Monthly Archives: October 2011

Fever Has Its Benefits. Meat I’m Not So Sure About

Posted on by findingmykid
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I’m not sure how this meat thing is working out. In addition to throwing up in the car last Friday, Martin has appeared queasy since we started giving him beef broth. He opens and closes his mouth and licks his upper lip when he eats. He’s sallow, pasty-faced with pinkish circles weighing down his eyes. My poor little guy.

It’s not so bad as all that, you may accuse. Those impressions probably stem from your prejudices against meat in his diet. The vomiting was motion sickness. Adrian drives like a maniac.

Fair enough. But we’ve spotted some less-subjective signs, too. Martin has been sleeping restlessly and waking early. This morning he materialized in our bedroom at 5:54 a.m.; usually we have to toss him like a football just to rouse him at 7:00. And the crabbiness! Dealing with Martin’s tantrums has given me a headache for the past few days.

He seems to be on the constant verge of coming down with something.

To tell the truth, I wish he would. I’m hoping for a fever. Half a dozen times daily I press a hand to his cheek, feeling for warmth. No such luck.

I want a fever because fevers help. I’ve read about several studies, and anecdotal evidence, confirming the “fever effect” in kids on the spectrum: a temperature eases the symptoms of autism. Children become suddenly more verbal and responsive, and they make better eye contact.

At the same time, kids on the spectrum rarely get fevers. Much less often than neurotypicals. In case anyone questions where I got that fact, let me explain my method: One of Martin’s health practitioners once mentioned to me that ASD kids don’t get fevers (at least, not prior to biomedical intervention or detoxification) because their systems are too weak to mount an immuno-response, which is what a fever is. I followed up on her comment with a highly scientific investigation, in which I randomly asked acquaintances whether their ASD children get fevers. Everyone I spoke to responded with some form of, “Funny that you ask! I can’t remember him ever having a fever.”

Martin never got a fever, either. All through infancy and toddlerhood, past his third birthday—nothing. He had occasional colds, and stomach bugs, but no fever. We took this as an indicator of unusually strong health. Only later, after the ASD diagnosis, did we learn that absence of illness and fever could indicate health problems. Later still did we realize that wanted Martin to get a fever, to experience the body’s way of burning off malicious intruders.

We started homotoxicology in early May. We hoped it would lead to a fever for Martin. It didn’t. At least, not for several months. Not till we’d let down our guard.

We were vacationing in rural Maine late in July when a fever, his inaugural fever, struck Martin unexpectedly. It was Saturday evening. We’d lugged Martin’s oils and drops and supplements and special foods from New York to the rental house, but nothing for a fever. No homeopathic remedies. Not even a thermometer to determine how high the mercury rose. Without much else at hand, we comforted Martin with wet cloths draped across his brow.

Around midnight the fever spiked. Martin’s skin sizzled to the touch as he flopped restlessly about the king-size bed where we’d installed him. Adrian and I hatched a panicked plan: Adrian stayed with Martin while I woke my brother Eddie, who was staying with us, to accompany me on a thermometer-seeking expedition. (We focused on finding a thermometer so that, at a minimum, we could know if Martin’s temperature rose so high we needed to visit an emergency room.) Eddie and I located a Wal-Mart on-line that, according to its webpage, stayed open 24 hours. We plugged the address into my GPS and drove almost an hour through the black New England woods, arriving just after 1:00 a.m. to find the Wal-Mart closed. Quite closed. Since midnight. Until 6:00 a.m. So we doubled back into the only town we’d passed and checked every convenience store, grocery, or gas station we could find, to no avail.

We returned to the house around 2:15 a.m., empty-handed. I found Adrian awake and vigilant, watching over a sleeping Martin. The fever had diminished. I climbed into bed with them and dozed off and on until Martin woke around 7:30 Sunday morning, still feverish, whereupon I plopped him into a lukewarm bath, over his protests.

Then I dragged Eddie back out the door, this time to a grocery with pharmacy we’d seen during the night. We bought a thermometer. The children’s fever medications, however, were unsatisfactory. Having never been called upon to use one before, I’d never read their labels or realized how many chemicals and additives they contain. At this stage of the recovery game, I could not imagine giving such a tonic to Martin.

By lucky coincidence, as I stood bemusedly in the grocery-cum-pharmacy, a friend who was joining us in Maine called en route from New York. She and her husband were at a Whole Foods Market. Did we need anything?

“Belladonna!” I replied, referencing a homeopathic antipyretic that we kept stocked at home. “Please. Belladonna.”

The new thermometer showed Martin’s fever to be higher than 102 degrees, though he felt much cooler than he had at midnight. Our friends arrived with the belladonna, two doses of which lowered Martin’s temperature to normal by late afternoon. Everyone relaxed, Eddie went kayaking, and we were back to vacationing again.

