The best treatment begins with an accurate diagnosis! Armed with the SCN1B diagnosis, a brilliant doctor, and a new care plan, Henry’s seizures decreased from hundreds a day to less than 50 a day. Then, they decreased to around 30 a day. This was a miraculous improvement, and we did have thankful hearts. However, 30 seizures a day is not something we considered winning. One atonic seizure can cause significant injuries. Atonic seizures are also called drop attacks. They’ve been given this name because a person loses consciousness and drops to the ground (face first) as if they’ve fainted. These are the seizures that caused bumps, bruises, chipped teeth and bloody noses/lips/tongues. Typically, Henry would regain consciousness immediately after hitting the ground.
We heard a lot of, “All kids fall.” This is correct, but not helpful. Henry was not falling, he was seizing. Children who fall have the luxury of consciousness. This gives them the ability to brace themselves with hands, elbows, or arms. They’re able to turn their heads to avoid smashing their faces. (Thank you for indulging me with that moment of axe grinding.) We hovered around that 30 seizure/day mark for quite a while.
We did everything we could to safety proof the house. Every piece of furniture had a rubber bumper around the edges. We gated off the kitchen so that Henry wouldn’t drop on tile. We ripped out our living room floor and replaced it with the thickest padding and carpeting we could purchase. At one point we were trying to figure out how to hang padding on the walls because Henry would crash into the walls. We made helicopter parents look neglectful.
Fortunately, a decrease to 30 seizures a day allowed us to notice patterns and triggers. We noticed his seizures were the worst between 3:00pm-bedtime. As it turned out, Henry’s core temperature was triggering the seizures. Everyone’s internal body temperature shifts throughout the day. As the day progresses, our temperatures rise. We knew fevers could trigger seizures, so I took his temp 3 times a day out of an abundance of caution. Eventually we realized that even when Henry didn’t have a fever, the natural increase in his temperature was enough to trigger seizures. Saying heat is a trigger is like Monty Python’s Black Knight losing his arm and calling it a flesh wound. There’s no way to adequately emphasize how much temperature affects Henry. We did everything in our power to protect him. We only took him outdoors or to appointments in the mornings. We bought a little blue ice vest that he wore between the hours of 3:00pm-bedtime. His bath water was between 93-96 degrees and never one degree higher. We added fans in every car and to his wheelchair. The temperature in our home is 66 degrees. Finally, we began to gain some ground. 15 seizures a day became 10 seizures a day. Again, this was miraculous and worthy of celebration, but head injuries acquired through drop seizures have put people into comas. One seizure a day is one too many. Our doctor shared that concern and we stacked on a new medication. Henry didn’t fail the new med, and he didn’t have a single side effect! His sensitivity to heat became less severe and he began having seizure free days. Science and Medicine were answers to our prayers. Temperature still plays a role in every single decision we make. Nope, we can’t go visit Auntie because the nursing home is 80 degrees. Sorry, it’s too hot so the park is off limits. My bad, I forgot to pre-cool the car so we’re going to be late. Temperature will always have a say in our lives, but it no longer rules our lives. Today we can leave the house after 3:00pm to run errands or take sunset bike rides! We’ve retired the ice vest/diaper combo and Henry looks so handsome in clothes! We even went to two outdoor parties this summer! (Our friends were so kind and accommodated him with indoor cool down breaks and naps.) Henry hasn’t had a grand mal since February. He hasn’t had an atonic seizure in over a year. If Henry gets his anticonvulsants exactly on time, takes a nap every day, is fever free, and does not overheat he will only have nocturnal myoclonic seizures and occasional absence seizures. For the first time since 2020, we’re able to help him manage his epilepsy.
Ten years ago, I was uncomfortable with the Lord’s prayer. Praying, “Your will be done” was intimidating to me. When we pray for the Father’s will to be done, it’s entirely likely that we’re also praying for our will and our ways to be undone. That’s a hard prayer. Now, I find it to be one of the most faithful, reassuring prayers that can be lifted. When your child has an incurable and rare genetic syndrome, surrendering to the will of the Lord is freeing. This prayer invites Him to take over when life is spiraling out of control, and the Holy Spirit will move. Sometimes He will move in dramatic manifestations, and sometimes He will move with a still small voice. Several bibles translate “His still small voice” as a “gentle whisper.” Instead of walking in obedience when the cup isn’t passed, people search for loud, visible miracles. But, if we are only willing to see God in supernatural grand gestures, we miss the everyday gentle whispers that give us peace in the middle of hurricanes. We miss His very presence. We miss a relationship with Him. Perhaps the greatest miracle is a Heavenly Father who desires a relationship with me, despite me. Human nature sometimes takes one peek at the disability community and silently thanks God they aren’t a member of this minority group. Not my Heavenly Father. He WANTS to step into our traumatic, messy, difficult days and walk with/carry us. Yes, He is the Lord who has given Henry 6 months without a grand mal and put an end to his drop attacks. That’s a big dramatic miracle! He is also the gentle whisper of 30 seizures a day, instead of hundreds. The gentle whisper of 6 straight hours of sleep. The gentle whisper of a new babble or sound escaping Henry’s lips. His will and His way will look His way. If we listen to the culmination of His persistent whispers, we may discover He’s speaking to us louder than we ever realized.