My son Jerren started showing signs of narcolepsy in 3rd grade but I believe it was even earlier than that. In second grade, his teacher was always telling me that I needed to put him to bed at an earlier time. I was putting him to bed at 9 p.m. every night. In 3rd grade, my mom told me when she was babysitting him, he could hardly walk for a brief moment. He explained it as it “felt like my legs turned against me and just did what they wanted to!” At school they said he was dragging a leg and they took a picture of him and one side of his face was dropping. I took him to the doctor and they said he could have suffered a mini stroke. They didn’t have an idea that it could have been narcolepsy. I started taking videos of him walking to show the doctors what was happening. While watching the scene in Bambi, where the mother was shot, he began to cry and fell over on me. He was limp and looked like he couldn’t breathe. He came to and was slurring his speech and his hands and arms were weak. I freaked out and took him to the emergency room. They thought he was having seizures and just prescribed a seizure medication. I didn’t give it to him. I knew it wasn’t a seizure.
Then it kept happening. I continued to take videos of him because when we did go to the ER, no doctor could figure out what was wrong. One doctor said he is just sleepy but I knew it was more than just being sleepy. Finally, he was seen by his primary care doctor. He wouldn’t stay awake through the visit and his appearance had the doctor so concerned that he admitted my son to the hospital. They did 24 hour surveillance and a psychiatrist watched the video and said, “This is narcolepsy.” From there, testing was done, a spinal tap, etc. He was moved three hours away to Kansas City’s Children’s Mercy Hospital and was admitted. The specialist said it was the worst he had seen. We have been through terrible hallucinations and cataplexy. He is currently being home-schooled because of all the issues we had with the schools.
Before Jerren was diagnosed, the only thing I knew about narcolepsy was movie portrayals, people falling asleep suddenly and that’s all. Now we know how serious it is. Jerren doesn’t just fall asleep suddenly, narcolepsy has left him with the inability to get a quality sleep at night. My son was only sleeping for 30 minutes to an hour every night at fragmented times. Our doctor told us that our brains need 8 hours to repair each night, so Jerren can no longer get the restorative, restful sleep. My son is currently taking the best medication I could find which has helped tremendously. He still has a tough time but not as tough. He doesn’t lose full control of his muscles anymore. He experiences facial ticks, tongue protruding but he can laugh again. He must take his medication every day though, when he’s been without it even just for two days, he falls apart.
To learn more about narcolepsy, visit WakeUpNarcolepsy.org.
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