Recently I had my follow up with the geneticist/Endocrinologist of last August's appointment. I absolutely adore her, because I have her personal email and every question I have is a promptly answered. Learning to live with MODY hasn't been all roses and sunshine, as I've developed a swelling of my left kidney (called hydronephrosis) which I've had an ultrasound and abdominal CT for and am scheduled for a renal perfusion scan in two weeks. It hasn't affected the overall function of said kidneys but it's there,like an albatross, needing attention. There are no kidney stones (#1 cause) and the geneticist feels like it's MODY caused, such as stricture in the ureter causing back flow into the kidney. The renal perfusion scan will tell what's going on. In the meantime, I'm going to work very seriously on my a1c and try to get it down before the school stress starts up again. I'm going to prebolus, low carb it as much as I can, and try to eat more fruits and veggies to take the D out of the picture of kidney stressors. I'm also going to start taking some antioxidants, fish oil, and give glipizide another whirl. We talked a lot about the added risks to the kidneys with this condition (1 report of cancer,& just various kidney issues) and she recommended a yearly ultrasound with that yearly appointment. And we are talked about the genetics of it,& risks/dangers of it being passed down & the no way of knowing how the deletion will express itself in the next generation. It makes me kind of sad because that's not an inheritance anyone needs. The geneticist felt that if that class of drug didn't have results on the D, then other oral meds probably wouldn't either. Also, the exocrine function of the pancreas can be affected in MODY 5 and if that should happen you need (oral pancreatic digesting enzymes. I now need to schedule my sons yearly genetics appt...where we'll have discussions on variations of the above plus developmental issues.It gets heavy, fast. It's pretty certain that he will get diabetes but at what rate,no one knows.
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