compare and contrast: asthma in three scenes, and a reading list

scene one:

boy whines, mom looks up from cooking and replies. Boy wails. Slinks up stairs and flops onto bed. Mom pauses, considers, and walks up the stairs. Finds boy flat on his back, arms spread wide. Watches his ribs expand upwards and outwards, as if his mouth was a lacrosse stick, swooping, arcing, then netting the ball.

scene two:

boy looks dubious, blows into peak flow meter. Mom cajoles, grins, dares him to beat the results. He does. She raises an eyebrow. Rising to the challenge, boy offers to beat even that. He does. Mom high fives him, as he sinks back down onto the bed. Arms spread and ribs resume their push up, arc out, up, arc out, a net grasping at elusive air as mom notes: 35% below standard peak flow score.

scene three:

distastefully, boy clamps his mouth on the inhaler's spacer tube. Pssshhhhhht. Ten hippopotomuses tango past. Psssshhhhhht. Another ten hippos, foxtrotting. Boy blinks. Mom freezes, uncertain whether she is hoping for success (tool that works!) or failure (crazy mommy invented data = fake diagnosis!). Boy grins, jumps up and down. Shows a certain Mister Checkers how the twist really oughtta be done.

Mom slathers a grin on, and joins boy, who offers some suggestions on just how to coordinate hips and knees.

Right, then. We have a diagnosis.

*********************************

After a kick to the stomach chat with Dr. Allergy about the rates of kids with asthma, misdiagnosed with ADHD, or anxiety disorders, etc (guilt, guilt, guilt, anyone?), it is past time for some reading. Here's what I'm looking at (and regretting the good old days of grad school, when I could read more than just abstracts!):

Asthma history and presentation, which points out that "Pediatric asthma and psychiatric mimics require special attention to prevent misdiagnosis." Oh, you are so right. And,

Psychological considerations of the child with asthma, which suggests that "The link between asthma and psychiatric illness, however, is often underappreciated by many pediatric and child mental health professionals." And may have a point, starting with quality of life, and continuing down the path of chronic illness = risk factor for psychiatric somethings. Sigh. And then,

Symptom perception in children with asthma: cognitive and psychological factors,

which offers a thought not entirely relevant to the Eldest, but still intriguing; "Children's attentional abilities had more of a bearing on their symptom monitoring abilities than their IQ estimates and psychological symptoms." Oh. Well, that makes sense.

And the jeez, I want to see THAT! abstract, Children's illness drawings and asthma symptom awareness, which points out that girls are more in touch with their physical *and* psychological feelings. Um. Alas, but this may be so.

Sweltering and cursing the system that assumes that any consumer that wants to read this stuff has, necessarily, oodles of cash to drop ($31 per article, available for TWENTY-FOUR HOURS? wtf?), I'm off to take refuge in children's books. Like the cheery (but vaguely written) Abby's Asthma and the Big Race.

This appears to be a story for the knowledgeable asthma child-parent dyad, and it's a pleasant vehicle for its message: kids with asthma can be athletic. As an educational device, however, the book doesn't go much farther. The text assumes that we know about allergens as triggers, that moving from cold to hot rooms can trigger asthma attacks, and that we can identify the school nurse as not knowing enough about asthma - why else would she discourage Abby from running in the big race? I'd love to have seen Abby's rebellion against these skeptics, but I'm willing to concede on the ways that too much information can clutter and drag on a narrative.

And I'll forgive much for the letter at the back, written by an allergist at CHOP, who notes that 10% of the recent American Olympic team has asthma. The Eldest loved that....and speculated happily on why this might be so.

(he thinks they're all adrenaline junkies. FYI.)

hidden in the silence

(talk, talk, talk, chatter grownup chatter, talk, talk asthma chest wall x-ray? data points blah yadda yadda talk)

The Eldest sat, silent. Smiled briefly and embarrassedly at me, signed for me to talk.

