Without notice or much fanfare, today turned out to be a milestone day. We attended Jon’s routine clinic at the Hospital for Sick Children, something we’ve been doing every 6 to 12 months since Jon had Infantile Spasms at six months.
Jon originally was on a short, sharp course of ACTH to shut down those evil seizures, and then on to vigabatrin, and after a couple of years he was switched to the anti-seizure medication valproic acid, all under the watchful eye of Dr. Conrad Yim. He was the first doctor to figure out baby Jon’s seizures during our hellish 11 hour emergency room visit to Sick Kids in late March 1997, and he stayed with us until he got a major promotion to the Trillium Health Centre in Mississauga, where he is Paediatric Neurologist and magazine cover model.
Enter Dr. Pam Cooper, who we immediately got along with. Dr. Pam learned early on that Laura and I both have a background in brain and behaviour psychology, and she’s always approached us with respect and trust, trusting our judgment as first hand observers. It also helped that we all shared similar doubts about a fad treatment at the time, and when a major study showed it to be bogus, we turned into a mutual admiration society.
Dr. Pam has stressed to us that Jon’s development is extraordinary for a kid with his degree of PVL (his kind of brain damage) and the resulting challenges, and one of the ways she did this is every meeting she would stress to us that we ought to have another kid. Today, she stressed that it would be a waste of our gene pool not to. Wow. (But Laura’s still not buying it.)
Last meeting, after a particularly odd EEG (the taking, not the reading, but when it comes to that, Jon’s EEG is pretty unique), Dr. Cooper proposed that given Jon’s unique situation and his seizure history (just two 5-second absences when he was three, and he was on anti-seizures at the time), we might think of doing the unthinkable–taking Jon off the medication and see what happened.
It took us five months to slowly reduce the dosage to nothing. In case of a very unlikely attack of status epilepticus (a non-stop seizure loop), we were issued these tiny pills that could comatize a moose.
Jon has shown no changes. Everything is great. He’s drug-free and happy.
So at today’s meeting Dr. Cooper had a long chat with us, marvelled over our son, gave him a bit of a prod and a poke, tried to impressed upon us how wonderful it all is, and then gave us our walking papers. We’ve graduated. No return visits, unless something bad happens.
There is some sense of relief and delight, but more of loss. We’ve known the neuro nurses almost as long as we’ve known Jon, and they’ve been familiar faces and reassuring personalities as we went through our blackest days. One neuro ward nurse biked a vial of ACTH to our house when we need one more tiny dose at the end of Jon’s course. We only see you guys once or twice a year, but what are we going to do without you?
So goodbye Valerie, Anita, Irene and…Dr. Pam
