Carter was four years old and we were at his pediatrician for the eleventy-billionth time. Back then? We went to the doctor so much that the receptionist, both nurses, our regular pediatrician and several of the other doctors in the clinic stopped calling me “Mom” and actually learned my name.
Which brings me to a question: why do so many people call me Mom? My kids’ teachers, coaches, doctors, and anyone else who knows me only by association with my children seems to think it’s appropriate to call me Mom. My opinion? Unless I am your mom, either learn my name or call me ma’am. I don’t love ma’am, but if you really can’t learn my name, it beats the hell out of the alternative.
Sigh. My brain makes me tired, jumping the way it does from one thing to the next with very little apparent connection between topics.
Anyway, back to the pediatrician’s office where I was describing Carter’s violent vomiting episodes. “He’ll be just fine, and all of the sudden he turns gray and starts to cry,” I told her while Carter climbed and dashed around the tiny examining room. “Then, eventually, he’ll vomit, usually two or 3 times but sometimes more, and after a couple of hours he’s fine. Completely fine, like it never happened, except he’s starving. What in the world is causing this?” I asked, exasperated by the relentless rounds of vomiting.
The pediatrician, a lovely, earnest young woman who was Carter’s doctor during all of his medically chaotic early years, said, “That sounds like abdominal migraine.”
My thought process in the next few minutes went something like this: Oh, shit. Where am I again? Can I really be hearing something so ridiculous in an examining room at the pediatrics clinic associated with the second largest hospital in the state? Where did she get her MD? Probably the Institute of We-Don’t-Like-Science where they pioneer all the made-up diseases and invent the snake-oil cures. Who should I call first? Her supervisors? The state medical board? The newspapers and TV stations? Damn, and I really liked her, too!
I may have mentioned this before, but I like science. I’m not a science snob, mind you. Just because science hasn’t proved a thing doesn’t mean it isn’t real, but when I go over to see a person with the letters M and D after her name? I assume I’m going to hear about real illnesses and not made-up stuff without any empirical research behind it. Or at the very least, not diagnoses that would make the average practicing physician sniff with disdain.
The lovely and earnest pediatrician wrote Carter a referral to a gastroenterologist (his fourth; the poor kid could not, from birth until recently, get a digestive break) and we drove home. As Carter chattered away in the back seat (strapped into his carseat, his hyperactivity is limited to his mouth), I made my plans. I had to report the doctor; surely she duped someone into giving her a job in a mainstream pediatrics clinic. Then, I had to find a new pediatrician and have Carter’s records transferred right away. What a bummer! What a disappointment! What a quack!
Of course, once home, I Googled before I dailed. Turns out that the lovely and earnest young doctor wasn’t a quack after all; there is such a thing as abdominal migraine (though it’s more often called cyclical vomiting syndrome) and Carter fit every description of the condition that I read. A month later, Carter’s gastroenterologist confirmed the diagnosis.
I learned fast to say, “Carter has a condition related to migraine,” because if I said “abdominal migraine,” people looked at me the same way I looked at the pediatrician when she said those words to me. Please, if you’ve ever heard of this thing, say so in the comments? I’ve yet to meet a single person who’d heard of it before I told them.
In any case, while some people struggle with the illness for many, many years (or even their whole lives), and it can start at any time, in most cases it runs its course in early childhood as it did for Carter, and as for Carter, sufferers often go on to develop common migraine.
In Carter, cyclical vomiting syndrome had its way with him from two to not quite 7 years old. The episodes became so ordinary for all of us, so normal, that we moved through them like a synchronized swimming team. They were nothing like a stomach bug; they were more violent, faster, almost seizure like. They came on so quickly, in fact, that we kept a 1 gallon paint bucket in the backseat of our car and I never left the house without several zipper-top plastic bags in my purse.
At home, he would scream, “Red bowl! Red bowl! Red bowl!” which was our cue to spring into action. If Brian and I were both home, I would sit down with Carter while Brian brought the red bowl and a wet washcloth. If Brian was too late with the bowl, I would make sure Carter vomited on a hard survace that was easy to clean. If I was home alone, I would gather the supplies and hope I made it back before Carter barfed all over a bed or a couch or (once, famously) a dog.
Armed with the red bowl and a wet washcloth, I settled in to see Carter through the misery of the next few hours (always me; Brian would have gladly shared this duty but Carter wouldn’t hear of it). There was, of course, vomiting. Most often, he vomited 2-3 times, but during some especially bad episodes he vomited a dozen times or more. He turned an awful shade of gray except around his eyes which turned so black, he looked like he had two holes in his face. Looking at him, it was hard to believe that he wasn’t ill with a terminal disease, but had been eating and running just minutes or hours earlier.
The worst part, though, was the pain. He suffered terribly, to the point of constant screaming, with pain in his stomach (always), his legs (sometimes), and his head (only occasionally). We couldn’t give him oral medicine for pain because he would vomit it right back up. We tried using Tylenol suppositories but they didn’t reduce his suffering even a little bit. We didn’t know it then, but we were learning to do something that has become a huge part of our lives: managing at home, on our own. In the case of abdominal migraine, medicine couldn’t help. It was invaluable training for later (now) when we would (routinely) run into situations in which medicine wouldn’t help.
Carter’s condition has become fairly typical of childhood migraine in the past year or so. While common migraine is miserable any way you look at it, in Carter’s case, it’s far more manageable than abdominal migraine was. First and foremost, he is struck far, far less often. At the peak of his cyclical vomiting syndrome, he had periods during which he suffered 8-10 episodes per week. These days, he usually has one or 2 migraines per month and they’re far less violent than the old episodes were. He still vomits with every migraine, but once his stomach is empty he can take ibuprofen for the pain and it almost always stays down.
People can become accustomed to almost anything. For us, the migraine Carter had last night barely registered as a concern. Of course, Carter was unhappy and we were sympathetic and attentive to his needs, but all three of us were very matter-of-fact abouut the whole thing.
Which is why I’m writing this blog post right now. I tweeted last night about the migraine from which Carter was suffering and this morning, a friend asked if I’d blogged about it. I replied that the idea never even crossed my mind. Why in the world would I blog about something so ordinary? It seems about as interesting as dental hygiene.
As we’ve struggled to piece together the puzzle of That Which Plagues Carter, we’ve learned to let many unusual things be ordinary. If we’re going to survive, we can only have one kind of crisis, and that’s a life-or-death crisis. So if you run into me in the world or on the internet and I seem strangely undisturbed by things that, maybe, ought to be disturbing? Just know that I’m conserving my adrenaline. It doesn’t pay to get all worked up by badgers on the front porch if there’s a tiger in the backyard.
A few months ago, Carter dropped his red bowl and it shattered. He was devastated and cried for days. He never had a blankie or a binkie, never loved a stuffed animal or a special pillow, but for several years that red bowl was his friend. People can get used to anything, and people will find comfort in strange places. I don’t understand it, but I’m profoundly grateful for it just the same.
Finally, some researchers believe that Charles Darwin may have suffered from cyclical vomiting syndrome: