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Barfy McBarferson and the Bogus Diagnosis

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.

Childhood Migraine Variants at eMedicine

Abdominal Migraine at The National Headache Foundation

Cyclical Vomiting Syndrome at Mayo Clinic

Finally, some researchers believe that Charles Darwin may have suffered from cyclical vomiting syndrome:

New Theory Emerges on Darwin’s Illness at MSN

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47 comments to Barfy McBarferson and the Bogus Diagnosis

  • Well. That does not sound fun. At all. I’ve never heard of an abdominal migraine. But it sounds awful. Does it also sound awful to say I’m glad he just has regular migraines now?

  • Wow. I too had never heard of such a thing and can easily see why it would be much “easier” to have a ‘normal’ migrane than abdominal. Tough little man!

  • Craig

    I don’t know what to say, except for you’re an incredible soul and I have tremendous respect for you….

  • I will never understand why some people are dealt much tougher hands than others.

    My mother suffered the loss of her infant son, her husband, and her father within eight years. When I asked her how she survived it, she said that this hand she had been dealt made her who she is. (And perhaps it was these losses than even make me who I am.)

    Though I don’t know the reason why your family has been given so much to overcome, you are undoubtably more empathetic, patient, knowledgeable, and resilient than you would have been otherwise.

    I’m so happy that you decided to share this story. I love reading about Carter…the more stories you give us, the more I feel like I know him. He’s an absolutely amazing and strong kid. You are blessed. But, you already knew that. 🙂

    • Thanks, Nichole. There’s no doubt that Carter’s issues are shaping us like your mom’s terrible losses shaped hers. I don’t understand why some people have to struggle so much more than others, either, though I’m very grateful that my spiritual beliefs don’t lead me to think in terms of rewards and punishments. That would really mess me up!

  • Haven

    My husband suffers from cyclic vomiting syndrome. I don’t think I’ve hear it called abdominal migraine though. When I started reading this post, I said to myself “it sounds like Carter has CVS” and hey, I was right. My hubs uses zofran and it happens to him almost every day, still, at 29. He also gets regular migraines.

    • Oh, wow. That must be so, so hard! Has he tried the migraine prevention medications? They were a bust for Carter (the few that are approved for pediatric use) but I’ve heard they work really well for some CVS sufferers.

    • Marlee

      Hi – My son is 30 and has had CVS since he was 19. It is horrible. We have been to the emergency room 26 times and nothing seem to work for him. If anyone out there knows of a cure please post it.

  • Poor Guy on the loss of his red bowl, I totally understand his feelings of loss. I can’t imagine going through all that.

  • Totally different experiences, totally different life, but this . . .

    It doesn’t pay to get all worked up by badgers on the front porch if there’s a tiger in the backyard . . .

    I totally understand.

  • The fact that that red bowl became his security blanket makes my heart ache.

    It literally makes me tear up.

    What a hard, long road you all have been on.

    I wish that I could give you and him a big hug.

    • Thank you Abigail. It’s true he’s got a harder row to hoe than most. My instinct is always to put a smiley face on things, but there isn’t one. Well, except for this: he’s much improved in this way, so we’re grateful for that!

  • It is amazing what we can adapt to, what we can normalize.

    In this case, a healthy coping strategy. What else could you do? Simply learn to be accepting and calm about a painful and difficult circumstance.

    In some cases, an unhealthy accommodation that allows inappropriate behavior to continue.

    Amazingly adaptable we are.

    Just not always with the sense god gave a goat. 😉

    • Gasp! That’s one of my favorites – “You’re not using the good sense that God gave goats!” I thought I made it up.

      You are so very right; our incredible adaptability is such a gift, but also a curse. We can deal with things, but we also put up with crap we shouldn’t.

  • L

    I’ve heard of it! My mom’s best friend (and our next door neighbor)’s son suffered from it when he was a kid. He’s mostly grown out of it now, but for quite awhile no one could figure out what was wrong with him.

  • Lori

    As a sufferer of regular migraines, I can imagine how much worse this would be – and how hard for a child to deal with.

    Can I ask a question? It seems too much of a coincidence that Carter, with his other issues, would just happen to have this problem too. It is related at all to his other struggles? Have you ever explored that possibility? (Having read your blog for awhile, I’m sure you have, I am just curious)

    • Oh, yeah, I’ve been meaning to put together a blog post about that. In fact, there are other issues, too, and yes, we do believe all of it (except allergies and asthma which he inherited from his dad) is related.

