Monthly Archives: August 2016

What Will We Remember?

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Friends visited us recently with their son Robert, who is younger than Martin and less far along the autism recovery journey. Robert kept his mother busy, as she had to pull him repeatedly away from his fixations—trains, colors—to get him to eat or otherwise join the group.

After our guests left, Adrian said, “Robert can be a handful!”

I replied, “Reminds me of Martin a few years ago.”

“No, Martin never had obsessions like that.”

“Excuse me?” I asked.

“I remember when we always had to take the Brooklyn Bridge home, and how he liked certain train lines, but he wasn’t so challenging as Robert.”

“Are you talking about our son, Martin?”

“Yes.”

“So you’ve forgotten when I had to buy placemats in different colors so he could practice using something other than yellow without having a meltdown?”

“That’s right. I did forget that.”

“And the panic if he boarded a subway and no yellow seat was available?”

“I guess he did that, yeah.”

“Then there were the times when he and I had to wait for the No. 2 subway, because if a No. 3 came instead, he’d scream with fright, even though he knew it went to exactly the same place.”

“You did used to tell me about that.”

“How about when he couldn’t go to school unless he had that pink stuffed bear from Chicago in his backpack? When he had to approach and open every mailbox we passed on City streets? When he refused to enter the wine bar if ‘our table’ was occupied? When he—”

“Okay, fine. He did have all those obsessions. It’s easy to forget what those days were like.”

This conversation made me reconsider the previous posts “So Far Gone” and “Manifesto.” One day, when someone says, “Maybe Martin never had autism,” will I respond, “Maybe not,” because I too have forgotten? How will we bear witness to recovery as more and more symptoms become so far gone that we forget they ever existed?

I have his earliest developmental neurology reports, the ones that describe a child unresponsive to his own parents, unaware of his own name, echolalic, in the first and third percentile of expressive and receptive language. Those tell the early story.

And I have this blog.

Just Had to Get That Out

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Some themes get old on Finding My Kid. If you’re a regular reader, you can probably name a few: sleeplessness, detox and die-off, food, the New York Rangers. These are the light motifs that underlie our journey. They are the stuff of my day-to-day.

I have to add another theme to the list: skepticism and rebuke. At least, skepticism and rebuke as pertain to Heilkunst. Recall that we started Heilkunst late in 2014, and that it’s a method of sequential homeopathy designed to help the immune system clear various insults it has suffered. I went into the process with doubts. Then the first clear Martin received (for coxsackie) made him puke and also produced a light coxsackie rash, and I started to see the light. Later, when we cleared the H1N1 and MMR vaccines, plus antibiotics we’d previously used to treat SIBO, Martin’s reactions and improvements were so dramatic that I became “non-skeptical.”

At least for a time. But there were no dramatic improvements for a while, and I grew complacent, and complacency, evidently, reopens the door to doubt. I asked myself: Is Martin still benefiting from Heilkunst?

If you happen to write fiction, you’re probably familiar with Chekov’s gun, which is the rule that a story (or play, or scene, or essay) should be free from extraneous detail. I poked around and found that the gun is usually attributed to a letter Chekov wrote in 1889 to playwright Aleksandr Semenovich Lazarev: “One must not put a loaded rifle on the stage if no one is thinking of firing it.”

Writing rules are meant to be broken, but I will respect the gun—which is to say: I raise my Heilkunst doubts because I intend to erase those doubts.

It isn’t supposed to be all about me. Is it?

To this day, I carry guilt about Martin’s birth. I won’t describe all the circumstances again, except this brief enumeration: In the 42nd week, against my better judgment, I allowed induction by Pitocin, which led to Martin getting “stuck” sideways, which led to continual drops in his heart rate, which led to an unplanned C-section, which upset me so much that I got a fever, which (“maternal fever”) caused the hospital to place my healthy baby in the NICU and pump him with intravenous antibiotics, in an incubator away from skin-to-skin contact.

