Tag Archives: costa rica

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

Posted on by findingmykid
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“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.

Hives

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Martin is allergic to horses. He didn’t always present as allergic to horses. When he was four and five years old, he did hippotherapy weekly, without problems. When he was eight years old, on a visit to Costa Rica, we went horseback riding on the beach: Martin, Adrian, my brother-in-law Pancho, and I. We rode for an hour. I was second in line; Martin, wearing shorts and a small t-shirt, was third. Every few minutes I turned around to glance at him, make sure he was still riding comfortably. I saw no issues. But when we arrived back at the stables, and I was able to see Martin up close, I could see that he was covered in a red rash. Rashed on his arms. Rashed on his legs and, I soon discovered, on his chest and belly. Most of all, rashed on his face, which was red and bumpy. “What’s wrong with me?” he exclaimed and burst out crying. I checked his breathing (it was okay), took him back to our rental house, and put him in the shower. With good scrubbing and an antihistamine, the rash dissipated.

After the Costa Rica experience, I asked Martin’s allergist—a mainstream doctor, not focused on ASD—to test Martin for a reaction to horses. The doctor agreed, though he had to order a special skin test. When it was finally available and administered, the test left no doubt: Martin’s forearm immediately swelled into a red bump. No more horses.

On that same Costa Rica trip (August 2016), we discovered Martin had become allergic to red meat.Sixteen months earlier, in February 2015, in South America, Martin was eating beef with roast potatoes when a red rash formed around his mouth.(That trip, however, he’d ridden horses with his cousins, no problem.) Still I didn’t realize that red meat, which he rarely ate, was the issue; of the Costa Rica trip, I wrote: “He had two allergic reactions, one to a horse that left his face bumpy and itchy, and one to an unidentified food irritant (restaurant) that caused a rash to spread from the corners of his mouth down his neck.” Subsequently I put the pieces together and stopped letting Martin eat beef—but it would be more time yet before I figured out that all red meats were problematic, not just beef. (That discovery, in a “bison incident,” is described here.)

This summer, in Costa Rica again, Martin’s day camp was having an activity in which the kids rode horses to a remote waterfall. I wondered: The allergy came on when Martin was already six (or seven? or eight?) years old. Does he still have it? These Johnny-come-lately allergies—do they stick around? I wanted Martin to be able to participate in the horseback-riding activity, and not to experience one more factor differentiating him from other kids.

So I acted recklessly. (Maybe?) I told the camp director that Martin is allergic to horses. I told her about Martin’s reaction two years earlier, also in Costa Rica. I said I was going to dress Martin in long sleeves, long pants, and high socks, and send him to camp. I asked her to let Martin give the activity a try and see what happened. I reminded her that Martin always carries antihistamine in his backpack, just in case.

Mid-morning, I received a message from the camp director. Martin had only been on the horse a few minutes when he got a terrible rash. She took him off the horse immediately and administered his antihistamine. The reaction was severe enough that she also took him directly to a shower to wash. Thankfully, he was better within a short time.

That’s that. Martin has become allergic to horses, possibly permanently, just as he has become allergic to cats and dogs and has become allergic to red meat.

I am, of course, back to pondering why Martin has developed allergies as he continues to heal. I still think the most likely explanation is that he had these allergies (with the possible exception of red meat, which may or may not be related to Lyme disease) all along, but previously his immune system was neither strong nor responsive enough to mount the proper response. Whereas allergies themselves represent flaws in immune function, perhaps one day Martin’s full recovery will mean the allergies dissipate along with the remaining vestiges of autism.

Today, let’s not dwell on the allergies, and what they might mean. Instead, let’s focus on this: According to the camp director in Costa Rica, Martin didn’t freak out, not even when he was covered in a rash and pulled away from the other kids. She said he was upset for a minute or two, then calmed down. Two weeks later, when the activity again was horseback riding, I offered Martin a choice: He could go to camp and play games or surf while the other kids rode (the director had offered this alternative), or he could take the day off and go to the beach with Uncle Eddie. Martin contemplated for a while, then chose to take the day off. It seemed like a reasonable choice, and it wasn’t a big deal.

Because now, not everything has to be a big deal.

This Ain’t Nicaragua

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Last summer in Nicaragua, Martin flew. He soared. He matured. He grew. If I could have found a way to stay in Nicaragua without being separated from Adrian (whose job in New York sustains our travels and biomed), I would have done so.

Now cut off, for safety’s sake, from Nicaragua, I brought Martin to Costa Rica and assumed he would soar again.