  • Lori

    That sounds very interesting. I love your blog, by the way, and think you are doing an amazing job under very difficult circumstances.

  • Kendra

    I have heard of this before. My friend’s son has had this for a few years, he is 8 now I believe. Carter’s sound worse and more often though. Severe migraines run in her family.

  • What a tough road. I truly cannot imagine the agony of watching your child suffer like this. I am happy to hear that the condition has morphed to something more tolerable for him, but terribly sorry for all of it, nonetheless.

    I had never heard of this before either, and I am kind of into medical stuff and science too.

    I have to admit, for my own reasons, I relate to “It doesn’t pay to get all worked up by badgers on the front porch if there’s a tiger in the backyard” which I hope I remember! So often I forget the things I want to remember most.

    “Normal” is certainly not static, it is ever-changing. There are as many definitions of normal as there are people. We each have our own kind of normal, don’t we?

    • So true. We all have our own baselines, and they can change at any time! I’m not by nature a flexible person, so I’m struggling constantly to learn to stay loose and not get worked up about those badgers.

  • Damn. I’m glad I came here and read this. I’ve been feeling so damn sorry for myself it’s a welcome kick in the ass to get snapped back to reality and know other people are out there with huge problems of their own.

    I know it wasn’t the main point of the story, but I got so incredibly sad that Carter was so attached to that bowl. Kids should cling to stuffed animals, not puke receptacles. Ugh.

    • Yes, the whole broken bowl devastation broke my heart. It’s just amazing how very, very wrong things can go.

      Hey, I didn’t start to feel OK, ever, until I started building a community of parents who were living through similar stuff. Not necessarily the same, but raising a kid with special needs is not something anyone (even the most sympathetic of people) who hasn’t done it can truly understand.

      Just as conceiving, falling in love with, and then losing a child is incomprehensible to most of us. These are shitty clubs to join, but there isn’t much that has ever been more necessary for me. I know you have lots of people loving and praying for you (me included), but you also need some people who get it. People who don’t need you to say a word to understand. When you’re ready, find your people.

  • L

    aaand you get credit for being the first of two cyclic kiddy barf blog posts I’ve read in two days:

    http://mooshinindy.com/2010/07/08/cyclic-vomiting-syndrome-cv/

  • Oh honey. I’ve had plenty of people say they had it as kids or that maybe their kids had it when they were little but your the first mom I’ve come across in the trenches. And we both came clean about it in the last week.

    Go figure.

    You and I? We’re doing all those other moms a favor by putting a voice to this really strange illness.

    In our house it’s “WHITE BOWL!” So I may have giggled at that part, because I SO GET IT.

  • brooke baker

    I’d heard of abdominal migraine, but – oddly – not as presenting with vomiting! Strange. Seems like that’s its most common symptom. A friend of mine was diagnosed in high school, but his episodes involved atrocious cramping rather than vomiting.

    I had plain old migraines as a kid regularly, and that was bad enough – poor Carter. They made me sick, of course, but only at onset, and it was never as bad as 6-10 a week! Ugh.

    Your point about what becomes normal to you, though, still very much resonates. It can be dangerous. I was so used to migraine pain by the time I was an adolescent that the typical 1-10 pain scale doctors like to use was meaningless; they’d ask me to put a number to how bad the pain was, and I’d say that if my worst migraine was a 10, then whatever I was experiencing at the moment was a 4, or 2, or just negligible. And as it turns out, most people don’t experience dislocating their shoulders as a pain level 3. That particular lesson cost me dearly.

    Is it twisted in some way to say that, at the very least, I’m happy for you that the vomiting subsided before this latest crisis was revealed? Can you even measure that way? Probably not. All the same … I’m glad that in at least that one way, Carter can feel a little better now.

    *
    ~b

    • Oh, no, not twisted at all! Carter’s CVS and his asthma both started to improve around the same time , and not too long after that he started to gain weight (he’d been underweight and on the brink of a surgical feeding tube for several years). We’re incredibly grateful that his physical health improved before his emotional and mental health changed so dramatically.

