best. QOL. evah.

Nowadays, it seems as if children's mental health is climbing onto the medical radar, and spreading until it gunks up the wipers. As it should - too many kids, saith my not at all educated self, are left to struggle with depression and mental illness. People should find these kids and help them, and no, I'm not going to swear to add emphasis to the statement. They just should.

With that, of course, comes the QOL form - the quality of life form.

Is your child happy? sad? in trouble at school? do they talk about anxiety? do they say that they feel down? do you think that they are anxious? do you think that they are happy? sad? in trouble at school? 

I have an amazing urge to write it depends all over these things, but I do appreciate their significance. Mental illness happens to all kids - the ones with the chronic diagnoses are simply best poised to get screened over and over. Which is perhaps unfair. Still, I do appreciate the pop of studies by people are realizing that hello? chronic illness is actually an additional thing to ask of a kid. And that kids' response to illness is unpredictable. QOL studies - and I'm too tired to go find you links, but look up QOL and pediatric cancer, resilience, etc on pubmed and read carefully. Especially, read the bit about how parents tend to rate their kids as unhappier than the kids say they are.

I love the bit where the researchers think carefully about how to prove that the kids aren't lying. Or so extraordinarily socially adept that they know to say that they're just fine, as the Eldest did, when asked by doctors doing their morning rounds.

How are you feeling this morning, kiddo?
The Eldest summoned a big smile and bright eyes. Oh, just fine.
Hey, said the doc du jour, that's great!
Yes, said the Eldest with a degree of satisfaction. So? Can I go home now?


Truly, the doctor should not have been surprised. Happily for him, he joined the rest of us in laughing our asses off while the Eldest looked on, somewhat hurt.

And thus, the QOL.

Which is how the Man and I found ourselves looking at the following question: Does your child get into more trouble at home than his sibling?


And our answer: You should meet the sibling.

say ahhhhh

and hold very, very still while the nice lady with the long stick with the cotton bitty thing on it kickstarts your gag reflex. Nice try! Okay, so from the top: aaaaaahhhhhhh?

Um, said the Eldest, that's enough for now. But thanks.


The Toddles, by contrast, beamed. You want the cells in my neck that the virus got into, so that you can figure out exactly what virus it is! I know! (Note: the kid's favorite book is Cell Wars, because knowledge is power in my house, people. He's been carrying it in his backpack for months now, though, which I personally think is taking the matter a bit too far. But clearly, the kid's been waiting for his cue.)

The Eldest looked over. Your body already knows what type of virus it is. She doesn't, is all.


The Toddles refused to be unimpressed. AAAAAAAAAAHHHHHHHHHHHHHHHcough

strep A, people. Time to play our pediatrician's favorite game: Which Antibiotic? Because the Eldest has met them all, and oh, his immune system knows what type they are, too. Sigh.
***************************

The game winner was, btw, a drug that required the Eldest to take six times as many doses of medicine as his brother. And each dose was three times the size of his brother's, to add insult to injury. None of you understand what it's like, he wailed - right up until I ended up on the same antibiotic, same regimen.

Good work, Mum! he applauded tonight. Good job killing off those bacteria.
I bowed, extravagantly. I do, after all, take my laurels where I can find them...

consider the happy sleepy juice

which nobody would ever let me take home. Just a wee dram of barbituates, darlin', to settle yerself after dinner? No?

dang.

The Man and I are sitting here, thinking about our upcoming parent-teacher conferences. No, dreading them. Considering whether we're going to accept the Man's ability to discover an essential meeting - at work - and admire his ability to be crucial, elsewhere. Because the Eldest has, over the past few years, refined and expounded upon his understanding of a world that just does not quite apply to him.

Like, oh, the classroom.

Forget buckets, the kid says, who the hell are all of you, and why are your faces between me and my book? Shove off.

And, being the Eldest, he's probably offering you a winsome grin, to soothe the shove. But still. The kid has talked his way through class, called out - or been unaware that there's this shoulder joint thing, and you rotate, so! and the elbow - yes, so - and the hand? maybe? Or not. (oh, well, says the Eldest, and tries the grin again.) He's walked out of the classroom, certain that he can simply avoid a lesson, should he so choose. Or, that - they don't need me in there - he can interpret his presence as optional. And offered your astonished, sputtering self some yarn, rich with his time and genuine liking for you, o teacher. (hopeful grin.)

Oh, it's going to be a fun, fun parent-teacher conference. And, in case you were wondering:  the teachers are crackerjack, the school is supportive and the kid is miserable. When he's willing to admit it, that is. Which means that the Man and I are wavering between saying useful things like, wha'? and ohdeargah, and looking for a scapegoat.

Enter, the scapegoat.

Consider this study in the journal Anesthesiology, this news article, and this panel's thoughts regarding anesthesia in young children. No causal link has been shown - and that's crucial to remember when you are reading the next bit -  but the study found that children with 2+ exposures to anesthesia, before the age of 4 yrs, were 59% more likely to have learning disabilities than children without 2 exposures. Kids with three or more exposures to anesthesia? 2.6 times as likely to have a learning disability.

There's lots of unanswered questions, like the role of stress from the procedure, the specific condition requiring an anesthetized procedure, etc. But animal studies confirm that anesthesia has an effect on neurodevelopment.

So, go on - ask me. How many times was the Eldest sedated before age 4? And if I bring that up at the PT conference, will it do us any bloody good whatsoever?

Answer: no, given that bloody good is herein defined as that which gets the kid out of this hole, and helps him stop banging his head on reality. But hey, nice to have a scapegoat.

okay, someone explain this to me?

At the National Hemophilia Association's annual meeting, a poster described the results of a study comparing plasma derived factor IX (pdFIX) and recombinant factor IX (rFIX), in terms of allergic reactions.  You can read about it here. 88 patients with factor IX deficiency, or hemophilia B, were given the pdFIX, and 163 patients were given the rFIX. The researchers looked to see the prevalence of allergic reactions and the development of antibodies, called inhibitors, that inhibit (hyuck, hyuck) the function of the protein in the system. Or, stop the protein from working at all.

Which, for the severe cases, takes you right back to where mama nature dropped ya. No clot, no dice.

I'm intrigued to see that there really wasn't a difference in the outcomes - 4 from the pdFIX group and 3 from the rFIX group developed inhibitors, and 7 had allergic reactions; 4 from the rFIX group, and 3 from the pdFIX group. But here's what has me gaping:
Potentially serious allergic reactions including anaphylaxis and the development of inhibitors -- antibodies that can neutralize replacement factor -- are uncommon but do occur and often concurrently, the investigators explained during a poster session at the annual meeting of the National Hemophilia Foundation.

From a purely personal note, well, duh. Allergy Boy (a.k.a., the Eldest) developed inhibitors and his first food allergy, roughly at the same time. Years later, we started asking questions about immunology, and not surprisingly, the hematologists admitted to being out of their depth. We found experts at a conference on inhibitors, and asked: allergic reactions are usually IgE mediated, but what kind of antibody is the inhibitor?
How does it work? Is there a relationship between the two processes? The inhibitor experts shook their heads, or looked doubtful. But, absolutely! an immunologist told my mom, and years later, researchers are studying the two as a pair, as you can see here.

