Tag Archives: zelinsky

It Used to Be Fear

Posted on by findingmykid
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Over Labor Day weekend we visited Dr. Zelinsky, near Chicago. It was an easy day trip. Martin and I caught a 10:30 a.m. flight from LaGuardia to O’Hare. My friend Chris picked us up at O’Hare, we had a delicious brunch at Prairie Grass Café, Chris worked nearby while Martin and I were in Dr. Zelinsky’s office, and then we stopped at a playground on our way back to O’Hare.

Dr. Zelinsky had many perceptive observations about Martin’s development and brain functioning; she always does. Enough said. This post isn’t about Dr. Zelinsky. It’s about the playground.

The playground was random, selected by me and Chris from Google Maps as we drove. It turned out to be lovely, tucked in a wooded suburban acre. While Chris looked for the parking area, Martin and I walked a path to the swings and slides. He asked whether other kids would be at the playground.

“I don’t know,” I replied. “Maybe.”

Martin has long avoided kids he doesn’t know, especially in contexts like the playground, which can be overwhelming. Playground kids clump and run together, and Martin can’t keep up. I assumed he was worried and wanted the playground to himself.

One girl, it turned out, was there, sitting on a swing.

Martin investigated some climbing equipment. After just a moment, he walked over and sat on the swing next to the girl.

“Hi there,” he said. “I’m Martin and I’m seven years old. How old are you?”

The girl was seven too. She asked Martin where he goes to school. He responded—she didn’t recognize the name, of course, since we were in Chicago and Martin goes to school in New York—and then he asked where she goes to school.

That’s right. A reciprocal question.

“The Ryan School,” the girl answered. Or something like that. It was hard to hear her.

“Where?” Martin asked, then, when she repeated and he still didn’t get it, “Where?”

The girl’s dad, who was seated on a bench near the swings, turned to me and said, “She’s got a bit of a lisp that makes her hard to understand. We’re working on it.”

It’s not you kid. It’s mine. First time anyone’s said that to me.

“He’s not going to know the school anyway,” I said. “We’re just visiting from New York.”

We shared a laugh. The kids said a few more kid things, and then some sort of who-can-swing-higher competition ensued. Or at least Martin treated it as a competition.

Around that point, I realized something: Martin hadn’t asked whether any kids would be at the playground because he wanted to avoid them. He’d asked because he wanted to play with them.

The realization was confirmed the following week, when I took Martin to an indoor playscape near our home and he said, “I’m going to look for some kids to make my friends.”

The girl in Chicago eventually lost interest in Martin, and he didn’t succeed in finding any kids to make his friend at the playscape.

Nevertheless, he was seeking kids out, instead of avoiding them. That’s progress.

Progress.

Martin at the playscape, looking for friends.

Martin at the playscape, looking for friends.

 

Okay, this wasn't taken at any location described in this post. But I couldn't resist! It's Martin and a buddy at an amusement park.

Okay, this wasn’t taken at any location described in this post. But I couldn’t resist! It’s Martin and a buddy at an amusement park.

Year 2014 in Review

Posted on by findingmykid
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A year ago, I woke up on New Year’s morning with the conviction that 2014 would be a banner year in Martin’s recovery.

It’s time for a look back at 2014.

Martin and a boy he played with on the beach, Florida Keys, New Year's 2014.

Martin and a boy he played with on the beach, Florida Keys, New Year’s 2014.

We started several interventions to which, for a change, Martin plainly seemed to respond. (I write “for a change” because these were some of the few times when I was able to isolate particular interventions that helped. More often, it’s just something in “the whole package.”) When I posted in late July about five treatments that were “working now,” I also posted my frustration in jumping to conclusions based on initial positive results. I’m going to report now that at least two of those five “what’s working now” treatments, six months later, still are kicking autism’s butt: camel milk and Candex. Martin’s language took off immediately following the introduction of camel milk, and it hasn’t stopped since. Did you Tuesday’s post about the conversationalist? How cool was that? As for the Candex, Martin still has yeast flares. (I’ve come to accept that candida overgrowth may be a battle we fight for many years. Therein may lie our war.) Since we started using Candex, however, those flares have been milder and of shorter duration. They’ve been manageable.

