It's 3:14 p.m., I'm walking feverishly down Edina Blvd. with Dermot and Ryan stuffed into the double jogger, the beagles leashes wrapped around my last two fingers of my left hand. I've got 12 minutes to get to the bus stop to pick up my 5 year old from the temporary bus stop.
My phone rings loudly from the stroller's storage pocket, I check the caller ID, MN Epilepsy Group....I answer it quickly. As I answer one of the beagles decides to poop. "hi Sue it's Vicki from Dr. Ritter's office. We have the results of Dermot's EEG last week." "that's great" I say. I've been waiting eight days to find out what kind of seizures Dermot is now having. You see, this past summer he was seizure free for about 2-1/2 months. It was glorious, to say the least. Then, as it has happened before, the seizures started to come back. The first few days he'd have just one or two, the week after that we were up to around ten and now, unfortunately we're in full swing again. On average he has about forty seizures a day. Some, when they occur, look like he's been struck by lightning. Others are a blank motionless stare for over thirty seconds. These ones are new. Dermot's brain has a curious way of evolving and defying the seizure medications that are present in his body. To date, he's had seven different kinds of seizures affect him and just as many medications.
"is this a good time to talk?" Vicki asks. It isn't a good time to talk, but realistically, the only good time to talk on the phone with me is after 8 p.m. when all the boys are asleep, but by that time, Vicki is at home enjoying her ordinary life and I'm completely wiped out from the day's events. "Sure?" I answer.
She begins with a detailed description and overview of what the EEG has shown about Dermot's seizure activity, I think I heard and understood about 65% of that, then she begins to describe FOUR different medications that Dr. Ritter would possibly suggest for Dermot's type of seizures. Just then the other beagle decides to take a dump on my neighbor's lawn. 3 minutes until the bus arrives....
As she is describing the some of the possible side effects of the medications, Owen gets off the bus. "how was your day honey?" LIVER FAILURE "Did you eat all of your lunch?" SLEEP LOSS "Who did you sit next to at lunch?" NAUSEA, VOMITING, HAIR LOSS.
She finishes talking and says "let me know what you decide about the medications". I hang up, start walking home and continue to talk to Owen about his day, hoping that I'll remember enough about my previous conversation to make an educated decision about what medication to experiment with next.
That was three weeks ago, I have yet to decide what to do. In that time it has occurred to me on more than one occasion that I should not be the one making this decision, the doctor should. I'm stuck. Dermot's behavior, appetite and sleeping patterns are all very predictable. Do I stay with what I know and live with 40 seizures a day or do I try something that will change his whole system and may or may not help his seizures? That is my dilemma...