The Molluscum

Yes. Evan's got it.



What, you may ask, is this "molluscum?" Well, apparently it's a pretty common, low-level virus whose only real symptom consists of a collection of raised, pox-like bumps on some part of the body. The full name of the virus is "molluscum contagiosum."

My first thought when Evan was diagnosed was
"hmmm . . . molluscum . . . sounds like some sort of exotic sea creature."

And when the doctor had asked if she'd been swimming shortly before the bumps appeared, I thought, "yep, it's from the sea all right."

But no. I was completely wrong. The molluscum, it seems, is in the wart family.

Ah, not nearly as romantic as I was thinking . . . more toad-like.

Lovely.

This leads us to the ailment's second name -- "contagiosum."

"Sooooo," I asked the doc, in as nonchalant a tone as I could muster, "I suppose this, um, molluscum, is . . .
uh . . . somewhat contagious?"

"Oh yes. Very."

Okay then. Immediately I thought back to the last time I'd shared a bath with my daughter-- when she was in that "horrible-fear-of-the-tub phase." I couldn't recall if the bumps were there at that time . . .

All righty then. "How does one treat the molluscum?"

"Well, there are a number of options. We can freeze the bumps with liquid nitrogen, treat them with an electric needle, scrape them off with a sharp instrument, or apply what we like to call 'beetle juice,' an acid that causes the bumps to blister."

Did I mention that these bumps were on Evan's bottom? And, did I also mention that I sat listening in absolute horror to this very soft-spoken pediatrician as she calmly described how she could get all medieval on my daughter's butt? That's right, she wanted to go after these buggers with a vengeance, because hey, they're in a very delicate region, one more prone to irritation and further infection.

"There is an alternative to topical treatment," continued the doc.

"Yes?" I looked up, hopefully.

"We can give her a systemic drug that can kick-start the immune system . . . get it to recognize this low-level virus, and attack it."

Okay now, most of the folks who read this blog will recognize the big red flag that appeared the moment this doc mentioned "kick-starting" the immune system.

No. Way.

"Well, I'm not too crazy about this option because, well, my son has type 1 diabetes, and since that's an autoimmune disorder, and we really don't know if Evan might develop it, I don't want to do anything that might stimulate her immune system."

"Well, then. Let's just stay with the topical treatments. Since she's so young, we can just apply a liquid that will encourage the bumps to dry up."

And so we did. Evan was a real trooper, laying across my lap as the doc dabbed each bump with a little liquid. It was all going so well, until she dabbed a particularly large, reddened bump. Evan began to cry.

It was at this point the doctor informed me that the liquid she had just placed on my daughter's bottom would cause each little pock to blister, somewhat painfully, over the next several days.

Oh.

And we were to re-apply in the next seven to ten days. (No. I don't think so.)

As I sit typing, Evan is curled in my lap, still whimpering from the pain.

And angry, larger-than-expected blisters have already formed on my little girl's bottom.

All I can say is:

"A pox on the molluscum!" and "on the doctor who treats it!"

Somewhere, Just Before Waking

I've forgotten it all.
My child has no disease;

His daily burden is gone.
He's just a boy, like any other.

I've been here before.
Years ago, after Ma died.
For a long time, she still lived–
Occupying this brief space.

It's not a dream I'm in, you see.
I'm no longer asleep.
But I'm not really awake, either.

There is no loss.
I have no fear.
The "new normal" doesn't exist here.

But then, always –
The shock.
That moment, when reality intrudes.
When I am fully awake.

When I remember.

One, Two, Three . . . HbA1c!

Yesterday, Joseph had his three-month endocrinology visit. I'm always anxious about these appointments, often wondering if the doc will take one look at our "smart charts" and ask, "Do you people know what you're doing? What's with the highs? And don't get me started on all of these lows. You might as well pack it in right now, because, hell if you know how to take care of your son."

Er, well, something like that.

Anyhow, it never quite plays out the way I imagine. But let's backtrack a moment, shall we? Because yesterday was one of those days when the tiniest of efforts seemed to morph into something almost Herculean. What was the problem, you ask?

Just getting there.

Shortly after waking, it became very clear that a conspiracy was afoot. I had a plan, you see. I'd stayed up late the night before doing the final preparations for, what looked on the surface to be, a pretty straightforward morning:

• Review notes with questions for endocrinologist, while drinking soothing cup of tea;
• Take refreshing shower so as not to offend said endocrinologist with smell of anxiety-induced sweat;
• Wake and get breakfast for the kids;
• Dress Evan;
• Inform school that Joseph would not be in;
• Pack supplies for our outing;
• And then, off to our 9:45 appointment.