Martin with his cousin Mandy in the snow, February 2014.

Martin with his cousin Mandy in the snow, February 2014.

And the other three “working now” treatments, the GAPS diet, Enhansa™, and MitoSpectra? We are still on all three. I modified the GAPS diet by adding quinoa and reducing Martin’s meat consumption to one meal per day. (The reduction of meat isn’t particularly a “modification,” I suppose, though it felt that way.) I think Martin’s gut health is better than ever, though I wish he weren’t still prone to yeast flares. As to Enhansa, Martin’s chronic inflammation appears to have eased; I can’t say whether the Enhansa is responsible, or general improvement in gut health. I may stop the Enhansa, as an experiment, and see what happens. I plan to keep the MitoSpectra, for the time being. I reduced Martin’s dosage when a blood test revealed high levels of carnatine, and I feel like I could be doing more for his mitochondrial functioning (hence the quinoa). I’m keeping the MitoSpectra because I haven’t yet discovered that next best thing.

Martin at Planting Fields Arboretum State Historic Park, Oyster Bay, New York, Spring 2014.

Martin at Planting Fields Arboretum State Historic Park, Oyster Bay, New York, Spring 2014.

In the second half of the year, after my “What’s Working Now” post, we started vision(-ish) therapy with Dr. Deborah Zelinsky; Heilkunst homeopathy with Rudi Verspoor; and a weekly facilitated social group with local kids. So far, I give all three a big thumbs up. We are in another period when “things are going well” but I’m not totally sure why. I may be observing a slight uptick in Martin’s eye contact and attention span. I’ll give that development to Dr. Zelinsky. Martin had a fever and apparent healing reaction over the Christmas break. That goes to the Heilkunst. As for the social group, that’s a confidence-builder. Martin is happy to have friends of his own. Last week, for the first time, he asked to bring a game that everyone could play—the lovely wildlife bingo set his uncle Eddie gave him.

Martin rock climbing at a birthday party, July 2014.

Martin rock climbing at a birthday party, July 2014.

Did I make mistakes in 2014? Of course I did. I think the straight-up GAPS diet had too few carbs to meet Martin’s mitochondrial needs. I know there is debate on this point. For my child, I should have known; way back in 2011, when we first went grain-free, Martin showed signs of mild ketoacidosis, and we had to add a few gluten-free grains back in. This time around, I should have guessed that he would need more carbs than GAPS allows.

Martin with his uncle Rudy, Strasbourg, France, August 2014.

Martin with his uncle Rudy, Strasbourg, France, August 2014.

I rushed treatments. The mother who launched our biomedical journey cautioned me against the urge to do everything at once. Nevertheless, when I find an intervention that excites me, I might move too quickly. Even today, four years into Martin’s recovery, I’m prone to that amateur mistake. Other times, I just fail to pay attention and mistakenly start two treatments together. C’est la vie.

Martin looking over St. Bartholomá church, on the Königsee, Berchtesgadan, Germany, August 2014.

Martin looking over St. Bartholomá church, on the Königsee, Berchtesgadan, Germany, August 2014.

Despite my tendency to rush, though, I think honestly I can peg 2014 as the year when I internalized “marathon not sprint.” Sure, for years now I’ve parroted the mantra. Autism recovery is a marathon, not a sprint. Autism recovery is a marathon, not a sprint. But what kind of marathon did I really envision? In my “banner year” post, last January, I wrote, “I now understand ‘the long haul,’” and “I no longer fear that some mythical window will close while Martin is five . . ., or seven, or any age.” Even after I wrote that, however, the notions took some time to sink in. It wasn’t until November, when I wrote the “Journey” post, that I finally abandoned the idea that this process will have an end date. Striving for better health may well be a perennial task, one that Martin needs to continue even after he becomes responsible for his own care. Autism recovery is not a sprint. It isn’t even a marathon. Autism recovery is a lifestyle.

