Imagine dreading nights because it’s finally time to settle down and go to sleep. Your body is really tired and your very sleepy but your afraid that if you go to sleep what if your child has a seizure and you don’t wake up in time, what if it’s a silent seizure with minimal movement and you don’t awake at all to help them? What if your child is losing oxygen and you are not awake to help. What if your child silently cries out for help and you can’t help because you are asleep. Those are the thoughts of parenting a child with epilepsy. Night time alone causes so much anxiety for epilepsy patients and their caregivers because it’s very scary to think your child may have a seizure and you cant help. Many of us caregivers and parents wish we could stay up all night long watching our children with epilepsy but I don’t recommend that, we need our sleep as well and it wouldn’t really help anything by losing sleep to be honest. I’ve learned that, I used to stay up half of the night watching and worrying and trust me I felt the consequences the following morning lol.
I’m a very positive person but i’m also realistic about my feelings and thoughts. I like to be optimistic but i’m still human, I still get scared and I still feel afraid at times. I always think about the future like what if my son still has seizures when he gets older how will he sleep independently and safely. I still don’t have the answers to that. A lot of epilepsy parents sleep with their children who have epilepsy just to feel safe and assured, I feel like my son is more safe sleeping beside me than by himself. But there is equipment and technology out there that sounds off an alarm if their is aggressive movement etc but there is nothing to detect those silent, minimal movement seizures and that’s what frightens me the most unfortunately. We have to do what we can if you want your child sleeping with you than that is fine, but there are some equipment out there and video monitors you can research and look into when you are ready for your child to sleep alone.
A few tips I have found helpful to limit nocturnal seizures for my son are; the accurate dosage of medication at the appropriate time at night-try not to miss any dose of your medication, get an adequate amount of sleep every night ( try to set a bedtime for your child) try to eat as healthy as possible and not too late, and also I found the more exhausted my son may be before he goes to bed, the higher the risk is of him having a seizure at night or the following morning. These may not be scientifically proven ways to help but I find it helpful with my son. If you have any tips please feel free to comment below.