At A Glance

Back now to the daily opus of attention paid Lia’s diabetes. Her wellness of course is always on our minds and as such our strategy in treating the disease is simple: be open to anything that will multiply our opportunities to know it, treat it, and deal with it better emotionally, mentally, and physically.

So last week we took full advantage of a four day test run on the iPro Continuous Glucose reader from Medtronic. This is a small device, shaped like a horseshoe crab but much smaller, about two inches in length, that attaches to the skin and continually captures blood sugar readings, while the person with diabetes goes about their normal routine. At the end of the test period, the CGM is removed and the data downloaded to a computer, where it is analyzed and compared against other collected information such as exercise, food and insulin intake, so that patterns of glucose fluctuations can be marked and adjustments made to the diabetes care plan.

Though we don’t have the data yet and cannot attest to its usefulness, the alternative testing to CGMS involves skipping meals and/or testing each hour for four to five hours, making bolus or basal adjustments, and retesting. Not something Lia or anyone else in the house was too excited to undertake. So at our last quarterly checkup we asked about the CGMS. The staff supported it and a month later she was outfitted (the tape was the worse part of it; see a few poorly shot photos here).

Outside of the obvious interest in learning more about how Lia’s blood sugars behave throughout the day, is how we all sleep at night, or don’t as the case may be. That last comment will ring very familiar with some, but to others I should explain. To do that I’ll need to backtrack.

I mentioned before our eagerness to learn all that we can about Lia’s diabetes. That’s true in every aspect of her care but one: Nighttime lows, which makes little sense when you consider that during the waking part of the day someone is always with her. Should we not be more concerned of those times when someone is not?

But other than arming ourselves with an understanding of the likely causes, nighttime hypoglycemia remains a weak link in our armor against diabetes. I don’t know why that is. It may have to do with fear (here’s an excellent  post about fear); or it could be that ignorance is truly bliss and to be any wiser is folly. After all, isn’t our world affected enough with the knowledge that lows can and do happen, anytime day or night, and the consequences can be fatal? Is that not all the call that is needed to get one of us up once or twice after dark to check Lia’s blood sugar levels? Would any more general knowledge — frequencies of occurrence, tales of courage or loss, the likelihood that Lia would wake on her own if she happens to go low, or even a computer-generated chart of her nighttime averages — give us the prudence to sleep straight through?

It is probably not information that would be wasted. It would be rare if that were the case. The treatment of diabetes is a lot like fighting a war: to avert disaster, know your enemy and know yourself. But is a four day clinical test substantial enough to put to rest any worry?

At a data-collected glance, the most challenge we have with her blood glucose levels are just before she goes to bed. Most of her meter readings — seventy-five percent last week, including those taken at two a.m. — are in range. There was only one case of hypoglycemia and it was minor and could be easily explained (incorrect bolus at breakfast time). She wakes most mornings within a few points of her target.

So maybe our worry is unwarranted. Maybe we’re losing sleep over nothing. Our bodies and sometimes our minds scream out: Yes, yes, you are. But our hearts cry something other.

The security of knowing first-hand, of really knowing that she is safe and sound is a thing no parent can truly relinquish, not to stories or knowledge or detailed computerized data.

Fear sometimes is impossible to let go, regardless how much you know.

4 thoughts on “At A Glance

  1. My sister has had diabetes since she was 3. For many years my mom got up at 3am to test her while she slept. Depending on insulin dosing, stress, daily activity levels, type of food eaten during dinner, and even how bowels are emptying on a certain day, blood sugars will truly vary (as you’ve noticed, no doubt). This is why keeping a lot of those factors consistent (obviously a big challenge-especially with children) can help make blood sugars more predictable. Low carb eating will help greatly because insulin levels are kept lower and so are margin of errors. You and your wife are right in getting up in the middle of the night if your hearts tell you to. There will soon come a time you won’t need to do that (and hopefully your daughter will wake up when blood sugar drops during her sleep-most definitely do). Something that helps is not giving insulin within 2 hours of sleep. If insulin has been giving within 2 hours of bedtime for some reason (maybe to correct a high) then I stay up until the active insulin is done. This has helped me stop having night lows except for every now and then when I work out extra hard or have to carry one of my babies a lot in the middle of the night (they are over 20 pounds so it’s a workout). Anyway, I hope some of this info helps. It has taken many years to gather so I hope you at least consider it and consider that my sister and I never went to a hospital growing up. We never have been unconscious either. Your family seems to be handling things very very well.

  2. …I realize immediately that I could fail Ellie, fail Jack, fail my whole family by not “dealing” with the feelings of fear and desperation that diabetes has brought to my life. I don’t actually feel sorry for myself, it’s more that I am angry that this happened to my little girl. That I can’t fix it, I can’t take it away from her, I can’t make it go away for her. That I know she’s going to suffer because of it and I can’t stop that. That the technology, the only thing I can give my child as relief from this disease, can’t make IT just a hiccup in the day, the technology is just as intense and complicated as the disease itself.
    It’s weighty.
    The equipment and the disease
    It’s big and poky.
    It’s obvious…
    My feet won’t touch the ground.

    (this from my writings last week, must be “fear” in the air lately?…it’s fear I think, but it could be a healthy fear too? This disease is the monster in the closet at times.) Thanks for the writings, they are so comforting for me.

  3. Ahhhh, the fear. we know it well here. It prompts the 2 am checks and sometimes the repeat 4 am checks. When my family and others ask why I still get up and check her in the middle of the night, when she hasn’t had a low for close to 8 months in the night (I am now knocking on every piece of wood I can find) I tell them the following – ‘Not on my watch.’ and I mean it, I will continue to get up at 10 pm, 2 am and 4 am for the next 40-50-60 years if it means she gets to wake up in the morning. I understand it well Steve, it never leaves.

  4. We started our 7 year old daughter on a CGM in June and it has been wonderful! It has given us some peace of mind, which is gold in life with diabetes. Like you said, the what-ifs, especially at night, can make us afraid to close our eyes. With the CGM, the alarms for highs and lows and quick changes alert us and even wake me up. The trend arrows give each blood sugar reading a context instead of just revealing a moment in time. More than using the CGM for gaining long range data, I find its value as a tool in real-time care.
    We use a Dexcom even though our daughter has a minimed pump. There is a great chart comparing them all on Some of the reasons we chose Dexcom are that it doesn’t hurt very much and there are no hassles for calibrating it. So it’s easy on her. Often the numbers are off, it takes a period to start after a new set, and it stops working here and there if she’s balled up in her covers, but any hassles are far outweighed by the relief and added safety we feel. And she likes that she’s spared some lows and has fewer finger pokes.

    Like you said, there’s no end to the what-ifs with diabetes. The CGM has helped us feel some relief, and for that, we feel grateful.
    Thanks, as always, for your thoughtful posts.

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