Monday, March 28, 2011

What About HHNK ?

Daniel at Six

As you know, when Daniel walked into the bathroom, the morning after Thanksgiving, collapsed and experienced a respiratory and cardiac arrest. I had no idea why. The autopsy that occured afterward at a major university medical center, also did not. As a parent, as a registered nurse, and as a college instructor, I cannot help but try to ascertain what happened, and try to figure out how I failed him. Because Daniel would want me to, I have gone on, and I am doing what he and Dad would want in terms of living a life, but I can't stop looking back, and trying to discern what happened, which I am afraid I do periodically.
We know that the pathologists who completed and subsequently reviewed Daniel's autopsy believe that he died of Long QT syndrome or similar syndrome. They arrived at this as a diagnosis of exclusion. Nothing else life threatening was found, and since arrhythmic syndromes are functional and not necessarily structual issues, sometimes they present with nothing other than sudden cardiac arrest and a relatively clean autopsy. (Clean meaning nothing found that should have caused death, although all autopsies have "incidental findings", irregularities which may deviate slightly from textbook normal, but are not felt to have been causative or even contributory to sudden death.) I still find it hard to believe that Daniel, who could go from 0-60 mph running on the farm when he wanted, had this issue. I just believe that there should have been some indication of periodic arrhythmia. After all, I detected paroxysmal atrial fibrillation in my oldest son, and it was treated. How could I have missed whatever this was ?
HHNK or even DKA did cross my mind almost immediately when I began CPR on Daniel. As the parent of a juvenile diabetic daughter, I have always lived in fear that autoimmune diabetes would afflict at least one of my other children. (Incidentally, I detected her juvenile diabetes myself and took her to an endocrinologist early in its course.) The truth is that although another sibling of a Type I sometimes contracts Type I diabetes,during childhood or teens, it is unusual. I did periodically check blood sugars on them, especially during growth spurts, if they had influenza, or sometimes in summer when they seem to drink more fluids than usual. I have never found an elevation other than in our known diabetic child. Daniel did not show symptoms of DKA (Diabetic Ketoacidosis) prior to his passing.
Lets suppose for a moment that Daniel experienced HHNK. HHNK stands for Hyperglycemic, Hyperosmolar Non-Ketotic Syndrome. It occurs in Type II diabetics, normally adults. However, there are increasing episodic cases of children now. Because we have a family history of Type I diabetes in my daughter, we are at higher risk for other endocrine and blood sugar regulatory disorders, and so Type II, a different illness of glucose regulatory failure, is still possible. The patient with HHNK is a Type II diabetic, occasionally non-diagnosed, who has a high blood sugar,(often greater than 600), no discernible acetone on his breath (no ketone bodies), nausea, extreme dehydration, and neurological issues which may lead to coma, convulsions and death. In Daniel's case, no immediate blood sugar was drawn upon his death, and we were told that one would not be accurate pending the autopsy. I now know that his bloodsugar at time of death could have been ascertained by obtaining a small amount of vitreous humor from the eye, but this also, was never done. I have spoken with three endocrinologists and all three believe that Daniel could not have spent two weeks at home with me, homeschooling and vacationing, had HHNK and that I would not have known it. I am not so sure. How many of us would determine that a child almost 13 might have dilute urine ? How many of us really would know how much water our child drinks ? How invasive are we really with our children, unless we detect something not being quite right? I was lucky in detecting problems with our other children. This time, whatever it was, I was not.
I have the assurance of people who should know that he did not die from HHNK. Do I believe them ? I don't know. Something called Daniel from us, that beautiful still, backlit morning, and as much as I know he always belonged to God, and he is God's to call, I still want and need to know how. I need to know not only what I missed, but the implications for our other children, and potentially for grandchildren someday.

UPDATE: The pathologists who did Daniel's autopsy still feel that Daniel's passing was secondary to a spontaneous cardiac rhythm disturbance of unknown etiology"(cause) This is a presumed and theoretical cause of death, and a diagnosis of exclusion.

In Russian "Love Like A Dream"
Lara Fabian and Igor Krutoy

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