(talk, talk, talk, yadda grownups talking hey, kid, do you want to add anything blah blah talk)

The room fell silent. We all waited, the chatter done - and the kid still sat, silent. Shook his head. No, he wasn't going to try the inhaler.

And then we were still. Nothing happens without the Eldest's agreement - nothing. His silence wrapped around him, his back curving gently while his face was calm. Certain.

No.

I looked at him, but the doc spoke first. Quietly, almost delicately, what are you worried about? And wise, he waited for an answer.

1, 2, 3, 4, 5, 6, 7, 8, 9, 10 - at 16, the Eldest spoke. I'm not worried about anything.

I am, I said. I don't want to do the wrong thing, and I'm using my worry to help me figure out what the right thing is. Worrying is smart - it means that you are thinking about the risks and the good stuff that can come with any decision.

The Eldest didn't look at me, and looked instead at the doc. Turned away from my flood of words to the still-quiet Dr. Allergy, and considered. Then spoke. He told us about what the tightness in his chest felt like, how he'd run and run and run, which would help. But then it would come back, maybe a little better? than before the running? It happened fairly often, he said.

Still quiet, Dr. Allergy nodded.

The Eldest glanced at me, but I pretended to be busy writing something, afraid to stop this flow of words. He kept talking. The doc stayed quiet, but began to smile, proud of the kid, delighted for the kid.

Do you know what adrenaline is? the doc asked, eventually. The Eldest shook his head. Adrenaline is what's in your EpiPens, Dr. Allergy explained. And it's something that we use, sometimes, to help kids with asthma. By running, you were getting your body to release exactly what would help you feel better.

The Eldest thought this over, considering pride. Feeling out a sense of empowerment, testing it to see if power could be his in that moment of breathlessness and denial. He smiled hesitantly. Dr. Allergy smiled back. Good work, kiddo, he said.

Sadness and pride fissured through my core, my head down. This was their moment, the Eldest and his doctor, and I tucked myself into a corner. Grieved for the burden he'd carried, glowed for the kid and the team we'd assembled. And waited.

The Eldest looked Dr. Allergy in the eye, and nodded agreement. He'd try the inhaler.

After a tight-strung pause, the grownups went back to their chatter, but now? now we talked with him.

This is what your body can do. This is how we can help.

testing, testing, 1, 2, mess

I have just - got - to stop feeling like I'm eyeing my kids cross-wise.

Does the Eldest have ADHD? or is he just clowning around? Does the Toddles have sensory integration issues? or is he just overwhelmed, and balancing himself? Does the Eldest have a new environmental allergy? or is he breaking out in hives from the old one? Does the Toddles have attention issues? or is he just a distractible little kid?

And are those pairs of the same question, posed different ways?

When the Eldest handed us a clear-cut medical puzzle to chew on, oh, I tell you - it was such a relief. Alas for the medically normal, that the major puzzles are fuzzy, mushy psycho-kid stuff. Alas for us, that we don't get a Get-Out-Of-Irritating-Kid-Stuff Free card. I find myself chasing my own tail on the emotional/psych stuff, reading books, questioning the evaluations, my own perspective, my habit of wanting to tie problem to diagnosed solution, and hey, the alignment of the stars. But a medical, what the fuck is making my kid gasp and complain that his seatbelt is too tight? Love it. Clear symptoms, straight-forward diagnostic process (medical history? risk factors? likely diagnosis? testing?) - this is so much easier than trying to figure out why the Toddles doesn't play with groups of his peers.

(answer: I have no freakin' idea. Maybe he's just shy.)

Bizarre as it may be, I'm delighted to be taking the Eldest for asthma testing tomorrow. He's been complaining of too-tight seatbelts, gasping and puffing up his ribcage for the past year or so, and it feels so damned good to finally be charging in and examining this with his medical team. And, look! It's a measurable issue, with data points! On the advice of the pediatrician and the allergy gurus, we'll do a spirometry test, measuring his input and output. How we check this, if he's not having a bout of the can't-get-enough-air-freaking-out-ness, I dunno. But hey, we're going to test something physical, and dammit, diagnose it. Or not.