The field has come a long way, baby, but this link between allergy and inhibitor remains a teasing, odd note. Interdisciplinary research, anyone?

More immediately, perhaps, what implication does this finding have for the management of hemophilia B? And specifically, if inhibitors and anaphylaxis tend to go together, are there specific implications for families with a history of allergy - or, I suppose, inhibitors? Should they keep an EpiPen on hand when they administer fIX?

Inquiring minds would really rather like to know...

By contrast, however, the following press release required no explanation:
Tofutti recalled 25 pallets of the Tofutti Yours Truly dessert, for possible dairy contamination. I could not find any information about the recall on the Tofutti website, however, which is surprising. Or, well, not. I admit to sighing the sigh of the unsurprised - my experiences with Tofutti has left me unimpressed by their level of education regarding food allergies.

a few loops of yarn - and new FA guidelines!

It's been a long day or three, despite a sunlit 40 minutes today with Nicole Snow's yummy recycled (and fair trade!) sari yarn. It's a slim, pleasantly random mix of fibers from sari fabrics, and is obligingly turning into a toddler's hat. Or so I hope.

(For those of you who are interested, I'm adapting one of the free Lion's Brand patterns, this one for the Elfin Baby hat. I've corkscrewed the hat's tail, and am using half double crochet instead of single, to accommodate the yarn's tendency to twist. The stitch count is still 1:1, even with my changes, although I added a chain of 15 to the initial chain stitches to make the corkscrewed tail.)

Eventually, though, I had to put down the yarn and go be a parent. Not that my efforts in this direction were terribly appreciated today, but alas, the Eldest was due to find some way to balance the wonderfulness of the parent-teacher conference.

Even so? oy.

So here I am, procrastinating on a last bit of editing that I need to do, and grumping. And, with a hat tip to Jenn, I ended up doing some verrrry dry reading in the place of the much less dry editing. But oh, worthwhile. The National Institute of Allergy and Infectious Diseases has released the new guidelines for the identification of allergies and their management. At last, a set of best practices for diagnosis - testing! standardized! finally! - and allergy management. Although I do note the deft ducking of the really tricky management questions, about outside of the home or clinic, still, ya gotta respect the rest of it.

Here's the summary, in tidy poster form. And the Wall Street Journal's article, with my favorite quote, It's especially hard to pinpoint a true food allergy in young children with eczema, since they make IgE antibodies to many foods. "If you did 100 food tests, all 100 would be positive. That's what we see from patients coming in from around the country," says David Fleischer, an assistant professor of pediatrics at National Jewish Health in Denver, which specializes in allergy and respiratory diseases.

Damn straight.

I did note that the NIAID's recommendations for managing anaphylaxis reaction seems to have removed antihistamine from the list of first response options for patients and parents, explaining that The use of antihistamines is the most common reason reported for not using epinephrine and may place a patient at significantly increased risk for progression toward a life-threatening reaction. Hm. Looks like it's time to put a call in to our allergy team, and to ask them if we should update the boys' allergy action plans...

a marathon in an alcove

The photo that I would have - should have - taken today, was of the view that I had at roughly 2.15pm: two arms, stretched on their respective chair arms, each equipped with an IV. One was solidly wrapped in gauze, a rather stolid affair, complemented by the large rectangle of the board used to keep the elbow straight. The other was rather laissez-faire even with the board, with a hint of gauze near the IV, sliding under the skin with little more than a blush, or possibly a Tegaderm to cover it. Blocky and relaxed, the arms' owners stretched out in their chair, admiring Luke, as he battled his father.

There's good in you yet, said the hero, and we admired his idealism, while hoping he'll be really, truly fast on the defense. (And he was.)

We do an annual, day-long test at the hospital, studying the way that the Eldest's body responds to his clotting medications. For a variety of reasons, the Eldest's is not a typical drug, meet person, person, meet drug relationship. He tends to bash his clotting protein up a bit, argue a bit, and then settle down into a functional relationship. The pattern has held stable for the past five years, and with any luck, will continue - and be predictive only of his approach to molecular structures of limited size.

Judging from the second arm in that alcove, and the day's Star Wars marathon, it is. Stretching out my own legs, smiling at the other arm's mother, we mamas settled into our own alcove. A couple of feet away, a voice commented on how badly Palpatine had aged, while another muttered agreement. And a good thing rippled outwards from the shared IVs, into a better thing.

It's good to have a mellow day, relaxing in a freshly redesigned alcove and cosy armchair. It's better yet to share that day with a friend. And best yet, with a blood brother.*

And that is the photo that I wish I had taken. Dang, blast and blergh. Instead, the photo that I was able to take today was this one:

Many thanks to the chef(s) of the Children's cafeteria, who rescued an embarrassed mama who'd somehow provided two lunches to one child. The other, lunchless child, feasted happily on a fresh batch of french fries, made in a a closed kitchen with specially prepared, Imperfectly allergy-friendly deep fryer. I'd like to think that my ample supply of orange juice, cherries and crisp apples helped make today a gustatory pleasure, but let's be honest: fries? with appalling globs of ketchup? rock.

And so does Bill, who made them.
*men and boys with bleeding disorders call each other "blood brothers." For any number of reasons,whether the loneliness of the rare condition, or the ragged remains of the post-HIV/AIDS bleeding disorder community, the term is a particularly poignant one. Of course, the guys also call each other "bruisers," which goes to show that poignancy can only be sustained for so long, before - no. Better not to go there.

a wince, a wheeze

Oh, BlogPress, won't you let my postlets go? You've gone and eaten a picture-rich Chanuka post, written expressly for the absent grandparents, and hello? Greedy guts? Chanuka's over.

(grump, grump, grump, grump)

Oh, but who can stay grumpy when the kid's turning red and shuddering with laughter at my elbow? It is apparently beyond hilarious that, after being corralled by his domineering mother, he forgot - and crocheted ten stitches in the wrong direction. Think of a dash, written on top of a long pair of parallel lines, and then add momentum. Reaching for the next set of loops, the kid had to wrangle himself into a pause long enough to figure out what had happened. Laugh with me, he's inviting. I'm absurd, I'm contagiously ridiculous.

And now he's toppled over. And is writhing with silent, percussive laughter on the floor. I do believe that I'm being invited to pause, and admire his commitment to the role. Yes? Ah. Yes.

I'm happy to beam at him, as much for his own pleasure in his humor, as for the kid as a whole. Oh, but it's been a good few months for the boy. A year and more of things starting to fall into place...lessee. Need a narrative starting point, um - ah.

About 18-20 months ago, our car was periodically noisy. The Eldest would get in, pause, explode. Cause? bah, said the explosion. Causes are for lesser minds in search of a trigger for moments of emotional emphasis. 

Right, said the mama. And learned that one cannot duck effectively while wearing a seatbelt. Nor while keeping an eye on the road.

When the explosion was on coffee break, the car would be offered the dulcet tones of the whinge. My seatbelt's too tight, we'd be informed. Or, failing that, my shirt is too tight on me - why do you buy such things? Fists would fly in the back seat, the whinge would climb towards a shriek, and the mama towards a roar. Oh, it was a grand, grand time. And in the classroom, it was no better.

