Thorwald Gustav Anderson was born July 1st, 2003. I'll never forget the first words I heard when I saw my son: "There's something wrong." His Apgar scores were good, however, and he was out from under the heat lamp in just an hour or so. Thorwald was born with a giant congenital nevus. Congenital essentially means "nobody knows what causes it, but it won't be passed onto his children." It's a bathing trunk nevus, meaning that it covers the area of a pair of large bathing trunks. He also has several satellite nevi (a few inches in diameter)--one on his arm, four beneath the hair on his head. The hair grows from the nevi faster than regular hair, and comes in jet black. It's a funky contrast to the light brown hair on the rest of his head. Furthermore, He has a substantial number of moles (particularly) on his face. This often leads people to loudly ask either "What's Wrong with him?" or "Does he have chicken pox?"
What's a nevus? Just a large mole, really. There's a mildly higher chance of metastasis in the nevus, which at his current age would almost certainly be fatal. However, these things are quite rare, and there really isn't any good statistical data on how to deal with it. We are currently working with a plastic surgeon to remove areas of the nevus and replace them with normal skin. How is this done? Through tissue expanders: small balloons are inserted under the skin (via surgery, naturally), and inflated over the space of weeks. This stretches the skin. Eventually, the expanders are removed, portions of the nevus are excised, and the good skin is stitched into place. This results in minimal (though noticeable) scarring.
In the spring of 2004, Thor was diagnosed with Type 1 Diabetes, which is an autoimmune disorder. He had already had several operations (for the nevus) at this point, and it is entirely possible that he was exposed to some virus or something else which caused his diabetes. Type 1 diabetes, you see, doesn't run in my family, though one member of my family does have Lupus, which may be related. It also does not run in Angela's family, but Angela does have hypothyroid, which may also be an autoimmune disorder.
In Type 1 diabetes, the immune system destroys the beta cells in the pancreas--those cells which produce insulin. Insulin is required to break glucose down into pieces which the human body can use. Thorwald currently uses a Medtronic Paradigm Insulin pump, and I believe he is the youngest patient ever to receive an insulin pump (he was 10 months old when he started pump therapy). To manage his diabetes, we do between 6 and 10 blood-glucose checks daily, using a OneTouch Ultra meter.
Thorwald is, these two things notwithstanding, a remarkably healthy and happy boy. He rarely gets sick and virtually never vomits. He is always cheerful, and is exceptionally well behaved. His verbal skills are well-advanced, and he loves reading, coloring, destroying the house, running about like a maniac, and building with LEGO bricks.
His diabetes is as well-monitored as any toddler's diabetes. He experiences swings in blood-sugar readings from the mid-40s to the low 400s (typically hovering in the 130-220 range), but he has never had a hypoglycemic incident which resulted in seizure or the need for glucagon. Non-diabetic adults typically have blood sugar which ranges from 80-120, and toddlers aim for 175-200. Seizures typically become a danger at levels below 35. His HbA1c's are typically between 7.2 and 7.4. A non-diabetic adult has an HbA1c of 5 or less. He is a vigorous eater, and seems to put on most of his weight in muscle. Though I've had not had other children by which to judge, both sets of grandparents believe that he has above-average strength. Furthermore, his balance and fine motor skills are quite excellent.
Angela and I (Jeremy) do all the computation of basal rate on the pump, and monitor his diabetes as best we can. Current research on Type 1 diabetes (which really has little to do with type 2 diabetes, except that both disorders involve insulin) is proceeding at a breakneck pace. Medtronic expects to field an external artifical pancreas within the next four years, and the University of Minnesota's Spring Point Project promises an immuno-suppressant-free permanent cure through the use of porcine pancreatic cells. It is our sincerest belief that the vast majority of Type 1 diabetics will be completely cured within the next decade.