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[IP] Annual Update on Melissa's Kidney Saga (long)

       I delayed jumping into the recent fray over children/complications and 
CDE comments because I was awaiting Melissa's latest lab work. To recap, 
Melissa was "shedding" protein years before dx. She was labelled with 
"orthostatic proteinuria" which basically meant she was one of those kids who 
sheds protein when upright. 
   In July '95, not quite 3 yrs post-dx, a 24 hr urine collection was done 
because she was then 12 yrs old: results: 300 mgs protein. Her ped endo 
alluded to ACE inhibitors, but wasn't convinced that was an answer.
    2 yrs later, having left her ped endo for an adult diabetologist, we 
re-ran the 24 hr & it was up to 500 mgs. She was started on a low dose of 
Zestril, then switched to Vasotec.  Yet when the 24 hr was re-done 2 months 
later, it was up to 1100 mgs, followed by 1200 a week later. Although he'd 
never seen the meds cause a rise in protein, the doc ordered Melissa to stop 
the ACE inhibitor & re-run the 24 hr urine 2 wks later: result: a 
mind-boggling 2600 mgs of protein!!!! Putting her back on the Vasotec brought 
it down to 1500, but the bizarre circumstances necessitated a kidney biopsy 
to rule out any other causative factor. Her kidneys were healthy, albeit 
"leaky", a predisposition that the diabetes was apparently exacerbating. Her 
dosage was slowly titrated up to 10 mgs per day from the intitial 2.5 mgs., 
and we basically "held our breath" until the next 24 hr collection in the 
spring (which coincided with the conclusion of my own chemotherapy for breast 
cancer - not one of our more amusing winters!). Results: an astounding 288 
mgs!!! Our ped nephro was delighted, I was a blithering idiot & Melissa was 
basically embarrassed by my antics! LOL...One year later, spring 1999: 300 
mgs. Her ped nephro said if that was "as good as it gets", she'd be 
satisfied. In the meantime, with growing evidence of just how 
"reno-protective" ACE inhibitors were proving, that same Children's Hospital 
that had done nothing when her 24 hr was 300 mgs was now starting ACE 
inhibitors as soon as children shed more than 30 mgs/24 hrs. (30 - 300 is 
microalbuminuria/ less than 30 is normal). 
    Spring 2000- back to the lab where they ran the wrong test, necessitating 
an additional 24 hr collection, but we forgave them when the results came in 
at 166 mgs!!! Why? - could be because she was actually TAKING all the pills 
after we bought one of those daily pill boxes.....
    And now the latest results - a "personal best": 117 mgs of protein /24 
     So - this is long enough & those who know me have already heard my 
"soapbox speech" about the need for annual 24 hr urines & how most endos are 
NOT apprised about the mounting evidence endorsing the use of ACE inhibitors 
(check out the newest Diabetes Interview for a long story stating precisely 
this view) & how even if you just buy yourself "peace of mind" it's worth 
insisting on an annual 24 hr urine collection (Melissa's first - morning 
collection by the way, even with a high 24 hr,  was perplexingly NORMAL!)! 
Suffice it to say that if I'd been in the audience with the speaker who 
stated kids don't get complications before age 20 because they're "protected" 
through their teens, he'd have had a BIG headache by the time I "re-educated" 
    And since life is capricious, our delight in these results was 
unfortunately tempered by a CBC run at the same time that shows she's 
severely anemic, so now we're off for more blood work to explore 
why.....sigh.....and need I tell YOU all how the 311 bg rebound from an 
earlier low last night did NOT help Melissa swallow that latest bit of 
news!...sigh again.....But then again, her 8.1 A1C also reflects that 
"senioritis" doesn't just apply to monitoring school work, and that there's 
still room for improvement, despite how responsibly she approaches living 
with this dia-BEAST-ie!!!
Regards, Renee (melissa's pump mom)
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