Martin hiking in the Adirondack mountains, near the Great Sacandaga Lake, August 2014.

Martin hiking in the Adirondack mountains, near the Great Sacandaga Lake, August 2014.

Behavior-wise, in 2014 Martin took new interest in socializing with other kids. Although he still isolates himself when he becomes overwhelmed, for the most part he wants to be near his friends, even if just to play side-by-side on iPads. Late in the year, Martin also (finally) made progress on nighttime potty training. He wakes now when he needs the potty, and yells for me. “Thanks, kid.” Language-wise, in 2014—well, wow. Martin has been asking “why” questions (like, gazillions of why questions) for a long time now; in 2014, he started answering them, coherently. He’s become conversational, staying on point for multiple exchanges. He can talk on the phone. This afternoon he’s going to call Uncle Eddie and wish him happy birthday! And the perseveration has decreased. Did I mention that the perseveration has decreased? Yeah, the perseveration has decreased. Such a relief.

Martin, on the left, with his cousin Luke, in the Florida Keys, New Year's 2015.

Martin, on the left, with his cousin Luke, in the Florida Keys, New Year’s 2015.

I am pleased to conclude that 2014 was a banner year in Martin’s recovery. All signs point to significant improvement in health, and corresponding changes in behavior.

May it be one banner year among many.

 

TWIFU

Posted on by findingmykid
10

TIFU. Know what it means? Click here (at your own peril) if you don’t.

Now take the T (“today”) and substitute TW (“this week”), because the events I’m about to describe happened on Monday.

In yesterday’s post I talked about starting Heilkunst. Martin’s first two clears arrived last week. I waited to start them, because I hadn’t had time to peruse the instructions for the clears, or to revise Martin’s daily supplementation sheets to include the clears and the accompanying drainage formula. Monday I had the time, got everything prepared, and decided to start Martin’s first clear.

By Monday we also had been waiting more than a week, since our visit to Dr. Zelinsky, for Martin’s new glasses to arrive. Martin, with characteristic precision and fierceness, had said he wanted his glasses to arrive “on Saturday, November 1 and no other day!” They didn’t. So when the glasses finally appeared on Monday, November 3, I was eager to present them to Martin and let him start wearing them.

Here’s what happened after the school bus dropped Martin off Monday afternoon:

3:50 pm. Martin put on glasses for the first time, agreed to wear them generally.

3:50-4:20 pm. Martin played, read, and drew pictures, wearing glasses. He took his afternoon supplements.

4:20-6:20 pm. We went to social-skills group. Martin wore glasses. On the way, he drank his camel milk. The group leader reported that Martin had a great session and participated well.

6:30 pm. Driving home from social-skills group, we pulled into Stop & Shop for Martin to pick out his own Lärabar®. Even though we have Lärabars at home, Martin takes great pleasure in going to the store and choosing one. (No doubt he also likes that Stop & Shop stocks “cherry pie” and “pecan pie” flavors, which I don’t keep at home.) Martin, glasses on, seemed energized, if not decisive. He ran back and forth between the standard Lärabar display and a temporary rack of “seasonal” flavors like “pumpkin pie” and “gingerbread.”

7:00-7:30 pm. Martin sat at the dinner table. His dinner was bone broth and pasta with squash and cauliflower. While Martin sipped his broth, I assembled and administered his evening supplements, including for the first time the Heilkunst drainage drop and a Heilkunst clear. He took them without issue.

7:30-7:45 pm. Although Martin loves pasta, after just a bite or two he pushed the pasta bowl aside and said he wanted to finish only his soup, which he did. He also requested dessert and ate a small piece of chocolate. Then he said he didn’t want to wear his glasses anymore, didn’t want to take a bath, and was going to get ready for bed.

8:00 pm. In his room, teeth brushed, pajama-clad, without glasses, Martin scrunched himself into froggy position on the floor and said his belly hurt. Did he need to return to the potty? I asked. Could I get him a drink of water? Would he like more soup? No, no, no, Martin answered. He climbed into bed and asked me to read him a story.