Here’s a portion of the story I haven’t shared before on this blog: After Martin was taken, I was wheeled into a “recovery room” and told to sleep. Even then, my instinct told me that something was wrong. I needed to get to my child, and so, fresh off a surgical table, I pulled myself from the hospital bed and tried to find Martin. I made it only a few paces before blood collected around my feet and I slipped. A nurse entered and found me on the floor, a mess, trying to rise again. The nurse insisted that I get back into bed. I said, “No. My child. I have to get to my child.” Finally, I agreed to lie on the bed on the condition that she find Adrian: “Get my husband! Go get my husband!”

She left the room. Somehow, Adrian and my mother appeared in the recovery room with Starbucks drinks. (It was early morning.) Though even I didn’t know why, the sight of Adrian and my mother smiling with Starbucks drinks in their hands enraged me. When our child needed us, they’d gone to Starbucks. I told Adrian to go to Martin, to find Martin and protect him. Adrian said Martin was fine, that the doctors were taking care of him, and that I needed to go to sleep. I said Martin needed to be with me, and that Adrian needed to find Martin immediately.

I don’t know what happened after then. I have no more recollection. My next memory is being wheeled into my own hospital room. I may have fallen asleep, or fainted, or become delirious (if I wasn’t already). Or maybe I’ve blocked the memory. In any event, what remained was the impression that Martin was in danger, and I was at fault, and Adrian was at fault, and nonsensically even my mother was at fault. Three years later, when I began to understand what antibiotics do to the gut biome, and the gut biome’s connection to autism, I wanted nothing more than return to the day before Martin’s birth and refuse the Pitocin, and refuse to surrender him to the NICU.

Please don’t chime in and point out that my guilt is unjustified, or that it is ridiculous to be angry with Adrian and my mother for getting Starbucks. I know that most first-time parents have neither the foresight nor the wherewithal to realize how destructive our medical birth culture can be. I know all that. Yet, when Martin was five, I attended a wedding and was seated next to the bride’s brother-in-law, who was holding a six-week-old baby and also full of bravado. “They tried to put her in the NICU,” he declared, after describing some minor complications. “They said they’d call family services if I didn’t let her go. So I said, ‘Go ahead and call family services. My lawyer will be here long before they will.’ They gave up and left us alone. Ha! I know my rights!” His performance upset me enough that Adrian and I had to leave the wedding early.

Two months ago, the envelopes with Martin’s latest two Heilkunst clears arrived by mail. When I had talked with the homeopath, he mentioned which clears were coming, but I hadn’t paid much attention and wasn’t thinking about that when I tore open the big envelope to extract the smaller envelopes with remedies.

As soon as I touched the remedy envelopes, my hands began to shake and I started crying. I had to catch my breath. Unsure what was happening, I set the whole packet down and took a minute to compose myself. Sometimes I experience generalized feelings of unease and have to pause to remember what’s got me anxious—an unaccomplished work project, an upset friend, a fight over a bill, whatever. The feeling that overtook me when I was opening the remedies, however, overran generalized unease or emptiness. It was an immediate affront, and I couldn’t connect it to anything happening in my life.

At length, confused, I retrieved the first remedy envelope and noticed what was inside: the first of several clears related to Martin’s birth trauma and NICU experience.

I have no explanation for this event other than to believe whatever energy was in those envelopes—homeopathy is energetic medicine—provoked a reaction in me, from the spot of my regret.

Just had to get that out.

Along with the clears every few weeks, Martin also takes daily Heilkunst drops. One dropper helps with Lyme disease, and the other is a drainage dropper that helps him move stuff through his system generally.

About a month ago, his drainage dropper became contaminated and I had to order a new one. I could have replaced the drainage dropper with a “paper remedy,” which is where you write the particular remedy on a piece of paper and keep it near the recipient. Believe it or not, however, some aspects of homeopathy, like paper remedies, still seem too far out there even for me. So I ordered a new drainage dropper, which had to be sent from Canada and then reconstituted upon receipt, and a lot was going on, and yadda yadda yadda, Martin went a couple few without his drainage dropper.

