A diagnosis of T1D in the family brings with it a lot of lifestyle changes, but one change I was not expecting was the lack of uninterrupted sleep. As a parent of a child with T1D, I am primarily responsible for checking my son’s blood glucose to ensure he remains in a good range. If Cole’s BG goes too high (hyperglycemia), he can go into ketoacidosis (when there is too much sugar in the blood and the blood becomes acidic–this leads to kidney damage and, if left untreated, death). If Cole’s BG goes too low (hypoglycemia), he can pass out, have a seizure, suffer permanent brain damage, or die. And any of these consequences can occur in a matter of minutes, not hours.
Because children are highly responsive to both carbs and insulin, and because the slightest change in daily activity–exercise, eating, sleeping–can influence how well (or how poorly) carbs are processed by the body, finding that perfect insulin dosage is elusive at best. Some might even say it is impossible. For this reason, parents or caregivers of children with T1D must constantly check blood glucose and treat highs and lows immediately. This is especially true during sleep, for children tend to have lower blood sugars during sleep AND children tend not to wake up when hyperglycemia strikes. Cole is no exception. He can feel most low bgs (definitely in the 60s), but when he is sleeping, he doesn’t feel any of these symptoms and he does not wake. Unlike people without T1D, the body generally recovers from hypoglycemia by producing glucagon. T1Ds, however, do not have the ability to produce this life-saving hormone. So if a child has a low in his sleep and the low goes untreated, he can die. In the T1D community, this is call “Dead in Bed” syndrome.
For about a year, I had been waking at midnight and 3 am to check my son’s blood glucose. I got in the habit of going to sleep at 9 PM, so I could get a good 2.5 hours of sleep in before waking for the first night time bg check. Then back to bed for another 2 1/2 to 3 hours before the second check. Then back to sleep for another 2 1/2 hours before having to get up for the day–if I was lucky. Most nights, I did not fall back asleep after that 3 AM check.
This summer, after numerous requests and outright begging, my son’s pediatric endocrinology team agreed to put Cole on a CGM–continuous glucose monitor. CGMs monitor blood sugars continuously through a sensor inserted beneath the skin in the abdomen or lower back. The sensor transmits a reading to a wireless receiver and can sound an alarm if blood glucose goes too high or too low. This little medical miracle has been a godsend for my family. For the first time in a year, I was able to get seven hours of uninterrupted sleep this summer. After several days of uninterrupted sleep, I felt like a new person. I had not realized just how exhausted I had become.
I still have those nights when Cole’s bg goes low during the day and necessitates overnight checks. Or those nights when, for whatever reason, I fear the worst and can’t stop checking on my son every hour or two. But some nights, I sleep well because of the CGM alarm. My son rests more easily as well. He knows about “Dead in Bed” syndrome and the reality of his life with diabetes. I cannot imagine what it is like to be 9 years old and to realize that you could die in your sleep. Most people reach adulthood before they worry about death–a luxury that a child with T1D cannot afford. Also a luxury a parent of a child with T1D cannot afford either.