Before I get into the past month’s events, I wanted to share a little background information on our story and the steps that we took to get to where we are..
Since I was pregnant with Brady, this little man has kept us on our toes. At my early-risk assessment ultrasound at the end of my first trimester, they noticed a few markers that were linked to an increased risk of Downs syndrome. I went and got the genetic testing done, and found out that he did not have Downs (and also that he was a he almost a month earlier than an ultrasound could have told us! I love modern medicine!). At my next ultrasound, my OB was concerned with the size of the ventricles in his brain, as well as some spotting throughout.
We were sent to a specialist about 2 hours away to do a fetal MRI (even though I knew I would not abort even if something WAS wrong, I felt the need to be prepared). He had gray matter called “heterotopia”, which are neurons that are located in the wrong parts of the brain. We continued to keep an eye on it with frequent ultrasounds, and when he was born they did an ultrasound of his head at the hospital. The ventricles had not gotten bigger, but they were not smaller, either.
Fast forward to six months. He’s not sitting up, or meeting any milestones, for that matter. I am no stranger to developmental delays, and I know that all babies develop differently, but our pediatrician and I decided that getting him evaluated by Early Interventions wouldn’t hurt. A physical therapist and speech therapist came out and we decided that he would begin physical therapy. He had a strong preference for his right hand and this therapist felt confident that she could get him on the right track with using both hands equally and starting to hit his milestones. And boy, did she ever. I could not imagine our life without K. She is amazing! After he started getting some crawling and arm strength under his belt, we decided to start him on speech therapy because he was not saying any words. Enter B, who is equally amazing!
We were seeing a neurologist at Boston Children’s hospital, and while she was very kind and got Brady an MRI to get a better idea of what was going on in his brain, we always felt that we would leave with more questions than we walked in with. When we would ask a question, the answer would always be some form of “I’m not sure”. I also discovered while reading our patient notes that something was noticed on Brady’s MRI a month before she called to tell me, and I needed a doctor that I could trust. I decided to get a second opinion at Mass General Hospital, where we found Dr. D. After our first meeting with him, we felt confident with our choice and decided to stick with MGH. He told us our son had an 80% chance of developing seizures and told us what to do if one happened. We agreed to do another MRI after he turned 2 and his brain was more developed. While all of this scared the crap out of me, it helped me to feel prepared.
We weren’t sure if, or when, the seizures would happen. Every day felt like a ticking time bomb. Until one day, that bomb exploded and blew every part of my life that I thought I knew out of the water.
We were sitting side by side in my bed on Tuesday, a couple of days after his second birthday, watching Thomas the Train, when suddenly I felt him go backwards. I looked over and his eyes were fixed on the ceiling and his right arm was shaking. It only lasted about 10 seconds, and when he snapped out of it he seemed okay, but we went into the ER per our pediatrician and his neurologist.
Lucky for me, one of my best friends’ mom is an ER nurse and took us right back to evaluate Brady. His neurologist ordered an EEG the next day, and scheduled an appointment for us to come in the day after that to discuss the EEG results. It was a simple test where they hook wires up to your head to measure the brain waves. He actually fell asleep right at the beginning which was helpful.
Even though I knew what I saw was a seizure, I went in to that appointment on Thursday hoping that maybe I was wrong. But it was confirmed by the high spikes in the EEG. Our little guy has epilepsy. He has been started on medication that makes him a bit cranky, but hopefully it is something his body will adjust to.
I am thankful that the seizure seemed mild, and hope that if any more do occur that they end up being just as mild. But this whole situation has really helped me to see how quickly life can change. I urge everyone to be knowledgeable in seizure first aid, because anyone with a brain can have a seizure.