We trekked up to Cincinnati today for our neurology/ketogenic diet follow-up. It was my first time going to Cincinnati Children's Hospital by myself (Collin's like, 'What am I, chopped liver?') and it was remarkably smooth. Here are a few points of interest:
- Collin's head does not appear to be growing as fast as they would like. That's as much as they said and I didn't ask any further questions because a) he has had times before when it seemed like his head wasn't growing and then he would have a growth spurt, and b) if it's true that it isn't growing at the appropriate rate, there's nothing we can do about it anyway. I don't mean that in a callused way. It's probably more an issue of self-preservation. We are fully aware that there is a possibility that Collin's condition is degenerative, but we don't know yet, so there doesn't seem to be much of a point in thinking or talking about it right now.
- Collin is the official 'star patient' of the ketogenic program, according to the ketogenic dietician. His ketone levels, blood sugar, weight gain, growth, and specific gravity are all perfect. After surviving that hellish transition period, he is tolerating the formula well and he has been seizure free for 17 days. Unfortunately, there is no prize associated with this title, but Collin is satisfied with the recognition.
- The neurologist from Cincinnati gently suggested that we switch all of our care back to our Louisville neurologist to make things simpler for everyone. I agreed and had thought about mentioning this to her, but it was still interesting that she brought it up. She feels that she has nothing substantial to add to what Dr. Awesome is already doing. We came to her for a second opinion and her opinion is that Collin is still a mystery at this point. She will continue to think about him and wants to stay updated on what's going on with him, but all of our appointments and decisions will happen at our friendly local neurologist's office from here on out. This is probably good because:
- Th neuro nurse and I kind of rub each other the wrong way. She raises her eyebrows at what I say far too often and questions our decisions like she's the neurologist. Except that the neurologist supports our decisions. It will be best for us to go our separate ways.
After our appointment, we stopped at the farm to eat some wholesome food, visit with family, and have a wild night of crocheting, a PBS bluegrass special, and lots of squealing and kicking with Nana (Collin, not me). Good times.