Today my family is sporting purple. In Kansas, that isn’t a strange thing because probably half of the people I know wear purple for the Kansas State Wildcats. However, today we are sporting purple for another reason, in honor and to raise awareness for Epilepsy.
I never dreamed I would be an epilepsy mom. This isn’t a club I would ever want to join. A little over a year ago. I noticed my daughter had started to have staring spells. We had just started medication for ADHD, and when I talked to her doctor it was determined that it was due to the dosage. We adjusted the dosage and watched to see what happened, but they never went away. Finally we were sent for a one hour EEG. When it came back normal, the pediatrician told us it was just daydreaming and ADHD. I heard what the doctor said, but I wasn’t convinced. I watched her and searched online every night trying to figure out what these were. If not seizures, then what?
Late one night I found some information about absence seizures. This led me to a facebook group for parents of kids with absence seizures. After reading and watching videos, I knew that this is what we were dealing with. And I found out that just because she didn’t have on during her one hour EEG, it meant nothing because it would only read if she had one during that time.
I took this information to her doctor and I was finally able to get her a referral to a neurologist. During our initial appointment, she actually had one in the office and the Dr. was able to see it. We were then scheduled for a 24 hour EEG. Once we finally got her hooked up we were able to catch several absence seizures and get our epilepsy diagnosis. Our specialist was quick to get her on medication, and we are working hard to get to the right dosage so that we can have complete seizure control. I am so thankful to see this helping her!
We don’t know if she will outgrow it. Most kids do, but at this point its just a waiting game. All I can do is make sure she gets her medicine on time, have open communication with her doctor and pray for healing.
I just wish it hadn’t taken so long to get a diagnosis. For a while I thought the ADHD medicine was causing it, but looking back I know she was having them before, just not as frequently. What her teachers mistook for daydreaming and not paying attention in class, were actually absence seizures. The ADHD medication just lowered the seizure threshold and made them occur more frequently. I don’t blame the teachers, because they honestly didn’t know. However, it’s time for people to be more aware. The head of Neuro at the hospital told me that this happens pretty frequently. People think it’s daydreaming, and it can take years to get a diagnosis.
We can not just medicate our kids and hope for the best. We can not just assume that if kids are staring off into space its because they have attention problems. And we can not be making these kids suffer while we try to figure out what’s going on. I hope and pray that this information helps someone. Also, my daughter is totally fine with me sharing this because she also wants to help kids going through the same thing.
If you are a Mama, searching the internet, trying to figure out why your kid is staring off into space, or daydreaming, or stopping mid-sentence to look at the sky, I hope and pray that this helps you get the help you need. Ask for a referral. Get this checked out. If it’s nothing, then awesome, but if it’s something you can bring your kid so much relief.
Here’s a photo I saw today and shared on Instagram. It’s such a good representation of what kids with Absence Epilepsy are dealing with.