Three Drugs, Maximum Dose

I play in a softball league for local women. We have four teams, comprising mostly moms in their 30s and 40s. It’s fun.

At one practice, a few of us were discussing Martin’s move from a private self-contained, special-education setting into our local school. (I’m so anxious. I raise the topic with anyone who knows anything.) I said that my son—no one on the team knows Martin—has ADHD and language delays.

Someone asked whether we’d considered the district’s own self-contained, special-education classroom for Martin. I said that we’d observed that classroom and liked the teacher but (1) we didn’t see any advantage to moving from one self-contained setting to another, and (2) our district representative wasn’t sure Martin would fit well with the students in the self-contained classroom. I worded the second point carefully, so as not to suggest that the class was behind schedule, or that Martin was “better” than its students, in case any mom present had a child in that classroom.

And indeed, one mom did have a child in the district’s self-contained classroom. She started talking about her son. She said that they’d considered trying to switch him to general education with an aide (that’s what we’re doing for Martin) but felt that the move from a 12-student-or-fewer classroom to a 20-student-or-more classroom would be too much for him to handle.

We have the same concern for Martin, I told her. I’m wondering how this year is going to go.

“I’m sure it will be fine,” she replied. “It wouldn’t work for my son. My son’s ADD is so bad.”

I’ve seen this woman’s son. He comes to watch our practices and games. To me, he looks absolutely typical.

I said, “Academically, attention is our main concern, too. Martin has so much trouble paying attention.”

“Not like my son,” she said. “Seriously, once my son even had an autism diagnosis. Now he’s on absolutely the highest dose of every medication he takes.” She named three pharmaceuticals, none of which I recognized. “For every one, he’s got the highest dose they allow. Based on his body weight, they won’t even let him take more. That’s how much he needs, just to pay attention.”

As she spoke, I grew uncomfortable. First, the way she said “autism diagnosis” conveyed, “You can’t even believe how bad his condition is.” I abhor “autism” being used as a synonym for “territory you don’t want to be anywhere near.” Last year I helped a special-education acquaintance request a neurodevelopmental psychiatric evaluation for her son. When I asked later how it went, she (despite knowing Martin’s then-diagnosis) replied that she hadn’t completed the exam because, after only the first session, the doctor said her son didn’t have autism. “That’s really what I needed to know,” that mother told me. “I mean, thank God, at least he doesn’t have autism.”

Second, as I’ve written before, I can’t say that we will never allow Martin to use a pharmaceutical to address his poor attention span. For example, if we get to middle school and a pharmaceutical can make the difference between fully mainstream and still being pulled from the classroom, maybe we will try the pharmaceutical. (Maybe.) That being said, the thought of an eight-year-old child, like softball mom’s son, taking a variety of drugs to alter his brain chemistry turns my stomach—especially because the family doesn’t seem to be making any attempt to address overall health. Every time I see the boy, he has goldfish crackers or an ice-cream cone or an artificially flavored popsicle or even a soda pop in his hands.

Third, softball mom’s comments were tinged with—I don’t know—pride, or bragging. She sounded like we were trying to outdo each other: My son has so little attention span that he needs three drugs, maximum dose. Can you top that? I suspect that, if we ever compared our children, I could top even three drugs, maximum dose. But who on earth would want to play such a game?

Sitting quietly and typing my blog, I can expound the three reasons her comments disquieted me, and come up with the kind of helpful response I could have given, something like, “I’d really like to hear more about your experience with the self-contained classroom. Can I give you my number so maybe we could grab coffee?” or maybe even, “We’re always looking for new friends. Do you think your son would like to do a play date sometime?”

On the softball field, however, I panicked, confounded as usual, nothing productive to offer. I said only, “Wow, it sounds like you’ve really got your hands full!” and hoped she would change the subject.

For ahen these situations arise, I’ve got to find some middle path that is neither my opening monologue to the biomed revolution nor a throw-away comment to move the conversation along. Regardung my veganism, I’m able to thread the needle; I respond honestly but non-graphically to any questions (no one wants to hear about factory farming at the dinner table) without pushing an agenda. What is the biomed equivalent? How do I gently suggest that a non-pharmaceutical option is available, without affronting or appearing judgmental?

Suggestions welcome.

New Sleep, No Crutch

“You sure you don’t want to try melatonin again?” asked Martin’s doctor, the one supervising the medical side of his recovery.

“No!” I responded. “No, definitely no. That’s one thing we’ve achieved recently. I don’t want to go backwards.”

The days before Martin’s autism diagnosis were dark times: Martin’s neuro-challenges left him so restless, so lost in spatiality, that he could not fall asleep unless physically restrained. Some nights it sufficed to sit next to the bed and hold his ankles to the mattress, so he couldn’t kick. Some nights we had to kneel over him to straddle his body, too. The worst nights, we had to find a way to still his legs, his torso, and his arms—only to watch his head thrash from side to side. No matter what we did, he needed more than an hour to fall asleep. Sometimes two hours. Or three. Even then, we couldn’t let go, or he’d wake.

