Cuddly Black-and-White Bears, or Blood Sucking Worms?

PANDAS. I have a gut feeling. It sounds like PANDAS,” said my friend Stacey.

“But he’s never been a PANDAS kid,” I replied. “Plus, it didn’t come on that fast. The doctor thinks it’s parasite-related, thinks he picked up something new in Costa Rica. He’s always been susceptible to parasites.”

“Doctors can get stuck on one idea and want to make you fit that box. All I’m saying is to make sure you also look into PANDAS.”

“I hear you,” I said. “Can you get me the info on which tests to run for PANDAS? I’ll see if I can get them done before our appointment.”

This discussion, which could only have taken place between biomed parents, was about what’s been going on with Martin. Poor Martin is not in a good place. The troubles (the exciting new troubles, atop the quotidian troubles) started in Costa Rica, maybe halfway through July. I began to notice that Martin wanted to go to the bathroom all the time. Sometimes he would go to the bathroom, brush his teeth to leave, then need the bathroom again before we could get out the door. He started spending a long time on sitting on the toilet, too. Near the end of July he developed a tic: He thrusts one index finger simultaneously into each nostril—briefly, with no rooting around or picking, thank heavens—and then immediately puts his fingers into his mouth. The whole action is over within a couple seconds, but it’s noticeable, and recurring, and out of Martin’s control. Next came the eye rubbing. Since our return to the States, Martin has been rubbing his eyes compulsively. He asks, “Why is this happening? Why can’t I stop rubbing my eyes?” As we made our way into September, he started night-waking, and having trouble getting to sleep.

None of the symptoms dissipated as the new ones arose. As of today, Martin is sleeping poorly, rubbing his eyes till they look red and sore, patterning his index fingers into his nose and mouth constantly, and using the restroom multiple times per hour, sometimes staying in there 10 minutes or more.

Wait—did I mention touching his private parts? Now he’s doing that, too. If we gently remind him to watch his hands, he complains that it is hard.

I’ve already received several reports from school. Martin seems distracted (even more than usual, I assume). Martin walked into a wall. (Yes. That was one report.) Martin is signing out of the classroom to go to the bathroom several times an hour.

When the bathroom issues and first tic arose, in Costa Rica, I thought that oxalate sensitivity might be at play. I reduced oxalates in his diet, which was not easy, as he loves potatoes and sweet potatoes, and making a meal for the whole family (I’m vegan) usually means using some nuts, or legumes. A few weeks of reduced oxalates brought no change, unless you count a worsening of the symptoms.

Back in the States, I brought Martin to his pediatrician, to rule out a UTI. His urine showed no trace of problems. The pediatrician thought Martin might be constipated, which can cause frequent urination, so I worked prunes and pears into his daily diet. No change.

Martin is prone to parasites, so I gave him a course of Alinia, which has worked in the past. No change.

I called Martin’s primary doctor for autism issues. She suspected parasites also. Together, we decided to move Martin’s previously scheduled appointment from the end of October to this coming Monday.

Then I went out to dinner with Stacey, and we had the conversation with which I began this post. I agreed to get testing done for PANDAS, but to be honest, I was skeptical. Martin has never been a PANS or PANDAS kid. I can’t recall flares, or his behavior changing those few times when he’s been on antibiotics. Later Stacey texted me a link to basic information on PANDAS and wrote: “Seriously please read this because it does state urinary frequency as a sign of PANS and/or PANDAS. I would really look into this as a potential cause. I could be totally off base but I have just a gut feeling.” I opened the link, and one specific reported symptom of PANDAS struck me: poor handwriting.

Though I hadn’t thought much about it, or connected it to the urination and tics (probably because I’m bone-headed), I’ve noticed that Martin’s handwriting has been abysmal since he returned to school. Not just shaky or unplanned, as his handwriting usually is, but truly abysmal. Almost illegible.

PANDAS? Stacey’s gut feelings tend to be reliable.

Parasites? Martin’s doctor for autism issues knows him pretty well.

His mother’s opinion? Confused.

Martin Out of Paradise

Fact: In Costa Rica, Martin slept beautifully. He requested sleepy-eyed early bedtimes, dozed promptly, rose only after 10 or 11 hours. To my knowledge, he woke during the night just once, when a thunderstorm lingered.