I can't wait.

(pause)

And now I'm laughing at myself. Such a lovely dichotomy! Messy psych vs tidy medical? Ha. As if there were such a thing as a purely medical something, as if those medical somethings don't dovetail with the emotional ripples that they cause. (ahem) I write this as if the Eldest, when his chest tightens, can actually tell that he's getting upset because his chest is tight, and not because his brother is breathing on me - quit it - MOOOOOOOOM! I'd be willing to be that he's choosing that oh-so messy emotion (you irritating git, stop that - hey - stop!) over the tidy and freakin' scary medical (air! need air!). Oh, yeah. It's a clean dichotomy. See?

So clean that I spent a precious morning, explaining to the head of the Eldest's school that a certain staff member was not to be involved with the Eldest's care: she appears unable to evaluate a situation, nor do I trust her to respond appropriately. More to the point, the Eldest doesn't trust her. And if the Eldest can't name the problem (air! need air! vs bwahahaha! we're going to do mathERmatics!), then he can't advocate for himself. And he can easily end up stuck, working to inhale, exhale, awash in that messy psych - and observed by an adult who can't help him separate the ripple from the medical stone. Who very well might not even see the medical stone.

It was, I must admit, one of the more exhausting bits of advocacy that I've done this year. How do you express a lack of faith in a staff member, casting doubts on her ability to evaluate the child in front of her? Rather than the child that she expects to see? The implications of this are wide-ranging - assuming, of course, that the parent expressing this concern is heard. Deemed trustworthy, and generally non-bitchy.

Sigh.

The night before, the Man and I sat down and type up a list of points. We went for observations, not analysis - the analysis would be implicit, I hoped. Show the principal, don't tell her - let her see for herself what the problem is. Hopefully, anyway. We came up with a 6 point presentation: background; the Eldest's (stated) feeling about the staff member; how we responded to that (give her another chance, etc) and the outcome; what I have observed; what I like about her; my concerns, irrespective of that liking, based on the Eldest's opinion and my own observations. And our goals: the Eldest isn't left alone with her, nor is she to be involved in discipline/classroom interactions.

I got through three points, and was part-way through the fourth, when the principal paused in her note taking. Looked up. Then X is out of the picture, she said. Just done. Out of the picture, won't be involved with the Eldest any more.

Just like that? Something so simple and clean? Well, now wouldn't that be nice...

leisure? who needs leisure?

okay, so today we all slept in (I'm setting my alarm a little later than usual, hon. So don't rely on me to get up first - I won't), and then ran around like insane people. We infused clotting oomph into the Eldest (okay, the Man did), we showered (I did, anyway), we dressed kids (the kids might have helped here) and we ran out the door like mad things. Twenty-two minutes after I'd opened my eyes and yelped.

We were ten minutes late to school.

The Man was five minutes late for work.

The Eldest had a great day. (see? it's not all about an evil morning routine)

The Toddles had a stellar day. (transitions? bah. we laugh at transitions)

and

I am wiped. (well, okay. that one? we saw it coming. might not have anything much to do with the morning, though)

Hm. Maybe all of this pre-planned routine isn't necessary? maybe, we should start sleeping later, and then tossing the kids in the direction of the car, toothbrushing optional.

Worth considering, no? But not at the moment - I have to cook, fold laundry, set out clothes for tomorrow, pack the kids' backpacks, and finish washing dinner dishes. Or hell, toss it all and go to sleep. Apparently, we can work wonders in twenty-two minutes or less....

sabbatical quotations

So, how about some clothing?

The Toddles looks down at his skin, and considers. He puts on some underwear, and appears to be satisfied. Behind him, looking to provide incentives, his mother opens a window.

Great! Underwear! Now, how about some pants?

