We've had a busy couple of days here, folks. The next time you see me starting to plan a week like this one, somebody please shake me. I am so serious.
So, yesterday morning was Collin's sleep-deprived EEG and neurology appointment. It had been 6 months since our last EEG - a major record - and the first EEG since starting the ketogenic diet. I was nervous, I'll be honest. Even when things are going well, I have this lurking fear that I'm going to show up to a test or appointment and they will say, 'Surprise! You're imagining things! Something really bad is going on that you couldn't even see."
Anyway. With an EEG appointment of 8:30am, that means a wake-up time of something way, way earlier than that and then hours of making sure Collin doesn't fall asleep. By the time we got there, the poor guy was so hungry and tired that he was half crying, half moaning in the waiting room. He performed beautifully, though, falling asleep on cue, waking up on command (with a smile, no less) and not thrashing in his sleep too much. I had vowed that I was going to sleep in the chair with him and not look at the computer screen, but it didn't work out that way. It was more like my eyes never left the screen, much less closed. My friend Cristina takes a picture of most of her son's EEG screens, and I kind of wish I had. I knew I was seeing something, but I just wasn't sure what.
Our actual neurology appointment wasn't for another 3 hours, but Dr. Awesome was kind enough to work us in right away. (As the lovely EEG tech said before she asked on our behalf, "I don't think Dr. Awesome would want to keep Collin waiting.") When he walked in the room, I scanned his face for clues, knowing he had just come from reading the EEG. He kind of pursed his lips. He looked at the ceiling. He rocked on his heels a little. No smiles. Definitely no excitement.
"Ah. Well. Collin's EEG showed no epileptic activity today. I saw some mild slowing in the background, but aside from that, I detected no discharges or any other signs of seizure activity."
"So. Ah. If I were reading this EEG and did not know Collin's history, I would say that it was an otherwise normal EEG with some nonspecific slowing in the background."
I think I might have opened my mouth.
"Of course, there is always the chance that if we were to run a 24-hour EEG we would see some sporadic discharges, but this is really of no significance."
I don't know why I feel the need to not appear stupid and happy when I hear news like this. That's ridiculous. Instead of smooching somebody, I choked it down and moved on to my list of questions.
SIDE NOTE: One of my questions involved whether he agrees with Collin's geneticist that we are likely not dealing with a degenerative disorder. He hemmed and hawed and drew a few charts and basically said that we can't know. Which, of course, I knew. But I was replaying the conversation with Kyle later and suddenly found myself getting riled up. I wasn't upset AT Dr. Awesome, but FOR him. Science was keeping him from using his experience and intuition to answer a simple question of opinion. In addition, Dr. Awesome had used the absence of reliable studies to discount the potential efficacy of a few therapies/treatments I asked about. Not that I am particularly married to any of these treatments, but it just suddenly rubbed me the wrong way that we have to wait for people to find the money to do 'reputable' studies in order for something to be considered useful or true. Without a study to cite, we can't recommend or even consider some options without being labeled 'alternative'. This lead me to conclude (without having even formed a hypothesis) that too much science can be detrimental to an otherwise reasonable brain and paralyze the ability to form sensible opinions or sometimes even make an educated guess. I probably don't even really believe half of this, but the conversation earned me my new favorite nickname from Kyle: Enemy of Science.
Dr. Awesome is very dear to us, and his caution in making premature judgments has allowed us to hold on to hope more than once. But I had to smile when he wrapped up our appointment by saying, "So. Ah. It appears that we are making some steps in the right direction with Collin's seizure control (TWO PLUS MONTHS SEIZURE FREE AND MED FREE) and development (SMILING, LAUGHING, COMMUNICATING, INTENTIONAL MOVEMENT, DEVELOPING PREFERENCES, USING HIS EYES). Now we will continue to watch and see what happens." What did I tell you? Science brain.