8:20 pm. Martin was in bed, lights out. From the kitchen, I heard him calling me. I walked down the hall to his doorway. “Mommy, my tummy hurts,” he said and smacked his lips. I realized what probably was coming and started toward his bed. Too late. Within seconds, Martin, his pillow, his sheets and blanket, several stuffed animals, and a small part of the mattress were splashed with vomit. In the mess I saw several undigested supplements, along with the few bits of pasta he’d eaten.

Martin almost never pukes. I think it’s happened maybe two or three times in his life.

And I didn’t know what caused it Monday. That was the TWIFU. I know that I should separate new supplements, treatments, therapies, and even vitamins by at least two-to-three days, in order to pinpoint the cause of any reactions. I know that. What did I do Monday? Without a second thought, I let Martin wear new glasses for several hours and started the Heilkunst. When he reacted, when he puked all over poor Curious George, I couldn’t isolate the cause. Was wearing glasses too much stimulation for Martin’s brain stem? Did he get dizzy? Or did the first Heilkunst clear cause his body to reject something? How could I tell?

I’ve been working at Martin’s recovery for four years. You’d think by now I’d have a clue.

P.S. Because of my carelessness, I had to undertake some additional investigation. By the time I finished cleaning Martin, washing linens, and doing my best with the mattress and pillow, it was late evening. (Admittedly, I would have been awake anyway. The Rangers went to a shoot-out.) I didn’t want to bother Dr. Zelinsky or Rudi Verspoor at that hour. Instead, I texted with another Dr. Z mom I know and posted an inquiry in a Heilkunst group on-line, which generated immediate responses. By the time I went to bed, I was 90% confident that the vomiting was unrelated to the new glasses and instead was a proper reaction to the first clear, which was a clear for the coxsackie virus Martin had two years ago. I was even more confident when Martin woke the next morning with a slight rash on his hands, a much lighter version of how he’d looked during the virus. Still, I can’t be 99.99% confident, and that bothers me.

Pill Pushers

Posted on by findingmykid
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I just spoke with another autism mom. She was distraught because the neurologist who performed her son’s MRI had called to say he found evidence of possible/potential seizure activity. She was confused because the neurologist told her to give her son anti-seizure medication, regardless of the side effects and the uncertainty whether seizure activity is even occurring. She was angry because she felt like the neurologist just wanted to get off the phone and had no interest in addressing her questions.

Why are doctors pushing so much medication?

On his latest neurodevelopmental psychological exam, Martin tested strong, academically. Although he has just started first grade, he is functioning at a second-grade level. But, the mainstream doctor who oversaw the exam stressed, when Martin gets to third grade, where the curriculum requires inferential reasoning, he might fall behind; because he can’t attend well, he can’t form inferences, either.

We know attention remains a problem for Martin, Adrian and I assured the doctor. What can we do to address it?

“Medicate him,” the doctor replied.

Medicate him?

“Medication might really get him over the hump when it comes to attention,” the doctor said.

We’re trying some other approaches right now, I said. We’re excited to be starting treatment with Dr. Zelinsky, using a sensory approach to retraining the brainstem. And Martin’s autism symptoms, including attention, tend to get better in spurts, as his body heals. Maybe by third grade we’ll have attention up to par.

“Sometimes those types of treatments can help,” the doctor said. “Still, we should start medicating sooner, rather than later. Martin’s a tricky case. It’s not clear whether he will respond better to a stimulant, a depressant, or some combination of both. We’ll have to fiddle with dosages and drug types to see what works best. If we start right now, then by third grade we’ll have it figured out.”

Adrian and I told the doctor we would like to hold off and give ourselves time to think about the medication option. Then we thanked the doctor for his time and promised to keep him updated.