The Toddles, having firmly declined the idea of clothing for the past two hours, indicates a continuing anti-pants position.

I have a compromise, he informs his mother, who has long since passed the primal scream phase, and is now considering craigslist. He takes his father's ancient sweatshirt, and ties it around his waist. It hangs to the ground, the sleeves trailing.

Behind him, the light gilds his skin, making it glow. Wrapping the sleeves around his shoulders, the Toddles looks calm, satisfied. Then - pauses - when a crisp breeze blows in from the window.

Well, he says thoughtfully, I just need something to cover the front parts of my legs.

Behind him, his mother grabs his pants. The Toddles notices, and looks at her pityingly. Not that, he says firmly, and stalks out the door. He will, his mother knows, spend the day in underwear and sweatshirt-cape. She picks up his kipa, and follows him.

Time to pick the battles.

*****

Toddles jumps into bed between his parents, one of whom curls around him. Grins. Thinks for a moment, and then:

Help! Help! I'm being subducted!

the mama raises herself up on one elbow, and looks at the Man. Oddly enough, I think this one is your fault.

He grins.

****

a few hours later, at bedtime....

mama, surveying a lump of blankets. A leg emerges, and is waggled by its owner. From under the blankets, a giggle can be heard.

That's one nice leg. Did you grow that yourself?

A head pops up. Nope. After all, I'm using YOUR genes!

Suddenly, I need some extremely dark chocolate.

oh, it's a viral, viral world (warning: potty talk)

I'm wiped, but I think the mellow I've got going is not actually a glaze of exhaustion, but rather, a geniune mellow. The sun is kinda out there, the Toddles is napping, and I'm not doing the seventh load of laundry for the day. Yesterday, though - well. Let me just say that we're leashed to the bathroom here, people. The Toddles is having a nasty bout of the runs - and no, this is not connected to the recent water pipe failure.

It is, however, the perfect opportunity to work on teaching him some bathroom routines. Because yes, he's four, and yes, he's toilet trained and knows each of the steps of bathrooming, but they are by no means unthinking habit. The unwashed hands, the toilet paper that didn't make it in, the soap scummed towels are, perhaps, making me freaking nuts. But dimly, through the haze of I will not get conjunctivitis again, just because you little twerps don't wash up, I could see a valid cause. I sat down and made a list of the things that he does when he uses the bathroom, and holy moly. It do not be simple.

• recognize need for bathroom
• find bathroom, leaving stuffed animals and binkies outside, okay? Failing that, pleeeeease don't spit out the binky such that it drops to the floor right next to the toilet. Your mother has read an article about spray from toilets, and it's scarred her. So be nice.
• remove/pull down garment(s)
• hoist self into place
• use facilities. Aim, baby, aim!
• clean up relevant body parts. Diaper rash does not depend on diaper wearing, folks.
• flush
• pull up garment(s)
• survey the floor to see if any additional clean-up is needed. Failing that, remember that unexpected puddles are worth noting. Also, not stepping into.
• wash hands with soap (turn on water, pump soap into hand, create bubbles by rubbing). There is a direct relationship between the amount of soap you pump and the time it takes to get it off. Think about it.
• rinse hands (with hands under water, rub hands together until bubbles/slippery soapy feeling has gone). Nope. Still soapy. Keep going, kid.
• dry hands, preferably with a towel. Because if you forgot to use soap, then the shaking hands vigorously and checking to see how high the drops fly game? not so good.

Yeah, well, okay. It's the how-to-make-a-PB-sandwich lesson: there's more involved than I'd think. Granted, this is the kid who will turn on the water, stick his hands under the tap....and forget why he's there. Twenty minutes later, he's soaked the bathroom, himself, and created a small tributary in the hallway with some fantastic game, the tap is running - it has to be running, Mum, I need the water! - and he's geniunely surprised that I'm wearing the WTF mom-face.

(deep breath. Repeat. Repeat some more.)

