My son, Braedan, had epilepsy. I say, “had” because he was told by his doctor last year that he is no longer epileptic. Yay!!!
Braedan suffered his first seizure at age 6½ while at home from school with a migraine headache. He was sitting on the couch in our living room when I noticed his eyes roll back and he started having a seizure right in front of me. I called 911. By the time that both the firefighters and the paramedics arrived, my son was still having a seizure. In fact, we went by ambulance to the hospital with sirens blowing as he was still having a seizure. His seizure lasted for at least 20 minutes. Once at the hospital he was given medication and they were able to stop the seizure. The pediatrician told me that he would probably be asleep for 24 hours due to exhaustion from the length of seizure and the medication. He woke up about 6 hours later totally confused, in a hospital bed, I was so lucky to be beside him to comfort him.
This experience was extremely traumatic for Braedan and for me. It was one of the worst things to witness as a parent. My son had never had a seizure before and as far as I knew we didn’t have anyone with epilepsy in the family on either side. It was a complete mystery. He went on to have a CT scan, an MRI, and several neurological tests done as well as seeing Dr. Mary Connolly, Epileptologist, an epilepsy specialist, at BC Children’s Hospital in Vancouver for several years. During the MRI it was discovered that he had scarring on his brain. At this point, it had been more than 6 months since the seizure and he had not had any more seizures since. We were given the option to put him on anti-seizure medication, but we chose not to, due to side effects and the fact that he had not had any more seizures since the first one.
Braedan went another 5 years before we started noticing some odd behaviour that we found out was actually seizure activity. We were expecting him to have seizures like the first one where his eyes rolled back and he was convulsing and lost consciousness. However, we found out that seizures can present themselves in many different ways. He would look at us but his eyes would kind of twitch a bit or he looked as though he was looking past us and he would speak to us, but it would be like gibberish and didn’t make any sense to us. Then all of a sudden he would come out of it and be ok. He wouldn’t remember what he said or why he behaved that way. We would then forget about it and move on. It was not until my mom noticed it and told us that he was having a seizure. We didn’t believe it as it didn’t seem like one, but decided to make an appointment with Dr. Connolly to discuss it. While at the appointment at BC Children’s Hospital he had a seizure right in front of the doctor. On our way home, he had three more.
After that appointment we decided it was time to try medication. We tried 3 different medications before we found one that worked for Braedan. Dr. Connolly also mentioned to our son that he was a candidate for surgery. We decided to talk about it and explore the options and because Braedan was almost 17 years old we let him make the ultimate decision.
Braedan desperately wanted to be “normal”. I think that it was when he got his “N” (novice driver’s license) that really opened his eyes. He only had his license for 4 days when he was driving my car home and blacked out on our street. The car hit a telephone pole and was totaled.. Luckily, he was not seriously injured. If he had blacked out minutes earlier he would have been on a major highway or on the windy road up to our house that has drops off the side.. The accident resulted in him losing his license until he went through a period of 1-year seizure free. He was in grade 12 and taking a metal fabrication/welding course and he wanted to be like all of his friends. He would be out of school soon and into the job force with no driver’s license. At this point, he didn’t want to wait any longer and told Dr. Connolly that he wanted to get the surgery. It was also important to his doctor that he got the surgery done before he turned 18, so that it could be done at Children’s Hospital.
We were so very proud of him and how brave he was. We spent the whole time with him while in the hospital and during his recovery time. Dr. Connolly and the team of surgeons, nurses, and specialists were absolutely amazing. Dr. Connolly believed the surgery to be a success. The surgery lasted more than 6 hours and they discovered a lot of “activity” that they feel was removed. Dr. Connolly also told us that she felt that Braedan was having seizures that we may have missed as they would have been subtle. Braedan took 2 weeks off of school and his teachers were very supportive and understanding of the situation. He had an amazing group of friends as well as family that all came to cheer him up and encourage him. He is our middle child and he has an older brother and younger brother that were also incredible. He continued on his medication for the year following the surgery and was able to get his driver’s license back again 6 months after the surgery. That made him extremely happy. The only side effect of the surgery is his eyesight was slightly affected but not anything that he would really notice, as it is the vision to the very top corners when looking to the side.
Here we are almost 5 years after the surgery and he has not had any seizures. He had an appointment with Dr. Connolly last year and she told him that he should consider himself cured of epilepsy. She was happy that we reported no seizure activity. He is also being referred to a Neurologist at Vancouver General Hospital, instead of going to Children’s Hospital, as he is now an adult.
The surgery has definitely been a life changing experience for our son. I see some of the effects that it has given to him regarding his emotions. He deals with ups and downs with his emotions.
Braedan is currently working as a ski lift operator at a local mountain and wants to pursue work as a welder/fabricator. He has completed level 3 for metal fabrication and will complete level 4 in April. He will be turning 21 this April and is currently living at home with us.
This is my story as a parent of a child with epilepsy and I am hoping that he will someday share his story with others. It has been a journey for him that I am sure others may want to hear more about.
We don’t know what caused his epilepsy. As a mom, I still wonder if it will come back one day although each year that passes I feel more confident that it will not.
-Katherine Perez (Braeden's Mom)