UPDATE: Well, the good news is that our insulin did not congeal into frozen crystals. The bad news is that our toddler was very spooked by being out in the snow and seems to equate snow with being abandoned to a cold, lonely death. And our trip ended early when he developed high ketones
Our son was running high and getting sick when we got to the mountain town (elevation approximately 8,000 ft), so I had set a sick basal that is higher than his typical by about 15%. That worked for the morning, he didn’t go high, he didn’t go low, despite the higher basal rate and the “activity” in the snow (read: us lugging him up the hill over and over again so he could tube down, because he hated even having to walk in the snow).
I must have jinxed things because I told my husband “well, the trip’s not over but so far it’s been pretty smooth sailing.” He ate dinner, we bolused for only a portion and he peaked at around 144 mg/dL. It was time for a site change so my husband did that…and he stayed between 140 and 120 for most of the night, even briefly dipping down to 85 at his usual time when he tends to dip low.
Then at around 4:30 or 5am he started slooowly drifting low, we gave him a gummy, and that didn’t raise him. So we gave him another and he started skyrocketing from about 68 to 200. At that point, we went to give him a bolus and my husband realized he had never hit ‘OK’ on the last screen on the pump while changing the reservoir, so it was not delivering insulin all night long (NOTE: this seems to be a design defect, because if the pump was suspended it would alarm periodically to warn you, but simply not finishing up a reservoir change apparently never triggers an alarm).
We tested his ketones and they were high at 3.4. So, we slightly panicked, cranked up the insulin, gave him a super carby breakfast, more insulin, more water, and four hours later he was down to trace ketones and a blood sugar of 102. But by then snow play for the day was nixed because we didn’t feel comfortable with him romping about with high ketones.
This whole fiasco has raised so many many questions for me.
- If he was generating so many ketones overnight, why was his blood sugar so bloody steady? Was it something to do with the altitude?
- OIf zero insulin kept him perfectly steady at his target blood sugar for 10+ hours then would there have been any way for us to have kept him from both going low and free from ketones if he had been connected to the pump?? He had only 20 g of carbs at dinner, but he wasn’t hungry for more.
- How can I have any reassurance that he will not go into DKA if he generates ketones at very normal BGs?
Yesterday was his BEST DAY in 3 months:
When he was at 3.4 I tested his BG by finger prick and it was only 203 – a number we see many times in a week. I’m just super scared at this point that my son is just very prone to spiraling into ketone generation if he has even slightly fewer carbs than normal and has any dearth of insulin. He is too young to understand the symptoms of DKA, but he was complaining of feeling tired and having a tummy ache today. Those, however, are symptoms he has multiple times a day for various reasons.
- Does anyone have a more scientific explanation of how altitude changes insulin sensitivity, aerobic respiration, insulin needs, etc? Everyone just told us that their kids tended to run low when in the snow at altitude, but for us that seemed to be only sort of true.
- How could he have drifted down to 68 at night when he hadn’t gotten insulin for almost 10 hours?? And yet he was surely and most definitely developing ketones at that time.
Thinking we may really need to set him up with the untethered approach. I’m just too concerned with him developing ketones otherwise.