To be fair, I start off primed to lose it over the bathroom thing. The Toddles, alas, has a translation problem: when his bladder pipes up, the Toddles assumes that he's actually hearing from his Wiggle-O-Meter. And so he runs back and forth and back and forth, faster and faster and faster and faster, with increasingly ornate footwork until, well, let's just say that the kid has good control, and he makes it every single freakin' time. And my blood pressure has always been nicely low, so I should survive until we can stick a Babel fish in the kid's ear. Or urethra. And none of this has anything to do with the long list of Things Thou Shalt Do, post-toilet, except that when he misses one or four items on the List, then I assume that this is another example of anti-w.c. behavior, and lose it.

Unfairly, I think. (Well, usually unfairly.)

So, we practiced. I did nothing but laundry and bathroom runs, chatting about the bacteria that we were flushing - or rinsing - down the pipe, nudging him when he forgot that we weren't really playing a game on the waterworld Zorbon, trying to make that long, long list into unthinking habit.

It was a long day, but a nicely mellow one. I crocheted half of a project and found a comfortable spot on the hallway floorboards, and the kid won the Most Cheerful patient award for being chipper despite the stomach cramps, and calm about any accidents. And maybe it paid off: today, no accidents (yay!) and he's automatically washing his hands. Usually with soap.

(yes, I'm on it.)

put ye not faith in princes

for they will have recalls. And leaks.

Have you seen this? I am fighting an urge to hunt down a J&J exec, and to throw my half-empty bottles of Benadryl, Zyrtec and what the heck, a few Tylenol bottles at him. Or her.

On the other hand, full credit goes to them for sending out the recall before a child was over-dosed with any of these medicines.

Nonetheless, between the antihistamine/acetaminophen recall, the high pollen count *and* the big water main break, well, it might just be time to go on a gremlin hunt. Just as soon as I finish going through all of the NDC codes - lessee, I got the ones in the bathroom cabinet, the closet stash, the boys' backpacks, oh - my bag! right. And I guess I should email the schools, too...just as soon as they finish stocking up on water, I'm sure they'll have oodles of time to deal with checking on the kids' antihistamines, right?

yeah. right.

But, not to leave you post-less, here is an assortment of images from a day without cracked water pipes, or pharma-fun.

****************************************

On a day when the sun shone, and the schools were obligingly closed, the Toddles met a new friend, inching - then stretching his slightly creepy way along a stick. Until I'd gotten a closer look, I hadn't realized that inch-worms have legs primarily on either end of their bodies. We watched the inchworm creep, then stretch, twisting impressively as it tried to find a new foot(feet?)hold.

But the inchworm's gunmetal grey self was far outshone by this stylish fellow:

He was, no doubt, hanging around the area for the promising blueberry and raspberry pickin's to be had, later in the season. Maybe even a bit of the apples that grow along the trail. The kids spotted deer tracks, making me think that our sunshiny friend might be outcompeted, but hey, there's probably enough for everyone.

The Toddles picked handfuls of purple and white violets, admired pussywillows and peeling birches. I guessed recklessly at plants, but was stumped by this plant, which I was unable to identify. A chard? A wild rhubarb?

After a wonderful wander and a merry picnic, we went home. The Toddles, his pockets stuffed with rocks, juggling a last few treasures - including an entire brick - on his way to the car.

The rocks dribbled out of his pockets as we walked, and each step brought more wonderful bits of stone. But, hey, kid? you've got to leave some of the world for next time. He looked at a particularly lovely chunk of the world that wouldn't stay pocketed, and wailed.

But I FOUND it! And it's MINE!

I shrugged. Maybe it can be yours, later? Maybe we can try to rediscover it next time?

A very crucial brick at his feet, he considered this. And if we don't find it next time, I'll find something else, he informed me. Lots of something elses.

Wrestling with maps and looping little roads that should go somewhere other than where they did, I looked up. And tried not to sigh.

(failed)