From Indianapolis, Indiana, USA:
My son was diagnosed in 2014 with type 1 after "off/on" symptoms for three years that gradually worsened. By the time he was diagnosed, his A1c was 11 and he was in full DKA but with a blood sugar of only 350 mg/dl [19.4 mmol/L]. He was sent to ICU and we were told he was hours away from dying. He only had one slightly elevated antibody at the time, which the doctors told us was unusual, given the severity of his DKA. They questioned MODY or another type of diabetes, but he quickly became insulin dependent and they determined given his insulin demands he was probably type 1.
My mother, my grandmother and my great-grandmother, and I all have diabetes, starting with insulin resistance in our teens to 20s to 30s, ending up insulin dependent at different ages. My father has it as well, although his onset was in his 50s, and he responds well to metformin (women in our family do not).
Our daughter, our 14 year-old-son's full biological sister, had no symptoms and seemed fine until last year. At age 5, she had two separate episodes of waking up, vomiting, and then having climbing blood sugars. The first time she was 269 mg/dl [14.9 mmol/L] on a home meter, then 209 mg/dl [11.6) per laboratory blood work, with large ketones and glucose in her urine. This was Fall of 2014. However, because she "looked good" by the time we got to the doctor, they said it was a fluke and that she was likely just getting ill. She did not get ill and improved after lots of water and time, and no one in the family became ill. About three to four months later, it happened again. Her blood sugar that time was over 300 mg/dl [16.7 mmol/L], but 260 mg/dl [14.5 mmol/L] by the time we got to the office. Her A1c was 5.4. No blood work was done the second time. The first time, the doctor drew the full work-up of antibodies. All were negative, another reason he cited for not diagnosing diabetes. The doctor had no explanation for the repeated episodes and deemed it "one of those things." He did say she might get type 1 in the future.
Since that time, our daughter has continued to have urinary accidents, frequent urinating, and "bouts" of excessive thirst and frequent urination. Once completely continent at night, she has now returned to pull-ups and soaks them nightly. Other than the pee symptoms which are consistent, other symptoms seem to come in "waves" of severity, depending on the number of carbohydrates I permit her to eat. The fewer the carbohydrates, the fewer symptoms. However, she is a growing kid so we don't restrict carbohydrates entirely. She has seemed to catch one virus after another since early September and now is complaining of constant, severe itching all over her body. She has no rashes or eczema. She is also increasingly tired in the mornings and hard to get up for school. She is also "crankier" and more emotional around mealtimes than in the past, sometimes having "crying jags." She was in preschool for four years prior to this and has four siblings, so she has been exposed to many germs and hasn't seemed as "prone" to catching them as she is now. Otherwise, she is very happy, loves school, and her teacher reports she is adjusting well to her new grade and the classroom. She is thin built, and to our knowledge has not lost any weight, another reason the doctor said it could not be diabetes.
Our pediatrician understands our concerns, but is following the endocrinologist's advice that this is not diabetes because of the absence of antibodies and is out of ideas. He did refer our daughter to a metabolics specialist, who found evidence of "muscle breakdown" in her urine and other suspicious findings that led him to test for glycogen storage diseases. The test for GSD came back negative. An ultrasound performed by a urologist showed she has normal bladder function. We've been advised to watch our daughter and put her on a moderately low-carbohydrate or complex (not fast-acting) diet and see if symptoms persist.
The exhaustion and urinating is now worsening slowly but steadily, although not yet to a level that is fully alarming. This morning, we had difficulty waking her for school. She acted similar to our son when his blood sugar is high and wouldn't rouse easily after several attempts. Concerned, and because we haven't checked her in a long time, we took her blood sugar. It was 185 mg/dl [10.3 mmol/L] after a fresh hand wash and 169 [9.4 mmol/L] 20 minutes later. She did eat a lot of carbohydrates the previous night - pizza and went to a fair where she ate a lot of candy. Other than being tired, "crabby" and having excessively dark circles under her eyes, she seemed fine, no vomiting. Her brother also has a blood ketone meter, which we used to test her at the same time as the blood sugar. She was 0.2 - in the low range on the meter.
Should we be concerned by these new early morning numbers and insist on a second opinion from another endocrinologist? Are there any conditions that might "mimic" diabetes and/or cause numbers to ebb and flow? Is 185 mg/dl [10.3 mmol/L] a high fasting number for a six-year-old, given what she ate the night before (about 12 hours)? Can diabetes come on slowly in a child, and can a child have it without antibodies? Nothing quite adds up and we are looking for another opinion.
I am frustrated, confused and somewhat concerned.
Sorry this is so complex and we are not all as smart as we would like to be. I have three patients with a similar history and all are treated with low doses of insulin, which has stopped such episodes. As with your daughter, all were antibody negative and when we began insulin with somewhat similar stories of distinctly abnormally high blood sugar levels periodically, sometimes instigated by a virus of some kind and sometimes without explanation. What we do know is that not all type 1 patients have positive antibodies, just most of them. So this suggests some other types of pancreatic damage that also interferes with insulin production and seems to worsen over time, with growth and pubertal changes, etc. I would favor a stricter approach to avoiding simple carbohydrates, like what we do for those with type 1 diabetes since your description is that excess carbohydrate intake or fast carbohydrate intake is associated with hyperglycemic bursts. She should have at least every three months, A1c levels documenting what the overall "average" glucose responses are and making sure that there is not a deteriorating pattern. I would assume that this would not be sufficient and based on my few patients like this, would then start small doses of insulin with the goals of avoiding such bursts and avoiding any DKA or low level chronic hyperglycemic problems. I suspect she will need small doses of mealtime Humalog or NovoLog and an equally small dose of twice-a-day Lantus or Levemir as basal insulin if she is following a similar pattern to my patients. Having said that, however, I must also admit that none of us know exactly what advice to provide under these circumstances so staying in close contact with your diabetes for consultations is most important.
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