Epilepsy in Childhood: My Personal Experience
Last updated: September 2023
Have you ever wondered what it's like to be a child who doesn't know anything about needles, hospitals, or even getting sick? A child who doesn't know how the body gets sick or why they might be sick? All I remember as a child was wanting to eat ice cream, watch movies, go to the park to play with my friends, and get messy while baking a cake with my mom.
Then I remember nights where I felt like I was being twisted by someone. I didn't understand why I kept feeling this. It only happened at night after I fell asleep. I thought I was dreaming of this weird twisting sensation that was happening to me every night. It was so scary.
The next day, I was so normal, playing with my sisters. My parents couldn't find anything wrong with me.
My first seizures as a child
Until one day, my parents noticed my body shaking involuntarily while I was sleeping. I was having a seizure. They rushed me to the hospital, where I had another seizure. I woke up to a few injections in my hand.
I was scared and confused. I didn't understand why I was sick. Hospitals were a scary place to be, and needles were my enemy. I wanted to go home.
"You are sick," said my mom. "Doctors are figuring out what's wrong with your body." At that point, I was just thinking that this will heal and I will be normal again. I knew something was wrong with me, but I didn't understand what. I knew ice cream could cure me, and the playground was a magical place to make me happy. That's all I needed.
Diagnosed with epilepsy... Now what?
After a number of tests, doctors told my parents that I have epilepsy, a condition that I would have to live with for the rest of my life. I could see my mom's face filled with tears while trying to smile back at me.
There were so many medications that I had to go through trying. Sometimes I had so many seizures in a day because the medications didn't suit me. My mom had to keep a close eye on me all the time.
Finally, carbamazepine was suitable for me, and it kept my seizures well controlled. But it had been really tiring and stressful to find a suitable medication that worked for my body.
Childhood and teen years with epilepsy
My childhood and teenage years were the darkest moments of my life. I didn't know what was happening to my body, and I didn't have the support I needed.
But at 18, I learned more about epilepsy and started to feel better. I realised that it was a manageable condition, and that there were many people who lived full and normal lives with epilepsy.
At age 21, I began volunteering at a nearby epilepsy foundation, where I assisted other epilepsy-affected children and families. I wanted to share my story and let them know that they weren't alone.
Epilepsy's effect on childhood
I was a slow learner due to my epilepsy, and I always wondered why my sister was smarter than I was. But I also learned that epilepsy doesn't define me. I'm still capable of achieving my dreams, and I'm grateful for the support I received.
Supporting a child with epilepsy
Here is my advice on how you can help support a child with epilepsy, based on my personal experience:
- Educate yourself about epilepsy. You will gain a better understanding of the problem and how to cope with it.
- Talk to your child about their epilepsy. This will help them feel comfortable talking about their condition and understand what to expect.
- Be patient and understanding with your child. They may have days when they are feeling well, and they may have days when they are feeling unwell. No matter what, it's important to be there for them.
- As a parent or caregiver, you should encourage your kid to get involved in things he or she finds interesting. They'll gain confidence and feel more at ease as a result.
- Be mindful about them receiving enough rest and having a balanced diet.
- Take good care of yourself. It's crucial to find ways to relax and calm down because caring for a child with epilepsy can be stressful.
There is support and hope
Epilepsy is a manageable condition, and there is so much hope for children with epilepsy. With the right support, children with epilepsy can live full and happy lives.
If you are a child with epilepsy, or if you are a parent of a child with epilepsy, please know that you are not alone. There are many resources available to help you, and there is hope for a bright future.
Since being diagnosed with epilepsy, has your memory been impacted?