Parenting a child with epilepsy can be difficult to keep track of how many seizures your child has had, or when , or the different types and so on and so forth. When my son first received his diagnosis in 2014 I started to forget how many seizures he was having or what they look like or what may have triggered it . That information is very vital in order for the medical team to properly help your child as far as different treatments and medications. Your child’s doctors are not around them 24/7 so they may not know exactly what their seizures look like unless you describe it well or have a actual video footage.
A few months after my sons diagnosis I decided to get a notebook to track down when he had a seizure or any abnormal activity , how long it lasted, what he was doing before it , how he acted after the seizure, his body movement and the way his eyes looked during the seizure and whatever else I decide I should write down to remember . Also in that notebook I kept track of what medications he’s on and which ones he’s being taken off of and if the dosage increases or decreases . Whew that sounds like a lot to write down right ? But trust me it will be all worth it and it will help your child’s neurologist a lot if you actually keep track of yours child’s seizure history and you may be able to detect triggers , or patterns and by knowing the triggers and patterns that gives you a better chance to help prevent some seizures.
It’s also good to video tape a seizure or any abnormal activity if you can and just save it to your phone, computer or email for future references to show your child’s medical team if need be. But when you are videotaping please put safety first and if they are safe it would be fine to start the video and record the seizure to show the medical team for more accurate treatment options.
I also have a pill reminder app on my iPhone to help me remember every day to give my sons morning and evening medication. Also, the app reminds me of medication refills, you can just go to your iPhone App Store or android App Store and find a pill reminder app and download.
My most favorite tool to help me manage my son epilepsy is a app called young epilepsy it has a calendar where you can type in when a seizure occurs, the time, duration , and any emergency procedures that were needed. So if you don’t want to keep a old school notepad this app is very useful as well.
However; I hope these tips may help some of you because they really helped me manage my sons epilepsy condition and it keeps me very organized, and eliminates a lot of stress give these management tips a try and let me know how it works out for you 💜