As she entered the room...my chest twisted into a knot and my stomach tensed. She gave me a quick greeting as she sat in the chair across form me. I recounted the "episodes" in the hopes that we would be given an answer. After I explained, she delivered the news...he has a "seizure disorder". My stomach tensed as did my grip on my little boy who was snuggled on my lap. She tenderly explained what we needed to do, and that he would need to be medicated...a word I never associated with either of my beloved boys. After our conversation, she gave me some brief words of encouragement, and left the room.
My mind was reeling with questions that could not be answered...how could my healthy, happy, active boy be "wired differently"?? How is it that just a few weeks ago, the only diagnosis he had was "2-year old"? For the longest time, I just looked at him...his blue eyes, vibrant and full of life; his blonde hair, with the curly cowlick in the front; his lively smile with a hint of mischievousness. I then looked up at the empty chair where moments before the doctor had sat. Tears began to spill down my cheeks. It all felt so unfair...she had left, returning to her life, and our lives will never be the same. At that moment, I despised that empty chair.
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Some of you already know...but for those who don't...Evan has been diagnosed as having a relatively uncommon seizure disorder. Nonconvulsive Status Epilepticus (NCSE). He has had 3 "episodes" over the last 2 months where he would stare off into nothingness and become completely unresponsive for 20 minutes or more. After his second episode, we started the process of getting him in to see a pediatric neurologist (which included getting an EEG & MRI). Evan's system expedited that process when he had this last (third) episode just this past Thursday. We went to the ER and were admitted. While there, they were able to get his EEG, and we were able to see the pediatric neurologist. His EEG showed some abnormalities, which helped her to determine that the NCSE seizures were "complex focal", meaning they did not involve the whole brain, but just a portion of it.
Apparently over 50% of kids who have seizures in childhood outgrow them by their mid to late teens. We are VERY hopeful that Evan will be one of those kids. Evan has been started on Tegretol (Oxycarbamazapine). The plan is that when he is 2-years, seizure-free...they will do another EEG and we can consider trying to take him off the medications. If he goes 1 year, non-medicated and seizure-free, it is highly likely he has outgrown them and will not have any more seizures.
This has been a very scary road, but we are thankful that we have some answers, and thankful that it is not something potentially much worse. Because he is a healthy guy, and doesn't have significant developmental delays, the neurologists (as well as us) are very hopeful that he will be among those who outgrow their seizures.
While in the hospital, Evan was a super trooper! Despite typical "hospital sleep" where he was disturbed every 3-4 hours, and despite the IV and covering on his one hand, he was still the lively and active Evan that we know and love. He even did a little dancing on the last day in the hospital (you can see the video as well as a few Evan pics in the "Hymas Photos" section).
If you have any questions about any of this, you can feel free to email me or give me a call.
