About four months ago, we lost our 23 year old son, who had Down’s syndrome, to undiagnosed type 1 diabetes. He was sick for about eight days before he went into a diabetic coma, was in that for a week, then he died.

Our son was diagnosed with an acute sinus infection and was sick all week, although we did touch base with the doctor two days later. He said to bring him in two more days if he wasn’t any better, but we never made it to that appointment — we called 911 instead. He was rushed to the hospital where they found a sugar level of 1,300 mg/dl [73.9 mmol/L], pneumonia, adult respiratory distress syndrome, and damage to the muscles, liver, and kidneys from the DKA [diabetic ketoacidosis]. Needless to say, our world has been shattered now we are looking for information about it.

We can find information about Down’s kids and diabetes independently, but not the two connected. Of course, being typical parents, we are blaming ourselves for our loss and looking for some comforting information that might help us realize that we had done all that we could. However, we have such a void in our lives that we can’t hardly make it through the days. Any help with this would be greatly appreciated. Do you have any information about Down’s Syndrome and type 1 diabetes?

You should not blame yourselves in for your son’s unfortunate death. I believe it was due to a largely unforeseeable cascade of uncommon medical events. It has been recognised for some time that young people with Down’s syndrome do have an extra vulnerability to autoimmune conditions. Hypothyroidism is by far the most common of these, but type 1A (autoimmune) diabetes has been reported too. Usually, this presents rather uneventfully in the childhood or teen years, but in your son’s case, this was greatly delayed and would nowadays be termed Late-onset Autoimmune Diabetes of Adulthood (LADA). The progress of islet cell destruction can be very variable in these instances, and I think it quite likely that, up until a few months ago, his diabetes might not have been detectable on simple routine urine testing. However, when the sinusitis and pneumonia finally precipitated clinical diabetes it seems to have led to another uncommon condition known as HHNS (hyperglycemic hyperosmolar non-ketotic syndrome) due to the extremely high blood sugar which is particularly damaging not only to the brain but to the liver and kidneys as well. It is often associated with the absence of ketones which actually accentuates the metabolic insult.

Finally, I wonder if it might be important at this time to seek counselling for your grief at least for a short time.

DOB