Avner’s pediatrician finally saw a small part of what we had been experiencing and suggested that we take him to the local hospital emergency department. Like frogs in a slowly warming pan of water, daily exposure to Avner’s changes of mood and affect had failed to make the impression that urgent action was required. Instead, I continued searching for the perfect solution instead of the immediately available one.
Kleine Levin Syndrome (KLS) is very rare, affecting only one or two people per million by most estimates. According to the KLS Foundation, it takes patients an average of four years to find the proper diagnosis. No test exists to diagnose KLS either. The process to diagnose KLS involves testing for and eliminating other causes for the symptoms. The one thing that all medical professionals would need for the diagnosis and we could not get locally at the time, was a pediatric sleep study. For whatever reasons local sleep testing facilities did not accept patients who were not adults. I decided that if I could find a provider who could schedule a pediatric sleep study, that we could pursue the diagnosis there.
The morning of February 23, 2017 I was scheduled for a CT guided bone biopsy on my left foot. My orthopedist had scheduled me for a bone biopsy on my left great toe. The wound that dogged me through the 2015 triathlon season had appeared again near the end of 2016. Dr Bryant, my orthopedic foot specialist, expressed concern that my best option could be amputation of the toe. Naturally, I had concerns about how it would affect my running gait. My running times were abysmal enough as it was, but I was still pursuing a USAT ranking for my personal bucket list. A friend who is an out of state podiatrist also suggested that losing the great toe could be the first step in destabilizing the foot and losing other toes. Also, I’m vain enough that I really wanted to keep all ten toes if possible, so I didn’t attract unwanted attention when I swim laps.
Since I have nondiabetic neuropathy, I have no sensation of pain in my toes and parts of both feet. If there was a bone infection, it didn’t impact my daily activity, except that Dr Bryant didn’t want me training in the pool with an open wound, which seemed reasonable to me. I focused my workouts on cycling and running. If there was a problem with my toe, Dr Bryant felt that the damage was already done.
I was asked if I would mind having medical students observe the biopsy. I allowed the students to observe the procedure. So, there I was, on my belly with my foot in the CT ring. My iPad was in front of me and I was looking over my servers with the benefit of the hospital wi-fi. The students asked questions about any sensation I had and discomfort, and they asked how I was able to admin my servers remotely. The mood was light and I felt that the whole situation seemed absurdly comical as I held court over a number of topics while a physician was fishing in my toe for a scrap of bone to examine for infection.
By this time, Barbara had landed a contract with some of her former coworkers. She worked outside of the house on a regular basis. By this point, we decided that letting Avner sleep in, was probably in everyone’s best interest. It didn’t do us any good to force him out of bed only to have to retrieve him a few short hours later, or worse, have him refuse to get out of the car. So, after the biopsy, I had a quiet moment to make phone calls based on my research.
The Stanford sleep research program stood out as the one place that repeatedly came up in my searches for sleep disorders and KLS. They also seemed to be looking for KLS patients. I called the number listed on the website and a woman’s voice answered the call.
I explained that my son was exhibiting strange behavior that we thought could be KLS. I recounted the sleep and behavior issues, including the problems seeking out online adult content when he wasn’t non-verbal and taking things apart. Having someone who might be able to help, overwhelmed me because I remember running down a list of all the strange, objectionable and otherwise unexplained behavior. For all I knew, this person had nothing to offer, but I felt compelled to give all of Avner’s story up to that point that I knew.
“You need to get a sleep study for your son” she responded. I agreed but persisted. “Am I on the right track? Am I wasting my time with this?” I was seeking some kind of validation, maybe even invalidation because everything I had read up to that point suggested that there was no treatment.
“You need to get a sleep study for your son” she told me again. That was it. The only medical institution that I could locate on the internet for Kleine Levin Syndrome was an impenetrable wall to us without a sleep study. The problem seemed to have a simple solution. We would find someone who could do a pediatric sleep study.
I had two options as far as I knew. Nemours Children’s Hospital in Jacksonville, three hours away, or the University of Florida Shands Hospital in Gainesville, just a little closer to home. I knew a few people who went to Shands but when I needed a tertiary medical provider for myself, I had landed at Mayo Clinic in Jacksonville. For no reason in particular, I just didn’t want to start this process in Gainesville.
As a website developer and server admin, I spent my life online. I could crack this. I could find the diagnosis, the doctors and maybe treatment if I just applied myself. I really believed that if it was out there, I could find it. I was naive and unreasonably optimistic.
I called Nemours. The switchboard operator routed me to the sleep department and I tried to get a sleep study for Avner. It doesn’t work that way. I had to have a scheduled consult first, then they would decide if he needed a sleep study and when they could schedule it. It would be more than a month but there was good news, they had another hospital in Orlando. I could call them, after we made an appointment. At least I had the presence of mind that I could cancel a booked appointment if I found something sooner. I took what they offered me.
