A month ago, my 14 year old son, diagnosed with type diabetes at age six, he saw his endocrinologist and had one of his best checkups ever, but five days later, I went to wake him and found him dead. He had just gone to sleep, and I could tell he never woke up or tried to get out of bed. We are devastated and shocked.

The medical examiner could find no cause of death, and we’re still waiting for toxicology reports. We know 100% that our son didn’t drink or take drugs and we checked his insulin dosage ourselves. He was fine when he went to bed.

I came across an article on your website about “dead in bed” syndrome (I was flabbergasted as it was dated 1999). Why would we not have been advised that this was possible? We would have invested in monitors, etc. Where does research stand on this syndrome?

It is tragic that sometimes young people with type 1 diabetes die in their sleep. We believe that this is likely related to hypoglycemia associated with neurologic abnormalities whereby the heart beat is interrupted. However, nobody knows this for sure.

There are several reports in the medical literature over the past decade or so that try to explain such problems. We also know that diabetes affects the nervous system in many subtle ways (autonomic neuropathy), so this may also be a clue to what might have happened to your son. There are special techniques that some medical examiners can use to try to determine if hypoglycemia was present even hours prior to an unexpected death. Alcohol, drugs, common unintentional insulin dose errors, omitted food and snack, particularly when associated with extra activity have also been implicated.

It does not sound like you or your son did anything wrong to produce this or that any of the current monitors would likely have been of help since none of them are perfect, and all have problems particularly in the hypoglycemic range. Our hope is that, with more research, we will get such monitors, and that they will be sufficiently reliable to prevent such problems overnight. There is excellent progress already being made just the past few years and more that will come form many research teams around the world working in this area.

You may want to talk to your son’s diabetologist when there is more information available from the post-mortem examinations. This will give you a chance to ask more detailed questions when there is some more information available.

SB