A few weeks ago, we had an appointment with Livy’s neurologist. Livy has had some longer seizures lately and we wanted to discuss our options and revise our plan for how to handle them. Livy is currently on four antiepileptic medications and our options are limited. As I sat there holding Livy in my arms, I thought how surreal the journey continues to be. Most of our time is focused on Livy’s epilepsy because we must put out the biggest fire first. Unfortunately, it leaves us with less time to dedicate to her other disabilities. When the doctor came into the room, we told her about Livy’s recent struggles. We then went through the list of medications she is taking and what plan we should put in place. Our options…1, increase medication A to this level…2, increase medication B to this level…you see where this is heading.
After going through all four, the next comment from Livy’s doctor was “We really don’t know how all of the meds interact and the effects that can have.” Did I mention that the known side effects of the medications she is on are nausea, vomiting, upset stomach, diarrhea, constipation, tremors, slurred speech, loss of balance or coordination, rash, headache, mental slowness, trouble concentrating, confusion, dizziness, drowsiness, nervousness, sleep problems (insomnia), loss of strength and energy, anxiety, nervousness, irritability, depression, drooling, restlessness, jerking movements of the eyes, shaking of the hands, and memory problems. These are just the more common side effects, not the serious side effects.
I’m not a doctor but I’m pretty sure all these drugs mixing together is not a good thing. Now imagine being in a position where as a parent, you have to choose between prolonged, daily seizures or side effects (short and long term). Keeping it real here, can you even begin to imagine the emotions we suppress to make it through each day? They are buried, far down. Ever wonder why we choose to believe in hope over fear? The moment fear creeps in, those feelings start to rise. Our next option will be CBD oil (cannabis with extremely low THC) which will take another four months to get if we go through the proper Florida channels. But what if that doesn’t work. What next? It’s not effective for everyone.
Are we as parents supposed to know what to do? Where is the handbook? I don’t remember this part in the pages of What to Expect When You’re Expecting. You know, the section that outlines the incredibly complicated kids? We have no idea what to expect. There are many days when we wing it.
I give so much credit to parents who share a similar experience and make it up as they go. It doesn’t matter if it’s epilepsy, cancer, autism, or other chronic health related issues that afflict our children. To those families that once had a life plan but now are on a different journey, we feel your pain. You are not alone in your struggles. We are writing the book together.
We may wear purple and you may wear yellow, or blue, or other cause related colors, but the fact is, we love our kids and we feel helpless when we can’t heal them. We search for answers. We ask why. We pray for options. We seek solace for our kids when they are suffering. Too often, we have little control which frightens us because we have no idea what will come next. Our basic instincts to do whatever needs to be done to protect our children kick in. In those darkest of days, nothing else matters besides their health.
So I say to all our fellow warrior parents, stay strong. Keep searching for the best treatments and the best doctors. Share your stories with others because your experience could be someone else’s lifesaving answer. Fight for your kids like you have never fought before. When you have gone as far as you can go, go farther. When you have nothing left to give to them, give more. When a doctor has no answers, find them yourself. Never stop searching. And never, ever give up hope.