Everything Is Wrong

These past six or seven months have probably been the most challenging since we began biomedical recovery eight years ago. Martin has “tanked” before—but never so dramatically, or for so long.

That’s not why I haven’t been posting to my blog. I promised honesty about the disasters as well as the pinnacles, and I’ve followed through on that promise. No, I haven’t been posting because I started a new position in August (if you’re keeping track, now I have two jobs, both part-time), and that combined with meeting Martin’s needs (the cooking! all that cooking!) has kept me awfully busy.

Yes, I’m “doing too much.” Yes, that’s part of who I am. But I love both of the positions in which I’m working. My only worry is whether I have time to meet Martin’s needs. On that point, I must be scrupulous.

The troubles began last summer, in Costa Rica. Martin started feeling like he had to pee constantly. He might finish going to the bathroom, wash his hands, and return five minutes later. He sometimes required three trips to the bathroom before we could leave the house for camp. When I asked whether he really needed to go, he might reply that he thought he needed to, or that he wanted to “adjust” his privates. Clearly, some irritation was plaguing Martin.

Next came the physical tics. The first tic was thrusting his index fingers into his nose and then his mouth. Not picking or fiddling, thank heavens, but thrusting. Often. By the time we returned to the States and Martin started fourth grade, he had added eye rubbing. He pushed his knuckles roughly into eyes, then moved his palms in circles on his eye lids. His eyes looked red and sore.

The nose-mouth tic faded, only to be replaced by a need to touch his genitals and then his backside, almost ritually. You can imagine what this did to all those fledgling friendships Martin had been assembling toward the end of third grade.

Desperate, I allowed Martin’s New York doctor to put him on antibiotics. I had to hit desperation before we tried antibiotics, because antibiotics are destructive to gut health, and poor gut health has been one of Martin’s toughest health issues. Long-term antibiotic use, however, is known as an effective treatment for PANS. We believe Martin is suffering a PANS flare, and when you see your 10-year-old constantly frustrated because he feels compelled to touch his private parts, even in front of other kids—let’s just say you’ll try almost anything.

The self-touching did fade, thank heavens, only to be replaced by a verbal tic. Beginning in December, Martin lost control of his mouth and, in response to the slightest frustration, blurted inappropriate phrases. I mean really inappropriate. It’s no longer limited to, “I hate you,” or, “Stupid!” He’s called his teacher, and me, “bitch.” He told his classroom aide, “Die, scumbag!” His classmates are “idiots,” whom he informs, “I have a girlfriend in second grade. We’re having sex.” (“Please believe me that these are not phrases that are used in our home,” I begged his teacher one day, unable to account for the behavior.) Often, after Martin says such things, he becomes upset and apologizes: “I don’t know why I said that! I knew it was coming out, but I couldn’t stop it in time!”

As is characteristic, Martin’s skin has been a mess since this ordeal started. He claws at his arms and legs, which are marked with bloody spots and recent scars. Mornings and evenings we massage him with CBD oil. The CBD oil helps but doesn’t resolve the irritation, which originates from within.

Martin’s school team—his teacher, his classroom aide (shared with another student), and his behaviorist—are terrific. They understand that the behaviors are out of Martin’s control, so he is not punished, not even for the most egregious name calling and acting out. (If I were a teacher, being called the b-word in front of other pupils, I might not have had the same self-control.) They’ve come up with a incentive-based rating system: Every day we receive a sheet rating Martin’s behavior from one-to-five stars, with a number of categories (“Did I keep my hands to myself in the hallways?” “Did I use kind words during recess?”) and a space for comments. Evenings, Adrian and I discuss the report with Martin in the least threatening way possible, and strategize for how he might do better.