Let's talk about behavior, the teachers would say. He's definitely a class clown, but the trouble is that he doesn't - stop. I ended one parent-teacher conference with my head in my hands, and a teacher reassuring me, but we still love him! and thinking, sure. For now. And on the day when I was requested to take the kid home, after an out-of-control episode, I sat in the car, staring at the Eldest.


What happened?
The kid looked at me, his eyes clear and troubled. I don't know.
I looked back, searching, and found only that I believed the kid -  and realizing that, wavered on the edge of tears. And so did he.

When we leveled the asthma question at the doctors, at the kid, it was a wavering, wobbly one. The kid's lung capacity was 100% of the expected capacity for a child his age and size. But there it was, the tight chest, the rapid, gasping breath, the sudden snaps of irritability and nervous energy. Anxiety can make things worse, said our pediatrician, thoughtfully, and we all nodded. So can patterns, habits of emotional response, I mused. And internally, quailed. Anxiety is an old friend, and a squishy, oozing one. Hard to get a grip on the dude, but he's always lurking and at least familiar. But not, in our lad, pathological. Diagnoses carry their own burden, but they can also set you free - giving tools specific to that diagnosis, tested Things To Try, and that crucial short list of Things That Just Suck. I considered oozy, slippery ordinary kid stuff, and weighed it against the crush and weight of the diagnosis. And rather preferred the medical to the mundane. Did we get to choose?

Maybe. Maybe not.

What if it is anxiety? What if it isn't? The allergist and pediatrician urged us to try a month-long course of preventative asthma medicine. A couple of puffs of the inhaler in the morning, a pair at night. Tracking his lung capacity each time, looking to see if the big dips in capacity drop as the month goes one - and as the kid relaxes. We hesitated for a long pair of months. Steroids, even in low doses - daily? And yet, prophylactic medicine is something he knows, something that he's seen us trust to control bleeding. Can he let himself trust prophylaxis to control breathing, as well?

He could. And hugged his lung capacity measurements, the p'flometer, he called it, using them to reassure himself that all might just, possibly be well. A few weeks later, those lung capacity numbers trailed into relative unreliability. pphhhht, blew the kid, and rolled his eyes. And PUHPHHHHHHHHHTTTT! blew the kid. Thanks for the data points, the Man sighed, and tossed a third of them. But nobody could argue with the jump. His lung capacity increased by 42.2% (saith the Man), and we all stared. He's making his own rules again,  I muttered.

And grinned.

The teachers smiled back, politely puzzled. He's the class clown, they told me, and waited to see if I winced. I did, dropping my head onto one hand. But he can stop when he needs to, they told me. And his sense of humor is really quite good. Inexplicably, I began to choke. Swallowed. Resisted the urge to wheeze. There are class clowns who aren't funny? A twinkle from the teacher on the end of the table, and, oh, she said gently. Oh, yes.


And winced.

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.)

six months later: a hope in three doses (updated 11.14 am)

(as before, this post will be updated as new information comes in.)

2.15 am: if I don't go to sleep, will tomorrow not come? Or are the sleep-deprived the only ones so silly as to think so? Tomorrow is today, anyway, and today is the day that the Eldest returns to the allergy clinic, and drinks milk. Straight up, people, down the hatch. And maybe, maybe, maybe, six months of eating this three to five times per week, that four to a grueling seven times per week, and oh, yum! those two to four times - maybe it will have worked.

Or not, and he'll have a reaction. But what if he doesn't? What if he's beaten the allergy? I'm teetering between hope and a deliberately squashing cynicism, but I'm pretty sure I know which one of the two is keeping me awake.

8.22 am: Just arrived, says the Man, and my breath catches. Okay, then. Here we go. He'll spend the next little while, I'm guessing, handing in the paperwork that charted the Eldest's every bit, sip and bathroom run for the past three days, the stack of recipes, package labels and yes, even wee jar of poop. The kid's gustatory history for the days before today will be scrutinized and detailed to a degree that astonishes me - what on earth could the clinicians hope to learn? And will they tell us?

After the skin testing, the weight, height, placing the IV (in case of reaction), etc, they'll give the Eldest three doses of boiled milk. It's the last hurdle in the trial, the kid having already passed the dairy muffin, the cheese pizza and the rice pudding challenges. If he can handle the milk, then the (dairy) world is his oyster: any and all that he wants, for one month. If not? We have no idea. But I am completely, 100% sure that I can drink the milk, the Eldest told us. And honestly, he was probably in a better position to know than we were.

8.42 am: You know, this time six months ago, I don't think I was having nearly this much fun. The Toddles, all striped pajamas and dont-cut-mah-hair-ma grins, is sitting in my lap and laughing with me over the irrepressible, wonderful Tiffany Ard. (He shares her opinion on desserts and quotation marks, by the way.) And we're arguing over the best place in the world - is it curled up in mama's arms? Under the warmest covers ever (in a coincidentally freezing room)? Or at the pool, where the Grandmere might possibly maybe take him - if, of course, he makes it out of pajamas?

The Toddles is considering the matter, he says. is america the best place to live i typed this, he muses. And yes, typed. See? Deep philosophical thinking happens best in pajamas.

He's brought six tissues to help us while we think, because we both have streaming colds. He's graciously given me three so far, and I have three! three! left, he says, delightedly. And we're killing time until the Man's next report....which is here!

8.58 am: Skin test: boiled milk virtually non-existant. Raw: smaller than hystamine! writes the Man, somewhat hystamine himself. And so am I. The histamine control tells us the baseline response to histamine i.e., how big the hives are), but the Eldest's response to dairy? His body can barely be bothered noticing it's there. Oh. My. The Eldest smiled and calmly wrote fuk and ass in Bananagram tiles, while the adults fluthered around him. Ask him if he can make "quotient," I wrote back. The Man sniffed. Already made "quarter" and "quail." The Toddles expresses his admiration by running around the kitchen, starkers.

9.45 am: Eldest says he has a scratchy throat, asked for basin. Will call in 3 minutes. When the Man calls, he tells me that maybe, the kid panicked, maybe not. The urge to vomit might have been from a sense of tradition, or a true reaction. Or the family virus. Who can tell? The Eldest, toppled from a supreme confidence into a shaking, raw bundle of nerves, is hardly going to help. They don't think it's a virus, the Man tells me. They're not sure if it's the kid, being scared. We're giving it some time - and he told the doc that french fries might help. She laughed.

10.01 am: Daddy asks: is it possible that the milk would go down better with chocolate? Jing jing! Oh, yeah! ....so far, so good. The Grandmere, sweeping the Toddles off to play in water, pauses mid-sweep to admire the allergy team's consideration of the psych angles. I admire the determination of the chocolate-allergic dad. And yes. Maybe, we hope, it will be better with chocolate. Two doses down, one to go. The second dose - the one with chocolate - went down fine.

10.12 am: The Man calls. The third dose of boiled milk was also chocolate, and he's complaining of the scratchy throat again. We both take a moment to sigh, silently. But he managed the second one okay? Intriguing, no?

I'm getting the hierarchy here: good news = text message, wry news = text message, be on alert news = text message, bad news = phone call. Dose three (of three) is happening now, but a strong waft of anti-climax is in the air. Basin? Is that all? Pretty wimpy reaction, if you ask me. Scratchy throat - but not painful, tight, or closing? I'm caught, pulled between a sense of fierce, stubborn progress, nails dug in, holding on to some sense of perspective - and the internal toddler, jumping up and down and screeching gimme ice cream!

