Sleep has always been inconsistent for Nicholas. Some nights he’ll sleep through the night, while other nights he wakes up 1 to 3 times during the night. When he does wake up, I usually have to go in his room and help him go back to sleep. Falling asleep isn’t the problem, it’s staying asleep. Crying it out doesn’t work either. We learned that early on.

We’ve tried many remedies from medication like Melatonin and Benadryl to essential oils to a sound machine, music, turning off the lights, keep the lights on, weighted blanket, etc.

After consulting with a sleep therapist we tried some different things. We turned off his light because the yellow light could possibly have been interrupting his REM cycle and waking him up. She suggested if we need to keep a light on it should be red or blue. We put bumpers around the inside of his crib to help him feel enclosed and because he hits his head a lot during the night. I also try my hardest to not pick him up, and just go in his room and sit in the chair.

After trying the new suggestions with wake-ups still, we decided to try a sleep study to see if abnormal activity neurologically was happening. The worst part was getting the electrodes to stick to his head. He screamed a lot during that part, but once they were in, he fell asleep within 10 minutes. He woke up a few times during the night but went back to sleep pretty easily. We received results a few days later that showed Nicholas stopped breathing a few times for only a few seconds, which isn’t enough for him to have sleep apnea. He seized three times where he would shake and his left arm would straighten or tighten.

After doing an EEG later that week that had already been scheduled that showed Nicholas seizing once, we decided to do a full 24-hour study to see if the seizing was happening during the day as well.

We only had to stay one night in the hospital for the study. Again, the probes were the hardest part. Afterward he did really well. He fell asleep on his own and had a couple of wake-ups during the night. They found “strikes” in the back of his brain, which means he could have epilepsy. His doctor wanted to put him on medication anyway just in case.

I had trouble deciding on whether to start the medication for him. I don’t like medicating my kids if they don’t need it. I felt like he didn’t need it since he wasn’t having seizures at that moment. I even talked to his pediatrician about it. I realized the decision was simple. I have to do what’s best for my son and keep him safe.

Nicholas had his sleep study a little over a year ago. His sleep is still inconsistent. I still have no idea why he has frequent wake-ups or nothing at all. Sometimes I feel like it’s the temperature of his room, or that it’s too dark. It’s a mystery. I am glad we agreed to medicate because for all I know it could possibly save his life.