Last week, Thursday and Friday, Martin finally had two five-star school days, with no inappropriate language. Saturday, my brother Eddie took Martin to the City for one of their “big adventures” and reported excellent behavior. Saturday evening Martin vomited his dinner and went to bed early. Throughout Saturday night and Sunday morning, he vomited. Sunday he voluntarily spent the day in bed, without complaining. By Sunday evening he felt better enough to start eating again, and he asked me not to cancel a pre-planned playdate Monday morning—it was the Martin Luther King, Jr. holiday, so the kids were off from school—with Ryan, a boy from last-year’s social skills playgroup.

The playdate went really well. Ryan is a year younger than Martin, with corresponding developmental delays. The two conversed fluidly, albeit about unusual topics. They were, for example, both incensed with the school district’s decision to have classes the day before Thanksgiving 2018, when that day was off in 2017; this gave them 10 minutes’ conversation or more. After a while, Martin wanted to fall back onto his standby, screen time. He asked whether Ryan wanted to play Fortnite. “I’m not allowed to play Fortnite,” Ryan replied. To my relief (I was eavesdropping from the kitchen), Martin said okay and suggested LEGO instead. They played LEGO.

Could we finally have turned a corner? I asked myself. Two five-star days at school, taking care of himself while sick, and now a successful playdate?

Hope is a train I shouldn’t always board. It sets me up for deflation.

Tuesday, Wednesday, and Thursday this week were three-star days, or worse. On several occasions Martin tried to hit other kids. To hit other kids.He’s never been a hitter. And he was throwing the word “idiot” around.

Here’s the summary of right now: Martin has been on antibiotics eight weeks. The constant bathroom-going and most of the physical tics have ceased, though not soon enough; he has lost virtually all the friends he gained last year, when he had such a tremendous spring semester. His state of being cycles from anxiety to meltdown to uncontrolled silliness. He loses control over what comes out of his mouth.

I’m trying to focus on what’s happening on a deeper level. Martin is conversant, much more than he used to be. He is self-aware, and sorry for the consequences of his behaviors. His inference skill has improved, and with it, his reading comprehension. He had such a good weekend that I’m starting to believe we might be getting close to leaving the PANS, or whatever it is, behind.

And he’s trying.

But today he told his teacher he’s going to “blow up the school.”

Here we are.

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.

Why Can’t We Cross the Finish Line, the Nonexistent Finish Line, Together?

Bobby [a pseudonym] is eight years old and, according to Martin, his best friend. Bobby and Martin met in special-needs preschool four years ago, when Bobby was four years old and Martin was three. That’s also when I met Bobby’s mom, my friend Stacey [a pseudonym]. Bobby also has autism, and Stacey started biomed with him the following year, when Bobby was five.

When we all met, Bobby and Martin were superficially alike, with corresponding language limitations, emotional dysregulation, and lack of joint attention. They both had been classified “mild-to-moderate” on the autism spectrum. Beneath the surface, however, Martin and Bobby have entirely different health issues. Martin, simplified, has gut dysbiosis, mitochondrial processing issues, recurrent candida overgrowth, and suspected viruses hiding in biofilm. His immune system used to exist in overdrive, so that he was “never sick.” Bobby, simplified, has persistent mycoplasma pneumonia, environmental allergies, parasites, and PANS. His immune system is so depressed that he is “always sick.”

Stacey is given to panic. That is, she remains more susceptible than I am to the rollercoaster ride that is autism recovery. It is therefore possible that I did not completely, wholly, 100% believe her when, during the past few months, she’s said that Bobby isn’t doing as well as Martin, and that she’s not even sure they are still making progress in resolving his health issues.

Two weeks ago, Martin and I had a rare opportunity to hang out with just Stacey and Bobby. After a few hours together, and with regrets, I had to agree with Stacey that Bobby is not doing as well as Martin. At the restaurant, Bobby impulsively put his hands in others’ food and bolted from the table. When we walked in town, he disappeared into store after store and cried about having to go to school the next day. On the playground, he couldn’t swing by himself, aggressively hugged strangers, and melted down when it was time to leave. Martin, meanwhile, was perseverating a lot but otherwise looking pretty typical.

Know that I discussed all this with Stacey, and she gave me permission to write this post. I would not blindside a friend on-line, pseudonyms or no.

