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Posts tagged ‘high blood sugar’

It’s Not. Your. Fault.

 

 

 

About a year ago, Luke’s behavior turned dark. This went beyond the terrible threes: he was alternately clingy, defiant, manipulative, and fiercely angry.  He missed hours of preschool due to tantrums. When he quietly told Erik that he didn’t like living because of diabetes, our suspicions were confirmed – at three, he was coming to terms with time, mortality, and “forever.”

We tried to put it in perspective, sometimes with hilarious insights from Luke. “Some kids don’t have both parents,” I said after reading Hansel and Gretel one night. “It’s tough – some don’t have parents at all.”

Luke didn’t skip a beat. “Well, I need more parents,” he said. “I’ll go to a bar.” When Erik and I have a date, the standard reason Luke can’t come is that we’re going to a bar, and kids aren’t allowed. Apparently the lesson is that bars are a great place to find quality parental material.

But nothing really softened his storms, and I had the feeling we were missing something aside from the obvious. When Luke was diagnosed, people often said, “Well, at least he’ll grow up with diabetes and won’t know anything different.” It was an understandable reach for silver lining, but I’d never really bought it.

One night, the pieces fell into place. It was bedtime, and I was lying with Luke in his darkened room. He was rocking his body from side to side and staring blankly at the ceiling. I felt a chill. “What’s up, bud? Why can’t you sleep?”

“I’m thinking about the bad things I do to my body,” he whispered.

My skin crawled. Blood sugar had been a roller coaster that day – one of those nasty 40 to 400 and back again kind of days. Of course – kids blame themselves for divorce, abuse, neglect, and all kinds of things beyond their control, so why wouldn’t he blame himself for crazy blood sugars? He saw us as able to bring blood sugar under control, while he could do nothing. No wonder he was disgusted with himself and mad at the world.

“It’s not. Your. Fault.” I told him. “Having diabetes and high or low blood sugars – none of that’s your fault. There’s nothing you did to cause that.”

He brightened. “Then whose fault is it?”

“Well, sometimes it’s my fault for not getting the insulin right, and sometimes it’s nobody’s fault – diabetes is just tough to get right sometimes. But it’s not your fault – your job is just to be a kid and to have fun, learn things, and be nice to people. It’s our job to take care of the diabetes. And when you’re big, it’ll be your job, but it’ll be a lot easier then.” I babbled, hoping something would stick.

It did. He smiled in a way I hadn’t seen in months. “I love you, Mom,” he said as he hugged me. He rolled over and in minutes was snoring softly.

He didn’t turn into an angel, but the nastiness faded, and we went back to more typical terrible-threes behavior. We still occasionally remind him that it’s not his fault, and the answer now is an assured, “I know.” There will be more phases as he grows up, and I hope we can help him navigate them. If not, we’ll just send him to a bar to find some parents who can.

An Experiment in Empathy

When the new Dexcom G4 arrived earlier this week, I was excited on two counts:

First, we could pick up Luke’s blood sugar from his room (no more clunky white baby monitor to pick up alarms), from the parents’ seats at Aikido practice, and from other rooms at friends’ houses.

Second, I could try on the old Dex and see how it felt.

This seemed a little unseemly, taking D-mama empathy a bit far, but I wanted to know if Luke’s occasional complaints about the Dex hurting him were genuine or pre-schooler exaggeration, and I wanted to know what normal blood sugar looked like. When Luke was diagnosed, I left the hospital with the impression that normal blood sugar stayed strictly between 80-100 at all times. I’d learned since that there’s more variation, but I had no idea how much.

What I found was both a relief and slightly dismaying. A relief, because much of the day our blood sugars weren’t dramatically different (it was a good day – don’t get the wrong idea). A shared banana first thing in the morning spiked us both – but my pancreas kicked in to  level out blood sugar, while Luke’s synthetic insulin took a while longer to flatten out the rise. (The old Dex showing my blood sugar is on the left, and the new G4 showing Luke’s is on the right. Apparently I experienced the “dawn phenomenon” spike just before waking up – Luke’s still too young for that.)

There were moments when Luke’s blood sugar went higher or lower than I could follow – and what can you do but sigh and bolus or hand over the juice. What surprised me was how uncomfortably aware I still am, several days in, of the Dex wire under the back of my arm. It twinges when I roll over on it at night, and it’s faintly sore during the day. Maybe it’s a bad spot or I’m just not hardened yet to pokes and discomfort, but my heart sank when Luke complained this afternoon that the new Dex (which has a smaller wire) hurt his arm.

But the moment passed, and it keeps him safer at night and during the day, so we’ll stick with it. He needs something to tell stories about when he’s older – some equivalent of the old days of boiling glass syringes and sharpening needles on a whetstone. Maybe he’ll have a CGM by then that reads blood glucose via light through the skin, or maybe by then we’ll have something even closer to a cure.

Highlights from CWD Technology Conference in Seattle

I went to the CWD Focus on Technology conference in Seattle last weekend and floated away in a hazy cloud of hope. It’s true – only smart, hilarious, beautiful people live with T1, and meeting so many in one place at one time was incredible.

Three talks hit on the main issues we struggle with most of all right now: meal spikes, sleep, and sanity.

Strike the spike! 
This was Gary Scheiner’s session on getting mealtime spikes under control (his Type 1 University offers this course online). It was a great sanity check, and using one of the techniques the next morning made breakfast a lot less grisly.