Martin’s final week without the drainage dropper was dreadful. He was defiant, resistant, downright crabby. His teachers reported silly and unfocused behavior. His personal trainer said he seemed “out of it.” He demanded constant attention. He couldn’t fall asleep. I had an extra glass or two of wine. (Food for thought on that topic, see this opinion piece.) I connected none of this to homeopathy.

Sunday, the end of that week, was no exception. Martin vacillated between wanting to accompany me to church and wanting to go with Adrian to the gym. Actually, he spent more time complaining about both choices. He wanted to stay home and use his iPad. He wanted to stay home alone. He complained about lunch. He complained when Adrian “made” him go swimming. He whined so much about the notion of going out to dinner that we decided to eat on our back deck instead. (We don’t usually yield to whining. A great blizzard can snap even the most stalwart bough.)

Meanwhile, I finally got my act together and prepared the new drainage dropper, which had arrived at least a week earlier and sat on the counter. Mid-afternoon, Martin had his first drainage drop in several weeks.

He ate dinner without incident, other than grumbling about what I’d prepared. He was two bites into dessert (chocolate quinoa cake, leftover from entertaining Saturday guests) when he said, “My tummy hurts.”

“Why don’t you go to the bathroom?” I asked.

He went in the house.

He didn’t return.

Five minutes later I found him sitting on the toilet, hunched over. “My tummy hurts,” he said.

“Did you go to the bathroom?” I asked.

“I can’t.”

“Let’s see if a warm bath helps.” I ran a warm bath with Epsom salt and baking soda and helped Martin into the tub.

I’m going to yadda yadda some more details here. I’ll report the highlights: a bathtub of water, Epsom salt, baking soda, and puke; Adrian yelling, “Get him to the hardwood!” as Martin started to puke on the family room rug; me grabbing the countertop compost bin to catch more puke.

When Pukefest concluded, Martin said simply, “I need to go to bed.” Within two minutes, he was asleep, at least an hour earlier than usual.

When it comes to Martin, I’m prone to overreacting. Once the house had been scrubbed clean, I proceeded directly to Google to review the signs of delayed drowning, because Martin had spent the afternoon in the pool and now was unwell. Excessive tiredness was on the list. Vomiting, maybe. Martin had none of the other symptoms of delayed drowning, and he’d identified a tummy ache, not any pain in his lungs or chest. None of that stopped me from waking every hour during the night to check on Martin to make sure he was breathing well and not foaming at the mouth. And so I can tell you this: That night, Martin slept. For thirteen hours he barely stirred.

When he woke, at 8:00 Monday morning, Martin was utterly buoyant. He bounded into the kitchen and said, “It’s already 8:00! I slept late!” I replied, “That’s no problem. I will drive you to school after you eat breakfast.” (Martin attends summer school, for which I usually wake him by 6:45.) I steeled myself for protest; Martin will exploit any excuse to get out of school. The protest wasn’t forthcoming. Instead, he said, “Sounds good! I’m going to get dressed.” For breakfast, he ate eggs and veggies in a tortilla. When I picked him up from school, his teachers said he’d had a “fantastic” day. His personal trainer reported “big improvement.” He ate dinner without a whimper. He went to bed and slept soundly again.

Coincidence? Or just undesirable stuff—who knows what?—building up without his dropper?

Once upon a time, I would have said the former.

P.S. According to Wikipedia, Aleksandr Semenovich Lazarev was a pseudonym of A.S. Gruzinsky. Other than that, I can’t find out much about him. Poor Lazarev/Gruzinsky appears to be remembered only for Chekov’s gun.

IMG_3972Martin prepares to take a swim lesson.

Cherry-Lime Soda

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Martin and I were in the car. He complained he was thirsty, so I offered him a sip of my cherry-lime kombucha “soda.”

Martin examined the label, then handed back the bottle and said, “I can’t drink soda. It has refined sugar.”

“It’s okay,” I said. “It’s not real soda. It’s kombucha.”