Fact: Since we’ve been home (one week), Martin has slept poorly. He lies awake for an hour or more, tosses or talks during the night, wakes too early. Some nights he’s had as little as eight hours’ rest, and poor quality. He’s been exercising plenty: swimming, bouncing at a birthday party, bike riding, chasing his cousin. He’s eaten better than he did in Costa Rica. He’s in familiar surroundings. He can’t sleep.

Fact: In Costa Rica, Martin’s attitude improved. He seemed carefree, less focused on fixations like his iPad and Mickey Mouse Clubhouse. He ate new foods. He walked home alone from a local bar/café.

Fact: Since we’ve been home, Martin’s attitude stinks. He’s been whiny, contradictory, and engaging in opposite-talking. (“I’m never going to use my iPad again! Throw it away!”) He’s grouchy. This morning he refused to try peanut butter on apple. He loves peanut butter. He likes apples. Apparently the idea of combining the two proved too much. An hour later he wandered away from his own bus stop.

Fact: I don’t know what to do with this information.

Compromised

Sunday’s Weekend Edition had an interview with Arianna Huffington about her new book, The Sleep Revolution: Transforming Your Life, One Night at a Time, which reminded me of a post I’ve been meaning to write about sleep.

Or as it were, sleeplessness.

Martin’s early autism was marked by profound inability to sleep. He took an hour or more (sometimes up to three hours) to fall asleep and managed only a few hours before waking again for long stretches, like from 1:00-5:00 am, and then, maybe, sleeping another couple hours. When Martin was awake, I was awake: He yelled and cried, climbed out of crib or bed, and usually needed physical restraint to rest, or for any hope of returning to sleep. (A weighted blanket made no difference.) For more than a year, I survived on as little as two hours’ sleep per night, and considered six hours a luxury. When I did sleep, it was often on Martin’s bedroom floor, or contorted around his body in a single bed, or upright in the chair next to him. I drafted a celebratory post when I could finally lie in my bed even though he was awake, and again the night that I lay awake in bed because I finally wasn’t exhausted.

I’ve said this before, and I believe I will say it many times again: Sleeplessness makes autism so much the worse. Autism is emotional turmoil. Adrian and I have had to fight the system to seek recovery for Martin. I endure constant guilt about whether my own actions contributed to Martin’s condition. I’ve given up on having a second child, and at times I questioned whether my only child would ever live independently. All of that notwithstanding, the single greatest challenge of Martin’s autism, for me, has been sleeplessness. I understand why sleep deprivation is considered a form of torture. When you’ve had only 20 hours’ sleep over an entire week, nothing makes sense. During the most challenging, jittery months, I had to avoid sitting down during the day, because I might fall asleep, wherever I was.

Even when Martin became a better sleeper, I regret to report, I continued to squeak by with too little rest, juggling writing, autism recovery, the bad nights Martin still sometimes had, and as close to a healthy a marriage as I could muster.

Now, three or four years after the Great Sleeplessness, I make an effort to get at least seven hours’ sleep every night, and eight full hours as often as possible. I’m doing pretty well. But I know that my health still shows the effects of having gone so long without sufficient rest. Before Martin developed autism, I caught two colds a year, one in the winter and one in the summer, and other than that rarely was sick. Since the Great Sleeplessness, I’ve endured as many as four major illnesses per year, despite eating a cleaner diet than ever. Nowadays when I feel “something coming on,” I can’t assume that if I take it easy for a few days and lay off the gym, I’ll be fine. “Something coming on” now means that I’m going to be effectively non-functioning. That’s what happened a few months ago, in January: On a Saturday afternoon, I felt vaguely unwell. By midday Sunday, I was coughing uncontrollably. I had to cancel a Monday afternoon flight to California and ask my law partner to cover the mediation I had been scheduled to attend; from Monday afternoon, when Samara arrived (thank goodness, she had been scheduled to come and care for Martin while I was in California) until Thursday, when Samara went home, I stayed in bed. After that, I was able to rise and get through the day, but I remained out of sorts, with a persistent dry cough, more than a week later—at which time a chest x-ray showed I didn’t have pneumonia, and the doctor asked me to please, please consider antibiotics. I suppose I’ve become too reluctant to use pharmaceuticals.

When I was 21 and living in India, I caught dysentery and quickly dropped from 110 pounds (those were the days) to 95 pounds (bad idea!). I’m 5’6″, and it took months for my weight to cross back into triple digits. I also started feeling cold, almost all the time. I wore extra sweaters and slept under piles of quilts. As I recollect, the cold feeling, which was ignited by being underweight, stuck with me four or five years before fading. I’m hoping for something similar now. Constant exhaustion weakened my immune system. Four or five years of taking care of myself—fingers crossed!—should just about alleviate the issue. Check back with me in 2018.