Easy enough.

Problems was, too few people got the memo.

I got up, and just as I began filling the tea kettle, I heard Evan calling from the top of the stairs, "Mommy, mommy" she sniffed, "I want mommy."

Well of course you do. So I picked her up and carried her down the stairs. Trouble was, she didn't want me to put her down, she wrapped her legs about my waist like a baby monkey, determined to stay where she was, indefinitely. Okay, deep breath. Obviously, she was upset, and needed some time RIGHT NOW with mommy. Change of plan, sit down, read a book to Evan, and try to coax her into eating something, and then, on to the tea...

During implementation of the revised plan, Joseph stomped loudly down the stairs. Apparently, he'd "gotten up on the wrong side of the bed." Actually, I hate this expression, and because Joseph sleeps on a top bunk, against a wall, he hates it too-- pointing out to me that he can literally only get up on one side of the bed.
But I digress.

"How long do you think this appointment is gonna take? Because it's really boring sitting there while you and the doctor talk. Can I bring Evan out to the lobby during the appointment?"

Now, regular readers know that Joseph is a smart, sensitive, awesome kid. But, there are times when he can be, well, difficult. Unfortunately, because I still had not had my tea, I was a bit difficult myself.

"Joseph," I said, exasperated, "I don't want you to be rude at this appointment. No saying 'I'm bored.' I'm tired of hearing 'I'm bored.' Sometimes we have to sit through things that are not particularly interesting to us, but are important. This is one of those things. We see this doctor four times a year. You can tolerate being bored for those few visits."

"And another thing" my voice rose an octave as I was picking up steam, "if things go faster than I expect, then we'll just bring you to school afterward instead of going to lunch, since school lets out at 1:45 today."

"No, no" he said in a panic, "We don't need to do that." The fear was palpable.

Just as I was ready to come back with how this isn't a vacation day, the phone rang. It was Ryan.

"Honey, on my way to work, I noticed a lot of people in the neighborhood have their recycling bins out for pick up . . ."

Suddenly, Evan started pulling at my shirt, saying quietly, "Mom . . . mom. "

". . . I'm not sure if our street is scheduled for a pick up today or not, but our bin is pretty full."

More shirt pulling. "Mom . . . mom . . . mom."

" . . . could you check the new pick-up schedule? I think it's in the drawer by the phone . . . and put out our [huge] bin if the pick-up is today."

Clearly, Ryan had not gotten the memo.

When I hung up the phone, I turned to Evan, feeling guilty that I had been ignoring her attempts to get my attention. I said, in that soft, mommy voice:

"What is it, honey?"

She looked up at me with big brown eyes, and a somber expression.

"I'm bored."

"What?"

"Mommy, " she sighed heavily, "I'm just bored."

Dear. God.

Two phone calls later (the first from a friend who wanted to arrange a playdate for our kids, and really just wanted to "chat," and the second, a much-longer-than-intended conversation with the school secretary about Joseph's desire to play the cello in strings class), we were back on track.

The shower was quick. The tea never made. The recycling pick-up schedule never found. But the kids were dressed and fed. When we got to the hospital parking ramp, it seemed that everyone had a 9:45 appointment. We drove to the top of the ramp, before I decided to go wild and ignore a "Wrong Way" sign, in order to nab a just-vacated spot. We were in.

At 9:50, we ran to the parking ramp elevator, then on to the clinic elevator, and just as we approached the check-in desk, I realized that my notepad, filled with carefully thought-out questions, had been carelessly left behind-- still lying on the passenger seat of our van . . . a million miles away.

I was going to have to wing it.

Thankfully, I remembered all of my questions, Joseph successfully beat back boredom, and Evan only mildly freaked out in the examining room, until she realized that her brother would be the doctor's focus. And, when Joseph did eventually retire to the lobby with Evan, his doctor commented that "He's really a very bright kid, and so well-mannered."

I simply smiled.

Oh, and his HbA1c. It was 7. Down from 7.5 three months ago. "He's definitely ahead of expectations for adolescent children. As a matter of fact, our goal for high school and college kids is 7 or below. You really are doing a terrific job here," she said.

Again, I smiled . . . but this time, with a huge sigh of relief.

Resolution

All right. So when last I posted, we were waiting for Joseph's replacement insulin pump.

By eleven o’clock yesterday morning I was starting to panic, thinking "maybe this will be like the loaner . . . maybe it just won't come . . . "

I called Animas.

