October 2011, I insisted that Reagan’s medication needed to change. Keppra was increasing her seizures. October 2012, we were celebrating Reagan being seizure free for ONE YEAR! It felt amazing! We had reached a milestone! I remember taking Reagan on a mommy daughter date that day. We went and had a smoothie and blueberry bagel. She wasn’t even two yet, so she didn’t understand what we were celebrating, but I did, and that’s all that mattered.
After being seizure free for a year, her neurologist ordered for her to have an EEG done. If that came back clean, then we could start to wean her off her medication. We scheduled the EEG, and had it done sometime in November.
The EEG looked normal, so her doctor gave us a schedule to wean her off her medication.
The process to have her come of the medication is six weeks. Weaning slowly. Every two weeks there would be a change until the end when she would just be done.
In December, we were about halfway through the weaning process and were getting together with family for an early Christmas celebration! I remember being at my grandparent’s house with my mom, siblings, aunt, uncle, cousins, etc. The kids were all outside playing and having a fun afternoon. My sister carried Reagan back inside the house because she got her finger pinched in a cracked hula-hoop and was crying. My sister got some ice, wrapped it in a napkin and applied it to Reagan’s finger.
Reagan instantly started having a seizure, right there in my sister’s arms.
I took Reagan from her and went into the other room to lay her down on the floor. Let her ride it out, so to speak. Mitch was right by my side. We were watching our baby suffer. We were watching the clock be set back to no days seizure free.
This time was different. As soon as the seizure ended, another one began. I didn’t know what to do?
Reagan had never had two seizures back to back. We were strictly one per day! I remember my mom asking me what we should do. I remember my family gathered around the living room, just watching this all happen. I remember getting pissed off that everyone was just watching my baby on the floor. At one point I yelled at everyone to leave and not just watch like it was some sort of show. I know that everyone was just concerned and didn’t know what to do, but at the moment, I didn’t want or need an audience.
My mom made the decision to call 911.
We spent hours in the emergency room, just waiting to be seen. Reagan was crying and upset during the whole visit! The nurses wouldn’t let me give her any water or food. Reagan had her sweater on and was hot and uncomfortable, but the paramedics had put an IV in her arm and then taped cardboard to her arm so it wouldn’t pull out, so I couldn’t take it off and make her more comfortable. I was so frustrated and just wanted to take my baby home. I knew that nothing would happen, and we were and hour and a half away from home!
In the end, I don’t remember if we were seen by the ER doctor or not. I knew what needed to be done. I needed to contact Reagan’s neurologist, start her back on her meds, and start over counting the days of being seizure free. I felt defeated. Here we go again… After being seizure free for 14 months, we were back at square one.