10.20 am: game over. The second dose was soy milk, the Man told me. And they want us to continue the protocol. I groan. The Eldest was so seriously, completely done with the muffin-per-day, he was moaning and wailing over the four-rice puddings-per-week, and willing to be brave about the pizza. Shit shit shit shit shit shit shit.

And persuading him to keep on for another six months, when he's failed the milk challenge once? Not friggin' likely.

Oh, arrgh. Hope, she be a bitch.

11.08 am: the SIL calls - do I need anything? YES. I need something to make this better. Lessee.....I have a box of Honeypot Ginger Cookie mix, and maybe we can have a Who Needs That Dairy Stuff celebration dinner? She nods, and picks up berries, popsicles and general sympathy. Plan in place, I think I can go take a shower now. Brush my teeth, maybe?

Time to admit that I can't hide in the frozen, poised for something to happen moment of waiting, and shoulder my way into the realities of the day. No dairy. Some dairy. More than we had six months ago, more than we thought possible ten months ago.

So. Here we go again.

and the Eldest bites back (part three)

Don't let anyone tell you different: a diagnosis may be a blow to the solar plexus, it may be the shatter that presages your world's splintering and collapse, or it may be the best thing that ever happened to you. Sometimes, it's all three at once.

Ours was more like a great, galumphing oh, duh. Hand smacks head. Jaw drops open. Silence, then a blathering, spluttering set of epiphanies.

Who hugs you at school? I asked him, OT report in hand. His face slumped, suddenly sad. Nobody, he said, and we both stilled. Sat there, each waiting for the other to fix, or understand, or explain this. He curled up in my arms, coiled, then relaxing into satisfaction. As if, I guessed, the extra cuddle was sloshing, spilling retroactively into the hug-less school day. Oh. Duh.

I carried that melting-into-good moment with me, and used it in the face of the Eldest's uglier moments. I began hugging him at pickup, while on good days, he made resigned faces at his friends. And maybe the hug sloshed over, or maybe it didn't, but there were fewer days when he yelled at me for showing up, the anger, the shrieking, swinging a fist that almost-but-not-quite connected, the explosion of a kid who can't handle anything more. He had more days when he knew that the hug was coming, and it would let him rebalance himself. Once, twice he smiled - and on one astonishing day, he chattered happily all the way home.

My days wobbled, ousted from their solid orbit between the poles of Horrific Dash Out the Door to Duck and Grit Teeth Pickup. No fool me, I knew a solid duh when I saw one. And I began to spread the OT's advice around liberally.

A pleasantly heavy layering of blankets, and the Eldest began to sleep better - managing many nights in his own bed. Some of those nights, he managed without his brother wrapped around him, to the protests of the small, Eldest-cuddling brother. When I tried the trick on the Toddles, our bed seemed to grow cavernous and wonderful. Fuelled by slightly more sleep, I began to wonder. Duh?

I stepped into shouting matches, and hauled the Eldest into hugs. Thanks, Mum, he said, suddenly cheerful. I needed exactly that. I pressed a firm hand onto his shoulder during clashes with the Man, keeping the rest of my body neutral, uninvolved. The Eldest relaxed under my hand, pausing, and finding a new gear. Watching, we all four blinked - and I went shopping. Duh.

In a quirky little store, I found fiddly things, of fidgets, as the store owner called them. My son has ADHD, and I stock tons of these, she said, and began lecturing about their various virtues and drawbacks. A week later, fidgets blossomed in the classrooms, and any number of happy little fingers fiddled while their brains worked. And the Eldest beamed, loving that his friends shared his tactile pleasures, certain that anyone else was missing out.

His teachers beamed with him, while the air turned a happy Disney, diagnosed seashell-pink. All was right and good, suddenly. When the Eldest stood next to his chair while working, one knee on the chair - off the chair - on the chair - one foot tipping the chair backwards, that was fine, the teachers said. He often didn't join the others for a huddle and talk after a game in phys ed, but oh, that was fine, the teacher said. He drummed on his siddur, rather than reading from it - but that was fine, said the teachers, and on and on. Was it possible to be cured by dint of diagnosis alone? The Eldest seemed happier, and I? well, I was insufferably triumphant.

If the Eldest has a diagnosis, then I'm to be vindicated, aren't I? Freed from loving, caring criticism about how I parent, how I should parent, what my child really needs - or ought to do. See? I could say, he's cracked. That's why you should shut up and let me do this my way. Or, see? I could tell my Guilt-o-Meter, he's cracked. That's why you should flip that arrow back to zero, and let me off the hook. Neener, neener, neener, o ye People Who Know Better. And I sneered, happily.

It was fun, but frankly small, even petty in light of the kid himself. And to be honest, I was awed by his bonelessness in the midst of a hug, the sudden wash of peace when he found himself in my arms, or the sharp, even painful spike in energy and motion when he swung into motion. Touch and peace, motion and whooosh! - these are the two poles of the Eldest's diagnosis, and they are inevitably imbalanced, balancing each other while individually extravagant. Richly peaceful; screechingly in motion. Watching the kid teeter between these poles. knowing finally what I was seeing, the sight outweighed any neener-neener. I began trusting the diagnosis, and bullied our way into an occuaptional therapy clinic that specialized in multiply-cracked kids. Balance, not broken, I told myself, and repeated this silently as I drove to the OT appointments. Learning, not cracked. Have diagnosis, will fix. In the back seat, hugged and fed, the Eldest muttered to himself, drawing diagrams of possible coups.

The OT taught us about engines, and how they can run high, too high, or too low. Sometimes, rarely, just right. It was classic self-awareness, self-regulation stuff, and I was all for it. She taught the Eldest methods for giving himself measured bits of motion, without throwing himself into the whee, whizz, bam! of bouncing-off-walls motion. She asked him to chart his engine at various points in time, gave him cards and photos to use in selecting his tools. But he despised it all. Growled. Roared - and then, in true Eldest style, became very, very calm.

And quit.

This engine thing, he said, doesn't work. Sometimes my engine is supposed to be high. Like in gym class. Sometimes it's supposed to be low. I eyed the hairsbreadth between me and a shriek, wondering if he was right. The Eldest refused to discuss engines, tools, or to actively regulate his behavior. An old pro at pain-management tools, tricks to be self-aware, the kid now sneered at suggestions that he might want to choose something to help him sit and do his homework. Something to redirect him when he was fighting with his brother. Something to help him be a better teammate? I suggested, and he roared.

After school, I was pulled over by the teachers. He's having a hard time, they told me. It's been a rough week. And then, another.

Maybe, I asked, eyeing the end of my rope, and scenting the lower third of his bucket, maybe, the kid's right? I sat down with the Eldest. Okay, I told him. Forget the engines. You are right: they are wrong. Let's try something else. And truly, we did.

We mapped out speed zones - low, medium, high - and made lists of what activities fell into each category. We designed a speedometer, and found a plastic box for him to carry it in. There! I said, triumphantly. This is better. And I relaxed, certain that the problem was the tool, the Eldest's understanding of it, and especially his sense of ownership, of investment in that tool. We've fixed it, I crowed, and the adults happily anticipated success, while the Eldest tried gamely for a few days. Then quietly gave up, choosing diplomacy over the picket line.

