January 2010

January started off some new kind of normal. The Keppra the doctors had initially started Sterling on for his seizures was switched to Trileptal within a week of starting meds due to some erratic behavioral side effects. By the first week of January Sterling was having frequent drop seizures. He looked like a cartoon character when they stick their finger in the electrical socket. His arms would fly out and his head would lead his body in falling forward...right on his face. Every morning after waking he'd have 15-30 of these little seizures. I tried to keep him seated on the couch until mid morning when the seizures would stop, but he took several good hits to the head and face area during these seizures. The seizures would again return after nap time. I kept waiting for the medicine to "kick in". Surely the seizures would come under control once the medicine took hold in his body? Right? Aside from these seizures, Sterling was otherwise unaffected. He was still playful and sociable the rest of the day. Of course, because the seizures dominated the first few hours of his day, he wasn't able to return to dayschool, but we still managed to find fun ways to fill our days.




We seemed to spend lots of time in bounce houses this month. No better place for a boy to have a drop seizure than on a cushion of air!





Mid January something happened. First Ella developed a little cold with a cough, then she passed it to Sterling. On the second day of Sterling's cold, he woke up from his nap, and he couldn't seem to "snap out of" the seizures that now followed any sleeping period. It was like he was lost in a fog. He wasn't talking and was having more than the usual number of seizures. This continued into the next day, when I was advised by his nuero to take him to the ER. This, I would learn, was his first experience with status epilepticus. Essentially, his brain had slipped into a seizing pattern it was unable to break. In the ER they administered Ativan through an IV, and immediately he "came to". He brightened up and began talking and interacting. The Ativan caused him to vomit once, but aside from that, he was alert and with us again. They also gave him a breathing treatment in the ER to treat the wheezing from his cough. We went home from the ER late that evening. The next morning he woke up again and we were back to non stop seizing. Within minutes of being awake, I could tell something wasn't right. It was more than just the seizures, it was this slipping into a fog where he couldn't talk. It was like he was a vegetable. Off to the ER we went again. By the time we arrived in the ER he was not conscious. You know your child is gravely ill when you walk into the ER with a near lifeless body and they immediately whisk you to the back without ever having you sign in. All sorts of codes were being called while they stripped him and hooked him up to countless monitors. Status epilepticus, status asthmaticus. His oxygen levels were quickly dropping, unable to maintain anything above 80%, sometimes dropping as low as 72%. As people poked and prodded him, he remained lifeless. The seizures were not like I had ever experienced. He just wasn't there. It was terrifying. Luckily my incredible little brother rushed up to the ER to meet me. I was also trying to convey all of this via sketchy phone service to Michael in Kuwait. The whole ordeal was truly a nightmare. Eventually they were able to pull Sterling back to the surface...sort of. He still wasn't his normal self. That ER visit resulted in spending 5 days in Children's. He was diagnosed with RSV. His neuro was also able to run another EEG while we were in the hospital, catching lots of seizures and making it easy to diagnosed his seizures as generalized, meaning the seizures occur across the entire brain, not just one part or a specific area of the brain. We were switched from Trileptal to Topomax, hoping to more specifically target the generalized seizures. We went home from the hospital better, but no where close to perfect. I've never left the hospital with a sick child. It felt essentially wrong to take him home still having so many seizures. We had crossed over from morning seizures to all day seizures. They also prescribed a cranial helmet to protect his head from the painful results of the drop seizures.





I think the best way to describe the shift that occurred during the month of January is to look at the first picture of Sterling from the month to the last picture. There's something about the eyes. It's like Sterling wasn't totally there anymore. We'd make countless trips to the ER to break more episodes of status. He fell on the fireplace during a drop and nearly lost his front left tooth, it's now a shade of brown.

And still, the worst was yet to come...