Those studies I referenced on the “fever effect” note that the behavioral improvements fade when the fever does. I can well believe that to be the case for dramatic behavioral improvements, like a non-verbal child suddenly speaking, or a nonresponsive child making eye contact. Martin experienced no such major changes while feverish; he was only fussy and miserable. Nevertheless, the fever seemed to bring on subtle advances—increased willingness to hold hands, some expansion of one- or two-word declarations into sentences—that remained with Martin after he felt better. For that reason, based solely on my family’s experience, I believe that suffering a moderate fever helps Martin’s recovery, and I keep hoping that his current queasiness, whether or not related to beef broth, might preface a rising temperature.

Now, if I were to ask my poor brother Eddie his opinion about fevers, I’m certain he’d prefer that Martin refrain from sponsoring any more midnight junkets through the middle of Maine.

The Uncertain Footing of Doubts

Posted on by findingmykid
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Before Martin was diagnosed, when we had a hunch something was wrong, we consulted a good friend who works in EI. Our friend visited Martin, and, with her professional insight, discerned immediately what Adrian and I, first-time parents lacking any significant experience with toddlers, could not identify: that Martin likely had autism. She patiently answered our questions and pointed out signs such as Martin’s sporadic eye contact, lack of functional language, and tendency to drift instead of moving with direction and purpose.

She mentioned also Martin’s difficulty descending stairs, which resulted not only from underdeveloped muscles and coordination, but from limited awareness of his surroundings. When Martin walked down stairs, he never looked at his feet to find the next stair; he stepped down and assumed the stair was there. As a result, his footing was unsure and he risked stumbling.

Once we became aware of the stair problem, we started taking notice. It’s been a constant issue in the year since our friend visited.

Martin woke nearly an hour earlier than usual this morning. He’s been doing that these past few days, since he’s been perhaps a bit ill. Waking so early leaves him tired throughout the day, and when he’s tired, he’s not at his best. (We can’t let Martin nap; doing so ruins his sleep for at least one and as many as three or four nights.) We had a bad morning. Martin cried about everything. At one point he sat at the kitchen counter flipping through a board book, oblivious to me five feet away calling, “Martin. Martin? Martin. Martin! Martin,” to no avail, until in desperation I turned to Adrian and begged, “Where is he?”

It was the kind of morning that gives me doubts—doubts about whether we’re advancing and, especially, doubts about whether we’ll ever reach our goal of making Martin indistinguishable from his neurotypical peers. On a rational level, I know how far we’ve come in the past seven months. (Last month I laid the progress out, perhaps more painstakingly than interested anyone but me, in my series of “ASD Recovery Six-Month Review” posts.) On an emotional level, at any given moment when I’m not witnessing Martin perform a new and fabulous feat, the doubts come knocking. Tenacious little suckers, those doubts.

When Martin, Adrian, and I left for church at 10:00 a.m. Martin and I had been awake four hours already, ample time for me to sink into a psychological dumpster. That’s pretty much where I was floundering as I trudged after Martin and Adrian, down the winding flights of stairs from our walk-up apartment.

Halfway down Adrian gave a psst! and motioned to Martin. Below me I saw Martin barely touching the handrail, looking steadily at his feet as he descended, finding each stair before stepping. It was the first time I’d seen him do so for a sustained period. The action wasn’t accidental. Martin was doing what people are supposed to do when they walk down stairs, what happens instinctively for the neurotypical.

Suddenly I was fine again, lifted from the psychological dumpster. I was hopeful. I was satisfied.

It’s a glorious irony, this role reversal. Martin, literally, walks with steady footing now. And I, figuratively, step with trepidation and falter often.

ASD Recovery Recipe: Almond Waffles

Posted on by findingmykid
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As I mentioned in a recent post, my mother sent a waffle maker and her recipe for grain-free waffles. Martin ate these the last time we visited my parents and loved them. So I decided to disobey my own rule against non-stick surfaces (chemicals = bad) and make Martin a waffle breakfast this morning. He’s one happy camper!

1 cup almond flour
2 tbsps honey
1 tsp vanilla
1/4 tsp salt
1/4 tsp baking soda
4 eggs (my mother recommended 4 hen eggs or 3 duck; I ended up using 4 duck eggs, because they were small, as far as duck eggs go)

I started by brushing a thin layer of coconut oil onto the waffle maker.  Next I mixed the first five ingredients well, to a pebbly consistency. Separately, I hand whisked the eggs. Finally I mixed the eggs into the other ingredients and stirred until smooth. For the first batch I poured too much batter into the waffle maker, and it overflowed. My technique improved with the second batch. You really don’t need to put in much more than 1/2-3/4 cup batter for an 8-inch waffle maker.

According to my mother, this same recipe makes good pancakes, to that would be a way to avoid the non-stick surface.