This particular doctor expressed surprise at Martin’s progress since he was last evaluated, two years ago. I explained what we had done to provoke the progress, including biomed, homotoxicology, and HANDLE therapy. The fact that Martin has come so far using those approaches did not seem to affect, at all, the doctor’s opinion that we should medicate. I am not necessarily against the medication option forever, and I certainly don’t judge parents who decide to medicate their children before trying what I consider more natural treatments. That being said, I am sick of mainstream doctors trying to push medication on us at every turn. Medicate, medicate, medicate.

To the fellow autism mom who called me this afternoon, I said:

“Make a list of your questions. Demand an appointment. Bring your husband. Request copies of the MRI results. Send them to your biomed doctor, your ophthalmologist, any of your specialists who know how to read MRI’s. Get all your questions answered. Then decide if medication is the right choice.”

Because sometimes medication is the right choice. And often it isn’t.

So Here’s Something New We’re Going to Try

Posted on by findingmykid
13

Martin retains significant sensory processing issues. Distant background noises distract him; several times a day, he asks, “Mommy, do you hear a helicopter?” or “Mommy, do you hear that airplane?”, and I do hear the aircraft, but only after I stop my other activities and listen carefully. His eyes, on the other hand, never seem to chase sounds; he hears but doesn’t look. Nor do his eyes guide his hands, at least not well. If I lob a ball to him, the ball bounces off his chest before he brings his arms together to catch, even when his eyes appear to be focused on me or to track the ball. And he’s clumsy. Very clumsy, which I think results from the double-whammy of mitochondrial disorder and sensory processing challenges.

I believe Martin would benefit from audio and/or vision therapy. His HANDLE therapist has been recommending for more than a year that I pursue these therapies, and although I trust her intuition, the time has never seemed quite right until this summer. This summer, after Martin’s language made some real progress, I thought: Well, language is finally getting close, and yet he still has the attention span of a fruit fly. If Martin is going to make significant progress in socializing, or moving toward mainstream school, we’ve got to find a way to make him attend. Getting his senses to cooperate could be a key component. I mean, how can he concentrate if any random stimulus distracts him, or if messages get lost between his eyes and his hands?

I started searching for the right therapist. I did not find him/her. The problem, from my point of view, was that the service providers offered either vision therapy (addressing issues like tracking or overreliance on peripheral vision) or audio therapy (addressing issues like sound distortion and sensitivity). Martin, on the other hand, seems to need help connecting his vision, hearing, and fine motor skills. Integrating.

Six weeks ago I paid a visit to a Central New Jersey mom-friend, whom I’ll call Lakshmi. Lakshmi’s son, Partha, is six years old like Martin, and I’ve known him since he was three, not long after he suffered a regression and lost all language following a vaccination. Partha, I would say, is 90% recovered. Strangers who meet him don’t realize he used to have autism, and he is completing first grade at a mainstream private school with no accommodation other than extra help in handwriting and the speed of his work. Lakshmi has worked miracles repairing the damage Partha suffered.

I was lamenting my fruitless attempts to find a therapy that I believed would address Martin’s integration as much as his vision or hearing. Lakshmi knew just the thing, she said, and described excitedly the improvements in Partha’s attention once they started working with Dr. Deborah Zelinsky, an optometrist who specializes in neural aspects of visual processing. As Lakshmi described the exercises Dr. Zelinsky had done with Partha, and what she had prescribed, I realized I might finally have found the “vision+” therapy I was hunting.

The next day or two I read more about Dr. Zelinsky’s work, including her development of the “Z-Bell test” to measure mismatches between visual and auditory processing, i.e., to figure out why a child might be seeing well and hearing well, but not seeing and hearing well together. Then I phoned and made an initial appointment for Martin. We had to wait a while. Now the appointment is getting close. In less than two weeks, Martin and I will travel to Chicago to meet with Dr. Zelinsky.

I am guardedly optimistic. At some point, once the diet is what it should be and an appropriate educational setting is found and the caregiver takes a few deep breaths, the process of autism recovery becomes a slow assembly line of trying this and trying that to see what sticks.

Soon I’ll find out whether Dr. Zelinsky’s visual processing therapy sticks.