I haven’t been tweeting or updating my Facebook much lately, and the few updates I’ve posted have been a bit cryptic sounding. As a result, many people have been emailing and texting me to ask if I’m okay and to inquire about what’s going on. While I truly and honestly appreciate the support, explaining my recent experience again and again to each new individual was becoming difficult, so I thought writing about this past week here in my blog might be a good way of filling everyone in.
On December 22nd, Dylan, my six-year-old son, woke up in the middle of the night screaming and telling his mother, Leslie, that the room was full of bugs and that they were attacking him. His mom thought he was having a bad nightmare, and tried comforting him, but it became clear it wasn’t working. Despite being awake, he was still seeing the bugs and if anything, they seemed to be getting worse. After a couple of hours of trying to calm Dylan down and not having much of an effect, she decided to take Dylan to the emergency room.
I received a call from Leslie the following morning letting me know what had happened, and I immediately drove out to the Inland Empire (where Dylan lives with his mother) to see him. When I got to the ER, I could barely recognize my son. He was heavily sedated, to the point where his speech was pretty incoherent, and he was clearly still hallucinating. He was frightened and the only thing I wanted was to make it stop and to get him out of there. I couldn’t believe what was happening and that it was happening a couple of days before Christmas.
While at the ER, the nurses and doctors drew Dylan’s blood to test for toxins. They ordered a cat scan to check for a brain tumor. They even performed a lumbar puncture to see if he had some sort of infection. And they admitted him to the hospital.
Once in the hospital, it became a waiting game, with Dylan going through phases where he seemed pretty normal, only to have the hallucinations come back with a vengeance. All of us – me, Leslie, Leslie’s husband, my mother and my stepfather – rotated shifts at the hospital with Dylan. Early on, something showed up on the cat scan that was of concern to Dylan’s doctor (who is the senior pediatric neurologist at Loma Linda), so he ordered an MRI, which we had to sedate Dylan for. All of us felt very uneasy for an evening, but the next day we were told the MRI was clean and Dylan didn’t have a tumor. He also didn’t seem to have a common infection. The doctor began testing Dylan for less common infections and conditions that could cause nonstop hallucinations. He also put Dylan on an antipsychotic to get the hallucinations under control and hopefully stop them outright.
It became clear after a couple of days that the antipsychotic was having an effect. The hallucinations seemed to be becoming more manageable. However, the tradeoff was that Dylan slipped into a sort of glassy-eyed gaze, wandering around like some sort of zombie. He was responsive and active, but stone-faced. His hands shook slightly. I hated seeing my son like that. I hate even THINKING of him like that. But the alternative was worse.
Dylan went on the antipsychotic on Christmas Day. Not the gift any of us were hoping for.
Meanwhile, the neurologist ordered several more tests, including a second lumbar puncture to test for an extremely rare autoimmune disorder that can cause hallucinations, along with a few other infections. A child psychiatrist came in to interview and observe Dylan to see if this might be something purely psychological. The consensus was that it wasn’t. Dylan had shown almost no symptoms prior to its onset, which came on suddenly and seemingly out of the blue. The doctor still believed it was due to something medical.
They held on to Dylan for a day or two more before finally discharging him, deciding that there was nothing further they could do until they received the final test results and that he’d recover better on the antipsychotic at home. I took him home with me to my mother’s house on December 30th. He had been in the hospital for a week and was more frightened than I’d ever seen him.
That first night was tough. Dylan was just as scared at home as he had been at the hospital. He was still hallucinating, and woke up in the middle of the night screaming. It took all three of us, me and my two parents, to calm him down and get him back to sleep. The next day wasn’t much better. At times we could distract and entertain Dylan, but every ten minutes or so he’d see something that would frighten him and he’d need us to hold him.
However, yesterday, New Year’s Day, Dylan seemed to turn a small corner. He slept through the night without waking, and woke up in the mood to play. He had a good morning, even dancing to Ladytron and Lady Gaga at one point. (Dylan’s always loved dancing. We were planning on enrolling him in a hip hop class this month.) The hallucinations were still there, but they didn’t seem to be scaring him quite as badly. As the day got later and Dylan became more tired, he became a bit more fearful and needy, asking us to hold him pretty regularly. But most of the day was good. And this morning has been even better. He’s still seeing bugs (that seems to be his most consistent hallucination), but he’s ignoring them or telling them to buzz off, which is what we’ve been telling him to do. As a result, they haven’t seemed to upset him quite as much. Also, for the first time, it seems like the daze caused by the antipsychotic seems to be improving slightly. It’s not gone entirely. Dylan still seems medicated and glassy-eyed at times. His hands still shake off and on. But there are moments when he almost seems like his old self. I’m not fooling myself into thinking we’re out of the woods. I know not every step from now on will be a step forward, but this does seem like progress.
And that’s where we’re at. I still have no idea what the hell is going on. We need to follow up with the neurologist at the hospital in a few weeks and we need to keep giving Dylan the medication. The neuro has instructed us to keep Dylan out of school for a month, so when his school starts up next week, we’re going to have to homeschool him. We’re waiting for the results of the last round of tests (which can take weeks since they’re for extremely rare conditions and need to be sent to the Mayo Clinic). If none of the tests are positive, I’m not sure what that means, and that’s frightening to me. Does Dylan have schizophrenia or some other sort of behavioral health disorder? The neurologist and psychiatrist don’t believe so right now, but I don’t believe they can rule it out entirely just yet. The thought of this being a permanent condition is something I’m having a lot of trouble dealing with. What does a lifetime on antipsychotic medication do to someone? Will Dylan be able to finish school? Hold a job? Drive? Have a family of his own? Should I even be asking myself these questions at this point?
It’s the not knowing that’s the most difficult. If I knew what Dylan had, I’d be researching it, reading stories from other parents and people who have dealt with it. But I don’t even know where to look. Also, it’s unfortunate, but I do worry a lot about the financial impact of all of this. Dylan has health insurance, but it’s an individual plan, and god knows what they’re going to do with his monthly premium after all of this. Plus, I’m still technically unemployed. This only increases the pressure to find a job as soon as I can, but that’s precisely what I’ve been trying to do for over a year. The fact that I’m still looking doesn’t inspire much hope.
All that said, I do feel I should emphasize that we’re doing a lot better than we were. Dylan seems to be doing better than he was a few days ago, and he’s much improved from where he was a week ago. We’re in good hands with the doctors at Loma Linda. The amount of support that I’ve been getting from friends, family and even people who I don’t know has been inspiring and has been a HUGE help. You guys really helped get me through the week at the hospital. We have a long, long way to go and ultimately I don’t know where we’re going to end up, but I feel like I can cope with what lies ahead, and that’s largely due to all of the love and support that you sent to us during that first initial, awful, extremely stressful and frightening week.
What I could use, if any of you can provide it, are stories and tips from those of you who may have experienced something similar. This is all new to me, and while I know there are resources online, it’s hard to know where to begin since we don’t know what Dylan has. But have any of you experienced these sort of hallucinations? Do any of you have kids who have gone through this or have diagnosed psychosis? Do you have experience taking antipsychotic medication or giving it to your children? And finally, on a completely different but equally important note, if any of you have any solid job leads for an editor, writer or project manager in LA, please send them my way.
I realize I’m asking about some pretty personal stuff, so if you’d rather not leave your stories or experiences in the comment field, feel free to email me directly. My email address is just my first and last name (timbeedle) at gmail.
Thank you for reading this very long update. I’ll continue to post updates regarding Dylan here in my blog from time to time, but expect my more typical comic-related entries as well. This has been difficult, but life has to go on. And I’m determined to make 2012 a better year for me and my son.
