We saw Reagan’s pediatrician within a few days. After describing the incident to her and what the ER doctor said, she wasn’t convinced that Reagan had an allergic reaction. She asked me some more questions, and I answered them as best I could. She told me it sounded like Reagan has a seizure. How she came to that conclusion with the little information I had on what actually happened was beyond me.
That’s why she’s the doctor and I am not. Just as a precaution, I was instructed to not give her more bananas in case it was a reaction, but she said it didn’t sound like it. She was going to put a referral in to see a neurologist. Usually it takes a while to get in to see one, so she would call to make an appointment for us, but just know it might take a couple months.
I couldn’t do it. I didn’t want to see another doctor.
I didn’t want my daughter to have another specialist that we had to deal with. I asked Mitch on the way home, can’t we just wait and see what happens before having to go to another doctor? I didn’t think I could really handle anymore bad news.
We heard from Reagan’s pediatrician later that day and she told us that Reagan had an appointment in a couple of months with a neurologist. I put it out of my head since it was months down the road. If nothing else happened, I could cancel it, no problem.
I think we went two to three weeks with no episodes of whatever happened before. The next time it happened, I remember being in the bathroom getting ready for the day. Reagan was playing in my room, right outside the bathroom door.
All of a sudden she shrieked this blood-curdling scream that I had never heard come from her before.
I thought maybe she pinched her finger in a toy, or something. I went to her and started looking for an injury. As soon as I picked her up, she went limp. Once again, she was dead weight, her face changed and I knew it was happening again. This time there was some grunting and twitching. I put her on my bed, and called Mitch to come home. I didn’t call 911 this time because they didn’t do anything for her before. I could deal with this at home. I just needed my husband.
I contacted her pediatrician to let her know the same thing happened again, only this time Reagan screamed before it happened. This is when she let me know that sometimes people can feel a seizure coming on. Reagan was a baby, and couldn’t talk. This is the only way that she could let anyone know that she was scared, or that she felt weird. She somehow got us to the top of the list to see the neurologist and we were able to see him within the next couple weeks.
Based on the information that we gave him, he told us that it sounded like she was having seizures.
He wanted us to start her on medication, have a CT scan done, and if this happened again to video tape it. It would be the best way for him to get a true diagnosis for her. After all the tests were done, Reagan was officially diagnosed with Epilepsy.
We started her on Keppra, an anti seizure medication, and I had my phone by my side at all times. The Keppra seemed to make it worse for Reagan. Soon after she started it, she had three seizures in a matter of six days! And I had to record it. It was horrible. Reagan screamed each time one was about to start. That’s how I knew to get my phone out and hit record. It broke my heart that this was now becoming a normal thing. I would call Mitch while he was at work to let him know. He would ask if I wanted him to come home, and I just didn’t know. There was nothing that he could do. By the time he got home, her seizure was over and she would be sleeping the day away.
I insisted that the neurologist change her medication. Three seizures in six days was not okay with me.
This medication was doing more harm than good. He wanted me to wait a little while longer, but I said no. This was the first time that I really, truly became an advocate for my daughter. I went with my gut, stood my ground, and insisted that her meds be changed. Her neurologist put in the order for a new medication and I could pick it up the next day. She started on Trileptol, another anti seizure medication, and the seizures went away! Could this possibly be the end of our nightmare? Could this medication be the answer to prayer, and Reagan could just be a baby for a little while?
