The marathon's first step

Wow.  Nate and I have been processing today's events during the entirety of our 5 hour drive home from Johns Hopkins.  This was a good day with good progress towards our goal of lessening or eliminating Will's seizures.

Our appointment was mid-day, so we drove to Baltimore last night and stayed very close to the hospital.  We arrived early - good thing, because we had no idea where we were going and Johns Hopkins has a very large, convoluted medical center.  And lots of one way streets.

We checked in with no issue and waited for Will's name to be called.  He was in a touchy mood because he slept poorly at the hotel, and once they called his name and took us into an exam room, he knew something was up.  He started whining and crying.  Thankfully we came prepared with toys and snacks, and were able to calm him down a bit so we could talk to the neurology fellow.

Back when I set up this appointment, I had to give the clinic a lot of preliminary information about Will for the director of the epilepsy center to review.  She typically doesn't take on new patients, so we thought that she would review Will's case and pass it on to one of the other neurologists in the center.  Instead, we found out that she agreed to take Will on as a patient.  Dr. V is the cream of the crop in the pediatric epilepsy world.  She is who our neurologist here would want taking care of him, if he were in our situation.

So we sat down with the fellow before meeting Dr. V.  The fellow was very kind and inquisitive.  She had clearly done her homework about Will and his medical history.  We talked about his birth, surgical history, seizure history... everything that has happened in the past 5 years.  She stepped out to update Dr. V.  They came back in together.

We were immediately struck by her amazing positive attitude and energy.  She had Will's medical file with her, with a couple of purple tabs marked with questions to ask us.  She interacted with Will a lot - he was happy to show her his computer.

First thing, she asked us why we were there.  I told her we were looking for a clear path forward.  She kind of chuckled at me.  There are really no clear paths when it comes to neurology, the best thing that we can do is take in all the facts and put forward our best guess on what to do next.

We talked through our trials of different medications and how they aren't stopping Will's seizures.  We talked about why Will is not a good candidate for the ketogenic diet.  Each question was a little more pressing than the next, but never over the top or pushy.

Finally I said: We're here because we want Will to reach his full potential.  In the early part of 2010, Will was trying to make new sounds regularly.  He would mimic speech.  And then the seizures started.  And now he doesn't try to make new sounds.  He hasn't really made any developmental strides since he was diagnosed with epilepsy.

Dr. V stopped and looked at the fellow, and with a quick nod said "and that is exactly the reason why we think we should take the next step with Will."

She went on to tell us that from her short interaction with Will, she could tell that he had a lot of intelligence and a lot "going on in that head of his."  She explained that based on his seizure presentation and the MRI of his brain, they would suspect that Will's seizures are starting on the right side of his brain.  They want to stop that from happening so the "left side of the brain can continue to develop in a less chaotic environment."  Basically, when the brain is seizing, development stops.  The best environment for development and growth is one free of the electrical firestorm that is an epileptic seizure.

While we were all together, Nate and I got to see Will's MRI.  Surprisingly, we have never seen the scan before.  Based on his level of disability, we have always known that Will's brain had severe damage.  I personally never felt like I needed to know how bad it actually was... what's the point?  It doesn't change how we treat Will, or how we interact with him, or how we love him.  It really just seemed like a reminder of a history that seems so long ago.

But Dr. V really wanted us to see it.  I think she was amazed by Will, and needed us to see the MRI for us to truly understand why.

If you look at Will's brain MRI before ever meeting Will, you would likely think that he had very limited cognitive function.  To be completely honest, Will's MRI was alarming to see.  If you think of a typical brain, it looks like a walnut, with two equal sides that mirror each other.  Will's brain doesn't look like that.  From his brain hemorrhages at birth, the outside of his brain on the right side was pushed against his skull.  The force of that pushing caused his brain tissue to die - so he now has a large pocket of fluid on the right side of his brain where you and I have brain tissue.

Additionally, and likely because of the force of the hemorrhage inside his head, the hemispheres of Will's brain are not equal, and they have no clear straight separation between them.  Towards the base of his skull, his brain is larger than would be expected - again because the hemorrhage pushed against brain tissue away from where you'd expect it to be.

Our consultation was the first step in this process.  Now we start the second - this would be an inpatient stay for Will, during which time he is hooked up to a video EEG, taken off his medications, and he stays inpatient until they get a seizure recorded.  If he seized the first night, the inpatient stay could be one day.  Or if he didn't seize for weeks, we would stay in the hospital for weeks.  So my homework from our appointment is to create a calendar from Will's seizures over the past year and figure out a time period when he would appear to be likely to have a seizure.  We will schedule the inpatient stay for this time period.  Obviously this is would be an educated guess, since we are unable to actually predict Will's seizure activity.

Once they have a seizure on EEG, they can determine what part of his brain is actually causing the seizures.  Assuming that section of the brain is operable, the next step in the marathon is planning neurosurgery to remove that malfunctioning section of brain.

But Will is not officially a surgical candidate now.  For now, he is a candidate for a long-term EEG study.  We would not go through with this if we all (Dr. V included) didn't feel that this was the right thing for Will, and something that would help him immeasurably in the long term.

If we do get to the point of neurosurgery, this would be by far the most dangerous surgery that Will has had.  It is not something that we take lightly.  But when weighing the benefits and risks of the options on the table, this appears to be the one that will truly help Will.

We didn't have enough time in Baltimore to spend time with any friends or family who live there.  But ironically during our discussion with the pediatric epilepsy fellow, I got a text from my brother.  He was also at Johns Hopkins for his 3-year check up with his radiation oncologist.  How on earth do things like this happen?  So crazy.  It was great to be able to quickly touch base with him before we hit the road back to North Carolina. 

We left the appointment feeling hopeful and at peace. Amazingly, we did not feel overwhelmed or scared. This feels like the right thing, and we feel like we're doing it at the right place.