The Professor Ponders Our Mysterious Medical System

My 89-year-old mother is in the hospital again, which means I have doctors on my mind, and that’s never good.  Some of the most frustrating experiences of my life have involved talking to doctors or, more to the point, getting them to listen.

As a child I lived in five different states, so I’ve seen a variety of GPs and pediatricians over the years.  I remember my mother’s utter disgust when one doc found a cotton ball stuck deep in my ear canal that she swore he’d left there the previous time he’d done a culture. No wonder those antibiotics he’d prescribed weren’t having any effect.

Then there was the time I was seventeen and came in with a rash all over my face. It was February, I’d been out sick the entire previous week with a bad sore throat (probably strep).  The doctor took one look, proclaimed it poison ivy, and prescribed some kind of cream.  Only I’d never had poison ivy before — or since — despite trampling through the woods on a fairly frequent basis.  Poison ivy seems to be one of the few things I’m not allergic to.  So, how the heck did I get poison ivy in the middle of February without ever leaving the house the previous week?  Oh, you can catch it from fireplace smoke, he says.  Well, yes, if you happen to be exceptionally sensitive to it you might, but me, who has never had poison ivy under any circumstances. I don’t think so.

Another doctor talked my mother into giving me a mumps shot when I was 10 or 11; only he didn’t tell her it was a live virus and it would shed. We went swimming in a friend’s pool that day, and her son came down with a nasty case of mumps.  I was sick the next week too, but it never occurred to my mother that I might have come down with the illness I had just been vaccinated against.

My current primary care physician is something of a pulmonary specialist (remember those allergies? They come with asthma), but he’s pretty clueless about a lot of other things. He’s told me that he doesn’t worry about hypoglycemia because at least you’re not going to be diabetic. Um, no . . . actually, the truth is hypoglycemics are the most likely people to develop diabetes. He also thinks that if you check the level of TSH in the blood that’s the “gold standard” for thyroid issues.  Um… not so much.  Plenty of people have had thyroid issues that respond to treatment whose TSH levels fell well within ranges that were considered “normal” — oh, and no one seems to agree on what’s “normal” in the first place.

My mom’s in the hospital because she blacked a couple of times. The cardiologist who saw my mother in the hospital noticed an erratic heartbeat and suggested a pacemaker. My mother who turns 90 in a month has had a standing agreement for the past decade with her seven children that she will not be resuscitated if there’s an “event.” Her mind has been wandering the last couple of years to the point where she can’t remember what just happened. She’ll surprise us from time to time — just yesterday she came up with my nephew’s wife’s name when she’d only met her once — but more typically she’s not sure where my brother lives, even though he’s lived in her house for over 20 years, or what my sister-in-law told her that morning.  The idea of a pacemaker doesn’t sit well, but we capitulated since it might stop her from blacking out. Why is it that we can hear their arguments, but they rarely hear ours?

I had one of the most frustrating conversations of my life (and as I’ve been separated for the past two and a half years, you know I’m no stranger to frustrating conversations) last year with one of the doctors in my pediatrician’s office.  We have a religious exemption from vaccination and the doc started out saying that she respected my beliefs, but I would need to sign this form saying that I have been informed of the risks associated with not vaccinating. I told her that I would not sign the form as is; I would be altering it to say that I was also aware of the risks of vaccinating my children. She got all defensive about that, so I mentioned the fact that we’re adding to the vaccination schedule all the time, but children are getting sicker and sicker. She agreed with me(!) and said that they were not particularly comfortable with the vaccination schedule as published and would work with parents to take as much time as they needed to get fully vaccinated. BUT, she said that she wasn’t comfortable with someone not vaccinating at all, that she regarded some vaccines as important.  I told her that the State of New York doesn’t give me the option of picking and choosing “important” vaccines.  If I let go of my religious exemption, I would have to give my children ALL the vaccines on the schedule, including chicken pox, mumps, rubella and hepatitis B (a blood-borne illness with the same transmission paths as AIDS). I also could not choose to do it slowly as the schools would require “fully-vaccinated” status pretty much immediately for attendance.  She was proposing to inject my children with ALL those vaccines in a matter of a few months? Over my dead body. So then she tells me, that she’s not “comfortable” with not vaccinating at all and we should go elsewhere for our health care.  This woman AGREED that vaccinations were likely playing a role in the ridiculously high rates of chronic illness in today’s children, and STILL defended them so strongly that she was kicking a family out of the practice because they took that knowledge to its logical conclusion. Someone please tell me how that makes sense.

After reading and editing a number of chapters in The Thinking Mom’s Revolution, I couldn’t help being struck by a common theme:  the cluelessness of the average pediatrician. Parent after parent reports being “pooh-poohed” by the pediatrician when they voiced their concerns.  My own kids’ pediatrician was much more concerned with the fact that my son was still nursing at night at the age of 3 months than the fact that he never slept more than an hour at a time at the age of 4 months due to a constantly stuffy nose.  As far as she was concerned, kids don’t get food sensitivities at that age, and, even if they did, it wouldn’t present that way. And yet, when I took out dairy, and then wheat, his sleep got much better! Fortunately or unfortunately, this pattern was repeated a number of times with respect to my son’s health. The lesson I took away? You’re on your own, mama!

Only I wasn’t. What I found was that there are parents out there who were just as frustrated as I with the mainstream medical advice they were getting regarding their children. I found people who pointed me to books that actually helped me find solutions. They gave me suggestions that helped my son talk. My son was apraxic. He was two years old and had very few things that I hesitate to even call “word approximations.” Within a couple of weeks of starting him on EPA/DHA, enzymes, and probiotics, he was speaking in sentences. The lesson I took away? Talk to parents. Someone has been through what you’re going through and figured it out. Listen to each other in the way we’d like our doctors to listen. Sure you’ll get some bad information from time to time, but you can usually tell how knowledgeable the person is that you’re talking to, and you’ll be amazed at how much good information you’ll get. Parents know their children better than anyone and they know what’s been working and what hasn’t. For that reason, a large part of the “Revolution” in my mind can be expressed by the statement: “listen to the parents!” Viva la Revolution!