Is he using any of the OT's methods? I asked the teachers, curious. No-oo, they said, slowly. Thoughtfully. When we ask him about his speedometer, he just takes that as a different way of telling him that he needs to be better behaved. And the inevitable followed.

Duh, I thought. And wondered if his real rebellion was against being broken. Sproinggg! went the Guilt-o-Meter, and I rather thought that I deserved it. The Eldest dropped his tools at the bottom of his bottomless backpack, and left us staring at the flattened, battered diagnosis.

Maybe, said the OT, we should do a few more sessions, after all. And nobody, I'm sure, sighed.

thus spake the OT (part two)

The Toddles, deprived of a rather tidily built foil, is now exercising quasi-homicidal tendencies on some hapless bananas. While I'm rethinking the chances of banana bread, the Eldest is muttering about not having to do some bit of homework that he will, in fact, have to do.

While a peaceful moment staggers unconvincingly through our home, maybe I can start getting this post down on, well, electrons.

[the Eldest begins to wail something about there not being any math homework, there never is any math homework. A pause is offered by all parties, followed by some truly offensive parental logic. But I don't have my homework folder - I didn't bring it home - I NEVER bring it hoooooome. More parental logic is about to follow, and any guesses at the register of the italics coming thereafter? Right.]

So, (getting the post down ignoring whatever that was that went clunk, the small, fascinated voice saying, oh.) it begins with paperwork.

I happen to be fascinated by the paperwork that I'm given by medical types. As I fill it out, I play a mental game, trying to guess what the medico would think if I said yes to question 5, or frequently to question 12. This mingles gently with my awareness that I really want the doctor to like me. To think I'm sensible, possibly trustworthy. It's something I'm a bit embarrassed about (what if the cool kids don't like me?), but I'm pragmatic: a good relationship works better. When doctors treat me like a semi-sensible, primarily reasonable person who likes multisyllabic words, I am a better patient, and the relationship produces better medicine.

The paperwork isn't really an opening salvo, it's more of a formality. The real relationship building happens when the doctor walks into the room, I think - the paperwork just seems to set a stage. Gives me a chance to rehearse a little. Gives them (assuming they have time to read it) a warning about what's sitting in the room. But while medical questionnaires seem to ask largely verifiable, historical questions, therapists' paperwork seems more, oh, fluid in the kinds of information sought. Skewing them is, I suspect, much easier.

Ever so gently, I could hint that my child is very anxious - but maybe only tells me about it. That he melts down under circumstances that the OT might never see, could approximate but not reproduce. Maybe he had a bad day when you saw him, I could say. Maybe he had a very good day. Looking at the paperwork, I began to suspect that I had an alarming amount of influence in this relationship, that I had a frightening ability to talk/write/explain my kid's way into a diagnosis.

But it didn't occur to me that the tables were about to be turned.

I started answering questions, threading my way through precision and my own uncertainties. But the questions, simple as they were, started hammering at me. What are his sleeping habits? (don't ask) What are his eating habits? (when he can eat the food?enthusiastic. sometimes.) Does he like to run? (god, yes) get messy? (sometimes) dangle upside down from the monkey bars? (never, except when he does) Does he like/love/snore through/hate fireworks? (hate) the flushing of public toilets? (winces) Does he wiggle? (yes) fiddle? (yes) droop? (yes) what was toilet training like? (for me or for him?) The questions went on and on, and by the time I was done, everything seemed pathological.

What does it mean that the kid can't sleep in one bed? That he rolls around at night, is impossible to sleep with because he rubs his feet on my shins, needs to have another body (thankfully, his brother's) wrapped around him? Should I worry about that? What about his anti-firework stance? the bursting into tears during the shofar blasts on Rosh Hashana? I hadn't worried this much since I was a new parent, and frankly, I hadn't missed the experience much.

My sense of what was okay, or workable, was slipping away - overshadowed by what was Capital N Normal.

Of course, I said so out loud. And the OT nodded, agreeing. I asked her how she could make a judgement, based on an hour and a half of playing with the kid, a brain-tangling set of questionnaires, and she smiled wryly. With the clear cases, she said, there's no problem. But with the more borderline cases, it can be tricky. But that's why we follow up with more questions, if we have any. Oh. Your son is bright, and he's learned ways to cope with his bleeding disorder and allergies, which is good, because he could apply those methods to other challenges. But it also means that he's smart enough to know what answers to give, and that can make it harder to figure out what's going on. Oh. I echoed her, thinking it over. He's got enough experience with doctors to know what answers they want to hear. Right, she told me. We see a lot of kids like that. Ah. Experience with mothers like that, too.

Just in case, I handed her some questionnaires that the Man had filled out (for the uber-OT folks, who were also uber-not covered by insurance, and uber-didn't care), to offer a different perspective. More data, I said, and watched her smile manage to balance appreciation with a gentle tolerance for the overeducated, meddling parent.

And a month later, we had her report. Based on reporting by parents and observation by OT, the Eldest has a sensory imbalance in regards to motion and contact, both being under-sensitized. Therapies are recommended, roughly 8 or more visits to assist the Eldest in learning self-regulation techniques. And then there was a bibliography, including something about engines and how they run - a concept soon to be enthusiastically despised in our house.

I sat down, landing on some of the evaluation papers, feeling unexpectedly gut-punched. I'd walked into this mess, eyes open - or so I'd thought - but somehow, I'd managed to keep the rosy lenses in. This, I'd told the learning guru, is not what I'd expected you to say. It wasn't what I'd expected the OT to say, either. I thought about it, about the kid who hates crowds, and spent years hiding upstairs during his own (small) birthday parties. The kid whose shrieks of laughter seem to be higher, shriller than his friends, whose joys will inevitably be higher, and his challenges probably harder. Did this label fit him? I looked at the Eldest's binky-sucking, ancient sweatshirt rubbing, loud noise-hating brother, and mentally filled out his paperwork. Oh. Did this label fit him, too?

Could we trade the label in for an explanatory paragraph? I heard my father's voice, warning about medicalizing what could otherwise be an ordinary, messy life.

Watching the Eldest wriggle, pop out of his seat, and run, I wasn't sure. I can't stop, he told me, and ran down the hall. He flung himself into the air, bouncing off of a wall, and ran on, giggling - while something inside me quailed.

But still, does it fit? Cautiously, we accepted the diagnosis, and watched puzzle pieces fall into place. Until the kid himself staged a sit-in.

next post: the Eldest respondeth (part three)

whither the OT? (part one)

Okay, so you might recall that oh, back in September, maybe? I mentioned a drift of stuff, and an OT report buried in there somewhere. Well, it was. And it all started last year, with a teacher grab & chat:

Teacher: just so you know, the Eldest has been disrespectful in class today.

Me : oh, no!

Teacher: yes. This is a real problem. You will speak to him?

Me (calculating bucket volume, withdrawal quantities): absolutely.

And I did. And then I did again. And was informed that I needed to do so again. I changed gears, shifting my tone from understanding to irate. Each time, the Eldest promised to try, and I do believe that he did. It was an uphill battle: the kid just didn't like this teacher, and offered me any number of reasons why not. Listening to other parents, I realized that the Eldest was not unique in this, and changed gears. After a long chat with the boy about being respectful to those in authority, be they oh so irritating to folks under a certain height, I went for an end run.

If I complain about a teacher, then I am yet another mom, blaming everyone but her kid. But if another member of the school has a professional concern, ah, well. That's different. So I sat down with the school's learning guru, and asked her to offer a fresh pair of eyes. Maybe there's something I'm missing, I said, certain that there wasn't. I'd love to hear what you have to say, I said, sure that I already knew.

What could follow a set-up like that, other than the part where my jaw drops faster than my hand can catch it? Right. He seems to need to move more than the other children, the guru told me. He's mostly moving to get some sort of physical contact with something - it's disruptive, but doesn't seem to be deliberately so. Oh. I took furious notes for roughly half an hour, and then stared at them. Are you talking about ADHD? I asked.

Her pause scared me. Not necessarily, she said. What do you know about sensory integration?

Um, I said.

My understanding is that sensory integration is essentially when one or more of the senses is either too sensitive (everything sounds very, very loud, or most fabrics feel like sandpaper, and the tags on that shirt are pure evil) or under-sensitive (noise! need noise! need textures to feel, rub and roll in! Need to live on the swings, back and forth, back and forth, whooosh-up, whooooosh-down, whoooooooooshhhhhhhh). There's more to it, of course, and apparently you can have one sense turned way up to hypersensitive, and one way down, to under-sensitive, and a kid frantically trying to feed the under-fed sense (under-sensitive) and protect another, overloaded sense. Or so I understand.

But I have to admit that I learned this from sources other than the CDC, and that makes me a little, oh, twitchy.

From what I can tell, sensory integration dysfunction, or sensory processing disorder is a big, hissing argument between experts, with kids tangled up in the middle. I know parents of autistic kids who swear by the therapies, who talk honestly - poignantly - about the effects of the condition, and there are certainly any number of earnest, if not enthusiastic foundation/professional websites. And a book or two. The diagnosis has been around since the 70s, but there's no entry in the DSM-IV (TR) for sensory integration dysfunction. Will there be in the 2012 edition? Maybe. There are articles in journals. Databases being constructed. Hmmm, said my data-loving guy, and valiantly tried to raise a skeptical eyebrow.

Certainly, it didn't bode well when we discovered that the local experts did not accept insurance. Nor, I was told, would our insurer cover therapies for sensory integration, when provided by an otherwise in-network medical personage. Although, our go-to insurance person said, this was not because of the lack of formal diagnosis - it's an occupational treatment, not a medical one, said the nice lady, and both sides braced for the argument.

(purely gratuitous note: I won it. On a technicality, but still. Ha.)

Sitting in the guru's office, I smelled a concerned parent trap - one of those things that you can't ignore (concerned, right?), because it might be causing your kid problems, and you can't quite dismiss. So, you end up feeling obligated to plunk down hours, co-pays and oh yes, brain space on it.

And oh, I know that a kid with one medical condition can start a collection of them, as other diagnoses march in and politely join the group. Maybe it's because there's lots of people who care about the kid, and they are watching. The Eldest's grandfather calls it the medical microscope, and when it's on, says he, seek and ye shall find...something. But I wonder if the working assumption is that if the kid's cracked in one way, then surely he's cracked in another.

Silence fell in the room, while the guru waited. And I knew what I had to do: the unspoken deal between a school and a parent of a kid with a bucket is, we take you seriously, and you take us seriously. It's fair, respectful, and makes for a decent working relationship.

I settled on a position of sincere skepticism, and asked politely for second opinions. The school learning guru agreed to talk to some relevant medical types who know the Eldest, and heads were put together. Notes were compared. Because, I pointed out, a kid who is (alas) annoying, who clowns or is uncooperative could be a kid under stress. And some degree of stress is the way of things when you have a chronic condition. So, before we slap another label on the kid, let's take a moment to think about whether this is just an old wolf, in a new outfit. Please?

When the huddle broke, the guru's question still stood firm.

The coping clinic, a.k.a. psychiatrists at Big Famous Local Kid hospital who specialize in kids with chronic medical conditions, said that roughly 20% of children with chronic medical whatnots, also have some sort of sensory out-of-whackness. The psychiatrist and nursing chief at Hole in the Wall told me that their kids with diabetes and bleeding disorders have amazing pain tolerance - and we hemo-mamas tend to say the same. High pain tolerance could be the result of desensitization, I was told. And nobody laughed at the idea of putting this sensory thing and the Eldest in the same box. It's worth looking into, I was told by the coping clinic.

And I just didn't know if I wanted to agree.

The Eldest has a humbling array of coping mechanisms, from cuddles to thumb-sucking (with his dentist's reluctant approval), to the particular, odd sensation of the skin as it slides over a bony joint. Try rubbing the skin over your elbow sometime, sliding the skin over the bone. Does that feel good? It gives me the willies, but that soft-bony combination does something oddly soothing for the Eldest. A solid, loving squeeze makes something in the boy relax, resetting some sort of emotional metric. When I throw in a small rocking motion, he becomes boneless. He goes into my hugs wired, frustrated, furious, shriekingly joyous - and comes out a solemn-eyed happy. Calm. Like whatever he's carrying at that moment got rebalanced. But couldn't that come from the love, wrapped around him and holding him close? The silent, snug reminder that I love you, and I'm here?

Maybe. And maybe, echoed the learning guru, the coping clinic, the things I read and my own instincts. And so, sensory integration? I said, staring at my pages of notes. I've never heard of it. And the lovely, thoughtful guru at the learning center explained. You start with an occupational therapist's evaluation... and we did.

Oh, and the teacher? Ah, well, said the guru. And smiled apologetically. You might want to cut your losses there, she sighed. My shoulders slumped. If she'd disagreed with me about the teacher, then I'd have labelled her as a Person to Manage, but not a person worth listening to. But she agreed, offering a number of thoughtful observations while clang! went the concerned parent trap, and ouch, went my foot.

And possibly also the kid's.

next post: what the OT saith (part two)

scripting a day (or two)

The holiday season has begun. Happy hols to all, and to us a merry appointment.

Okay, appointments. Because, yep, this is also the season when my lads make the rounds of their various doctors. The allergy team (twice, in two cities), the hematologists, the coping clinic, the various labs and clinics that administer the tests that need to be done before the actual chat with the doctor (because the "let's test, and see what turns up and THEN talk" line is not so very useful when you have to wait a month or six to have an in-person conversation), and oh yes. The pediatrician.

Last week, we began. Skin testing for the Toddles on Monday (two boys! tiny room! no scratching allowed!), and pharmacokinetics* for the Eldest on Wednesday. And while the skin testing was mercifully brief, the 'kinetics took - always take - all freakin' day. 7.30 am we put in the pair of IVs, 3pm we staggered (okay, I staggered) out to the elevator. But if I could've scripted them, the two days could not have been better.

We walked into Monday after the Eldest took a firm stance on the question of skin testing: it is, he shrieked, unbelievably painful. He handed out protest leaflets to the Toddles, and had to be taken aside, firmly, and told that it is not okay to freak out the kid before testing. Not going to help. Just going to make him scared, and fear = pain. Got it? Begrudgingly, the Eldest got it.