For now, I am done with sleeplessness. I hate sleeplessness. I hate sleeplessness all the more for these points:

  1. Chronic fatigue has imposed a heavy burden on my well-being. If this is what happened to my body, what did sleeplessness do to Martin, who was a growing toddler? Moments like these, I am so very thankful to understand that autism is medical, and to have found biomed as a way to restore Martin’s health, and mine.
  1. For children and adults on the spectrum whose symptoms are more severe than Martin’s, or whose health doesn’t improve with interventions, this kind of sleeplessness may persist for years. Years. And the same can be said for their parents/care-givers. Years. Remember the study that found that mothers of children on the spectrum can suffer damage comparable to combat stress? I think I know a big reason why that happens.

Oh, dear. I feel something coming on again, and this time it’s snark:

Tell me again why “autism is an important part of neurodiversity” and we “shouldn’t be trying to cure autism”?

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.

No Yeast?

Poor yeast, gets all the blame.

I posted yesterday that Martin is in Symptomatic Itchy-ville, and that a yeast imbalance is to blame.

We made it to the doctor appointment (an hour late, with that “patchy fog” to thank), and the doctor thinks Martin’s sandpaper skin looks more like massive detox than yeast overgrowth. To the credit of this theory, we entered Symptomatic Itchy-ville right around the time last month when we reached full dose of takuna, a detoxifying agent.

That’s Martin’s way: His digestive tract isn’t as good as it should be at spitting out bad stuff, so his skin overcompensates. One thing good, one thing bad.

Isn’t that just like our life right now? Martin skips and perseverates and self-stimulates by running laps. He’s grouchy; everything is a tantrum. He was up, in our shared hotel room, from 2:00 am-5:00 am, laughing hysterically in detox mode. (I know he wasn’t actually drunk. I made him carry a jug of drinking water into the hotel last night, a Herculean effort that left no little hands free for smuggling alcohol.)

Those challenging aspects make it easy to overlook the good that’s happening. In the doctor’s office yesterday, Martin jumped on the trampoline higher and with more coordination than ever. He jumped in circles and announced, “I’m jumping in circles.” When he was trying to fall asleep last night—late last night—he called from the bedroom of our hotel “suite”:

“Mommy!”

Parked on a sofa in front of the ChiefsSteelers game, I responded: “I’m eating dinner, Martin. Go to sleep.”

“Maybe later you’ll come to bed and shut the bedroom door.”

I’d left the door between the bedroom and main room ajar, so Martin wouldn’t be scared. I called, “Do you want me to shut the door now?”

“No. Maybe later.”

It might not sound like much, but that’s a conversation, or the beginning of one, in any event.

We’re surviving the not-so-good because there is also good.

And maybe because it’s not yeast. I’m not sure I have the strength for another full-out war on yeast.

The Bad Nights Aren’t So Bad

Martin’s had two nighttime disturbance in the past two weeks.

Last Tuesday I heard him crying at 10:40 p.m. Crying usually signals a nightmare or some other fright, and such was the case. He had fallen out of bed. He was plopped on the hardwood floor, clutching his stuffed elephant, confused. I lifted him back into bed, checked for damage, reassured him while rubbing his back, then returned to the kitchen as he dozed back off.

This Tuesday he woke me by calling “Mommy! Mommy!” at 1:10 a.m., from his bed. That’s a worse sign; calling for me indicates that Martin is fully awake, and going to be up for a while. I went to his room and said, “Martin! It’s still nighttime. Go back to sleep until morning.”

“I want you to get in my bed,” Martin replied.

“No. I’m going to sit outside your door. You go back to sleep.”

“I want you to sit in the rocking chair,” Martin said. The rocking chair is in his room.

“No. But I’ll be right out here,” I said and exited his room, leaving the door ajar. I stepped into my and Adrian’s room—our door is only four feet from Martin’s, across a small landing—to retrieve my iPad.

Martin started to cry. “Mommy! Mommy! I want you to come inside.”

“Martin!” I said from just outside his door as I powered up the iPad. “You’re fine. I’m right here. Go back to sleep.”

He cried a little more, called, “Mommy! Mommy!”, and fell silent.

I sat down and scrolled through my friends’ Facebook statuses. Since I’d also done that right before I fell asleep 90 minutes earlier, there wasn’t much to read.

