Two Year Seizure Anniversary And Looking Back On The Beginning
June 5, 2017 would be the day that our world was turned upside down. That previous December we welcomed our baby girl, Natalie, into this world. She was every inch of perfection. We couldn't have asked for a happier, healthier baby. The next few months we were overflowing with love and joy. Every little smile and snuggle would have my heart bursting at the seams. Our family felt whole and big brothers loved their little sister, too. Life couldn't get any better. However, when she was 5.5 months old our lives would be changed and our journey with epilepsy would begin.
It was 6am in the morning on June 5 and I had just finished nursing Natalie in bed. We were both drifting off back to sleep as she lay snuggled next to me. These were the best moments. But then something unusual happened. I felt what I thought was some serious shivering. But yet it seemed too rhythmic to be shivering. I was so confused and sat up to inspect her. Her right arm and leg were pulsing and jerking. I woke up Lane at this point. I then noticed that her little eyes were staring up to the right corner with rapid blinking. We went over our options - do we call the health line or do we drive into Humboldt hospital? But I had started to realize that this was a seizure and it wasn't stopping. We needed an ambulance and we needed it there now. We live a half an hour away from the nearest medical help. A half hour was too long to wait. What if it worsened and she quit breathing? The boys were still sleeping and so we jumped into the van to meet the ambulance halfway. There was no way we could strap her into her carseat while she was still seizing. I had to hold her. I don't think anyone could have pried her out of my hands at that point anyways. Mama bear was in full force and she was scared. We called auntie and uncle to come to our house as we were driving out of the yard. Praying that Garrett or Brandt didn't wake up before they got there. We are pretty much smack in the middle between Wakaw and Humboldt paramedics. On this day, 911 had dispatched the Wakaw ambulance. We had almost reached the ambulance halfway when the seizing finally stopped. One would think that you would feel relief when the seizing stops, but her one side that had been jerking, was now limp and not responding. She had no movement on her right side. I had so many thoughts going through my head at this point. Will she be permanently paralyzed? Will she every regain use of her arm? We reached the paramedics and all her vitals checked out well. She was breathing throughout her seizure which is a very good thing. We figured her seizure lasted approximately 20 minutes. It was decided that we would be transported on to Royal University Hospital in Saskatoon. I rode in the back of the ambulance. Lane went back home to grab a few essentials, and then would meet me in Saskatoon.
Throughout our journey, I often look back and realize that being sent to Wakaw ambulance was a blessing on this particular day. It was the only time we’ve ever been sent to Wakaw paramedics rather than Humboldt and now that we’ve reached a new normal, Humboldt is where I prefer to go. And the reason I feel it was a blessing is because we were taken straight to the Royal University Hospital in Saskatoon, rather than being assessed in our smaller community of Humboldt first which would have made for an even longer day and the possibility that they may have not felt it necessary to go to RUH. When we arrived in Saskatoon, we met Dr. Almubarak, our pediatric neurologist. They did every test under the sun. We experienced our first of many EEG’s. An EEG is a series of carefully placed electrodes on the head to monitor the electrical activity of the brain. They can detect seizure activity. They also did a lumbar puncture to test the fluid in her spinal cord for an infection which can also cause seizures. They did an MRI of her brain to look for any type of damage or tutors or underlying conditions. Handing your baby off to the anesthesiologists and told to come back in an hour is one of the hardest things I’ve had to do! She had bloodwork done. She was the happiest baby and just smiled up at the nurses working on her. One of the most difficult things for us that day was that Natalie had to be fasted for many of these tests. Which meant trying to keep my hungry breast fed baby happy whilst undergoing examinations. I couldn’t hold her because she just wanted to try to nurse. It was a good thing Dad (Lane) was with us.
It was a long hard day and all the testing came back negative. They did not find anything. Which one has mixed feeling about because you want to know the reason why your baby was seizing. We were told it could very likely be a one time event. However, our pediatric neurologist wanted to place us on an anti seizure medication for a few reason. One, because her seizure was prolonged (longer than 5 minutes). Two, because we live so far from a hospital. And three, because if they have a second seizure, they are more likely to have a third, and if they have a third they are more likely to have a fourth, and so on. So we went home that day preparing ourselves that our almost 6 month baby would be on daily medication for at least the next two years of her life and hoping for the best. The reason I say two years is because typically medical specialists like to see two years of being seizure free before trying to wean off a medication and be medication free. So, if this truly was a one off, we would have to wait to see what would happen in the next two year.
Well, here we are two years later, and I can tell you that things got serious. I will have to save most of it for a Part 2 blog post of our journey as it has been complex. In that first year, seizures progressed in severity, length, and frequency. We have made many 911 calls, ridden in ambulance, and feared for our daughters life. I quit my job to be primary care giver for my daughter. We committed a year and a half to strict ketogenic diet therapy. But for now to make a long story short, Natalie was diagnosed with an SCN1A genetic mutation and received a Dravet Syndrome diagnosis. Two years later we are in a much better place. We have found better medications that help keep the long tonic clonics at bay. However, we still struggle with daily drop seizures. These are so very dangerous as she’s very active and there is no warning. We have a few things we are working on to help give better control but this condition she has is considered drug resistant so it is not easy! I have a Facebook page called Natalie Shine Bright which I post regularly on with her updates. If you would like to follow closer on her journey, I would be more than happy to have you join our group!
Despite our difficult journey, we work to keep a smile on our face and as much normalcy in our lives as possible! We have to revolve many things around her and her schedule to ensure she is always well rested. There are events we miss out on or avoid due to seizure triggers like heat or too much excitement. Her two brothers have had to adapt as well. But they do such a great job and are so resilient and loving. There was a time when seizures were so scary and she would quit breathing that I thought we would have to move off the farm rather than risk her life living so far from emergency care. Thankfully for her new medication which has prevented many tonic clonics, I feel we can persevere and continue on life as we have intended at the farm. As farm life is a good life. It was hard to go back and relive the experience of Natalie first seizure. But I felt it was important to write about. Looking back, we have been through so much. But here we are, and we have lived through it, but not without a lot of love and support from our friends, family, and community.