How many years ago now was the big medication change that had the effect of changing everything? It was the spring of Brennan's freshman year of high school. Ok...math. Hmmm...it was just over three years ago. That doesn't seem right. It seems like it had to be more than that. So about three years and three months and three days (or so) ago, we became less comfortable in our world.
Just as a reminder...Brennan had a brain tumor removed at age 8 after having his first of many seizures. He was officially diagnosed with epilepsy at age 9 and was put on a few different anti-seizure meds. A few changes were made early on, and eventually Brennan was only on one. The one med, Depakote, seemed to make Brennan's brain work a little slower, but did a pretty good job with seizure control. Brennan would go about 8 - 18 months between seizures. They were so rare that they always shocked and scared us. We called 911 for the first few and took ambulance rides to the ER. Eventually (and with most of the credit going to Camp Candlelight and the Epilepsy Foundation of Arizona), we were able to witness a seizure and not fall apart and make it worse by inviting the fire department to our home for the party.
Time started passing until we realized over two years had gone by without a seizure. That's when we began working with a pediatric neurologist to wean Brennan off the Depakote. We were just days away from Brennan off the Depakote when I heard a noise coming from his room. He was having a seizure. We talked to Brennan's doctor and stopped the weaning, but didn't go back to the original dose. The next morning Brennan had another seizure while I was driving him to school. I took him to ther ER. He went back on his full dose. We were sure things would be fine again after that. We were wrong.
Depakote stopped working. New meds - many different new meds. New doses. Seizures just kept coming. There were a few more times I would take Brennan to the ER. I was sure the answers were at the hospital, but we kept being sent home. On more than one occasion we were told, "I know seizures can be frustrating." Oh, they had no idea how much that pissed me off. After sitting in a cold room with things beeping and having to tell Brennan's entire life story to everyone who walked into the curtained room because my son's lips turned blue during a seizure and I wanted a medical professional to help us, I knew the difference between being frustrated and something more serious. I wanted the professionals to not just acknowledge the "frustration" but to take us seriously and start helping us stop something I knew wasn't right. I thought about dropping Brennan off at the ER with a note pinned to him that said, "Fix me." I would pick him up after they fixed him! Sounded like a perfect plan, but I never did it. I accepted being told the situation was just frustrating. I would take my son home, make a follow up appointment with Brennan's regular epileptologitst, and hope for the best. We also had the luxury of knowing Brennan's doctor's cell phone number (a lovely man that didn't deserve all the text messages from us, but we'll be forever grateful).
Eventually there was a hospitalization with more med adjustments. Brennan saw multiple neurologists and they all had their favorite go-to anti-seizure meds. Brands were changed, and doses were raised. Then Brennan went some amount of time without a seizure and a lovely (but relatively new) doctor said, "I think we found the sweet spot." It was Brennan and I in the room when that was said. We either just thought the phrase was funny or we knew it was total bull shit, but we joked about sweet spots after that (a little before the doctor even left the room).
During one of Brennan's hosptializations he had a seizure where his oxygen levels were so low that a code blue was called. As difficult as that was, it felt like a relief to know that suddenly the severity of Brennan's seizures was not just an anecdote after the fact. We were finally taken seriously. We were set up with oxygen tanks to help Brennan when he had seizures at home or school. I no longer wanted to abandon Brennan at the ER with the "Fix me" note, but when we did have to go back to the ER for an unbelievable number of seizures in one day, Brennan was seen immediately and he was hospitalized rather than being sent home.
Every time a med change was made and a few days went by, we started saying that maybe we had found the "sweet spot." We were hopeful and always wrong. We stopped saying "sweet spot" unless it was in a whisper. When a seizure happened after a week gap or so, someone would ask, "Who said 'sweet spot'?"
Then Brennan had the big surgeries The ones that was supposed to stop (or drastically reduce) tonic clonic (grand mal) seizures. (There's so much more about the surgeries in previous posts.). Instead of the miraculous "no more seizures ever" that we heard other people had, we saw another code blue. A few more post-surgery seizures and even the previously optimistic doctors started looking defeated and sad. Brennan was released from the hospital with no real hope for a seizure free life. Seizures did seem to be less severe and we stopped needing to give him oxygen. He started having auras (a feeling that sometimes happens that warns someone they are going to have a seizure), and would sit or move to a safer area.
As a parent, I was relieved that things were better. Not perfect, but better. And none of us ever said "sweet spot". Except that we talked about not saying "sweet spot". At some point Brennan's youngest sister, the one who can be very matter of fact, said something to me about how ridiculous she thought we were. I wrote down what she said because I wanted to remember it and I wanted to be convinced of its truth.
"If you believe the surgery or meds are working, you can't also believe if you jinx him that it will suddenly stop working."
The kid made some sense. It wasn't what we said or believed that would make Brennan better. It wasn't if he was a good or bad person, or if we were (don't talk to us about karma). Either the surgery worked, worked a little, or didn't work. Either meds worked or didn't. But you know, we still don't say "sweet spot."
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Brennan has not had a tonic clonic seizure in enough months that we can't even remember when he had his last one. Maybe last December or January. Over six months. Not quite a year. He still has a type of seizure that is basically the feeling of an aura but with no seizure that is noticeable. No loss of consciousness. No falling. Brennan hates them because he's aware of them. The rest of us are relieved because he doesn't get hurt, he doesn't stop breathing, and unless he says something we can't even tell they're happening. The doctor calls them "non-debilitating." They aren't the kind of seizure that would make driving unsafe. Pretty awesome if you are the parent.
Brennan graduated from high school in May. He is enrolled at a community college just a few miles away from us and starts in a couple of weeks. Alan and I took our first no-kid vacation since this entire adventure with Brennan's brain started almost nine years ago (we went to Sonoma and fell asleep for about 14 hours the first night and then drank a lot of wine - we needed the sleep and deserved the wine!). I don't think we're taking this current situation for granted. It's just such a relief to not have to worry or be as vigilant as before and to see our few-months-shy-of-18 child be just as obnoxious, on the verge of change, and amazing as other people his age. And that is so sweet.
