Second opinions aren’t always prolific revelations of new directions; they aren’t always confirmation of your path; they don’t always make sense.
Our Pediatric Neurologist suggested we seek any one of six Pediatric Epileptologists in the State of Colorado for more reassured direction. When your neurologist, the one that other doctors describe as the smartest person they know, suggests you seek a specialist in his own field, you follow through. It certainly didn’t seem unreasonable to speak with a Neurologist who specializes is Epilepsy for Landau-Kleffner Syndrome. So we did.
After a two hour appointment, after long explanations of what we were already familiar, after a description of our child being given back to us, Dr. P (the Epileptologist) suggested another EEG.
“To be sure we got a good reading and there’s no other underlying seizures.”
Another EEG. (What choice do we have if we need to do this, it’s what’s best for Alex, right).
For 24-36 hours. (Okay. It’s the getting on that’s the hardest part. We can do this.)
In a room no larger than an average doctor’s waiting room. Where he cannot leave. For 2 or 3 nights and days. (Ummmm…..)
Alex doesn’t enjoy coloring. He doesn’t play video games. He’s not too much into reading. He watches YouTube Videos. He watches movies. He plays in a sandbox, runs in sprinklers, flys airplanes, drives cars on any smooth track and scares his sister with toy snakes. He gets ever so slightly maddened with cabin fever in confinement. He needs to be outside to maintain his sanity.
She shrugged her shoulders.
So we got a second opinion of our second opinion by someone we trust, someone we respect, someone who is the smartest man other doctors know. We went back to our Neurologist (Dr. M) who treats Alex like a person, as he child he truly cares for.
Though completely professional, his distaste of Dr. P’s suggestion was hardly disguised.
“She’s never sat in those small rooms with a child for 24 hour”, was his response.
We were thankful that someone in the medical profession could see some reason. Except, there was that concern for any underlying “missed” seizures. We certainly did not want to miss any more information…having missed this for 5 years was enough.
Reason again followed.
We agreed with Dr. M (and a third Neurologist who read the original ambulatory EEG) that it was a good, in-depth reading; that any underlying “missed” seizures, though possible, were improbable; that another, longer, more insanity-producing EEG would not provide any additional useful information at this time, and that underlying seizures could be missed at that time too.
We agreed that we will go forward, observe any changes in behaviors, language usage and comprehension, and most importantly, sleep….we will use these measures as measures of treatment success.
(Photo By: Mr-Brown)