From Orlando, Florida, USA:
My 17-year-old daughter had glucose in her urine on a recent urinalysis after a suspected kidney stone. The pediatrician did a fingerstick and found a blood sugar of 279 mg/dl [15.5 mmol/L]. After a day of hydration, a second check was done and she was 130 mg/dl [7.3 mmol/L]. Her A1c was 6.1. Referral to a pediatric endocrinologist was made. Her next blood sugar was fasting and it was less than 100 mg/dl [5.6 mmol/L]. She started monitoring four times a day for two weeks with sugars between 66 mg/dl[3.7 mmol/L] and 198 mg/dl [11 mmol/L] (average was 106 mg/dl [5.9 mmol/L]). She has had absolutely no symptoms. Her antibody titers just came back high for GAD-65 (8.9) and anti-islet cells (1:32). We were told to monitor six more weeks, but the pediatric endocrinologist told us, "Don't worry about exercise or diet...just avoid candy and fruit juice...she's going to be Type 1--it's just a matter of time." I'm a physician (ophthalmologist) and I can't fathom telling a patient not to exercise or eat right, so we'll be seeking another pediatric endocrinologist. I'm doing a lot of research online into clinical trials...seeing anecdotal reports on reversing antibodies with high DHA, green tea, and vitamins and clinical trials with BCG vaccine injections and various monoclonal antibodies. Right now, I guess I would call my daughter pre-type 1. I will do ANYTHING to try and prevent her from becoming a full blown type 1. Any suggestions would be extremely appreciated. Have you seen any successes in reversing antibody titers?
Sorry to hear about this situation, but glad that your daughter is not physically ill or symptomatic. It depends a bit on the degree of positive titers, but with two titers positive, this does indeed sound like early autoimmune type 1 diabetes in the pre-clinical phase that accidentally showed up with mild but transient hyperglycemia. If you want a recommendation, I would suggest that you contact Dr. Desmond Schatz at the University of Florida in Gainesville since it is not so far away. He is an excellent clinician as well as researcher in this area. If you want to go to Miami, then Dr. Jay Skyler is also an excellent clinician at the University of Miami.
I also would agree that, in general, that the research has been promising and continuing but not yet at a clinically relevant phase. I would have advised not only good nutrition but optimizing exercise, reducing sugar/carbohydrate intake, checking other autoimmune status (i.e., celiac and thyroid antibodies) as well as baseline lipids and vitamin D levels. Cutting down on carbohydrates in foods would make this (presumably) damaged beta cell system have to work less and, theoretically, maybe prolong this "pre-diabetes" clinically. If there were significant low vitamin D levels, I would aggressively treat with sufficient vitamin D3 daily to boost the blood vitamin D levels into the 50 to 80 ng/ml range since there is also some evidence, although not conclusive, that this may be implicated in diabetes too.
Most importantly, continue monitoring frequent blood glucose levels and periodically also the A1c levels so that DKA and any decompensation does not occur that moves from this asymptomatic phase to a symptomatic phase. That will at least have the important benefit of keeping her out of the hospital and being able to do outpatient ambulatory management if and when the blood sugars rise and the insulin decreases, allow insulin to be started early and also help save the damaged beta cells from further demise. Almost all of our own patients get diagnosed in these early phases and we have generally done outpatient teaching and training quite easily to accomplish such goals. Aggressive early insulin use with a multidose regimen and tight target levels allows this to happen coupled with strong education and psychosocial support but based on the knowledge about blood glucose levels frequently checked.
The two best teaching manuals are Type 1 Diabetes in Children, Adolescents and Adults by Ragnar Hanas, MD, and Understanding Diabetes, 13th Edition by H. Peter Chase, MD, and David M. Maahs, MD, PhD that you can find on the web or special-order from a local bookstore.
Best of luck to you, your daughter and your family with this difficult situation.
Please contact the people who run TrialNet to see if there are any clinical trials for which your daughter is eligible.BH]
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