Good Medical Care

Without any real statistics to show, I am going to assert that most of us in the biomed community have MAPS doctors for our kids. “MAPS” stands for Medical Academy of Pediatric Special Needs and is the successor term to DAN!, or Defeat Autism Now! MAPS doctors are trained and certified in the treatment of chronic conditions like autism. They help our children with the process of recovering from autism/autoimmune disorder, and with associated issues like epilepsy or food allergies. They’re kind of like general practitioners for children affected by autism.

Then we have other doctors, the host of professionals who accompany childhood, plus (because autism is the symptoms of sickness) assorted specialists. Neurologists, geneticists, ophthalmologists, audiologists, endocrinologists, allergists.

One challenge prevalent for biomed families is finding “other doctors” who respect their MAPS doctors’ efforts. You can imagine the potential conflicts. When we first started biomed, for example, Martin had constant skin rashes, so itchy that he would scratch his legs bloody. We took him to a dermatologist, who diagnosed “sensitive skin” and suggested using Cetaphil “gentle” cleansing and moisturizing products. Our MAPS doctor, recognizing candida overgrowth, asked us to substitute natural products for Cetaphil and work on balancing gut flora to bring yeast under control. (We went with the MAPS suggestion, healing Martin from inside.)

The elephant in a room occupied by both MAPS and non-MAPS physicians is vaccines. MAPS doctors may urge caution when it comes to vaccinating, especially for kids with a history of reactions to vaccines, while non-MAPS doctors may push vaccinations “on schedule” for all kids. Some pediatricians won’t even accept patients whose families feel they cannot vaccinate.

So there are challenges, navigating the biomed path accompanied by non-MAPS healthcare professionals.

When we moved to the suburbs last year, I took the opportunity to find a Martin new pediatrician and dentist. Our practitioners in the City were adequate but traditional. The dentist made me sign forms stating that I had “refused” routine X-rays against her recommendations, and once she applied fluoride to Martin’s teeth even though I had stated at the beginning of our relationship that I didn’t want any fluoride, ever. Our pediatrician was perhaps more conscientious; I had a positive experience when one of her partners took an interest in our biomed approach, and the practice gave us a vaccination exemption of indefinite duration after Martin reacted poorly to the H1N1 shot. Despite those perks, however, the doctors weren’t worth venturing back to the City.

I found a new pediatrician through conversations with other biomed moms. This doctor, though not a MAPS doctor, is knowledgeable about autism recovery. She stocks her office with papers like “The Autism-Gut Connection” and “SIBO Symptoms and Treatments.” I believe she can be a second set of eyes on our biomed protocol, which is a good thing.

The dentist I found on-line. I searched for dentists who have experience working with special-needs kids, and then I followed up with phone calls about whether the doctor minds if we opt out of fluoride treatments. Martin’s first check-up there, six months ago, took place on a weekday morning, when few kids were present. The hygienist wasn’t great with him. When Martin became upset, she tried being noisy and distracting. I had to stop her and explain that, with Martin, the best approach is quiet explanation of what is happening. We were more successful with the rest of the visit. The dentist was able to get a good look at Martin’s teeth despite his protests, and no one gave me any trouble about fluoride.

Unfortunately, both the new pediatrician and the new dentist are far from our home. Last week, as I drove more than 45 minutes for Martin’s next check-up, I questioned whether the dentist was worth the fuss. As Martin’s appointment time passed, and we were still stuck in morning traffic, I thought, No more. This is the last visit to this dentist. Surely I can find someone in our own town who doesn’t push fluoride and is good with special needs.

When we finally arrived, the office was sleepy, with only one other patient waiting. This time I told the hygienist (a different one than last time) up front that Martin responds best to calm words. She understood immediately. When Martin declared that we would get a check-up but would not lie down, the hygienist responded, “Of course not. Here, I will just recline the chair a little bit so you can see the television on the ceiling, if you want.” Martin went for that.

We had a different dentist, too, a man. He began by remarking that he saw on our information card that Martin follows the GAPS diet, and asking how that was working for us. (A dentist! Asking how GAPS is working for us!) I told him, in general terms because Martin was in earshot, about our experience. The dentist responded, “It’s remarkable, isn’t it? My friend with MS made similar dietary changes, and his symptoms have really responded.” Then the hygienist said, “I know someone who has been able to stop taking fibromyalgia medication since she went on a diet like that.” Then both the dentist and the hygienist started discussing their own emphasis on fresh, whole, organic foods.

Martin, meanwhile, behaved like a champion. He let the dentist recline his chair a little more and complete a full examination plus cleaning. He interrupted the procedure only to point to the ceiling television and say, “That’s Nick Jr.!”

When the dentist was finished with Martin, he said, “Martin’s teeth look great. Not having refined sugar is obviously helpful, and you’re doing a solid job with brushing and flossing. As to the fluoride, substituting xylitol is a good choice. More and more of our parents are moving that direction.”

This dentist gives out balloons. Martin requested a yellow balloon.

I, now oblivious to the nearly hour-long drive that had aggravated me, reported to the front desk to schedule our next appointment.

I don’t mind questioning or challenges regarding Martin’s care, as long as the questioner/challenger acts with an open mind, has a stake in Martin’s well-being, and isn’t just playing Devil’s advocate.

But at the same time, it is hard to overstate the relief I feel when everyone is on the same page.

[Note: I know biomed families have mixed feelings about xylitol. I will blog about that at a later date.]