Causes behind meal spikes (i.e. “We’re pre-bolusing big time, so why the f*#& are BGs still screaming sky-high afterwards?”)
* Synthetic insulin still isn’t rapid enough to keep up with most food digestion, except for really low GI foods.
* Type 1 diabetics digest food faster than people with functioning pancreases – so again, the insulin is too slow to keep up. Kids digest food even faster – hence the nasty spikes.
* How cruel is this? – the pancreas in T1 diabetes produces glucagon when it’s least needed, right after meals, adding to the spike.
* Lows before a meal accelerate emptying of the stomach, which means the meal spike will hit even harder.
* Breakfast spikes are the worst, partly due to not having much insulin in circulation from nighttime basals. At lunch and dinner, basals are higher and there’s usually extra insulin in circulation from earlier snacks or corrections.

Recommended post-meal targets:
* Kids under 5: Under 250
* School age kids: Under 220
* Teens: Under 200

We hit these targets less than 10% of time, and a Yale blind study on peaks found the average after breakfast was 293, after lunch was 291, and after dinner 280 (yay, we’re normal!). Doctors, seeing the spikes, often recommend a lower carb ratio – which just causes a crash after the meal.

What to do?
* For older kids, Symlin (off-label) or amylin.
* Bolus for the entire meal up front, but split it and eat the second half an hour or so later. (This worked on Luke – we held off on milk, the worst offender, until he was in the car for the commute to pre-school, and the spike was very gentle.)
* Use physical activity after the meal to speed up insulin absorption and slow digestion (could be something as gentle as walking the dog).
* If a low before the meal is causing a rebound, use a temp basal for 2-3 hours.
* Protein, fat, and fiber help by slowing digestion (low GI foods), as does vinegar. 2t of vinegar have a fatty acid that slows gastric emptying and can lower spikes by 50 points. Sourdough bread, strangely, is low GI due to the this acidity.
* Consider avoiding pure protein, because protein by itself raises blood sugar (on average, half of protein grams turns into carbs, but hard to predict). Having a few carbs with it prevents conversion.

He wasn’t a fan of pre-loading morning basals to blunt the spike, since you’re then locked into a certain time and # of carbs.

Is it Safe to Sleep at Night? (Bruce Buckingham)

The answer, in short (recent JDRF ad aside), was “yes.” Based on many blind studies, it seems it takes 3-5 hours at or below 50 to cause a siezure. So a sensor lag of 5 minutes is not an issue – hypo minimizer trials at Stanford had proven effective and safe without causing hyperglycemia.
I approached Dr. Buckingham after his talk to ask – is it sane for us to be up as much as we are at night, with a T1D 3-year-old? “Oh,” his face fell. “The little ones are so volatile.” Sigh. Which led me to the keeping-your-sanity session –

It’s Not Just a Numbers Game (Joe Solowiejczyk)

This was the first time I’d heard Joe speak, and I laughed so hard I cried through most of his talk. If you haven’t heard him, check out his presentation on CWD!

He talked about finding balance between giving yourself a break (like scheduling “diabetes depression days”)   and making care a non-negotiable with kids.

“What do you say when they say they don’t want to test, because it hurts?” one parent asked. “Of course it hurts!” he bellowed in a thick Long Island accent. “If you enjoy this, you’re sick, and you need help! But they need to do it. They need to test, write down their BGs, and take their boluses.”

“How do you respond to the teenage ‘You just don’t get it?'” another parent asked.  “Don’t make the mistake of treating her as a rational human,” Joe shot back, “She is not! You don’t need her good housekeeping seal of approval! You say, you’re right, my darling, I don’t, and I don’t care.”

He wasn’t a complete hard-ass either, though. Other suggestions for helping kids deal included driving over their (back-up) glucose meter in front of them and saying, “Wow, that felt good!”; praising them for having a meltdown about diabetes (feeling safe enough to do so); and the hardest – ff your kid worries, don’t tell him not to worry. Tell him hoe brave he is, and that sometimes you worry, too. Allow kids to have their feelings, but don’t try to fix it. Just be there for them. That’s the hardest and easiest part of parenting a kid with T1D.

Et Tu, Peanuts?

Last year Luke was diagnosed with asthma (a dramatic attack sent us into ERs twice over one weekend, and the systemic steroids sent BGs skyrocketing) and borderline allergy to peanuts.

When we checked in with the allergist on peanuts this year, the test came back: yup, we do need that epipen in the emergency kit. Ah, well – one more shot to add to the collection.

On the way back from the doctor’s, I tried to translate “peanut allergy” into just-turned-three speak.

“Peanuts will make you sick, bud. Milk makes dad sick, and cats make me sick.”

He started sobbing, “But I want peanuts!” (He’s had peanuts just once, but never mind.) I’m not sure whether it was his toddler self crying to get his way or an older self we sometimes catch glimpses of – a kid who senses his life has lies a bit closer to the edge and has more constraints than most. Sometimes Luke’s tantrums seem like tornadoes or hurricanes to have a quiet eye at the center, where he withdraws to assess.

As I talked him down (everyone has things that make them sick, and you just have to know what they are; blah, blah, blah), his mind turned to more interesting possibilities:

“Cats make you sick in you tummy?” He asked and started giggling. “Mommy, you EAT cats?”

Now we were back in familiar little boy territory. Whew.