  • You know, this is interesting. When I was in 1st grade I was diagnosed with migraines. They would come on really fast and then I would throw up. After a couple of hours of pain and throwing up and a nap, I would usually be fine. When the doctor (small-town GP back in 1970) diagnosed me, he had no idea what was going on and why I was having them. I became dehydrated and they put me in the hospital for a few days. Eventually they got better. They eventually realized it was being caused by reading…they started after reading class when the light was a certain angle on my book… they were optically triggered migraines.

    I never had another migraine until I was in college. I don’t have them very often, but now I have drugs and they know a lot more about them now than they did in 1970. Hopefully Carter will grow out of them like I did. It was miserable…for everyone.

    • Wow, that’s interesting! I haven’t heard of that before. Carter’s are related to being tired, stressed, and anxious. Hopefully, we can get him emotionally stable enough that they will dwindle to nothing, or at least become less and less frequent.

  • Jen-Mom of 3

    My daughter suffers from CVS, which we have been told was also called “abdominal migranes”. We have tried otc meds, Propranalol, topiramate, zophran, etc. She is almost 12, but her episodes began in Kdg., about 6 years ago. Her episodes are every 1-3 weeks and last 24-30 hours. She literally looks sick and 30 minutes later starts vomitting. She pukes every 15-30 minutes even throughout the night without any relief. Obviously, after the first few times, she is just wretching and dry heaving and vomits this gross bile yellowish slime. It is soooo heartbreaking, but she is such a trooper. She actually just gets her little bucket and handles it herself. It helps for us to push on her head, as it usually turns into a migraine. The next day she is sore, especially in her legs and stomache, and she is starving once she feels better. God bless her, she is so sweet and happy and normal except for this one sad thing. I worry because she is tall, but way underweight, and I worry about her body image and her teeth. If I even suggest sips of water or rinsing her mouth/wiping with a washcloth etc. she starts bawling. I actually found your site bc I was researching doctors and considering taking her out of state to a specialist. We are in Fl and apparently CVSA doesn’t even have a doc in my state who can help. I wish you the best with your little one. The things I keep telling myself that may bring you some comfort, is that a)thank you, Lord that it’s not something worse and b)many people outgrow it, maybe ours will, too! BTW, my husband had IDENTICAL experiences in elem school, and now he only gets a migraine about one time a year and then he pukes once and is done. Wouldn’t that be an improvement? Good luck!

    • Oh, wow. Your daughter has a much worse case of CVS than Carter ever had! Thankfully, Carter is vastly improved and only gets migraines a few times a month, max. I hope your daughter gets some relief very soon! Carter was sometimes willing to eat a Tums between barfs. I always encouraged it so that what came up would be neutral and not damage his esophagus or teeth, but sometimes he couldn’t even bear the thought of it.

      Your poor girl.

  • Jordan

    This book has made a huge difference for me with my traditional migraines and for a friend who has a child with abdominal migraines. It does require making big changes in diet to avoid many trigger foods, but in the end I find it well worth all the effort, and the triggers he identifies are much more extensive than any list I had previously been given…http://www.amazon.com/Heal-Your-Headache-Program-Taking/dp/0761125663. Good luck!

  • […] However, the world has become a lot smaller since I started living some of it online. I almost wonder if google has seen a drop in use as social social media rises. Real people (often strangers) talking to each other online. Telling their stories.  Within 24 hours of posting about Addie’s CVS someone told me about another mom in a completely…. […]

  • My son suffered from CVS too. Our GI doctor gave him an antihistimine (periactin) which he took every night for a year. The cycles stopped. He hasn’t had one in a year and a half. I asked the doctor why the antihistimine and she said that they don’t know why it works to stop the vomiting but it does, they actually discovered that it worked by accident. I am so glad that your son is doing better, but it may be worth a shot to ask your doctor about the periactin. My son is non-verbal, so he could never tell us when he was going to start the vomiting but I could look at him and tell it was going to come and run him to the kitchen sink!
    Myssie recently posted..Looks Like Trouble

  • I’m stuck up at some ungodly hour addicted to your blog now. All wise, compassionate, informative and with-the-times posts. I’m an RN at a large hospital on an internal medicine floor and we have many patients that we know all too well with cyclic vomiting. It’s such a hard thing for the patient, family, and care providers to cope with. I love your story of how your family dealt with it, and I’m going to share it with my colleagues.

  • […] returned to our search for that diagnosis when Carter began to have symptoms of CVS (though we didn’t have that diagnosis […]

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