As we head to the neurologist today, I feel as though I’m playing Eeny, Meeny, Miny, Moe. Bella has been seizure free for 10 months now. Yippee! Right? However, she is on high doses of four medications, and she has the VNS implant, which is, hopefully, going to stop a cluster of seizures before they begin. We have a backup emergency nasal spray, which should help lessen the severity of her seizures.
So, what does this mean? Three months ago, when we met with her neuro, he wanted to start to wean one of the medications. He has his opinions, with education and experience to back them, but I am Bella’s advocate. I know her 20-year history. I was too nervous to discuss lowering any of her doses. Her breakthrough seizures can lead to catastrophe. If it’s not broken, why try to fix it? Well… this depends on your definition of broken.
I know that it is time to try to reduce the amount of medication she takes. I am nervous. I do not know which of the four she takes is doing the most to control her seizures, and I do not know which one is causing her the most harm. They all have potentially harmful side effects. I know it is time to make a decision. I will need to rely on her neurologist’s opinion, but I know he is relying on my insight as well.
Keppra – This causes mood swings, some refer to it as “Keppra Rage.” She most likely does suffer from this, but it seems to be the main thing keeping her seizures at bay. It has been a mainstay in our medicine cabinet for over ten years.
Qudexy – This is an extended release form of Topomax. She has taken topomax for years, and it seems to help alongside her other meds to control her seizures.
Aptiom – An extended release form of Trileptal, another one she has taken for years, that seems to work well with the rest of her “cocktail” of meds.
Phenobarbital – This was the very first medication she took at 9 months of age. She was on phenobarb the first 5 years of her life, and I blame it for her learning delays. This was added 18 months ago when we couldn’t get her seizures to stop with anything else. This is the one I kind of hate the most… but, alas, it helped us regain seizure control again, and when we lowered it the last time, she had more breakthroughs.
So, which one should we try to go without? Which is doing the most good, which is doing the most harm, and are any of them doing nothing at all?
Eeny, meeny, miny, moe, which of these medicines needs to go?!