Vaccinations. I’m Ready for the Hate Mail

A couple weeks ago, a message came across my Twitter feed (@findingmykid) telling parents of kids with autism not to blame themselves, because there is no single contributor to autism—no specific action they should or should not have undertaken. I was grateful for the reminder. I do have a tendency to blame myself for Martin’s autism. We had our kitchen rebuilt, clouding the apartment with construction dust, while I was pregnant. I let myself be bullied into induced labor, leading to epidural anesthetic, Martin’s loss of oxygen, and a C-section birth. I fed Martin foods I now know to trigger digestive difficulties. When we had new window guards installed, I put him to bed thinking the paint had dried, only to open the door three hours later and find his bedroom filled with fumes.

And—I chose to have Martin vaccinated. I started out wary of vaccines, from personal experience: I myself was fully vaccinated as a child, including against the measles, and yet at age 12 I contracted measles. Even the health department visited to find out why I’d caught the contagious and life-threatening disease. That experience has always given me pause about the efficacy of vaccination. So when Martin came along, I tried to educate myself. I attended two seminars (these billed themselves as neutral but turned out to be very pro-vaccination), perused some articles, and read the Dr. Sears book. In the end, after talking with Martin’s pediatrician, I decided to vaccinate Martin, but on the Dr. Sears “alternative” schedule, which skips some shots and spreads others apart. I reviewed the ingredients of available vaccines—they were non-vegan and generally disgusting—and requested them by brand, paying especial attention to aluminum content and to the combination of vaccines (I never allowed more than two) given on a single visit.

Still, I had misgivings, long before Martin was diagnosed with autism. I was uneasy with the idea of injecting, into my son, foreign matter including metals, Guinea pig embryo cells, cow blood serum. Are human bodies really designed to deal with that kind of intrusion, particularly by injection instead of ingestion? Each time Martin received a vaccination I left the doctor’s office feeling vaguely unsettled, even if I was unsure why.

It was mother’s instinct, I now suspect.

In 1998, Andrew Wakefield published a paper in The Lancet linking the MMR vaccine to digestive disorders associated with autism. The Lancet subsequently retracted that paper, and last April the BMJ published an article aimed at discrediting Wakefield’s study. That BMJ article was widely reported, and I recall a Facebook friend—damn you, social media—posting a link to one such report, with a tagline something like, “GET OVER IT, MORONS! VACCINES DIDN’T GIVE YOUR KIDS AUTISM!!!”

Yes, it was written in all-caps, the hallmark of any thoughtful sentiment.

I try not to take umbrage to Facebook posts. This one got to me. I think it would have got to me even without Martin’s condition. Facebook does not represent the best platform for discussing controversial ideas. (For example, have Facebook snippets persuaded anyone, ever, to change a political position?) Worse, the words, written by a mother of several neurotypicals, were inconsiderately harsh for someone not facing the realities of parenting a child on the spectrum.

More than the inappropriate forum or lack of empathy, though, was my belief that this Facebook friend was too cavalier.

I’m not going to say that I think vaccines “cause” autism. I’m sure many readers are horrified enough that I acknowledge a possible link between vaccines and ASD, at all; when I told a college friend that we were undertaking autism recovery, her first question was, “Are you going to be like that actress who went crazy and said vaccines made her son get autism?”

I’m not going crazy (and neither was Jenny McCarthy), and I’m not using the word “cause.” But after reading more, and from a wider variety of sources, I think this: Children who are prone to ASD, for whatever reason, share a sensitivity to certain food triggers, to electro-magnetic fields, to chemicals and heavy metals, and in general to foreign substances. And those children, when their sensitive systems are invaded with the gunk that comprises vaccines, react with increased neuro-divergence. Vaccines, therefore, in my entirely un-scientific opinion, do more harm than good to children who already have, or may develop, autism. I also think that some of the highly touted successes of vaccines may stem, in part if not primarily, from general advances in hygiene and health care; that is, bell curves appear to show that some diseases we vaccinate against have decreased at rates similar to diseases we don’t vaccinate against, because we’ve got better at caring for ourselves.

Be warned—here comes the lawyer in me. I am not advising anyone not to vaccinate his or her child, on the spectrum or otherwise. I would never give that advice. I am not a scientist. I freely admit that I do not fully understand all of what I read on topics like the effects of vaccines, and that I do not have the background to discern among competing sources of information. Thinking more globally, I have no reason to assert that, say, malaria vaccinations in Africa or polio vaccinations in South Asian are not a good thing. I have only my own conclusions, for me, for my family.

My law-school roommate asked me if she should stop giving her (neurotypical) children the fluoride tablets their dentist recommended. I answered honestly: I don’t know. I filter Martin’s water for fluoride. I think fluoride is bad for his condition. That’s not definitive. I may not even have the best or newest information. But from what I’ve got, no fluoride for Martin.

I regret, now, that I allowed Martin to be vaccinated. I particularly regret falling prey to the 2009 H1N1 hysteria and getting Martin that vaccine, because it was so wholly unnecessary, and because that was the single instance that I can remember in which my son seemed different after the injection than before. (I don’t have any specifics for that last comment; I can only say that Martin, who was not yet diagnosed on the spectrum, seemed pretty kooky for a day or two afterwards.) After consulting with Martin’s Track Two doctor and Martin’s pediatrician’s practice, Adrian and I have decided to forego any further vaccinations, at least for the time being. I feel far less threatened by hepatitis B than by further neurological damage to our son.