A year ago, I couldn’t have told you anything about epilepsy. Nor would I be writing this post in November for National Epilepsy Awareness Month. However, while driving to Ikea for a fun day of shopping last year, the unthinkable happened – my almost two-year-old daughter had a seizure in her car seat. My mother (who was in the passenger seat) heard a strange, almost choking-like sound. She said, “You need to pull over right now. I think she’s having a seizure.” I pulled off to the side of a busy Colorado freeway and called 911 with shaking hands of disbelief. Listening to the 911 dispatchers directions, I took my daughter out of her car seat and held my sweet child until the ambulance arrived.
As a parent, I can’t begin to describe how scary and disturbing it is to watch your child have a seizure. I didn’t know what to do at the time except tell her that I was right there for her. I was in such a state of shock. Parenting is hard enough as it is, but when you feel so helpless and don’t know what’s happening to your child, it’s incredibly difficult. Multiple tests were done that day, but the results found nothing. So we were discharged and told to wait and see if she had another seizure.
One week later, while looking at our new baby monitor (we had never used one before), my daughter had another seizure in her sleep. Calling 911 again, we headed back to the ER. After meeting with a neurologist, my daughter was diagnosed with epilepsy after having generalized tonic-clonic seizures.
What Exactly Is Epilepsy?
Epilepsy is a neurological condition that affects the nervous system and is caused by disturbances in electrical activity to the brain. A person is diagnosed with epilepsy when they’ve experienced at least two, unprovoked seizures. Most seizures in children aren’t associated with a definite cause, however, which is really frustrating. As a parent, all you want are answers. Instead, we had to quickly learn as much as we could about what would become the new “normal” for our lives.
What Is It Like To Parent A Child With Epilepsy?
There are so many feelings that you experience when your child is diagnosed with epilepsy. While it’s normal (and easy) to do, don’t rely too much on Dr. Google. Often, the internet leads you down a deep black hole of information. When you’re in shock and disbelief, it’s good to educate yourself. However, remember that you should ultimately have faith in the medical professionals. With the advice from my mother that my husband and I are our child’s best advocates, we set off on our new journey. To this day, we continue to learn more and educate ourselves and others about epilepsy.
Our routine is different from other parents of three-year-olds. Here are a few of the differences:
- My daughter takes anti-seizure medicine twice a day. We call it “Princess” medicine, and she’s usually amazing at taking it. Some days she protests because, well, she’s three. On those days, we resort to putting on a TV show for distraction. This medicine cannot be missed because that can cause her to have a seizure.
- Sleep-Deprived EEG tests. These are tough for a toddler. We keep our daughter up all night and then once she’s been asleep for four hours, we wake her up and take her to her appointment. On the car ride, we have to make sure she doesn’t fall asleep before the test, which is rough. Soothing our crying/exhausted daughter as the technician glues the EEG leads on her head breaks my heart.
- We bring emergency medicine everywhere. This is to administer in case our daughter has a seizure that lasts longer than five minutes.
- Having to do an MRI. Fortunately, we’ve only had to do one of these. However, because of my daughter’s age, she had to be given anesthesia. This was tough on us as parents, but we were so proud of our brave girl.
When we got the initial diagnosis, we experienced a multitude of emotions – shock, confusion, worry (we were glued to the monitor and didn’t sleep well a majority of this past year), anxiety, and guilt. Additionally, we had so many questions.
Now, as we enter our second year as a family living with a child who has epilepsy, we’re learning about our various coping strategies. While I don’t want to be a helicopter mom, I do supervise my daughter more closely in certain situations. Heights (big playgrounds) and water make me nervous, especially since our neurologist informed us that those are places to be extra cautious. However, I want my child to grow up knowing that epilepsy is just a part of her and doesn’t define her. As her parent, trying to be protective but worrying less is a daily lesson. Instead of anticipating and worrying so much about what may happen, I’m learning to let go more and let my child do all the “kid things” that she can.
Spreading Awareness about Epilepsy
About 50-60% of children that have epilepsy will outgrow the disorder and be able to stop their anti-seizure medicine. We hope that will be the case for our daughter, and that someday (with the bright scientific minds out there), there will be a cure for all who are living with epilepsy.
Until then, please help us by spreading awareness. Informing others about epilepsy dispels the myths and takes away stigmas that people may have. Wear the epilepsy awareness color of purple this month, and check out the information below for what to do (and not do) should you encounter someone having a seizure.
Seizure First Aid:
- Stay calm
- Try to remember the time that the seizure began
- Move the person away from anything hard or sharp
- Roll the person onto their side so they can keep breathing
- Reassure the person you are there with them and that they are safe
What Not To Do:
- Don’t try and hold the person down
- Don’t put anything in the person’s mouth
Call 911 if:
- The seizure lasts longer than five minutes
- They have another seizure
- The person gets hurt
- The person has never had a seizure before
- The seizure happens in the water
- You don’t know what else to do