I called Nemours in Orlando. I was getting an explanation about turnover in the department and who might be able to see Avner and something about the difficulty of scheduling for a sleep disorder, when Avner came downstairs from his bedroom to my office.
“I want to go to Starbucks,” he announced.
“I’ll drive you there in a minute. I’m on the phone with a hospital.” I answered.
“I want to go now.” He said it like an impatient growl. The monster visited me, not my polite kid. I was on notice.
“It will just be a minute.” Avner left my office. A short moment later, while I was still trying to figure out if there was a date available in Orlando, I heard my front door slam shut. That was neither expected nor welcome.
The monster had taken Avner for walks before. Those were unpleasant experiences for Barbara and me without exception. By the time I got outside, he was out of sight. At least I knew where he was headed. I caught up with him about halfway to the Starbucks.
Avner had a Kindle Fire with Wi-Fi and a browser. I couldn’t recall if it was last locked or unlocked for his use. The home network was secured, but I was sure that the Starbucks and the adjacent Sprint store networks wouldn’t be safe from a 13 year old with bad intentions.
I pulled into a parking lot just ahead of him and waited. He was carrying a red drawstring bag. Just as I had thought, he had the Kindle with him. “Hey, I said that I’d take you. You could have waited. I’ll take you through the drive thru,” I offered.
“Ok, give me the Kindle.” I said firmly. If he really wanted a sweet treat, I was fine with that but not letting him surf for content online that wasn’t appropriate for a 13 year old.
I was still much bigger than Avner. I let my size be the barrier as I placed myself between him and his path to his destination. I saw him getting agitated. I didn’t back down. I explained with no ambiguity that his options were to get in my car and I could take him to the drive thru or I could take him home. I offered no third option.
After I brought Avner home, he remained agitated. He paced and screamed. He couldn’t explain himself and he refused every attempt to mollify him. Against my better judgement, I offered to let him watch tv after he had been on restrictions for his behavior. He refused.
I got scared for him. I ask him if I should take him for observation at the behavioral health center. He growls back, “I don’t know.” I offer to drive him. He refuses to leave his room. I asked him if I should call emergency for assistance. Still agitated, he yelled back that he doesn’t know.
He’s a scout. He has knives in his room. Some, he earned from competitions. Others, he purchased or received as gifts. At the time, there were a few incidents of school shootings involving autistic boys.
Avner had never been violent. Actually, he’s one of the kindest kids you’d ever meet, but he had become aggressive and menacing in the past few months. It was The Monster, in retrospect but his agitated state, the knives and the stories in the news worried me that calling for help could end horrifically. I kept trying to calm him and gave him space to calm himself.
It didn’t work. Avner acted like an animal trapped in a cage. He was throwing things all over his room. He started to tear open soft toys, like an Angry Birds pillow he adored. I couldn’t calm him and we couldn’t coax him out.
By the time Barbara got home, I was getting desperate. Neither of us knew what to do. We were terrified of doing the wrong thing and had no clue what the right thing should have been.
Avner’s best friend, Kimi. She experienced local mental health as a patient. I thought that maybe she could help calm him down and help us get Avner out the door for treatment.
After running out of ideas, we called Kimi’s mother. We explained the situation and asked if they could come to our house and help calm Avner. They agreed. In retrospect, they made a brave gesture of great kindness.
When they arrived, Barbara and I briefed them as fully as we could about the events of the day. Kimi, went upstairs to talk to Avner. Jeanette, Barbara and I huddled around the kitchen table. We talked about hospitals, parenting and this my suspicion of KLS.
Kimi is about a year and a half older than Avner. She matches Avner’s kindness and quirkiness and has a measure of steel in her spine. She’s always been the friend that Avner needed, joking and gaming and just being weird but if Avner ever overstepped, she can always tell him off and set him straight.
After a long quiet time, she reported back to the adults downstairs. Nothing she offered sounded good. He made his room a shambles. Avner still seethed in anger and agitation.
Avner’s words fell cruelly on Kimi. He said he wasn’t her friend. He never had been. He hated everything and everyone.
It was getting late, after 9:00 pm. I offered a suggestion. We were all tired. It had been a very rough day. If I my suspicions were right, Avner would collapse asleep soon on his own. He would become unwakeable by morning. Barbara and I could move him in his sleep.
We made a huge gamble but everyone agreed that it could be worth trying. We thanked Jeanette and Kimi for their help.
I set my alarm clock for early the next morning. We held no reasonable expectation that our plan would succeed but we went to sleep prepared for another exhausting day.