Changing Snoopy's Site

Last Halloween, my daughter dressed up as Snoopy. I attended the annual costume parade and the photo I took of Snoopy and Lady Gaga will surely turn up in a yearbook some day.  

A few minutes after returning home, I got a phone call from the school nurse.  “She’s 408.”  “Crap.  O.K.  It’s gotta be the site. She’s been high-ish since I changed it last night.  Not that high, but anyway…I’ll be right there.”  I trust the school nurse would change the site with the utmost skill, care and compassion, but since I’m just a few minutes away, I grabbed the stuff and headed over.

So there we were in the bathroom of the nurse’s office, where the toilet flushed every time either of us moved.  Me and Snoopy.  So cute with the floppy ears and half-wiped off face paint because it had started to itch.  Snoopy’s a trooper, let me tell you.  Usually, there’s a commotion at site change time about when we’ll do it, where it goes, what the reward will be.  Snoopy lifted her tail, closed her eyes and let me go for it.  “Good dog,” I said.   “Woof,” she said and rolled her eyes. And off she went back to class. 

Halloween Is Coming!

Halloween has come a long way for kids with diabetes over the past 10 years.  With the increasing popularity of the insulin pump, and the almost univeral use of fast-acting insulin to cover the carbohydrates, the days of forbidden foods have virtually gone by the wayside. 

Treats of all kind are allowed.  But they're still not all ideal. 

No matter how carefully covered, a package of candy will behave differently in my child's body than it will in her friend's.  Or maybe it won't but I have the tools to see exactly what happens to all that sugar. 

Candy will certainly behave differently than a slice of whole wheat bread with the same number of carbohydrate grams.  The candy will produce a spike in blood sugar soon after it's eaten. A healthier alternative will be slowly absorbed by the body, keeping her numbers on an even keel.

Since, however, I'm unlikely to convince my daughter to trade in her halloween candy piece-for-piece for slices of whole wheat bread, we'll have to compromise.

Every family with diabetes has a different Halloween game plan, but here's what we do:

Keep 9-10 favorite pieces.  She eats one per night for dessert.

Keep a supply of "fast-acting carbohydrate" candies to use to treat low blood sugars.  Smarties, sweet tarts and starburst are among those that get stashed in the pantry.

Donate the rest.  We have a dentist in town who collects candy to ship to the troops and pays kids $1 per pound for what they bring in.  A good deed is done, and the cash is usually spent for sugar-free gum on the way home.

Lastly, we focus a bit more on the other fun aspects of Halloween.  We have often gone to great lengths to procure or create the ideal costume.  We spend an afternoon carving a pumpkin and roasting its seeds.  We choose carefully the friends we trick-or-treat with so it's a fun outing. 

It all comes back to diabetes being a balancing act.  Fortunately, on Halloween, there are some really fun things to balance the candy with!

Time for a Tune-Up

Every so often it dawns on me that my child is desperately in need of a tune-up.  She has no tires to rotate or filters to replace, but she there's plenty of other maintenance to be done which will help her systems run better.

A couple of days ago, I realized she was overdue for an overhaul.  I'd received calls from the school nurse almost every day for a week.  Juice boxes were clogging up my trash bin.  A quick scan through the meter's memory confirmed that readings that began with a 1 were fewer or at best equal to  those beginning with 2's or those with only two digits.  My child was not running at her optimal performance level.

We could spend a lot of time debating how this happened. Illness, a growth spurt, or any number of other factors could have thrown her out of whack, but it really doesn't matter.  What matters is the need to figure out how to get back on track.

We've started by getting out the old-fashioned logbook sheets and writing it all down.  Modern technology is great, and the ability of her meter to sort, graph and average blood sugar numbers is very cool and often useful.  But there's something about writing it all down.  It makes us more cognizant of the problem numbers.  Writing those numbers that start with a 2 or a 3 over and over again brings focus to the problem.  Seeing a straight column of 2 digit numbers clarifies exactly where the issues are.Seeing a little star next to an outlier from last weekend reminds us of the bagel, or the forgotten bolus that caused it.

Now, starting today, we'll work our way through the day, noting patterns and tweaking basal rates and insulin:carb ratios as we go.  I can hear the endocrinologist in my head encouraging us to basal test, which we will likely need to do.

