December 6, 2014. It's one of those days that I'd like to forget, but is forever etched into my memory bank. The ground outside was covered in snow, so I spent a good 30 minutes getting all five kids suited up to go play in it - only to have them run back in 10 minutes later with cold hands and red noses. We stripped off the wet, snowy clothes and headed to the kitchen for lunch. The kids all plopped down at the table, and I started making grilled cheese sandwiches. I had my back to them when I heard a loud thud. I whipped around to see Enzo, my then three-year old son, on the ground, flopping around in convulsions. I scooped him up and yelled for Micah. Within 30 seconds Enzo had relaxed and quit seizing, but his eyes were glazed. We called 911, and the ambulance was at our house in minutes, along with most of our neighbors.
By the time the paramedics were in the house Enzo was talking and mostly coherent. They suggested we drive him to the emergency room to be checked out, so we did. When we arrived they noticed Enzo had a low grade fever and assumed that was what had caused the seizure. My niece had done the same thing once before, so it seemed to be a logical conclusion. To be safe, they went ahead and did some blood work (to test his electrolyte levels) and a CT scan (to check for bleeds in his brain, tumors, and all sorts of scary stuff). Everything came back normal, and we were sent home with instructions to work extra hard to keep him fever-free. We assumed that was the end of it, but we were wrong.
The following week my family came in to visit for Christmas. My brother was sleeping in Enzo's room with him, and was awakened to Enzo grunting and making strange sounds in his sleep. The next night we moved Enzo to our bed. We soon realized he'd been having nocturnal seizures nearly every night, and we had no idea how long it had been happening. We called our family doctor. He suggested we take him to the ER at the Children's Hospital in Oklahoma City, and we did. They asked lots of questions, did a pretty minor physical examination, and sent us home with our first seizure medication, Keppra, and a referral to a pediatric neurologist.
We met with the neurologist, who explained to us the steps to figuring out why our child was having seizures, which was basically just a long line of lab tests and trial-and-error medicating. We increased his dosage of Keppra, and the night time seizures stopped. Unfortunately, that's when the day time 'drop' seizures started. Drop seizures look very similar to the motion that happens when a person is falling asleep and suddenly jerks back awake, except they can happen at any time. In addition to the unknown effect of these seizure types on the brain, they can do serious physical damage, especially if they happen while Enzo is standing, walking, running, sitting at a table, pretty much anything other than laying down. His arms and head fly forward with full force when he has one. Each only lasts a second or two, but that's long enough to do some major damage to his face.
Enzo had his first EEG a couple months after the drop seizures started; the results came back normal. Still no answers. His neurologist started us on our second seizure medication, Zonisamide, to try and control the new seizure type. We saw some improvement. We started trying to wean the Keppra. Seizure medications have serious and severe side effects, and we really wanted him on as little medication as possible. Kids on Keppra often suffer from uncontrollable rage, lethargy, among other things, possibly including some long-term side effects we don't know about yet. Sadly, weaning turned out not to be an option for us. He needed both to have any sort of control of the seizures. Luckily, we've seen only minimal side effects so far.
As time went on we learned to deal with the seizures. Enzo almost always had bruises on his face, and a band-aid on his forehead. We tried to maintain some sort of normalcy for him, but it was hard. One time, we took a trip to visit my mom in Louisiana, he had a seizure, smashed his face into her coffee table, and knocked out his front tooth. We learned that changes to his schedule, lack of sleep, stress, anxiety, and illness all caused his condition to worsen. We were on pins and needles all the time.
And then, in the summer of 2015, we did genetic testing and discovered that Enzo had an SCN1A mutation. It's basically a genetic mutation that affects one of the Sodium channels in his brain. It's a common mutation in kids with epilepsy and landed us with a diagnosis, Dravet Syndrome.
Google 'Dravet Syndrome' if you'd like to read what I read driving home from the doctor's office after we heard the news. I was so happy to finally have an answer, but devastated to find out what it was. My expectations for Enzo's life were flipped upside down. The reality of what he'd have to deal with - of what I would have to deal with - hit me and it hit hard. I was lucky enough to find some support groups on Facebook: Dravet Support Group and (Natural Alternatives for Dravet Syndrome. Parents in these groups walked me through my grief and gave me countless resources and, more importantly, hope.
We decided to enroll Enzo in preschool in the Fall of 2015. He was still having seizures, but the staff and teachers embraced him and were eager to work with him and help us. We learned that Frankincense helped slow the seizures and improve his cognition, so we tried that during the first few months of school. It worked fairly well. That is, until his body built up immunity to the oil, and the seizures started getting worse, his poor forehead took a beating. He had several sets of stitches in the same spot, and we were worried he'd soon have to have a skin graft. It felt like five steps forward and then 20 steps back.
Finally, through the encouragement of family and friends, we decided to get Enzo a seizure helmet. I was worried about him looking 'different.' It sounds so superficial now, but I just wanted things to be easy and 'normal' for him. The helmet turned out to be our lifesaver. It protected his head, and it started to heal. As his head began healing, the seizures slowed down, and slowed down, and slowed down... until they stopped. Out of the blue, with no medication change, they stopped. This week will be SIX WEEKS of seizure freedom for Enzo. There were times in the last year and a half where Enzo would have 20 in one day, where making it one day without a seizure was a big deal. And here we are - six weeks - and zero seizures.
My wish is that anyone reading our story will see it as a message of hope. It's okay to push and pray for outcomes that are unreasonable, that your doctors may even say are impossible. Miracles do still happen! I'm not naive enough to think that our battle is over, but I am grateful for the way things are right now and feel confident that Enzo has every chance at a bright and positive future.
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Twitter: Twitter.com/sheenastewart27
Oh my goodness! I feel for you reading thise websites. They don't feel you with any kind of hope at all! I completely understand the worse than terrible feeling when the medical profession can't work out what's wrong and just get you to play lottery with medications. We had a similar experience with our son. Big hugs for your future journey.
ReplyDeleteThank you so much for sharing your story. Your beautiful family is so brave and strong.
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