But not so much.

He’s spending too much time in tiny-dictator mode: objecting to every idea, listening carefully for plans to complain about, agitating me because he can’t release his own emotions. He’s trying to prescribe who’s allowed to speak Spanish, or English, and when. And crazy opposite-talking, constantly. Yesterday, upon discovering that he was having coconut-banana tostada for breakfast instead of smoked salmon, he launched into a tirade directing me never to give him smoked salmon again.

For sure, it took several weeks for Martin to hit his stride last summer in Nicaragua. Nevertheless, by the end of July—I just ran through my contemporaneous posts—I was noticing improvement. Today is August 1, and Martin does not seem improved since we arrived here a month ago.

I don’t know why not. He’s constantly in saltwater, as he was last summer. He attends day camp. Although his diet isn’t great (corn, juices, way too much rice at camp, just like in Nicaragua), I stuff him with fresh local fruits and vegetables when possible. We’re doing herx water and dry brushing. (And what we are dealing with right now looks more like anxiety than the silliness I associate with detox.) We continue his Lyme- and parasite-fighting protocol, and the only pills I’ve run out of so far are HistDAO, i.e., enzymes for breaking down dietary histamines. (Had more sent to a friend, who will bring it next week when she arrives for a visit.)

Possibly some environmental factor is agitating him, like hidden mold in our rental house, or airborne allergens. The climate, flora, fauna here in Guanacaste resemble southwestern Nicaragua (fewer butterflies, though), but of course nothing is exact. We might have happened, last summer, upon a magic combination of factors, from jungle to supportive community, that cannot be replicated elsewhere. Of course, I can’t discount the simpler explanation that Martin’s current protocol is burdening his system, or that he’s just in a different place in his recovery process than a year ago. He’s always in a different place, right? This morning on Facebook, a friend with a severely affected child referred to “playing pin the tail on this donkey of a medical mystery.” That’s apt.

We keep plugging on.

Tomorrow Martin is signed up for his first-ever surf lesson.

Because why not?

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Martin versus the world. Or at least the ocean.

Otra vez, aquí estamos. Hasta Septiembre

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We are back in Central America. Alas, not in Nicaragua, el país más bonito de mi corazón. We planned to return to Nicaragua this summer, and held fast to that plan as long as we could. During June, however, the political violence reached as far south as where we stayed last year, in the Department of Rivas; north of Rivas city, a young man was killed defending a tranque against pro-government forces. Shortly thereafter, the director of Martin’s day camp (and one of Martin’s Nicaragua-based cheerleaders-in-chief) notified me that they would likely not have enough kids to run camp this year. At that point, we canceled our summer house rental, sent part of the deposit to a trusted friend in Rivas to distribute among local families most in need, and hastily assembled a new summer.

This is of course an autism-recovery blog, not a political blog, and I am no expert on Central American politics. I will limit my comments about the Nicaraguan situation to this: Daniel Ortega is unleashing this violence upon the very families who, a generation ago, fought for the right to elect him. The people of Nicaragua don’t deserve these troubles. Please look for ways to support Nicaraguan self-determination.

So Martin and I find ourselves on the other side of a border, in Guanacaste, Costa Rica (with hopes to cross, later, into Nicaragua at Peñas Blancas and visit our friends there). You may recall that Costa Rica was where I first noticed how well Martin does in the Central American environment. Even as we mourn our time in Nicaragua, I am grateful to be here: grateful that we were able to rent a house on short notice, grateful that I found a community with a day camp, grateful for daily saltwater swims and abundant  sunshine. This area is populated by gringos here temporarily, chasing the pura vida, and I don’t have much hope of finding the same kind of lasting connections we made in Nicaragua, where the gringos tend to be long-term ex-pat residents. No worries, though. Everything else is grand.

Martin started day camp last week. I had corresponded in advance with the camp director about Martin’s food and environmental allergies. (When you’re talking about Central American activities, “allergic to horses” becomes surprisingly relevant.) The tougher conversation, about Martin’s real challenges, I left to have in-person; giving advance notice, in writing, of Martin’s social and attention deficits tends to create an image that can be hard to shake, even after Martin himself appears. I remember still the remark of a German relative, years ago, when she first met Martin: “Als ich das Wort gehört habe—Autismus—habe ich mir was ganz anders vorgestellt”: “When I heard that word—autism—I imagined something else entirely.” We no longer have the A word to fear, but preconceptions nonetheless pose dangers. The first day of camp, I stole the director for a few minutes. I said that Martin had some previous language delays, and because he is still catching up, he struggles with social interactions. He wouldn’t give them any trouble about participating, I explained, but we do worry about bullying and hope they will keep an eye out for that.