He took the bottle again, shook his head, and said, “It says ‘cherry-lime soda.’ I’m not having any.”

I’m telling that anecdote for two reasons. First, I have read about kids who police their own food, who attend birthday parties and turn down cake and pizza. I envied the parents who could trust their kids with food choices. Now it seems I have cultivated such a kid. Martin told me recently that an assistant teacher had tried to give him a “fruit snack”—one of those corn-syrup-and-artificial-color bombs disguised as a fruit product. “I said no!” he declared, with glee. “I said I can’t have that!” Evidently he found it funny that the offer had been made at all.

Second, “cherry-lime” is a cheap way to introduce my long-promised post about Lyme disease. (Get it? Lime-Lyme? What? You’d forgotten how I promised a post about Lyme?) Lyme disease is playing a major role in our lives right now. We are fighting Martin’s Lyme disease with antimicrobial herbs, which sound innocent but provoke reactions strong, and immediate, enough for me to trace them to particular doses. On days when I want Martin to perform—say, when he’s visiting a school or completing a neuropsychiatric evaluation—I withhold or delay antimicrobials, in an effort to “even out” his behavior. It’s all so—

You’ve been on my mind.

Let’s start at the beginning. Some time ago I received this text from my mother: “I am just catching up on your blog.”—hurrah!—“Martin seems to be getting treatment for Lyme disease a lot. Does he actually have it?” Fair question. Absent an acute infection or reaction, Lyme disease is notoriously hard to diagnose. Indeed, controversy surrounds Lyme diagnosis. Some doctors, especially Lyme-literate doctors, or “LLMD’s,” have been accused of profiting by over-diagnosis and treatment. Conversely, some commentators argue that Lyme disease is at epidemic levels, wildly under-diagnosed, and mistaken for myriad other ailments. Clinical practitioners, including Doctor William Lee Cowden, who has worked extensively with Lyme disease, report Lyme prevalence levels even greater than 50% in children who present with autism. Lyme disease is a controversial topic.

I spent my childhood in Upstate New York and now live in Downstate New York, two areas where Lyme disease is widespread. In 1993, while staying in a rural area outside Berlin, Germany, I found a tick embedded in my arm, a known transmission method for Lyme and related diseases. A distant uncle of mine was hospitalized repeatedly for Lyme-related illnesses; I have a friend who lost his sister to a manifestation of Lyme disease; and my child had autism. Lyme has been on my mind for a long time.

In November 2012, Martin showed positive for Borrelia burgdorferi, the causative agent of Lyme disease, in IgG/IgM ELISA testing,. That result was bolstered by evidence of protein bands on IgG and IgM Western Blot tests. Although Lyme disease testing is not entirely reliable, Martin’s integrative physician, whom I’ll call “Dr. S,” found the evidence strong enough to recommend an extended course of antimicrobials as treatment for Lyme disease. The antimicrobials certainly seemed to affect him. For example, Dr. S recommended that I increase takuna by a few drops per day over two weeks, until Martin reached a maximum dose of 30 drops twice per day. Instead of two weeks, it took three months to reach 30 drops twice per day, because Martin reacted so strongly to each increase: crazy laughter, hyperactivity, sleeplessness.

Not long thereafter, we switched physicians because Dr. S moved to California. The new doctor, after running her own testing, said she saw no evidence of lingering Lyme infection and took Martin off the antimicrobial protocol. At the time, I was not Lyme-informed enough to know that (1) takuna and other herbs driving Martin bonkers probably meant Lyme was present and being addressed, or (2) that treating Lyme this way requires a commitment much longer than the six months we’d done the protocol.

Round two, we won’t give up.

We spent two years with the doctor who took Martin off his first Lyme protocol. February 2015, we switched back to Dr. S (all the way in California!), who took a deep breath and started trying to deal with the many issues Martin presented at the moment; the continued Lyme possibility was on the list but not at the top.