And again I explained the events of the past two weeks, adding that I was "losing confidence in the pump and the company we had chosen."

Now, to be fair, the technical support rep with whom I spoke was incredibly thorough. She walked through each of the issues I had raised last Friday, troubleshooting in an attempt to find an explanation for all of them.

All this, as I was rapidly losing my composure.

"This is insane! Our THIRD pump in seven months! They're supposed to last four years. These aren't even making it to four months!"

Understand, that because I had no replacement pump in hand, and Joseph was wearing something that could fail at any moment, I was a little out of control.

Finally, after offering many apologies and reassurances, the Animas rep said she'd call UPS, and get right back to me. Her professional response was typical of all previous conversations I'd had with Animas.

Well, prior to last Friday, that is.

Five minutes after I hung up the phone, the pump arrived.

Joseph was hooked up to the new pump, with a new set at 4pm (he didn't want me to come to the school and do it, and since I had pump in hand and could get to him in minutes, I felt okay waiting til after school . . . though I did pick him up instead of letting him take the bus).

And as if to give us one parting shot, the old pump sounded the "No Prime" warning once again as it sat on the counter top while we changed Joseph's set.

Joseph looked at the broken pump, with it's beckoning alarm and it's horribly faded display, and said, unsympathetically, "Stupid pump."

Like his pancreas, and the pump before this one . . . just another betrayal, I guess.

But then, he asked if we could put the cartridge cap from the old pump onto the new one.

"Why?" I asked, a bit surprised.

"Then I'll still have a part of that one with me. Then I won't miss it."

Oh.

After we finished, he got up quickly and took off outside to skateboard with his buddy, Zachary-- only to return inside about 45 minutes later, looking frustrated.

"Mom, this pump just gave me a "Warning No Prime" message.

What?

"Okay then, let's have a look at it," I said as calmly as I could. "Yup, we sure did just prime it 45 minutes ago . . . hmmm . . . all right, let's just re-prime then." So I primed out two measly units, because, as I said, I JUST PRIMED THE DAMN THING 45 MINUTES AGO.

"Is this pump going to work, mom?” Joseph asked, tentatively.

"It's gonna be just fine, buddy. Hey, did it fall out of your pocket at all? Or did ya bump anything? " I asked these questions, wondering skeptically about a "hiccup."

"Nope. Not at all. Can I just go outside now?"

Okay then. Not a good time to phone Animas, since Evan had cried throughout our little re-priming session. She was begging me to take her outside too, so I resolved to call Animas after Ryan got home.

I didn't have to.

Our local pump trainer, a CDE, called to follow up on our situation. We discussed everything that had happened. She apologized up and down, and explained that this is not typical of their pumps or their service. I reiterated to her that the two areas I felt were Animas' strongest -- stellar support and well-made hardware -- were failing.

"Sandra, listen, if anything happens overnight or tomorrow morning with Joseph's pump, call my cell phone. I will come out [she's an hour away] and loan you my demo pump until a replacement is sent. As a matter of fact, if Joseph has any problems at all, ever, with this pump, call me. I don't want you to have to wait around for a replacement."

This morning I received yet another phone call from Animas. It was from the rep I'd spoken with yesterday from the home office.

"Sandra, I got a call from your local pump trainer this morning. You've experienced an unacceptable number of problems here. We're going to send a loaner pump for you to have as a back up over the next three months. We'll review at the end of that period to see if you need it longer. The problems you've had are truly not typical of our pumps. But we don't want you to lose peace of mind worrying about whether or not this new pump is going to fail. "

So that's it. And I'm back to feeling much better about our pump company-- if maybe a little less confident in our pump.

Insulin Pump Woes

Just before Joseph left school on Friday, his blood sugar was 118. In the 45 minutes he sat on the bus, and the five minutes it took for him to walk the half block from the stop to our house, his blood sugar dropped 81 points-- to 37.

Of course, we did not discover this fact immediately.

"Mom!" Joseph called out as he walked in the door. "My pump alarm went off twice on the way home from the bus stop. It said ‘Warning, No Prime.’"

"Okay, let's take a look."

"Oh, and mom, I think I might be a little low."

While Joseph washed his hands and prepped the meter, I looked over his pump. According to the history menu, we had primed it the previous night (when we changed his set). Okay then. To be on the safe side, I re-primed. When I turned to give Joseph his pump, a beep sounded from his meter indicating that his sugar had been tested.

"Wow . . . I guess I'm really low."

