March 26th is Purple Day; a day dedicated to creating awareness about Epilepsy. Epilepsy can be explained as a tendency to have recurrent seizures; it is a neurological disorder and is not contagious.
This is Henry. Henry is a bright; energetic; loving little boy who happens to have epilepsy. He loves cars; trucks; books and his brother and sister! Henry is my oldest child and he will be three years old in a few short months.
The first episode
Henry had his first seizure in November of last year and I will never forget that day. He was sitting at the kitchen table having a snack one moment and the next he was on the floor having a seizure. It took me a few seconds to recognize what was happening and I immediately called 911. By the time the ambulance had arrived the seizure was over and Henry was quite groggy; he was taken by ambulance to the local Children’s Hospital to be checked over by a doctor. After assessing the situation the doctor sent us home with information on Epilepsy and an appointment to meet with a Pediatric Neurologist.
When we met with the Neurologist she told me Henry had epilepsy and I was stunned… What does that mean? What implications does this have on his life? Are you sure? How can this be? When she asked me if I had any questions I simply said ‘no’. I didn’t know what to ask or what to expect. A few days later Henry was sent for an EEG to confirm the abnormal brain activity. Shortly after the diagnosis he was started on a medication to ‘control the seizures’. The tricky thing about his medication is that the dose is based on his weight and as a toddler he is growing rapidly so it needs to be adjusted accordingly.
Ups and Downs
Just when we think things are going well and the medication is doing it’s ‘job’, Henry’s seizures intensify in duration and/or frequency. There are different types of seizures and Henry has experienced a range. As a parent it is incredibly hard to watch your child suffer from any problems, and because epilepsy is so unpredictable it leaves us feeling helpless. We have been told that Henry may out grow his condition when he reaches adolescence but only time will tell…
Purple Day [March 26th] was started to raise awareness globally; approximately 50 million people around the world suffer from epilepsy (source).
Epilepsy is a lot more common than I realized and as I have been wading through information I learned that approximately 1 in 100 people suffer from this disorder (source).
- Forgetting to take prescribed seizure medication
- Lack of sleep
- Missing meals
- Stress, excitement, emotional upset
- Menstrual cycle / hormonal changes
- Illness or fever
- Low seizure medication levels
- Medications other than prescribed seizure medication
- Flickering lights of computers, television, videos, etc., and sometimes even bright sunlight
- Street drugs
If someone you know is struggling with epilepsy there is support; here are a few resources that I found helpful
Thank you for sharing this, especially the support resources. My youngest is currently undergoing testing to find out what caused his seizures last month and it’s been very stressful.
I will definitely be checking out those links
Thank you for sharing your story – I’ve learned a lot from reading your post!