And forgot it.

I prickled my nails on the boys' backs, demonstrating the test. A stomp and roar later, the Eldest had been collared and exiled to his room, there to brood on the unfairness of the mama and the cruelty of the medical world. And the Toddles, close to tears, snuggled with me and read a book about a kid afraid of needles. I'm going to do that, he told me, pointing to a page. I hugged him, and braced for the morrow.

When the Eldest blinked, looking up from his book. Are they going to do the skin testing soon? he asked. His brother gave him a fabulously incredulous look. The testing is done, he said. And it didn't hurt a bit!

In the corner, I did not smile. Nor did the corners of my mouth twitch. (heh)

And then it was the Eldest's turn.

If the Toddles shone on his day of trial, the Eldest was allowed to stand in one spot, while Children's flung glittering confetti at him. Because this was the day when the Big Apple Circus clowns visited the infusion/boring long test room, and taught the kid a magic trick.

And lo, there was delight.

Where there was a paucity of delight, there was a splattering paint machine, a child life person to keep the paint a-flowin', and nurses who really did not care if we left paint fingerprints on, oh, everything.

and lo, art was made.

The artist in residence stopped by to keep the creative juices flowing, but she was asked to wait a bit: the boys were busy eating the special batch of allergy-friendly french fries that the cafeteria's head chef had made for them. Because, y'know, one must have priorities.

Happily, she understood that. And waited until oh, there were rich watercolors on thick smears of crayon and happy paintbrushing boys.

Oh, had I been able to script this day - this pair of days - it could not have gone better. Children's shone for my boys, and they gleamed right back. We are, I know, absurdly, lushly lucky in the hospital(s) that care for our boys. The reality is the testing, and we'd adapt to that because we must. But the gift is being able to sort of revel in that reality, and to roll around in all of that joy and caring and luxurious resources, IVs, hives and all.

Because it is, after all, the holidays....

* the goal of this test is to see how the Eldest is using his clotting meds. For years, he's had an oddly fast and irregular (but reliably irregular) way of using up his meds, with half of the dose vanishing in 30 minutes, then another half in 2 hours, and so on. By testing regularly, we can adjust his preventative treatment and bleed management to suit him. It's a very good trade-off for a serious PIA day, because in a pinch, I know exactly how to calculate his ability to handle the wallop du jour.

the eyes have it

Dear school,

please excuse my mom for being late today. She seems to have had bit of her brain leak, somewhere in the 112 minutes spent in TJ Maxx. There were words to describe the experience, but mostly all she says now is aaaaaaaaagggggh.

sincerely, Eldest

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

Point the First: we have a wedding on Sunday

Point the Second: I did not know this, which might possibly explain why I did not a. arrange for a babysitter or, b. buy a present

Question: how on earth did the Man end up with the wedding invitation?

Point the Third: I actually have nothing to wear. Not a dramatic, arms flung wide nothing - I actually do not own a dress that is appropriate to wear to a wedding. (For the sake of brevity, I'm not counting the ones that really, holy moly, do they not fit.)

Point the Fourth: Clothing shopping is, generally speaking, a timeless sort of hell. So I don't do it, except under extreme duress, such as when I'm about to visit my parents. Then, I might go - but always to the same stores - and pull a few things off the (sales) racks - but always in the same colors - and then mutter something about needing to wear something other than black/grey/blue/brown and put things back. It's an astonishingly effective experience, and may account for why my clothes are still all black/grey/blue/brown. And not increasing in number.

Point the Fifth: there will be any number of people at this wedding that I've known since grade school, high school, etc. Aaaaaaaaaaaaaaaaaaaaaaaaaaaaaggggh?

Point the Sixth: this would be the week when I pick up a lovely, oh so delicately colored zit. Smack on my nose.

Question: 112 minutes in TJ Maxx?

Answer: because if you are going to have a soul sucking, jaw dropping (who wears THAT? and how does it stay ON? - Judge's Note: extra points for saying that out loud) experience, now would be the time. And that is an excellent place for it.

Point the Seventh: the Toddles appears to have conjunctivitis.

Question: if your child has conjunctivitis, can you haul him to the local thrift shop to bargain hunt? If your child has conjunctivitis, is this an excuse for staying home from the wedding to tend his poor infected self? (um)

Note to self: child with conjunctivitis + allergies = child with three possible types of conjunctivitis (bacterial, viral and allergic). Therefore, child with conjuctivitis is not = child with clear course of treatment. Which means that child with conjunctivitis, if bacterial = child who may remain untreated for an additional 24 hours after visible symptoms begin, to rule out non-bacterial options. (The Imperfects are a little low on antibiotic options, and have been kindly asked to use as few antibiotics as we possibly can. And even then, to use fewer yet.) Conclusion? child is likely to have a compatriot in eye-ooze unless we're really, really lucky.

sigh.

(unless the eye-ooze upshot is that I get to avoid the whole hose-and-dress thing, in which case, whee! That's almost worth 7 days of half-nelsons at dosing times.)

on the care and management of husbands

I feel dizzy, the Man commented. 

Four feet ahead of him, pushing a sandy, exhausted Toddles in the stroller, I nodded, noted and filed the remark. We'd spent hours at the park that day, relaxing in the shade while the boys played, picnicking on a patchwork of towels: luxurious. Walking home, it occurred to me that dizzy wasn't  the word I'd expected the Man to use on this day, at this time. Tired, sure.  Sleepy, oh I'm right there with ya. Relaxed, absolutely. I tucked away dizzy, sure that I'd understand it eventually, too busy floating on the pleasures of the afternoon to muster a proper worry. 

And oh, that afternoon.

The Toddles had stood under the jets of water, soaked and fascinated, his mouth open with pleasure - when it wasn't netting water. I'd filled my mouth instead with the tastes of summer shabbat: this week, it was Thai basil, grilled chicken, scallions and roasted plums. Ooooh. The Eldest, bolted barely enough to score dessert, then vanished to experiment with hydrodynamics. Dripping and banned from the sand until he dried (somewhat), he then found that the snazzy brushed metal of the park's slide and climbing structure made wonderful, resonant sounds. Boom, bim, bim boom, said the structure, as the Eldest swing his arms, concentrating. Nearby, the Toddles spluttered and laughed at his faceful of water while I grinned at the Man, who excused himself to help the percussionist. 

(and was promptly sent away, percussion being a solo affair, it seems)

So, I feel dizzy, the Man commented, and I barely blinked. Walking along, ripe with relaxation and smiles, I suggested that perhaps skipping his morning coffee did not help. It hadn't, as it happens, but that was merely ancillary.

Days before, the Man had felt dizzy - a moment here, a moment there, but nothing worth mentioning. He's made of stern stuff, our Man, and will lower his forehead and keep on keepin' on even when he's sick. I've yelled at him for it, and accidentally exploited him when he's done it. Sometimes, irritably, not so accidentally. The Man's lack of care for himself is legendary among the adults in the family, and hopefully not as well known to the children... Although today, the Eldest asked why the Man doesn't carry his own EpiPen - he carries one of mine. Um.

