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[IP] Updating the Kidney Saga(LONG)

Dear IP-ers:
     I was going to entitle this "Important News about Melissa" but figured
you would all delete it, thinking it was THE virus!!!.....
     Anyway, I am THRILLED once again, 10 months later, to report that
Melissa's 24 hour urine was 100% STABLE!!!!!!!! Her pediatric nephrologist was
elated, although she wouldn't mind seeing the 300 mgs of protein (which is the
upper limit for microalbuminuria 30-300 mgs) even lower. However, she said
that level of protein could be due to scarring in the kidneys, or due to
orthostatic proteinuria ( meaning she sheds protein when she's upright - which
she was doing several years prior to diagnosis anyway) or due to Melissa's own
physiology & hence might not be able to improve. Nonetheless, she wants us to
explore with Melissa's endocrinologist ( who is an adult endo & has lots of
pts on ACE inhibitors) whether or not some of the "newer" ACE inhibitors might
not prove even MORE successful than the Vasotec has been.
    For those who are unfamiliar with the lengthy saga of my 16 yr old's
daughter kidney problem, you can read the gory details at  
<A HREF="http://virtualnurse.com/diabetes/renee.html">An ounce of kidney
prevention...</A>(http://virtualnurse.com/diabetes/renee.html) After you've
done so, continue with this update.....
    Most of our visit was spent with ME asking all the questions of the ped.
nephro. since there wasn't much for her to do with Melissa. Once again she
reiterated that her ped. endo colleagues at St. Christopher's  are now
screening ALL kids with diabetes upon diagnosis for a baseline microalbumin
level & that in the past year, she's had 5 referrals for kids with proteinuria
( anything over the 300 mgs level). We also discussed the use of Vasotec (or
other ACE inhibitors) for early intervention, since Melissa's case advanced so
incredibly quickly. Her feeling is that it's such a benign drug ( as far as
anyone knows to date) that's it's foolish NOT to prescribe it. Since 30% of
pts. on dialysis are diabetic & since probably 1/3 of all diabetics will
develop kidney problems, the availability of such simplistic intervention is a
"no-brainer" decision. While we were chatting (easy to see why they run 2
hours behind schedule!!!), she pulled out a huge file of articles she'd saved
on this topic & found one by a ped. endo (or nephro - not sure) stating that
the evidence from a group of kids with diabetes less than 7 years out from
diagnosis was so compelling that ALL kids should be screened for protein in
the urine WAY SOONER than was then being done. The punchline here????...The
date of the article was 1984!!!!!!! Guess not too many doctors read it, huh?
    Now, before I send you all screaming to your phones, please keep in mind
that Melissa's scenario is NOT NOT NOT typical - BUT even if she only
represents a TINY percentage of the juvenile diabetic population, the fact
that a medication DOES exist which can (G-d willing) ameliorate or alleviate
future kidney problems is worthy of being UNDERSTOOD by all physicians who
deal with the diabetes community. The nephrology "gurus" unequivocally believe
this could alter the course of future kidney disease, as they know it. And if
I haven't convinced you yet, then picture yourself in my shoes when I
nonchalantly asked Dr. Conley where things would have been had we NOT followed
up & pursued this (including the kidney biopsy Melissa underwent in November
1997). She didn't miss a beat - just looked at me & said "I have no
doubt..she'd have been in kidney failure within 5 years!!!"GULP.....
And you all thought hearing I had breast cancer 3 wks after Melissa's kidney
biopsy was hard to handle!!!! I think I aged 10 yrs in 10 seconds!!!
    So......my message once again is 1) odds are EXCELLENT that your child is
fine  2) if however, there is a significant amount of protein, a ped. nephro
consult might be advisable  3) at a minimum, an annual 24 hr screening (which
simply means keeping the child relatively inactive & collecting all the urine
from the second morning specimen(first one goes in the toilet) until the
following day's first morning specimen) will give YOU the peace of mind of
knowing that there hasn't been any impact on the kidneys from the diabetes.
and 4) Dr. Conley also emphasized the importance of maintaining the excellent
control Melissa now has ( last A1C in december was 6.9), BUT also stated that
there is a significant portion of the diabetic community who will do
EVERYTHING wrong & NEVER encounter any complications and 5) finally, (and this
also stopped me short), the reason she's so proactive about the need for
screening all children with diabetes is that the adults who encounter kidney
failure AREN'T in their 60s or 70s - but rather the majority are in their 20s
or 30s.....so, if we're able to do something TODAY to prevent that scenario in
the future, then we are all remiss if we don't INSIST on such simplistic
screening to reassure ourselves.
     And on THAT note, wishing you all a Happy, Healthy holiday. I, for one,
having spent last year's Passover seder home alone (insisted my family go to
our friend's), reeling from the aftereffects of my final chemotherapy, am
grateful to be able to spend all these hours in my kitchen preparing an
elaborate meal for our family & friends (my aching knees notwithstanding!!!)
and also grateful that the state of the art of medicine in 1999 DOES offer us
means of combatting deadly diseases!!!

regards, Renee 
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