“That will be no problem,” the director replied. “We’ve had all kinds of kids at camp. Even kids with autism.”

“Oh!” I said. “If you’ve had kids with autism, you can certainly handle Martin. It’s nothing like that.”

Martin Out of Paradise

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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.

Martin in Paradise

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For the last ten days we’ve been vacationing in Costa Rica. The “we” comprised me, Adrian, Martin, my mother and stepfather, my two older brothers, Adrian’s mother, and Adrian’s brother. Nine people. Nine people together in a house on the beach, off the beaten path.

I had trouble finding organic fruits and vegetables, and I suspect the papaya we ate may have been genetically modified. I used olive oil that was partially refined. The cookware was aluminum. Martin had seafood daily, mercury be damned. He ate way too much rice, probably too much fruit, and even homemade fruit juice. I found some locally made treats with oats, nuts, and raw agave, but I couldn’t get any intel on whether the oats were gluten-free. I gave Martin the treats anyway.

We ran out of several supplements, enzymes, and antimicrobials (poor planning on my part), including mucuna, serrapeptase, MitoSpectra, Nose & Lungs, cumanda, and Boluoke.

We had no set schedule, so Martin never knew what we might throw at him in a day. We didn’t do his vision exercises. His glasses sat abandoned, unworn.

We pushed his limits, sometimes over his protests. We took him zip-lining and horseback riding, made him a passenger on ATV’s and jet skis, insisted on swim lessons.

He had two allergic reactions, one to a horse that left his face bumpy and itchy, and one to an unidentified food irritant (restaurant) that caused a rash to spread from the corners of his mouth down his neck.

In the face of these shortcomings and stress, Martin—soared. Martin’s had trouble sleeping these last couple months. In Costa Rica, he volunteered bedtime by 7:30 pm and slept 10 or 11 hours unbroken. His iPad requests, which at home are a near-constant whine, decreased markedly. On our few prior visits to beaches (I’m not a fan), Martin has refused to let the salt water rise above his knees. After a week in Costa Rica, he bobbed neck-deep as the ocean waves tossed him to and fro. Daily, he refused to leave the beach.

He conversed with his uncles and answered strangers’ questions. He used new expressions.

Overcoming recent food-choice rigidity, he rediscovered tropical fruits and ate mango, pineapple, and papaya with abandon.

Because we were without North American television, Martin could not watch his fixation of late, Mickey Mouse Clubhouse. He managed without complaint. Instead, he drew pictures.

One afternoon, Martin was at a local bar/café with Adrian, my brother Eddie, and my brother-in-law, Pancho. The establishment was about 300 yards from our house, past a swim pool, an exercise plot, and a several haciendas. I was in the house showering when Martin entered the bathroom and said casually, “Hi, Mommy. I came home alone.” I told him to scram—after all, I was showering—and his statement didn’t quite register until I was toweled and dressed and found a text message from Adrian: “Martin is coming home. Make sure the door is unlocked?” Adrian had indeed authorized Martin to walk home unaccompanied, and Martin had achieved the feat, without getting lost or wandering off.

Just sayin’, I would not have let Martin walk home alone. But Adrian did, and out of the decision came some measure of independence.

I’m not saying that 10 days in Costa Rica brought a miraculously fully recovered Martin. Not by a long shot. He was too distracted to get the full benefit of those swim lessons. The pictures he drew were all of marching bands or orchestras. (He used to draw only pictures of The Beatles. Now he draws only marching bands and orchestras.) He engaged in a lot of oral stimming: “mouth noises,” I call the sucking-and-clucking sound he makes. He showed virtually no interest in the other kids scampering and riding bicycles in the neighborhood. Our last full day in Costa Rica was a bad day; sneezing and maybe teetering on sickness, he requested another round of zip-lining but then melted down and refused to participate. He repeated himself, nervously. He spaced out.

Still, overall, Costa Rica brought us a behaviorally improved Martin. Indisputably.

I don’t know what made the difference. Sea water? Clean air? Reduced EMF’s and cellular radiation? Extended family? Time to be a kid?

We’re on the plane now, headed home to the New York metropolitan area. (You know how I love to airplane-blog.) Martin just told me he wants to watch Mickey’s Clubhouse, when it’s on at home. I find myself questioning whether full and true recovery might require some bolder step, like removal from urban or suburban life.

Would I have that in me? Would Adrian?