The afternoon’s low point, for me, came when Bobby was sitting on the sidewalk biting his own arm and I asked myself, “Is Bobby still the right best friend for Martin? Should Martin spend time with friends who challenge him more?” I would never want a mother to question whether Martin is the right friend for her child. I want Martin to be accepted by all kids, typically developing or otherwise. I was shortsighted and cruel to consider, even for a moment, directing Martin toward a higher-functioning friend. I recognized immediately that I was wrong and tried to turn the situation positive by asking Martin, “Your friend is having a difficult time. How can you help?” Still, there was no denying what I’d felt.

There are plenty reasons why, even though Stacey works just as hard as I do, Bobby’s recovery might be lagging behind Martin’s. I had the advantage of starting biomed when Martin was just two-and-a-half; by the time he met Bobby six months later, they were developmentally akin, even though Bobby is a full year older. Stacey didn’t get to start biomed until Bobby was five years old. The boys’ underlying issues are so different. Not all kids respond well to biomed, and Bobby may be one who doesn’t.

Three years ago, I wrote on this blog:

When I hear about other ASD kids making more progress, or faster progress, than Martin, it gives me hope. It also makes me angry and resentful. Why not our turn? Why not yet? What more do I have to do?

I ask myself, Is that still true? Do I still feel angry and resentful when other kids make more progress?

No. I don’t think so. Consider my friend Lakshmi and her son, Partha. I’ve written about Lakshmi before. Partha suffered a regression (lost all language) following a vaccination. We first met a few years ago when Lakshmi contacted me through this blog, and Partha was developmentally at about Martin’s level. Partha is recovered now, except for minor quirks; his mainstream classmates don’t know he had autism. That is much further along than Martin. When I see Partha and the progress he’s made, I feel happy for Lakshmi and inspired by what she’s accomplished. No resentment. No anger. Only the desire to continue sharing ideas over a cup of coffee. The same goes for my feelings about the other three recovered boys I know, as well as the kids I “know” through on-line chatter but have not met.

I’ve reached my current sanguinity, likely, because Martin has made clear, significant, and undeniable progress toward neurotypicality. In the same post as the “angry and resentful” admission, I mentioned that I became frustrated with Martin for spectrum behaviors like skipping, chewing on a straw in the corner of his mouth, and letting himself fall slack. In a later post, I wrote about Martin whining continuously oh mommy oh mommy oh mommy for 30 minutes, and screaming all the way from our apartment to JFK because Adrian suggested that he change jackets. We are nowhere near that place anymore. The spectrum behaviors that frustrate me today are more like talking too loud in church, laughing at the wrong time, and taking too long to finish breakfast. Almost every day, my confidence increases that we will achieve something like recovery.

I asked Stacey how she feels when she sees Martin or Bobby together, or when she sees Partha. (She knows Lakshmi and Partha too. We biomed moms all end up pals.) Stacey said that children who are recovering faster than Bobby make her depressed and anxious. She worries that she isn’t exploring the right treatments, and asks herself what more she can do (as I once asked myself, and sometimes still do). She fears that a mythical window will slide closed, separating Bobby forever from recovery.

And how does she feel when she sees a child who’s made no progress, who hasn’t taken any steps toward recovery, whose behaviors are more pronounced than Bobby’s, who lacks all language? She said, “I try not to assume the emotional burdens of others’ journeys. I want the best for them. I focus on Bobby.”

I admire Stacey for being hopeful for other kids while not letting their condition tint her outlook. I still tie myself to others’ children. Bobby’s performance at our play date has upset me terribly. I can’t feel as good about Martin’s recovery when I know not everyone is doing as well.

Kind of a funny shot of Martin, acting pretty typical while enjoying calamari in a restaurant.

Kind of a funny shot of Martin, acting pretty typical while enjoying calamari in a restaurant.

Once upon a time, it was more difficult for me to witness biomed kids passing Martin. Today, I think, it has become more difficult to see the ones who lag.