It's Not In The Numbers

Today we went to see Kid's neurologist for our check-up. We've still got another 9 months to go before they even consider weaning her off the anti-seizure medication so not much was going to be revealed at this appointment. She hasn't had any seizures, she doing well, her behavior is no longer a problem, she's sleeping well. So Mr F opted out of this appointment since he's taking off next week for her eye surgery (yeah it is nothing but fun times around here). The problem with that is that schlepping both kids to the hospital for the appointment and dealing with the overflowing parking structure and the slow elevators and everything is annoying at best and often times just a little stressful. We don't even live 2 miles away and yet I have to get them all in the car about 45 minutes ahead of time to account for all that can happen between our door and the clinic's.

My worst fears were not realized and I managed to pull it all together and with a bit of nagging we arrived just on time (no not 15 minutes early as we were requested to do). Baby tolerated her stroller for a bit and then explored the room. Fortunately they had a scholastic book on arctic explorers which might as well have been hand picked by Kid and she was happily listening while Baby crawled under some chairs to investigate dangerous chords and whatnot. Really it wasn't so bad. Baby never once tried to flee the room.

The doctor is a super nice engaging older man. He remembers (or takes VERY detailed notes to help him remember) minute details of your family... looked at Baby and said "The last time I saw you you must have been four and half months old." umm... yeah... to. the. day. Seriously folks. Anyway I enjoy that in him. He engaged Kid in some ball throwing and jumping and asked her some basic questions. Then we talked about what comes next. I'm pretty well read on Epilepsy and so I'm well acquainted with the numbers and how things will be.

Having said that I still always have some deep down secret desire to arrive at the appointments and have some unexplained turn of events discovered that result in a new diagnosis or NO diagnosis. When that doesn't in fact happen, as it inevitable won't, and we begin talking about the reality of the situation it is hard not to leave a bit depressed. And the funk can kind of hang around for a bit and the funk can turn into grief and at its worst into an inner hysteria that makes me fear for my daughter's life and even start to mourn it.

In November we will start to slowly wean Kid off of her medication. During those few months and then the following six is when she would most likely have a repeat seizure. If she doesn't then she will no longer have epilepsy and it will be assumed that she has outgrown it. 70% of children do outgrow it. But obviously 30% do not and they may seize during the weaning or in the 6 months following or they may seize seemingly out of the blue 5 years later. You'll never know. You. Will. Never. Know. You can't try to feel what that would be like but I suspect if you are not the parent of a sick kid in remission of something you probably can't. Many people will look at those numbers and think those are good odds. Well when your child only has a 2% chance of having Epilepsy in the first place and then manages to have the most uncommon form numbers no longer mean much or offer much consolation. The reality is for every 7 kids who will successfully outgrow it 3 will not. And even the parents of those lucky 7 will still never know if there world will suddenly come crashing down a few years down the road. It's not like you get a certificate that guarantees your recovery.

The main concern I have at this point is that Kid will be most likely to have a seizure between November and August of next year... when she would be going to school. The school does not have a full-time nurse and the neurologist did make it clear that that is by FAR the preferred situation. So I'm not sure she'll be going to school. I have a lot of mixed emotions about this and will need to take some time to really process what I think will be best. For now I'm still going to attend the Kindergarten roundups and open houses and may look into the private schools and see what their onsite medical coverage is like. But in the end I don't know if I can live through the amount of worry I'd have EVERY DAY. I'm not sure it would even be tolerable for me to do so.