July 2015, something bit Martin on his foot, and he developed what might, or might not, have been a bull’s-eye rash. Lyme shot back up the list. With Dr. S’s approval, I took Martin to visit an LLMD in New York. That doctor had us send a blood sample to Galaxy Diagnostics in North Carolina for a “Bartonella ePCR™ Single Blood Draw” test. (If you’ve ever been present for drawing blood from Martin, you’d understand why the “Triple-Draw” test wasn’t for us.) Galaxy cultured the sample in a proprietary “Bartonella alpha Proteobacteria Growth Medium” before subjecting it to Polymerase Chain Reaction (PCR) testing. (If you’d said any of this to me before I became a biomed parent, I would have rolled my eyes.) After several weeks, the culture came back positive. Martin’s blood sample grew bartonella, a co-infection to Lyme spirochete. (The ticks that transmit bartonella also transmit Lyme, and the co-infections can be transmitted in the same bite.) Galaxy’s was the best test we could find, evidently the most definitive, and we got our answer: If bartonella flourishes when Martin’s blood is cultured, then Martin has Lyme disease.

The New York LLMD’s protocol, in such circumstances, is to put the infected patient on an extended course of antibiotics. I objected, explaining that for Martin an extended course of antibiotics could be destructive. I believe that Martin’s autism originated, in part, when he was taken from me at birth, placed in a NICU, and pumped with intravenous antibiotics. Antibiotics can kill healthy gut bacteria and thereby weaken the immune system. We have worked for years to restore Martin’s gut health and digestive functioning; I don’t want antibiotics to risk or compromise that progress. The LLMD listened to my reasoning and asked for my permission to contact Dr. S to discuss a treatment protocol.

Martin is fortunate to have these doctors. The LLMD and Dr. S ended up coordinating a phone meeting to discuss treating Martin’s Lyme disease with more natural antimicrobials versus pharmaceutical antibiotics. (Some studies demonstrate that herbal antimicrobials, or an antimicrobial/antibiotic combination, can be equally effective to pharmaceutical antibiotics alone.) In the end, Dr. S’s position carried the day, and she and the LLMD agreed on a protocol utilizing tangarana, samento, and other natural antimicrobials.

We’ve been actively targeting Lyme disease again since last October. When Dr. S adds an antimicrobial to Martin’s protocol—she substitutes the varieties in and out, to prevent the Lyme from becoming resistant—we begin a process of building to the recommended dose, sometimes as slowly as adding two drops per week. Usually, I can track the effects: When the antimicrobial stirs up too much, Martin becomes hyperactive, irritable, and unfocussed, and we need to increase more slowly.

As with nearly all facets of recovery, we see slow, steady improvement as Martin’s Lyme disease resolves. For example, Martin is holding his longest-ever independent phone conversations with Adrian, and finally eking some progress in reading comprehension. We also have tough days. This spring was a season of meltdowns and oppositional behavior. Even now, Martin is doing a lot of opposite-talking. I’m never going to use my iPad again! Never! I don’t want any dessert! Take it away! I don’t want to ride my bicycle anymore! Throw it away! He is also asking questions just to contradict the response. Do I have hockey practice today? “Yes.” No! No! No, I do not have hockey practice today. He’s not sleeping well. He’s anxious. With patience, and as much composure as I can muster, we are muddling through.

We plan to pull back, for a few months, on treating Lyme aggressively, when Martin begins his new school. That adjustment will be tough enough without die-off behavior.

Sometimes, when when ROOS strikes, the length of Martin’s recovery feels overwhelming. His autism diagnosis is gone, but he still has such trouble with attending and maintaining attention, and he is goofy and immature. Lyme disease, parasites, and the ever-present threat of candida overgrowth—will we ever finally reach the end of these issues, or will my son’s health always be an issue to “manage”?

This is our new world, right? Chronic illness for everyone.

IMG_3464Martin in our pool. The lazy days of summer drag on.

IMG_3810Sunset over the docks in our little suburb. Bring on the autumn.