Martin’s pediatrician, at a loss as sleepless nights became sleepless months, referred us to the chairperson of the department of pediatric sleep disorders at a prestigious university hospital. That “expert” told us to make “picture charts” to help Martin understand what bedtime meant. She also diagnosed “restless leg syndrome” and told us to put Martin on iron supplements, which stained his teeth purple. It was a garish era for photographs of Martin.

Meanwhile, Adrian and I slept in three-hour shifts, one of us trying to rest while the other pinned Martin.

We received Martin’s autism diagnosis in autumn 2010. Once we learned what was really causing his inability to sleep, we purchased a weighted blanket. That did not help, and later was donated to a special-education preschool classmate. Martin’s sleep situation did not change until we started biomed in February 2011. The difference, as far as I can tell, came through (1) restricting Martin’s diet, and (2) melatonin. Melatonin is a hormone that the body produces naturally for sleep regulation, and it can also be made synthetically in a laboratory. The NIH  states, “Taking melatonin by mouth is helpful for disturbed sleep-wake cycles in children and adolescents with intellectual disabilities, autism, and other central nervous system disorders.

On 31 August 2011, six months into the biomed journey, I posted this:

Almost as soon as we eliminated carbs (and sugar, and starch, and most everything else delectable) from Martin’s diet and added supplements, he began to sleep. As of late March, just for or five weeks into his recovery, Martin was falling asleep in 45 minutes or less and sleeping eleven-to-twelve hours through the night, five or six days a week. We still dealt with night waking one or two days a week, but the compulsive pitching about the bed ceased. Instead, Martin either lay still and chatted to himself or else laughed and acted drunk from his body detoxing.

As of today we more or less count on Martin sleeping through the night. If you’ve been reading this blog regularly, you know that we still have bad nights, and that we sometimes have two or three bad nights in succession, almost always related to Martin lumbering through a detox phase. But by and large, he falls asleep, and he stays asleep.

Until this past October, the sleeping situation, with some variations, remained that way: Martin fell asleep easily, and could be expected to sleep through the night, and when he happened to wake up wouldn’t go down again for three-to-five hours.

Martin takes some prescriptions (among them right now are levocarnatine and compounded piracetem), along with a lot of homeopathic drops and OTC supplements. Whenever possible, I try to eliminate from his daily regimen. So a few months ago, when Martin was on an upswing, I decided to try phasing out melatonin. We’ve made so much progress, I reasoned. Why not investigate whether we’ve resolved some of the issues that made sleep so difficult?

At the time (October), Martin was taking seven drops melatonin before bed. I eliminated one drop every one-to-two weeks. I’d reduce the dose by one drop, endure a few days of Martin taking a hours to fall asleep, wait until he adjusted and fell asleep within 30 minutes, and then reduce by one more drop. By Christmas, I had Martin off melatonin.

Things weren’t perfect. He was taking longer to fall asleep than he had with the melatonin—45 or 60 minutes, instead of 30 or less. But I discovered an unexpected benefit: When Martin woke during the night, he did not stay awake. He fidgeted and called out for me and sought reassurance, and then promptly fell back to sleep. I realized that Martin had been dependent on melatonin to get to sleep. Its absence, at 2:00 or 3:00 am, had prevented him from returning to sleep.

With Martin off melatonin, and capable of getting back to sleep, I’ve been able to attempt something new: nighttime potty training. Until now Adrian and I always left nighttime potty training on a back burner, reasoning that getting up to use the toilet was not worth the hours of wakefulness that would ensue. With that threat gone, we’ve been potty training since the week after Christmas.

As my posts these past few weeks have described, Martin’s been having a tough time. Among other issues, he’s been experiencing evening hyperactivity, and therefore taking hours to fall asleep. That’s why his doctor asked if we’d like to add melatonin again.

The doctor seemed surprised when, in response, I nearly barked my “No!”

Here’s the thing: Melatonin is a crutch. It got us past the long nights while we worked on remedying the underlying causes of Martin’s sleeplessness. Martin no longer needs that crutch. I would rather find and eliminate the cause of the nighttime hyperactivity than use melatonin to mask the hyperactivity’s effects.

The current melatonin situation reflects my overall approach to Martin’s autism. Of course I’m familiar with methylphenidate, amphetamine salts, guanfacine, and so forth—drugs that might improve Martin’s still-abysmal attention span. Maybe one day we’ll turn to such resources (in the end, I remain a pragmatist). But for now, while we have the time and opportunity, I choose to work toward eliminating the cause of his short attention span, instead of using drugs to mask the symptoms.