite the fascination with my family’s medical history that this doctor does.

But, of all of this, what is the purpose of the new MRI? Did the doctor take a closer look at the old MRI and see something, but not see it well enough to be sure? Did the EEG results raise a question that an MRI might resolve, something that came up after the appointment? Is it for the doctor’s research?

I don’t know. I’m not particularly worried, but I dislike not knowing. What is he looking for? What will it mean if he finds it? Will this test actually change anything for Alex?

I’ve agreed to the testing and we will follow through, yet I can’t help but wonder if it’s worth putting Alex through this again.

At a time like this, I can’t help but empathize with those parents who are willing to try anything and everything to “help” their child. Granted, I’m not doing that—an MRI is a safe procedure with solid scientific evidence backing it up. Yet, I understand and appreciate the feelings that lead to those choices, even if I don’t agree with the choices themselves, especially when it involves pursuing treatments with little or no safety information or treatments that are purported to “normalize” a child with autism, i.e. to “cure” autism.

Still, Alex is a complicated child and he’s having a rough time. We need answers if we are to help him, and we’re short on answers. I hope this MRI provides some of those answers, or perhaps leads to something else that might provide answers.