Thursday, December 20, 2007

Sleep Disorder?

Tyler has never been a calm sleeper. Even as a baby, he was squirrelly in his crib or in our bed. Sam & I used to joke about having the Human Corkscrew as our son. We thought nothing of it.

Possibly unrelated but puzzle pieces nonetheless, Tyler had a very difficult birth. He went into distress twice and had to have his stomach pumped immediately on delivery. Sam hemorrhaged and started to bleed out, but thanks to Mark Beard's speedy and excellent needlework, she survived to go through a much less traumatic delivery of Kayleigh. Then when he was about two, Tyler fell off our open front porch into the flowerbed where Sam was gardening (a fall less than 3 feet, but he seized up and stopped breathing temporarily, went into shock, and had to be taken to the ER for examination). So, two physical traumas very early on, despite an otherwise loving and nurturing home.

Later, Tyler started acting out physically, exhibiting symptoms associated with ADD and ADHD (and was diagnosed such). Sam & I were the last people who wanted to medicate our child, but as his lack of impulse control had become a very real threat to his little sister's safety, and after trying diet and herbal alternatives, we finally felt like we had no other options.

We varied meds until we found one (and a dose) that seemed to give him some mileage without too many nasty side effects. Even so, our hearts broke every day, having to choose the lesser of two evils: a medicated but stable child, or a med-free and totally out of control child - and we are talking OUT of control, like even out of his own control. Like attacking people out of nowhere with various implements, digging holes in his bedroom wall, tearing up carpet, rolling around on the floor making weird and incessant chirping noises, hyperfocusing on an issue to a point beyond futility, and total disconnect between action and consequence. We chose a cocktail of counseling and 10mg Adderall XR (a pretty low dose, time-released). He was stable, a seemingly normal kid, not a drugged out zombie (which is always the parents' fear).

When he turned 13, the mutual decision between myself and our pediatrician was to give Tyler a vacation from the meds over the summer break, to allow him to catch up in his growth and weight (which he has, in spades), and to see how he functioned off them. Starting in May of this year, he's been off the Adderall, and has been pretty functional, so we just kept going without, knowing that things like rules, boundaries and schedules helped him maintain a sense of equilibrium.

Now, I'm not a clinical psychologist; just a parent whose ultimate concern is the health and well-being of his children. So all of what follows is strictly solo research.

As soon as the school year began, Tyler had a seemingly impossible time adjusting to his new and earlier schedule. Even after several promising weeks that included talking about new friendships and even possibly going steady with a girl, a slide into depression and lethargy became apparent. He wasn't going to sleep until 2AM or later, and could not be roused until late morning (if at all). Even well after the power cords to all electronics were removed before bedtime, thereby removing the temptation to play games into the wee hours, the problem continued. Negative behaviors began: the usual surly teenager attitude, a reversion to former violent habits with his sister, dissociative behavior, and a complete disregard for the fact that he was failing every class and might have to repeat the 8th grade. He went so far as to run away from home at 1AM one night, and had to be brought home by the SPD (he was found wandering near Roxhill Park, which is not a place you generally want to wander around at 1AM). There was a glimmer of empathy when he saw how terrified his sister and I were, so that gave me hope.

We worked with the school wellness counselor and the truant officer to get him re-motivated, changed the bedtime ritual to better facilitate relaxation, and got all three of us into family counseling.

What has come out of the counseling is that the loss of Sam, my dad and our house affected us in very different ways. Kayleigh and I process externally. We talk, we examine, we cry, and we get it out. Tyler internalizes everything. Always has. And while there is no right or wrong way to grieve, I've seen him actually shed tears maybe two or three times in the last three years, and one of those was the day his mom died. So here's this amazing, intelligent kid - the world should be his oyster, but he's really hurting, and despite having an open, loving, nurturing environment in which to grieve, he either won't or he can't process, and it just builds up until it explodes in any number of inappropriate and/or damaging ways. Even the way we process emotionally has created distance between Tyler and his other two family members.

So part of what we're doing in counseling is trying to get a handle on Tyler's process - what makes him tick - with the goal of a psychiatric re-evaluation. There's some depressive or bipolar behaviors going on, for sure. Tyler brooded through much of last night's session, and then randomly, in a very chipper tone, suggested we go to dinner at Elliott Bay, where he ate a great dinner and laughed and joked all evening.

Bedtime went as per usual. But at 1AM, Tyler came into my room, complaining that he couldn't sleep. This has always been his major justification for not wanting to get out of bed in the morning, that he "hardly got any sleep". So instead of tucking him back into his own bed, I just had him sleep in my bed, and I lay awake all last night and monitored him.

From the moment his head hit the pillow, he was asleep. But it was anything but restful. He would tense up for several seconds, twitch a bit, then relax for a few minutes. Then he'd mumble something, roll over, and relax again. It was like when he would "corkscrew" as a baby, only much more violent and spasmodic. This restless process continued from 1AM to 4AM, when he finally drifted into deep REM sleep.


I went to the computer, looked up sleep disorders and voila! Delayed sleep-phase syndrome. Often manifests in early childhood or adolescence, usually associated with physical or emotional trauma, associated with symptoms of depression and other emotional disorders, often misdiagnosed as ADD or ADHD, only recently acknowledged as a unique disorder. People who have it say it's like functioning in a 9 to 5 world with 6 hours of jet-lag.

He's sleeping plenty, just not getting the deep sleep that should be occurring much earlier in the sleep cycle. My gut tells me he's not sleeping because he's depressed - he's showing symptoms of depression because he's not getting deep sleep when he should. And I'm sure it's exacerbated by the Pacific Northwest winter solar cycle (sun sets at 4PM). It's a disruption of the body's natural circadian rhythm, and can be helped with phototherapy (full spectrum lights) and other behavior modification.

So that's where we're going to look next. I really feel like I made a breakthrough on this, and am hopeful of positive results. Not to say that it's all wine and roses from here on out, but I feel like I have a better handle on what's going on in my son's head.


thund3rbox said...

Wow, Todd, you are such a great writer. Your post sucked me right in. Maybe it's because I have kids, too and get concerned for their sleep habits (and mine, too!) and it breaks my heart to see your son go through all this after so much has gone on in your lives.

I do hope this is a breakthrough and will lead to some relief for you guys.

Sleeps issues are bigger than I think most people realize in our society. We are pressured to work so much, so much stress that causes lack of sleep and this has bad side effects.

Thinking about ya and will follow the progress.

-pat g.

TigereyeSal said...

I love how your compassion for Tyler sings out in this post. I hope I do as good a job when faced with equally intense parenting situations.



tbone said...

Thanks Sal. I didn't hear you come in. ;) Hope it's okay, but I added your blog to my links. Be well.

mallemaroking said...

Wow, I hope this leads to something good for Tyler. I know if I had to function on small amounts of sleep I'd be acting out in all sorts of bad ways as well. Good luck with this!

tbone said...

Thanks Jess, and thanks Pat (forgot to acknowledge you the first time - d'oh!).

T is getting a full physical at school today, complete with blood work, and we're getting referred to the Swedish Hospital sleep center for a study on his sleep patterns. With any luck, we can get him evaluated before the end of winter break!


Lucy Leadskin said...

Wow! Fascinating post - hope all goes well with Tyler. :D