Eight year honeymoon? Misdiagnosis? A fluke?

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sasha Posted: Wed, Apr 24 2013 2:06 PM

My daughter was diagnosed with type 1 diabetes at age 4. Soon after her diagnosis she went off insulin and she hasn't taken it since. She's now 12. 
She has been eating in a low glycemic manner since shortly after her diagnosis. Almost all the doctors we've spoken to have believed her diet has been key in keeping her off insulin.
Although we've always wondered if it was a fluke or something else, we have been told it is type 1 diabetes. We've also been told to watch out for puberty as that could be a time when it would come back.
About 2 weeks before her diagnosis she had one day where she kept going to the bathroom. Three nights before diagnosis she started having to use the bathroom during the night every night. On the morning of her diagnosis, she felt nauseous for a few hours, but it went away and she had no other signs of being sick. She was not under any stress.
We actually went to the doctor that day for her routine four-year-old check-up. As part of that, her urine was checked and found to have ketones. Her blood sugars measured 235 in the office. Later on at the hospital she was at 285.
She tested negative for antibodies (I do have a note that one number might have been slightly high, but I hate to say I don't quite remember what the notation meant). Her HbA1c at the time was 5.4. She did not have a C-peptide test or any other tests.
She has since been getting an HbA1c about once a year or so and they have been normal. 
I don't check her blood that often as I want her life to be as normal as possible. She's had numbers in the 140s and once almost at 200 (but it was late at night and our last test strip, so I couldn't repeat it to make sure).
During the holidays this past December, she was sick with a cold and had an allergic reaction in the evening. I noticed she went to the bathroom twice during the night so I checked her blood glucose when she woke up. This wasn't until about 15 hours after she had last eaten. She was at 125, which is higher than anything I've seen since the period close to her diagnosis. More recently when I checked her fasting blood glucose she was at 100.
Does anyone have any thoughts or suggestions?

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Debbie replied on Mon, Apr 29 2013 2:06 PM

I would recommend that you make an appointment with a pediatric endocrinologist.  When you meet with the endocrinologist, you may want to ask about the following concerns:  Could your daughter be experiencing “stress” hyperglycemia?  Should your daughter be tested for antibodies again?  Also could your daughter have a non-classical form of diabetes?  In the interim, please make sure that you know the early signs and symptoms of diabetes which include: excessive thirst, frequent urination, increased hunger, weight loss, blurry vision, fatigue, skin infections, and wounds that will not heal.  If your daughter is experiencing these symptoms then you should call her doctor right away.  Good luck!

Debbie Butler, LICSW, CDE

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sasha replied on Mon, May 6 2013 9:02 AM

Sorry it's taken me so long to respond! And thank you so much for your response. Since her diagnosis, my daughter has been seeing pediatric endocrinologists through the hospital where she was diagnosed. They have not wanted to do any other testing or consider non-classical forms of the disease telling me they are all heredity-based. I am looking for an endocrinologist through another facility to gain a different perspective. 

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Debbie replied on Tue, May 7 2013 2:54 PM

Ok well good luck!  You may also want to consider coming to the Joslin Pediatric Unit for a second opinion.  If you would like to -make an appointment at Joslin in the Pediatric Unit then you can call 617-732-2603.


-Debbie Butler, LICSW, CDE

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sasha replied on Wed, May 8 2013 8:59 AM

Thanks. We would really like to come to the Joslin Center, but unfortunately we live in another state and that isn't an option for us at this time.

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