Over the week, our stubborn, determined guy felt his world teeter, then twirl around him.  Thursday was a fast day, and the Man felt - like the rest of us - lousy. And dizzy. He racked up some dehydration and didn't do much about it, hovering on the edge of slightly desiccated until Sunday. When the boys and I came home from a play&celebrate to find our guy in bed.

He had not eaten. (oh, wait, said he, a piece of toast. And, um, some jelly beans) He had not drunk. (well, perhaps some coffee) My raised eyebrows aside, it was clear that he could do neither now. And oh, he felt sick. I cultivated an air of mild irritation and pleasant care, and offered him some apple juice before going off to find out why Shaymin Level X was crucial enough for fratricide.

No apple juice.

No water.

Lemon slices? no, not helping the nausea. And urgk, the spinning room. 

There he lay, his eyes shut. I considered worrying.

The Man admitted at this point that no, he did not have a primary care doctor for me to call. I tamped down on a lecture that I'd given cyclically over the past couple of years - clearly, it hadn't been effective. Right, then. The ER it would be.

Dizziness is, apparently, a fairly common cause for a run to the ER. It can be triggered by stroke, by blockage in a major vessel leading to the brain, by dehydration, by something upsetting the inner ear - or even a canal of the outer ear. There could be a tumor in the brain, a viral infection, or a funny, spasmodic twitch of the eyes that fools the brain into seeing motion in a still, placid world. The eyes move, the world does not.

If I'm being fair, it sounds amazingly uncomfortable. My poor guy, staggering from the car and acting like he had the world's nastiest case of car sickness. He had an unstable, twirling world, and a zip through the potholed streets in our neighborhood had managed to give his internal twirl a nice high-kick and bounce.  

splaaaat.

So he won the door prize: IV fluids, dramamine, and a rookie doctor digging a ginormous chunk of eeewwwww, funky wax out of one ear. Whoa, said the doc, and carefully saved it. Ah, said the doc's boss, respectfully. That should do it, they chorused. And sent us home, where in fact, that did not do it. And so back we went the next day, this time to a different ER where the Man was again hydrated, prodded and invited to follow my finger with your eyes. The doc grinned, and showed me the slight twitch that was spinning the Man's world round, round, round. But, he pointed out, this muscular fillip should have responded to the dramamine. He offered some IV valium to the Man, and while our lad snoozed, the doc and I considered cheery things like tumors.

One MRI later, the boys were asleep in the Man's hospital bed, and I'd abandoned Cosmo (the Obama's sex life! your g spot!) for Good Housekeeping (spice rubs! pantry soups! remodel on the cheap!).  Muttering, I'd sewn together a felt fish that the Toddles had traced, ordered to be cut and designed. The boys had been admired, and shifts had changed. The Man had been lectured on the usefulness of primary care doctors while I made quiet-ish choking sounds, and had slept through the news that, in fact, he did not have a tumor. Nor a blockage of a useful vessel to the brain.

Sitting in the dark room, the sleepers piled on the beds we'd cadged, I began to breathe again. I'm often the only one awake at such times, it seems, standing guard over my family in the dark. Waiting for news to emerge quietly from corners. At some point in the long, well-trodden hours of that day, my carefully cultivated loving, mild irritation had faded. And I'd begun to worry. Just a little. By midnight, the worry had folded itself, origami-like, into a complex, fragile structure as I waited for the MRI's results. And then I set it aside, collected the sleepers and went home.

Why did you bring the boys? a friend would ask the next day, and I didn't have a good answer. They'd been left with friends on Sunday, but were very clear on Monday that they wanted to be with their dad. So I brought them. Because they wanted to go, and I suspect, needed to. 

Look! I'm learning so much! the Eldest exclaimed, maneuvering cannily.  I knew what he was learning, and thanked the friend who offered to help relocate the boys. The boys would stay, and watch their father take a rare turn at being not-quite-right. And yes, I knew that this trip would probably bolster our family myth that the ER is where you go to be bored and ultimately, fine.  Still, I brought them partly to share the vigil, partly to distract us, partly because we have no fear of emergency rooms, and know that we can ask the nurses for an extra blanket, a couple of pillows, and we can make sock puppets from the silly, thick hospital socks. We can laugh. 

The laughter is part of the mythos, of course.

And sometimes, we do all of that almost incidentally, focusing instead on the serious business of being together, loving and a family in a place that would otherwise leave you feeling silenced and alone.

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

The next day, I had a check-up. Women, mused my doctor, come in to the office for a range of reasons. Men, however, typically come because their wives make them. The doctor paused. Maybe that's why married men live longer?

I went home, and tossed my ideas of respectful partnership out the window. Flipped open the laptop and found the Man an insurance-approved doctor of 20+ yrs experience, evening hours, working in a practice at a major medical center, checked a couple of patient reviews - and signed our lad up.  You've got a check-up in August, I informed my love. You'll be seeing Dr. Z. 

He nodded, and humbly thanked me. I patted him on the shoulder and went to try a spice rub.

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

I'm doing a lot of cooking with the boys this summer, and they're happily recording their favorite recipes in their very own cookbooks. It's a mixed experience, especially when we're getting close to dinner time...but this spice rub was a lot of fun to put together with the Toddles. We smelled and touched everything, and grinding the spices was tops on the Toddles-O-Meter. Eating it did pretty well on mine.

The Tilt-A-Whirl spice rub

1.5 tsp black peppercorns

2 tsp fennel seeds

1 tsp coriander seeds

1.5 tsp cumin seeds

.5 tsp coarse salt

grind in a coffee grinder, or mortar & pestle, if you have a strong arm. Very strong arm. 

I dredged some tuna steaks in it, courtesy of a friend with good taste in fish, heated olive oil in a pan, and seared them for perhaps 3 minutes per side. I'll happily try this again for chicken, and definitely for tofu.

oooh, yum, said the Eldest. That's the most yummiest I've ever had! the Toddles trilled, and briefly set aside his current dislike of edibles to eat most of a slab. With ketchup. (sigh) And our current favorite salad!

Summer's Just Peachy Salad:

Like all my salads, this is more narrative than prescriptive. Or, as the Eldest likes to say, it's a matter of food math. You have your basic elements: green + something onion-y, x something crisp + something soft/mellow divided by something(s) sweet, salty, sour. Got that? Right.

For the specifics-lovers, try the following: 

a bowlful of greens, preferably one of those ridiculously soft, melting farm-fresh red leaf lettuces. Or romaine, if that's what's surviving in your fridge. Or a mix of anything - but go easy on the arugula, watercress and other tangy greens. 

2 scallions, chopped

a handful of pitted kalamata olives (I like Trader Joe's), or some other mild olive - pimiento stuffed olives are probably fine, too

2 rather crisp, underripe peaches

....and anything else you like. Can't imagine a salad that would go badly with toasted, slivered almonds, and this one is certainly happy with avocado, garlic croutons, and many other somewhat improbable things, including (no, really) a scant handful of blueberries.

 

Fill the bowl, then dress the salad. How? Well, try tossing with olive oil, sprinkle with chili powder (or cumin), garlic powder (fresh garlic will come in with big, heavy combat boots and stomp on everything in this salad, so don't use it - and did you ever think I'd say that?), salt and pepper, toss again. Drizzle slightly with a mild vinegar, and toss a third time. Woot!