EEG Results ~ the Good, the Bad and the Ugly

Thanks to a well connected friend, we were able to move Reagan's neurology appointment from May 10th to today (big thanks to you my friend!!)  This was super helpful not only because we are anxious to get the results and talk about what they mean for Reagan, but also because I will be in Copenhagen on business May 10th and I HATE missing appointments like this one.  Anyone who knows me is well aware that I always have more than the average share of questions.

So here's the breakdown of how it went today...

The Good
Because I always have to find something positive in everything...I'm forced to include The Good. It is good that Reagan has responded well to Trileptol and has been seizure free since April of 2012.  For four years we have successfully kept her brain quieted down.  We know many people who have needed multiple surgeries after multiple medication combinations have failed just to stop the seizures so we don't take it lightly that this is a true blessing. Our hearts and prayers are with those families still trying to find solutions.

The Bad
Reagan's EEG shows continued sharp spikes of abnormal activity especially as she was moving into sleep.  This means not only is she more likely to have seizures when tired, but also that she will need to continue on her medication.  The risk of seizures is too high to stop the medicine. We were very discouraged to hear this and even more discouraged that the last EEG (two years ago) was in an old system so Dr. Lavenstein was unable to compare the results to determine if we could at least say that there is LESS abnormal activity.  Do NOT get me started on EMR and my frustrations...

The Ugly
So we talked a lot today about the "what if's"...which every doctor hates but I'm sure they are used to the onslaught of questions.  There are multiple factors that weigh into the probability of Reagan ever being seizure free again.  First, what caused them to begin with - for her it was structural.  This is the worst case scenario for hoping they will stop since she has permanent scar tissue in that area.  Another factor is the type of seizures.  There are over 40 types of seizures and Reagan's are classified as Complex Partial.  This type of seizure starts in the frontal lobe and moves to other areas that affect alertness and awareness.  Unfortunately given these two factors alone, the likelihood of Reagan ever having a normal EEG is close to zero.  Yes, that's the UGLY part...but there's more...abnormal activity in the brain only makes someone MORE LIKELY to have seizures, but does not necessarily mean definitively that they will have seizures.  So it's a bit like playing Russian Roulette...how much abnormal activity could cause her to have seizures?  No one knows AND everyone is different.  It's too difficult to control for all the variables to have accurate research and statistics.  Additionally, these results will be influenced by age and certain developmental stages like puberty.  So what does this mean?  She will stay on the medication knowing that the longer she is seizure free (regardless of having abnormal brain activity) the more likely she could be seizure free and non medicated in the future.  BUT, this means if we ever decide to come off the medication, it will likely be a very scary adventure of "wait and see" because we will not likely ever have a normal EEG.  So the hope will be that we've quieted her brain down long enough that even with abnormal activity her brain will not advance to send the electrical activity that develops into a seizure.  The ugly part is that we won't know until she is completely weaned off the medication, and even if she is seizure free without medication (as she was from Aug 2010 - Apr 2012) they could return at any time.

So for now we will stay the course and try to remember how blessed we are that she is not having seizures.  He suggested we return in 6-8 months and plan another EEG next year at this time.  Luckily it went very smoothly this year and it's completely non invasive so it doesn't hurt to just check and see if anything has changed.  We did talk about moving to a pill form of the medication which would be administered once daily and will be more stable.  We plan to work with Reagan to teach her to take pills and consider that when we go back in 6-8 months.  Our biggest challenge with the medication is that it can't be cold and it can't get hot.  So over the summer when we take trips to Hershey or the beach it can't stay in the car.  First world problems I suppose, but it is something we have to take into consideration.

On a separate note, I spoke with the nurse at The Vision Center at Akron Children's Hospital today.  She said we will not get an appointment until August and we will not know when the appointment will be until the beginning of June.  We are hopeful, however, that we will have the appointment before the end of summer so that Cole doesn't have to miss the beginning of Kindergarten!

And given I ALWAYS like to include pictures and something fun we are doing, here's a quick update. We were able to take a tour of "The Cage" where the Marines Corps keeps the HMX1 helicopters that fly the President of the United States, otherwise known as Marine One.  We had a private tour from one of the Marine One pilots Johnny knows.  It was such an informative tour and an absolutely amazing experience to see the Sikorsky helicopters.  So cool to sit in Obama's seat and think about all the debriefs he and so many of his predecessors have had in that chair over the years. Also wonderful to hear how much he appreciates the team of pilots who travel the world with him. In addition to boarding the two styles of M1 helicopters we were also able to board the Boeing Osprey helicopters that transport the rest of the detail who often travel with the President. Definitely much bigger helicopters and not authorized for the front lawn of the White House.  The kids had fun sitting in the seats and jumping out the back.  Definitely a once in a life time opportunity and we are so grateful to the pilot for taking the time to give us the tour on his day off!