Joseph E. Sullivan, MD
Assistant Clinical Professor
Director of the UCSF Pediatric Epilepsy Center
We had our much anticipated appointment at UCSF for the Doodle today. We drove to the city which was well worth the stressful drive. Even though, we only saw the doctor for maybe 15 minutes, I felt much more comfortable and confident with him than any other doctors we have seen including Dr. Personality from Stanford. He was adorable and I'm pretty sure I'm older than he is. He reminded me of a cross between Ron Howard and the guy that played the Priest in the Clint Eastwood movie, Gran Torino. There's a reason Gran Torino was nominated for so many awards and I was always a huge fan of Happy Days.
Dr. Sullivan was pleasant and nice and gave me the impression that he actually cared about fixing the Doodle's seizures. He even gave me a tissue when I broke down. I think he was impressed with the Doodle Binder I prepared for him with alphabetized copies of his MRI, eegs and reports of all of his previous work-ups and imaging cds. My color coated seizure and drug history is especially fabulous. I let the nice Doctor know that I put the cutest picture I could find on the front of the Doodle binder so that he would see that he could be cute and sweet. Knowing in advance, the Dom was going to act like a maniac in his office, I wanted the nice Doctor to know that the Doodle didn't always act like such a brat. That sometimes he would even sit still for a picture. Oh, wait. Who was I kidding?
We talked about brain surgery options, and they are always the last resort; but at least I got confirmation that they are an option possibly at some point, contrary to what our Santa Rosa neurologist told us. While the brain surgery will not stop the seizures, it would at least isolate them to only half the brain.
The Doodle was horrible at the appointment. Locked in a 7' x 6' room listening to me get asked 100 questions about his health history by the nice nurse practitioner was all he could stand. He started melting down almost immediately. He finally had enough and that's when we went into Doodle Overload. He barely let her examine him. It had to be torturous to listen to him cry for that length of time. I'm used to his screaming and it was even raking on my last nerve. I know how hard it is to listen to someone else's child scream and be a brat...and it's hard not to judge the child as a complete brat; even with his autism diagnosis. I know there are so many people out there that think parents use the autism label for a free pass for their child;s bad behavior. Well, I'm playing that card. He acts horrible in public and a lot at home too. I like to think it's the autism or perhaps a side effect of the medication. It makes me feel better anyway. So if you see my child acting like a brat. It's because he's autistic and I'm entitled to living in denial with all we are going through right now. Only time will tell. My mom likes to contribute his behavior to "terrible twos"; which has been going on now for the first 3 years of his life.
All I could think about is these nice doctors can't wait for us to leave and probably don't want us back anytime soon. When she told me a lot of our appointments could be done over the phone, I couldn't help but read between the lines, in other words, "stay home and muzzle your child".
Bottom line today from the appointment, we are doubling the Depakote since he was on a very small dose, and we are taking him off the Keppra. Completely. The doctor thought the dosage was so small, it probably wasn't doing anything anyway. And Keppra has the worst behavioral side effects--like making kids crazy and agitated and out of control. Hmmmmmmm. Do you think his witnessing of the Doodle's behavior today had anything to do with him telling me to take him off of it immediately? The fact that he's been doing raspberries with his mouth all day long is not helping either.
If the increase in Depakote does not work with controlling the seizures, then we have two more medicines to try. If they do not work either, then we will talk about the surgery. He is also going to order more tests.
Before we left, we topped our day off at the Lab for some more blood work. That put the Doodle in a great mood. He can smell a Phlebotomist a mile away; that and see dead people.
So how do I feel? Relieved a little bit I guess. I like the new young and sweet doctor and the best and most ironic part of today would be that the Doodle has not had a seizure since yesterday afternoon. So for that, I feel hopeful.