So, what is it with 37? We've seen this number three times lately (in and among some 40s and 50s). It's like, if he's gonna go way low, it's gonna be a 37.

I don't know.

Anyhow, we treated the low, and Joseph was back up in 15 minutes.

Needless to say, the thought of him walking home alone at 37 was more than a little frightening.

Something else bothered me too. Something that's been needling at me for two weeks. On August 19th, when we'd gone through airport security in Spokane, a security person had actually tried, too late, to prevent Joseph from passing through the security screen. Strangely, he said it was "for his own protection." That's never happened when we've flown before.

Since that day, Joseph has had many precipitous blood sugar drops, despite pulling back his insulin to pre-vacation levels. I had assumed the lows were due to the honeymoon factor-- that his pancreas was simply spitting out higher levels of insulin. But maybe I was wrong.

You see, for one day, our first day back from vacation, the pump recorded Joseph's bolus and basal doses in the previous day's history. In other words, for one day, it experienced an odd malfunction. After I reset the date and time, it worked fine, but still . . .

So, because I was feeling upset, and fearful that his pump might not be functioning properly, I called Animas. After explaining the above to a pump support person, she said, "I can really sympathize with your concerns, but it sounds like the pump experienced what I like to call a 'hiccup.' If it was bumped or dropped, sometimes it loses its prime, and just needs to be re-primed. "

A hiccup. Hmmmm.

"You know I think I'd feel more reassured if we were just talking about a toaster. But we're not. This is my son. And this is his insulin pump."

"Yes, I know. And I understand. But they're really picky about the reasons for sending out a new pump. This really isn't a good enough reason."

"Okay then, " I said curtly, as the anger that had been churning in my stomach finally reached the boiling point, "what is your name?" And then rapidly, "Because I just want to make sure I know with whom I've spoken, in case we need to follow up here. In case there's a problem."

After giving me her name, "um . . . well you know, I was just thinking . . . that um, we might want to do this. Well, it's not something we normally do, but it might be a good idea here. I can send you a loaner pump so that you're not without a backup over the long holiday weekend . . . "

The loaner pump never came.

Fast forward to this morning. I went downstairs to make Joseph his lunch for school, and to go over his overnight sugars with Ryan. As I walked in the kitchen, Ryan was there waiting. And he did not look happy.

"Joseph's pump display is fading," he said, in a defeated tone.

I sat down.

"What?!"

"The left side of the display is gone. I don't know if what's left will make it through the day. He can see enough of the screen to do boluses, but I don't know for how long . . . "

Violently, I grabbed the phone.

Joseph's new insulin pump – his third in seven months – will be here tomorrow.

Let's Do Something

A number of other bloggers have written, more eloquently than I am capable, about what's happening down south and how it has impacted those with diabetes. This morning, novelist Martha O'Connor makes a heartfelt plea to donate supplies for diabetic victims of Katrina, including a description of someone stranded on a rooftop -- holding a sign pleading for diabetes supplies.

It's hard not to read of this person, and imagine that, faced with the same circumstances, that could be my son. Making a desperate plea for the medical supplies he needs to survive.

Gina, over at Diabetic Talkfest spoke just yesterday of her fears for those in this frightening predicament. Today, she publishes information on how to donate diabetic supplies as well. And Amy Tenderich, whose goal in writing her blog is to educate and advocate for fellow diabetics, shares her feelings about Katrina's aftermath, and how we can all help.

Those of you reading this blog, right now: if you have diabetes (or someone you care for has the disease), then please consider sending something to help. DLife is generously coordinating the distribution of donated diabetic supplies to those in need. Click here for information on where to send a donation.

It's frightening to imagine the devastation so many face right now. Especially those with a disease that requires treatment each and every day.

In the meantime, the following piece gives a sense of what those who may be homeless are feeling right now. It was not written by someone with diabetes. Nor by an individual whose life is physically threatened by contaminated flood waters; by lack of food or clean drinking water.

No. This lucky soul got out-- probably the best-case scenario for anyone who made their home in Katrina's path.

And even the best case is not good. Not good at all.

The author is Chris Rose, a columnist for the Times Picayune, and a friend of ours. Chris and his family live in New Orleans.

Chris Rose column
Tuesday, 6:30 p.m.

I got out.

I'm mystified by the notion that so many people didn't even try, but that's another story for another time.

We left Saturday, my wife, kids and me. We went first to Picayune, Miss., thinking that a Category 3 storm would flood New Orleans and knock out power, but that we'd be dry and relatively comfortable in the piney woods while the city dried out.

