From Louisville, Kentucky, USA:
My 13 year old daughter was diagnosed with type 1 diabetes a week ago. She was having frequent urination and extreme thirst. At her visit to the pediatrician, she showed glucose, protein and ketones in urine (very little ketones). She had fasted, so they took her blood and her sugar level was 241 mg/dl [13.4 mmol/L]. The pediatric endocrinologist could not see us that day so they sent out a home health agency, which immediately started her on insulin shots that night.
I have heard of a three month sugar level test, which they did not do, as well as an A1c test, but I'm not sure what that is yet. Her levels remain around 240 to 250 mg/dl [13.3 to 13.9 mmol/L] after eating and her morning fasting level is now around 150 mg/dl [8.3 mmol/L]. Without any other test, I am concerned that she was diagnosed too soon. Should I be concerned or just move forward with their decision?
I feel so helpless and I know as a parent I am still kind of in the denial stage. I hate this for my daughter. She is currently taking insulin twice a day.
Your daughter was not at all diagnosed "too soon." She clearly has diabetes mellitus based on your account.
The "three month blood sugar test" and the "A1c test" are the same thing. For complete clarity, this test is most properly called the "glycosylated hemoglobin test" of which the most commonly performed is called the "Hemoglobin A1c test". We do sometimes shorthand this further to "A1c test". It really is NOT a "three-month blood sugar test"; rather, it is a measure of glucose sugar attached to the blood protein called hemoglobin. Once glucose attaches to hemoglobin, it stays stuck, at least until we "re-cycle" our hemoglobin. On average, persons with normal hemoglobin re-cycle their hemoglobin about every four months. So, at any given moment in time you are making brand new, but eliminating old hemoglobin. So the HbA1c test perhaps is really an assessment of the overall "average" glucose over the prior two to three months, and not really four.
EVERYONE, diabetic or not, has hemoglobin in their blood and has glucose in their blood and therefore has some glucose stuck to there hemoglobin; the amount depends on the amount of glucose and the quantity and quality of the hemoglobin. So, for most normal persons, the normal A1c is about 6% (a percentage of hemoglobin that has sugar stuck to it.) This test is typically NOT recommended as a tool to diagnose diabetes, but rather a test to assess the degree of relatively recent hyperglycemia.
I do not know who is overseeing your child's insulin doses but it is most assuredly NOT the home health agency. They may be providing you with supplies and support, but only a physician or a nurse working on behalf of a physician may prescribe insulin and make insulin adjustments. With more education, you will learn about how to make insulin adjustments on your own, the diabetes "honeymoon," sick day management, and many other things.
Your feelings of denial and helplessness, etc. are understandable and normal. You should ask your pediatrician and/or the pediatric endocrinologist to refer you to a Certified Diabetes Educator as soon as you can, even if you have not yet had a formal visit with the pediatric endocrinologist and their Diabetes Team. But, I wouldn't be surprised if your daughter would require a bit more insulin plus the institution of a meal plan and activity plan.
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