Martin started up again. “Ah, Mommy! Ah, Mommy!”

“Martin! Don’t be silly. It’s sleepy-time. Sleep.” I closed Facebook and called up a Scrabble game I had in progress against “CPU.” CPU was beating me by 95 points.

Ten minutes passed. I shut off the iPad, to gauge whether Martin would react when the glow disappeared from outside his door. Nothing. I waited another couple minutes, then quietly rose and returned to bed. It was around 1:30 a.m. I fell asleep.

“Mommy! Mommy!”

2:02 a.m. He was at it again. I stayed in bed and called, “Martin, it’s sleepy-time. Sleepy-time!” Next to me Adrian groaned and flipped onto his stomach.

“Ah, Mommy!”

“Martin, stop it! Go to sleep.”

Silence, then sudden crying. Martin was going to push the point. I got back up, grabbed the iPad again, and returned to my perch outside Martin’s still-ajar door. “I’m sitting right here,” I said. “Sleepy-time.”

Martin stopped crying and started chatting to himself: “You’re right there. Mommy is sitting right there. Mommy is right there.”

No new Facebook status updates. More Scrabble for me. Big defeat to CPU. I’ve got to stop setting the Scrabble difficulty level to hard, at least when I’m playing half-asleep. I shut the iPad off and listened for a reaction from Martin. Nothing. I snuck back to bed and dozed off.

“Mommy! Ah, Mommy!”

2:54 a.m. Martin was still awake. I called to him from my bed, eliciting more rumblings from Adrian. This time Martin didn’t push the point. Without crying, he said, “You’re right there.”

“Yes. I’m right here.” I didn’t leave my bed. I fell back to sleep.

Martin woke me at least twice more; the last time I recall was around 3:40 a.m. Each time I was able to quiet him without getting up again. Finally I heard no more from Martin, and I slept until my 6:00 a.m. alarm.

I estimate that, in total, Martin was probably awake for three hours. I entered his room just once. About 40 minutes of the three hours I spent crouched outside his door with my iPad. The remainder of the period I slept, albeit with interruptions.

I would not describe this as a good night. Not by any means. But it is progress. We aren’t so far from the time when Martin routinely woke for three-, four-, and even five-hour stretches during the night, and either Adrian or I had to be in his room every minute until he returned to sleep. Sure, he was up this Tuesday night, but (1) it was an unusual occurrence, (2) for the most part he stayed alone, and (3) eventually he got himself back to sleep.

Sure, I had to be up, too, and my calling out from our bed bothered Adrian. But for the most part, I remained horizontal, in my own bed. Anyone who suffers chronic lack of sleep will tell you—horizontal rocks.

Go to sleep, little man. Seriously. Sleep. Please.

The Good Kind of Sleeplessness

I’m drafting only a short post this evening.

I’m tired, you see.

I’m tired because I didn’t sleep well last night. I lay in bed awake for several hours, until 2:00 a.m. I woke when Martin clambered into my and Adrian’s bed, around 8:00 a.m.

Here’s the thing: Martin didn’t keep me up until 2:00 a.m. He didn’t wake at midnight and rustle for hours while I hovered nearby, iPad in hand. Nor was I anxious, thinking that he’d be up as soon as I closed my eyes, or pondering his future.

Incredibly, I wasn’t able to doze off because I wasn’t tired. Each of the previous several nights, I enjoyed eight or more hours’ sleep. My body, apparently, felt sprightly enough to play a few additional games of on-line Scrabble and then gaze two hours at a near-full moon.

Since Martin’s ASD diagnosis almost two years ago, and even before that (from age 14 months on, he had sleep troubles), and even on vacation (I worry a lot), I cannot recall a single night when sleep eluded me because I wasn’t tired. Between 16-hour days managing Martin’s recovery process, and worrying about whether we’ll succeed, and sitting up with him, I function in a state of permanent exhaustion, punctuated only by degrees. Most nights, I lose consciousness before I finish a 30-second prayer. The remaining nights, anxiety so clogs my mind that I give up trying to sleep and wander the apartment “getting things done” throughout the night.

We’re on vacation this week, in a rented seaside house that compels relaxation. Martin has been sleeping well. My mother-in-law is traveling with us; she wakes with Martin each morning and washes and dresses him before releasing him to me and Adrian. Despite the crap summer we’ve been having, I am sleeping.

I’m off to sleep more now.