Sunday morning, of course, Katrina was a massive red blob on our TV screens - now a Cat 5 - so we packed up and left again.

We left my in-laws behind in Picayune. They wouldn't come with us. Self-sufficient country folk; sometimes you can't tell 'em nothing.

We don't know what happened to them. My wife's dad and her brother and their families: No word. Only hope.

Like so many people around the country wondering what happened to those still unaccounted for; we just don't know. That's the hardest part.

If you take the images you've seen on TV and picked up off the radio and internet, and you try to apply what you know to the people and places you don't know about, well, the mind starts racing, assumptions are made and well ... it consumes you.

The kids ask you questions. You don't have answers. Sometimes they look at me and though they don't say it, I can see they're wondering: Daddy, where are you?

My 6-year-old daughter, she's onto this thing. What is she thinking?

We spent Sunday night in a no-tell motel in a forgotten part of downtown Vicksburg; a neighborhood teetering between a familiar antiquated charm and hopeless decay. Truth is, it called to mind my beloved New Orleans.

Most of the folks in the hotel seem to live there permanently and it had a hard-luck feel to it. It was the kind of place where your legs start itching in the bed and you think the worst and you don't want your kids to touch the carpet or the tub and we huddled together and I read them to sleep.

Monday morning, my wife's aunt told us they had a generator in Baton Rouge. As Katrina marched north and east, we bailed on our sullen little hotel and drove down along the western ridge of the storm, mostly alone on the road.

Gas was no problem. We had catfish and pulled pork in a barbeque joint in Natchez and the folks there - everyone we have met along our three-day journey - has said the same thing: Good luck, folks. We love your city.
Take care of it for us.

Oh, my city. We have spent hours and hours listening to the radio. Image upon image piling up in your head.

What about school? What about everyone's jobs? Did all our friends get out? Are there still trees on the streetcar line? What will our economy be like with no visitors? How many are dead? Do I have a roof? Have the looters found me yet? When can we go home?

Like I said, it consumes you as you sit helplessly miles from home, unable to help anyone, unable to do anything.

If I could, what I'd do first is hurt the looters. I'd hurt them bad.

But you have to forget all that. You have to focus on what is at hand, what you can reach and when you have three little kids lost at sea, they are what's at hand and what you can reach.

I brought them to a playground in Baton Rouge Tuesday afternoon. They'd been bottled up for days.

Finally unleashed, they ran, they climbed, they fell down, they fought, they cried, they made me laugh, they drove me crazy; they did the things that makes them kids.

It grounds you. You take a breath. You count to ten. Maybe - under the circumstances - you go to twenty or thirty this time.

And tonight, we'll just read them to sleep again.

We have several books with us because - and this is rich - we brought on our evacuation all the clothes and things we planned to bring on a long-weekend trip that we were going to take over Labor Day weekend.

To the beach. To Fort Morgan, right at the mouth of Mobile Bay.

Man.

Instead of that, I put on my sun tan lotion and went out in the yard of the house where we're staying in Baton Rouge and I raked a massive pile of leaves and limbs from the yard and swept the driveway.

Doing yard work and hitting the jungle gym on the Day After. Pretending life goes on. Just trying to stay busy. Just trying not to think. Just trying not to fail, really.

Gotta keep moving.

Need a New (Out) Look

Yeah, I was kind of a downer in my last post. Sorry about that.

Because of the tone of that entry, and just how I've been feeling in general since returning from vacation, I've decided to try to get a handle on the overall angst that's been threatening to take hold.

Sometimes if you just change some little things, the effects can be big. See Coffee No More.

So, inspired by Tekakwitha, I'm getting back on the bike trails (our recent vacation sort of derailed my daily regimen).

Joseph starts school tomorrow, so the plan is to get up early, see the boy off, wake up the girl, eat, and go. Wish me luck.

In addition, I felt the blog needed a change as well. So, inspired by Amy, and (interestingly) urged by my husband, I've changed my profile photo.

Now, when I asked Ryan if he'd simply not liked my old photo, he said "It's fine. You just look like.... well, you're reeeally concentrating."

Uh huh.

So, I'm still in the same red shirt. I'm just not drawing up a shot-- a shot of NPH, no less (since Joseph's on the pump, the old photo probably feels a bit dated anyhow).

I'm keeping the blog name though. Even though he's off shots, it still feels like much of what we do here-- trying to solve the mysteries of food/exercise/hormones, their effects on Joseph's blood sugars, and of course, how best to bolus -- is indeed, very much, a shot in the dark.