My son, with type 1 diabetes recently learned a great deal about what he didn’t know about his diabetes when he participated in a homelessness fundraiser. Not only was his awareness raised about homelessness, but also his unawareness of what goes on with his glucose levels during the night became startlingly clear for the first time.

Louis, who was diagnosed at age 2 with type 1 diabetes, is now 13. He is ready for independence in many areas of his life that I am not quite ready for, especially since Louis is my oldest child. I have heard that the teen years can be tough with type 1 and his insistence on managing much of his diabetes, gives me great angst, but what is a mother to do?

box2  “Sleep Out for Homelessness” is a local fundraiser where kids sleep, or in the case of an early frost, shiver the night away in cardboard boxes to raise money for the homeless. Louis insisted that neither I nor his dad be a chaperone for this event. None of the parent chaperones had children experience with type 1 so my husband kindly volunteered to sit in the car in the parking lot and do the glucose night watch duty. Louis was upset, but begrudgingly accepted our decision that one of us be in the vicinity to help with nighttime blood sugars.

 

Louis has become much more independent with checking his glucose levels and taking his insulin, my husband and I still do the night shift checking Louis’ glucose levels during the night. We set alarms and nudge one another to get up and check his sugars. Often we check more frequently than the recent Sundance Movie, Midnight, Three & Six 

The group of kids gathered early evening with plenty of layers, duct tape and cardboard boxes to begin their project starting with building their new home. No one had quite planned on how cold it gets in the early fall, and Louis began shivering shortly after his cardboard home was constructed and was turning in for the night. As our usual practice, my husband or I check glucose levels before bedtime and then every few hours during the night. We do this at home with the assistance of an alarm clock. I agreed to serve as the alarm clock by calling my husband in the car. The first bedtime glucose was lower than expected—a scary 40, which meant glucose tablets and even more frequent rechecks of glucose levels . By 3AM, Louis was in the hundreds, and my husband rested in the car for a whole hour before the next blood check.   Louis continued to drop that next hour into the 70s, required a juice box (which he prefers to glucose tablets).

Louis admitted that pulling back the cardboard box flaps from his temporary home, hardly compared to dialing up the thermostat at home. Fortunately, night became morning and Louis breathed a sigh of relief when it was time to emerge from his icy home. Yes, Louis was grateful to have his Dad close by to help with his glucoses during the night, but he was also angry, not so much at his Dad, or himself, but his diabetes. Louis had not realized before now of all of the work his parents do during the night to keep him safe from both hyper and hypoglycemia.

 

Box 1We have tried glucose sensors and pumps, which in the past severely irritated his skin, but after the overnight experience, Louis wanted to try again with the sensor. What came as the biggest blow to him was that he had not previously realized how much it takes to manage his diabetes, particularly during the night. He has been so proud of himself checking his sugars, taking his shots, but for the past decade, he hadn’t known since he was sleeping, that I and his dad were constantly there doing our best to manage his diabetes during the night. It literally had not dawned on him, how much he hadn’t known about what goes on during the night to manage his sugars.   This was a blow to his recent new found independence of going on daytime field trips without me as a chaperone, checking more of his own sugars, giving his own insulin in response to his glucose levels. Even with the daytime freedom, he is still tapped in the box by the amount of diabetes care going on at night while he was sleeping. We all feel trapped in this diabetes box, and sometimes it feels like we just can’t get out.

On the flip side, Perle Bioscience is beginning trials for Insulin Independence among new onset type 1 diabetes patients this year and is developing more potent islet regeneration therapies now for those patients who have had type 1 diabetes for years. These new islet regeneration therapies are now being tested in mice at Yale University with hopes of beginning Insulin Independence Trials in those with existing type 1 diabetes within the next 18 months.