Jack & Henry’s Story
As told by their Mom, Jackie:
We have three beautiful boys and two of them have epilepsy- Henry (7) and Jack (4). In June of 2021, Henry had his first seizure (tonic clonic, 1 minute long) just before he turned 4. He was at vacation bible school and I was fortunate enough to be volunteering at the same location. After a terrifying two month wait, his EEG told us what we had been fearing: Henry has epilepsy. He started on Keppra immediately.
In August of 2022, Jack had his first seizure (tonic clonic, 7 minutes long) at the age of 2.5. It was the first day at the sitters after summer break and we were stunned when the sitter called us to say Jack was having a seizure- we were in shock because we always expected this call about Henry, not Jack. Another ambulance ride to the emergency and an EEG a month later confirmed what we knew the outcome would be- an epilepsy diagnosis. A year later, Jack had his second tonic clonic and started Keppra.
In October of 2022, Henry had his first absence seizure. We had absolutely no idea what was happening because we didn’t know to look for any type of seizure other than tonic clonic. After witnessing these seizures for about a week, we contacted his doctor who informed us that they were a type of seizure and increased his dosage.
A month later, our third son was born and we started to see Henry’s behaviors increase drastically. Our stubborn son went from just “ornery” to screaming for hours at a time and breaking furniture after school. Breaks from school, a time we should have cherished as a family of educators, became a dreaded time that we couldn’t wait to get through.
In fall of 2023 our doctor decided it was time for a medication change because of the behaviors and an appearance of more absence seizures. We tried multiple different medications with a variety of awful symptoms and in December of 2023 had an overnight EEG to see if he was having any nocturnal seizures. The neurologist did not see any nocturnal seizures but she was seeing multiple absence seizures a day that we were completely missing. Hence, another medication change. This brought so much fear to our family because our sweet boy had lived through rage for years while we watched, unaware of what medication was doing to him. This change though was one that we couldn’t have asked for a better outcome.
Right now the boys are thriving and we have a great medication balance. Both boys are currently seizure free-Jack since July of 2023 and Henry since January of 2024. We know this may change at any time but are so grateful for where they are now and hopeful for their futures.
Jackie and Andy B.
Kind words you would like to share with a parent or someone newly diagnosed:
“It is terrifying to see your precious baby(ies) having a seizure of any kind. But the words of our doctor always echo in our heads whenever we go through it – “we know more will happen but his brain will be okay.” It is scary but can be managed. And when it doesn’t feel managed, you keep going.”
Connect with Jackie & Andy:
Instagram: @bonathja