A Little Bit Here, a Little Bit There

Posted on by findingmykid
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Pretty good week, this last one. Pretty crap day, today. Martin unresponsive, lacking attention, and throwing tantrums instead of transitioning. Tired and not himself. Mildly ill, even. Yesterday he threw up in the car, a special surprise that may have been tied to his beginning to eat meat products. (Since we started with the beef broth Martin has, now and again, after meals, appeared nauseated.)

Still, even on this crap day, some skills shined. Martin’s language, when he chose to use it, was appropriate and expressive. Also, we went shopping around Union Square, and three times (that I remember) he intentionally caught the eye of a salesperson and said, “Hi!”

I think in those terms, now. What worked today? What didn’t? I scrawl my observations into the daily log I keep for Martin.

I’ve tried to apply the same thinking to Martin’s recovery, on a meta-level. Which treatment or therapy is working? Which is not as helpful? Those, however, are much tougher questions.

The truth is, I see Martin making progress (two steps forward, one step back, usually), but it can be tough to discern the individual catalyst of progress like saying hi or trying to catch a stranger’s eye. Most likely, I suppose, every such advance results from some combination of the treatments we undertake.

As I have described previously, we see Track One doctors, who as far as I can tell have evaluated Martin but done nothing to help him. Apart from Track One doctors, this is Team Martin:

Track Two doctor. Martin’s excellent Track Two physician is riding the edge of autism recovery. I like to call her “post-DAN!” because she is so on top of treatments beyond the standard DAN! protocol. She oversees every facet of Martin’s biomedical recovery.

Home consultant. I’m new to this world of autism recovery. Questions come up on a day-to-day basis. Kathleen Reily answers them. She also helps me, for example, plan Martin’s diet, find local practitioners, and research kitchen products (water filter, lead-free glass, cutting boards not treated chemically, &c.). If I’m the coach of Team Martin, Kathleen is the manager.

Homotoxicologist. A big part of recovery lies in driving toxins and pathogens from the body. Martin’s homotoxicologist, Mary Coyle, works that angle, in coordination with his Track Two doctor.

Cranio-sacral therapist. I drive Martin all the way to Pleasantville, in Westchester, to see Diane Diamond. She helps figure out what’s not functioning well in Martin’s body and makes appropriate adjustments. She once told me, based solely on putting her hands on Martin, “I’m sensing some bile blockage. He’s not processing all this fat in his diet.” A week later, a urinalysis confirmed her assessment medically.

HANDLE therapist. We visit Katie Penque every four-to-six weeks. She observes Martin, interviews me and Adrian, evaluates how Martin’s current HANDLE exercises are working, and suggests and helps us learn new exercises. Katie and Martin’s Track Two doctor are also the proponents-in-chief for the “less is more” approach to recovery.

RDI consultant. RDI incorporates a variety of games and routines, but really it is a therapy that becomes part of daily life. Allison Zevallos helps us make that happen. She makes a home visit every month or so. In between those visits, Adrian emails her videos of Martin in action, which she reviews for a weekly phone consultation with both of us.

CPSE preschool. Martin attends a top-notch preschool for children with learning delays and developmental disabilities. Adrian and I are profoundly grateful for this service, which is provided through the Department of Education’s Committee on Special Preschool Education. Martin spends more than five hours per weekday at his CPSE school.

Speech therapist. Martin’s preschool provides him a bilingual speech therapist, in accordance with his individualized education plan, or IEP. She works to unlock language skills like pronoun use and asking questions, which Martin’s ASD has hidden.

Physical therapist and occupational therapist. Martin also sees these two professionals at his preschool. Together they assist him with gross and fine motor skills, practical life lessons like watching where he’s walking and being aware of the world around him, and performing everyday tasks.

So what among all this is facilitating Martin’s progress? Adrian and I credit HANDLE therapy for helping Martin develop better control over his body and lose some of the jerkiness that characterized his earlier movement. His physical therapy likely augments HANDLE in that regard. We credit RDI with helping Martin (this is an emerging skill, coming about slowly) learn to read faces and expressions and to better pace himself with others, so that he can undertake activities like holding my hand as we walk together. His occupational therapy likely augments RDI in that regard. It’s all puzzle pieces, coming together.

I consider the biomedical process—the restricted diet, the supplements, the detoxification—to be the sticky backing that holds those puzzle pieces in place. It was the biomedical process that got Martin sleeping and rested, eased his gut pain, and reduced the lethargy that used to characterize his days. Without that foundation, the pieces would probably still jiggle around, unable to interlock fully. Without the stronger body biomedical recovery is giving us, the therapies could have less effect.

A little bit here, a little bit there. I don’t want to spend too much time figuring out what progress comes from where, so long as we’re moving in the right direction.