My hope is that with a little focus, and support from our diabetes team as needed, we'll easily get back on track. If only it were as easy as a 2 hour visit to the mechanic!

The Magic Pencil

"I thought I'd check because I felt unfocused.  I felt like I couldn't hold onto my pencil.  Or like it was going to start writing and scribbling by itself all over the page." Her blood sugar was 55.

It's an ongoing goal to help my daughter become more aware of her diabetes symptoms.  When she says, "I feel low, " we ask, "What do you mean?" or "How, exactly, " or "What are your symptoms."  When she tests high, we ask, "How do you feel?" or leading questions like "Were you thirsty?  Hungry?  Did your stomach hurt?" I'm certain these questions are very annoying.  And probably especially difficult to process when her blood sugar is low or high.

They're important to try to answer, though. A small child with diabetes relies on those around her to notice she's not o.k.  As a parent, I know to say, "You're crying about easy math problems.  Go check."  Her teacher knows that if she becomes pale and spacey to send her to the nurse.  A close friend's parent would suggest she check, or call me, if she kept asking for drinks.  

Every year she's in more situations where she's supervised by people who don't know her as well.  She encounters more teachers every day.  She goes to piano lessons without me.  She stays at birthday parties on her own.  We always make sure the adult in charge wherever she is knows about her diabetes, where her meter and emergency supplies are, and how to reach us.  But the reality is that my daughter is increasingly responsible for managing this disease and its related ups and downs. Those ups and downs can become dangerous if untreated, so it's important for her to be able to notice when she's not feeling right.

So it was significant for her to realize that it wasn't normal to think her pencil was going to scirbble all over her writing notebook.  Or throw itself on the floor.  That she recognized these as somewhat bizarre thoughts and took the next step to grab her glucometer is diabetes management gold.  After a juice box and a few quiet minutes, she regained control over her pencil and finished her homework. If only someone could guarantee me that every time she felt "unfocused," she'd have enough focus to check her blood sugar, I'd rest much easier.

Birthday Season

We are in the midst of what we affectionately refer to as the fall birthday season.  In the midst of this year's string of gift wrap, parties and cake came an unexpected moment.  My child attended a party without me for the whole time, and managed her own consumption of the birthday treat.

The party was at a nail salon where the girls were to get manicures and pedicures.  When I arrived, I learned that birthday girl was to be honored with singing sometime in the middle of the party, and that the girls would be eating their cupcakes whenever it was not their turn to be pampered. 

I had to make a game time decision.  My choices were to stay in a small nail salon crowded with 10 year old girls for 2 hours, to tell my daughter not to eat anything at the party, or to let her handle the situation herself.  As I looked around the salon, and experienced the (fun if you were 10) chaos, I quickly eliminated option one.  And given any option besides telling my child she can't participate in something because she has diabetes, I choose it.  So within a minute, it was settled.  Independence was at hand.

We eyeballed the cupcakes to estimate the carbs, and negotiated a couple of pieces of candy corn.  She stashed her bag with her meter and juice box in a safe but convenient place.  I gave her a kiss and left. And guess what?

She was fine.  She checked before her cupcake and bolused appropriately.  She also got her fingernails painted bright orange, with white glittery peace signs.  She had a great time with her friends, and welcomed the independence.

This success story was made possible by the convergence of a few positive variables.  I knew and trusted the parent of the birthday girl, and she was familiar with my child and her diabetes.  The cupcakes were easily countable, unlike an ice cream cake being carved up in randomly sized pieces.  There are certainly still parties to come for which she's going to need more assistance.

Eventually, though, my daughter's going to need to handle every diabetes situation on her own.  I know there will probably be some she doesn't handle as well as she did this one.  But for now, it's encouraging to see that independence will continue to come, and that she was able to handle this situation with skill and grace.

Visiting The Doctor

My daughter has visited a few doctors in the past month, including the pediatrician, the endocrinologist and a new specialist.  I find that my expectations of a physician visit have changed, based on our experiences with endocrinologists.

