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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.

Back to the Genetics of It All

  • Posted on September 21, 2012 at 8:00 AM

So, as I said, it was premature to worry about saying “NO!” to brain surgery. It’s not going to happen. Even the doctor doesn’t think it’s a good idea. Yay! On the other hand, it means Willy will probably be on anti-seizure medication for the rest of his life. So, there’s that.

I learned quite a bit from this visit. First, I learned that all the seizure activity recorded by the EEG started in the same spot in Willy’s brain and that they also saw spikes in this location even when the spikes didn’t become seizures. After a seizure started, it became generalized throughout Willy’s brain. Second, I learned that several anomalies were identified in Willy’s MRI. The main one concerned his ventricals, which are structured atypically so that they “leak” cerebral spinal fluid into a part of the brain that isn’t common. Near this site, there are also “extra” folds in Willy’s brain. And, Willy also has a cyst that is not considered significant.

This data has led Willy’s neurologist to suspect that there is a genetic factor, so Willy will be seeing a neurogeneticist to see if we can learn more. Identifying a genetic cause may just be a “point of curiosity” that does researchers more good than it does us, but it may also indicate other associated anomalies to watch out for, like heart conditions or something.

Due to the possibility of a genetic factor (which may or may not be hereditary), the neurologist is also concerned about Alex. There is a possibility that Alex experiences subclinical seizures that we don’t know how to identify, so I’m to get his pediatrician to refer Alex to the doctor and the doctor is going to order Alex’s MRI to see if there are similar anomalies that the other doctors missed because the ones identified on Willy’s MRI were subtle and because Alex’s doctors weren’t looking for it.

While I’m not overjoyed at the possibility of 24-hour video EEG round two, I realize that it would be better to catch any seizure activity earlier rather than later. I also read an article that suggests (though the article admitted the data was insufficient to be conclusive at this point) that treating children who have autism and who also have irregular EEGs, even when they don’t have observable seizures, can improve the child’s quality of life, including their autism symptomology. An extreme example was a child with autism who was non-verbal before starting seizure medication, but who was able to use verbal communication afterwards.

All in all, it was a lot of information delivered in a relatively short amount of time. We’re all still processing what this means.