He Prefers History Books, and Biographies

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In addition to anonymous on-line readers, I know that these people, at least, follow Finding My Kid:

Ÿ         > high-school classmates,

Ÿ         > my mom,

Ÿ         >  members of our local special-needs community,

Ÿ         > families who use the same doctors and practitioners we use,

Ÿ          > neighbors from our former residence in the City,

Ÿ          > Adrian’s secretary,

Ÿ          > some person who likes to Tweet at me that children can’t recover from autism.

I know that this person, at least, does not follow Finding My Kid:

Ÿ          > my husband, Adrian.

In the past, I’ve been peeved by Adrian’s indifference toward my blog. I ask, “Hey, did you read my post about [whatever I think I’ve written well]?” and Adrian responds, “No. Do you want me to?” I say, “My post about [something that inexplicably comes up in many search engines] has got more hits than usual. Did you like it?” and Adrian responds, “I’m sure I would like it.”

My friend Veronica has a 14-year-old son who is not yet verbal, and occasionally violent. Veronica posts on Facebook daily about her family’s ASD struggles. Last week Veronica asked me why Adrian had “unfriended” her. I called Adrian and inquired. “It’s too much,” he said. “Facebook is my happy place. I want everyone’s life on Facebook to be perfect. I can’t stand reading about autism all the time.”

I’ve realized that probably also explains why Adrian doesn’t read Finding My Kid. By necessity, Adrian lives autism recovery. Martin’s challenges are Adrian’s daily reality. My thoughts on recovery are Adrian’s nighttime pillow talk. (Sad, right?) I am communicative enough at home that Adrian doesn’t need to peruse blog musings to know my thoughts. Also, I run Martin’s autism recovery show, so Adrian doesn’t need to read widely to educate himself on therapies or diets. The reasons that people might follow my blog—wondering how to make recovery work, day-to-day, or searching for treatments, or seeking inspiration, for example—really don’t apply to Adrian. He gets enough autism. Why, when he’s away from Martin, would he want to interject more autism into his day?

Back to Facebook and Veronica: I must teach Adrian how to “unfollow” instead of unfriending, so he doesn’t hurt any feelings. I would write those instructions here, but I’m sure he won’t be reading this.

I Want to Lick You

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A provocative title for a blog post, right?

Don’t get too excited. The post isn’t nearly as provocative as the title. It’s about people perceiving Martin as weird.

Especially when Martin is detoxing, or when a treatment has “stirred up” viruses or parasites or metals, &c., he engages in strange behaviors. Last week Martin accompanied me to an AT&T store. While I sat talking with an agent, Martin rolled on a padded bench, threw himself on the floor, and tried to bury his face in my lap. In an instant of distraction, I felt something wet and realized Martin had lifted my shirt and licked my back. Hoping the agent hadn’t noticed, I pulled my shirt down and whispered, “Martin, don’t do that!”

Martin shouted, “I want to lick you!”

When Martin was younger and more impaired, situations like “I want to lick you!” were easier to endure. Back then, I think people recognized that something was going on with Martin, which made odd behaviors understandable. Plus, the smaller the child, the crazier the utterances, right?

Now, Martin is eight years old, and appears maybe a bit older—physically, he favors my six-foot-three-inch brother, Eddie—and responds to questions and speaks in sentences. Relatively few people, I imagine, realize on first acquaintance that something is going on, so now it is all the more unsettling when detox behavior prompts him to broadcast, in public, “I want to lick you!”

Adrian and I are shopping for a new SUV. My darling husband is highfalutin, so we are test-driving luxury models. Monday Martin accompanied us on one such expedition. Monday also was Martin’s worst day in ages; his teacher reported that Martin laughed inappropriately throughout the day and repeatedly disrupted class, his personal trainer said Martin was too distracted to participate in the exercises, and Martin staged a mini-meltdown when told that we’d be going car shopping instead of home to watch television. Still, it didn’t seem like that bad of an idea to take him along.

Until Adrian and I, with a saleswoman by our side, turned around to find Martin, all 65 pounds of him, half-laughing and half-crying, sprawled across the hood of an $85,000 Porsche.

As the Dead tell us, every silver lining has that touch of gray.