We’ve been blessed with three different excellent endocrinologists over the course of my daughter’s almost 9 years with diabetes.  When we visit, we are greeted warmly.  We are taken into a comfortable room and spoken with.  We are asked open ended questions and listened to.  A gentle physical examination is given.  We are given excellent feedback and encouraged to play a part in clinical decision-making.  We are educated about the disease and any new research or technology coming along.  We are not allowed to leave until the physician is sure we are comfortable with any changes in treatment.  We leave empowered and reassured.

When the endocrinologist downloads the numbers from my daughter’s pump, he doesn’t immediately start reprogramming basal rates or carb ratios.  First he says, “Look here….she seems to be coming in low at dinner time most nights.”  Then I say either, “You’re right, I can’t think of why that would be,” or “Yes…she had softball practice every day this week.  Next week it’s only Tuesday so I’m not sure that will be a pattern.”  Then he suggests treatment changes. We discussed over 2 visits the pros and cons of switching our fast acting insulin brand.  When lab results come in, they’re facing me on the desk with the doctor leaning over and explaining the numbers.

Therefore, I find myself expecting a conversation at my own and my daughter’s other medical appointments.  Too often, even with excellent physicians, a brief interview and exam will lead a doctor to a diagnosis and to begin to start talking about treatment.  “Wait,” I’ll say, “She didn’t mention that she’s also having occasional muscle aches too.”  Or, “Your diagnosis sounds very likely, but I’m wondering if you’d consider x as well because,” and I’ll state my reasons. 

I don’t always do this, of course.  When the strep test comes back positive, we take the prescription, do not pass “go” and head for CVS.  If there’s a cavity, we have it filled. But when I do start to discuss, doctors are often surprised.  I know they’re pressed for time.  I’ve just sat in the jammed waiting room, and can see the harried looks in their eyes.  I also know they’re not used to conversations about the diagnosis they’ve come up with.  It’s easier if I nod my head politely and assume they’ve solved my problem.  

I’ve learned however, that in the long run, a working relationship with a physician is much more useful than the more traditional model.  Not only is the doctor more likely to get all of the information about symptoms and concerns to make a more informed diagnosis, but I leave more comfortable with the prescribed treatment and therefore more inclined to follow through with it. 

Instruction Manual

In an attempt to fix a sticky drawer this morning, I removed it from my daughter's dresser and found a very detailed set of instructions.  I believe I wrote them up 8 years ago, and left them with my in-laws when my husband and I spent a night away at a friend's wedding.  It's a fascinating picture of caring for an almost 2 year old who's taking shots of NPH and Humalog for her diabetes.

Low Blood Sugar:  Usual symptoms of low blood sugar are repeating "cookie cookie, " clinginess, or laying down on the floor.  If blood sugar is below 85 between meals, give her 2 oz. juice and half a sugar free yogurt.  If it's before a meal, give juice but no yogurt.  If she won't take the juice, give one teaspoon of cake icing.

High Blood Sugar:  Unless she's sick or high for a couple of hours, we do not give extra insulin.  Encourage  extra fluids (water, crystal light, sugar-free jello), and a little exercise.  We find that tantrums can lead to high blood sugar.  These highs seem to self-correct after a couple of hours of calm.  The correction dosages are on the fridge with the other insulin information.

Refusing to Eat:  Missing up to 4 grams at most meals won't usually make a huge difference, so we don't usually quibble too much over the last bite or sip except at mid-morning snack and bedtime.  If she doesn't finish the mid-morning or bedtime snack, or if she won't eat at all, try these options:
  1. Distraction:  A new book or picture album or toy to look at while she eats
  2. Changing the scenery:  Snack on the sofa, kitchen, or outside
  3. Joining Her: Have someting to eat or drink too (maybe an alternate option that she'll want to try and think she's stealing from you)
  4. Offering an unusual alternative like cookies for morning snack or cereal for supper
  5. If desperate, give the equivalent carbs in juice, or if really desperate, frosting

Giving Insulin and Checking Blood Sugar:  We do all blood sugar checks and injections in our bedroom with the t.v. on tuned to Noggin.  She prefers to sit on a lap for these.  This also makes it easier to keep her still.

Thankfully, the instruction manual has gotten shorter as she's gotten older.  The flexibility of the pump and her ability to manage so many of the details by herself, even at the age of 9, make it much less complicated to leave her with a family member.  There also aren't as many tantrums, though I realize the teenage years are still ahead of us.