From Ouagadougou, Burkina Faso:
We are now living in West Africa and do not have easy access to good medical care. This is causing lots of concern now because our seven year old is having some blood sugar problems. When we were visiting in the United States this summer, she was hospitalized because of a heart problem. In the Emergency Room, my daughter's blood sugar was over 200 mg/dl [11.1 mmol/L], even though she'd not had breakfast. So, she was hospitalized due to hyperglycemia as well as cardiac arrhythmia. Her sugars, while hospitalized, were slightly high and they sent us to an endocrinologist. Based on her sugars and her family history (my dad has some autoimmune diseases), the doctor said she did not yet have type 1, but he was positive she'd be eventually be diagnosed with it. He said to test her levels twice a day.
So, we went back home to Africa for a few days and the had to go to Paris for her heart surgery since our health insurance is French. While there, I asked that she be checked for diabetes. They were reluctant, but did so. They kept her for a morning and did a glucose tolerance test. The results were normal. They said she doesn't have diabetes and told me to quit testing her blood sugar. They did not want to look at the monitor's results.This seemed odd to me. It was the opposite of what the doctor in the U.S. had said. Plus, there are days when her sugar is fine and others where it shoots over 300 mg/dl [16.7 mmol/L]. So, it's not shocking that they got normal values one particular day.
This in mind, when we got back to Africa, I kept testing her, but just once or twice a week in the morning. I noticed that her fasting morning level is nearly always high, usually between 110 and 126 mg/dl [6.1 and 7.0 mmol/L]. Several are higher, up to 185 mg/dl [10.3 mmol/L]. She is not losing weight or urinating a lot, no classic diabetes signs, but she is very thin and not in good general health.
I have brought my concerns to our general pediatrician here. She agrees that my daughter's blood sugars are "odd." She told me to test my daughter four times per week and call when it is over 126 mg/dl [7.0 mmol/L]. I am calling every time we test, of course.
I know this is an enormous question, but it boils down to this: is it probable that she is developing type 1? Have you ever heard of a case similar to this? Is testing her four times a week enough? Is there some medication she could take to slow down the development of type 1, if that's what this is? French doctors are often not up on the latest developments, so I need to be well prepared.
What you are describing is definitely not normal. It could be the earliest signals of the pancreatic beta cells dying and, thus, diabetes. It could be a variant form of diabetes that is not classically type 1. In any case, while difficult to give you more specific advice, I would favor your being a very keen observer. Weight loss, excess urination and/or excess thirst are all signs that the diabetes has become symptomatic and, thus, insulin likely needed. If she has a variant form of diabetes, this may also be detected by special genetic testing (for instance, MODY types) while classical type 1 diabetes may be checked with islet and GAD65 antibodies. Such antibodies are not perfect and only positive about 60 to 80% of the time, even in classical type 1 autoimmune diabetes. It is likely these are not available in Africa.
I would suggest testing three or four times each day and not random testing each week since you need to know if there is a persistent change and the high sugar levels do not return to normal. Unfortunately, I am not sure that being in Africa is the safest place for this child under these circumstances. If you have had contact with prior diabetologists with whom you have confidence, then you may also try to contact them and get more specific advice.
Original posting 6 Feb 2006
Posted to Diagnosis and Symptoms
Last Updated: Tuesday April 06, 2010 15:10:06
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