Hi Dede, et.al.,
Tara has rather severe calcification of the kidneys from too much Vit. D and too
much diarrhea. She started on Rocaltrol when she was 4 years old and she is 37
this week.She recently had a 24 hour urine to check her citrate level which was
very low and she is on 9 pills a day of potassium citrate. This helps prevent
further calcification and more stones in the kidneys. Her nephrologist watches
her very carefully because she has lost 50% kidney function.
I hope the parents of the younger children on this board watch the creatinine
clearance and amount of calcium in the children's urines more carfully when they
become adolescents. As a child she had monthly 24 hour urines but as she got
older she protested, was busy, etc., and we didn't follow through enough. We
also didn't know that malabsorption and diarrhea also cause kidney problems.
Best wishes,
Linda









--- In apeced@yahoogroups.com, Dede Leydorf <dleydorf@...> wrote:
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> I think it is important to listen to our doctors. But, I want to share my
experience with calcium. I have had hypoparathyroidism since age of 9. My
doctors for years had me on very high dosage, about (8) 600mg pills a day or so
for years. It may have been that more was needed during my growth years. But, I
remained on that level until my mid-twenties when I started to experience the
early stages of kidney failure. Yet, the endocrinologist I was with was
unalarmed by my tests and kept me at the dose. Finally, in my mid 30s I went to
ucsf, and the director of endocrinology was agast at the level of calcium I was
taking and reduced my intake down to about one third of this to about 1500 per
day. The doctors I consulted said that all the body can absorb is 1500 max day,
no matter how much you injest, and the rest is just more work for the kidneys. I
was terribly ill for about a year during this process of taking less as my body
had to adjust to this new
> level. But, after I adjusted, I felt much better with more energy. The damage
to my kidneys however, is permanent. I now take 1000 mg a day since my doctors
are concerned for my kidneys and want to make them last. But, long story short,
live in Europe, and feel fine and in fact better on this dose, but they check my
kidneys regularly and it worries me. I did not need that load all those years
after adolescence was necessary, and it is questionable if i needed it in my
youth either. I am making restitution with my kidneys, now and watching and
waiting. 
> --- En date de : Sam 6.6.09, Orange, Jennifer <jorange@...> a écrit :
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> De: Orange, Jennifer <jorange@...>
> Objet: Re: [apeced] Concerned
> À: apeced@yahoogroups.com
> Date: Samedi 6 Juin 2009, 16h30
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> Wow, that's a lot of calcium. When doctors have made changes with Julia's
calcium and calcitriol too quickly she has been affected. I would ask for daily
bloodwork to make sure his calcium levels don't change too quickly. Good luck!
> Jennifer
> Jennifer Orange
> Torys LLP
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> From: apeced@yahoogroups. com
> To: apeced@yahoogroups. com
> Sent: Sat Jun 06 10:26:02 2009
> Subject: [apeced] Concerned
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> Hi,
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> My son was released Wed after two days in the hospital with low calcium &
potassium. His endo is out of town but another endo saw my son and put him on
double dose of calcitriol(4 -.25 per day) plus 4000-6000 mg of calcium. I am
very nervous about him absorbing too much calcium. Any thoughts?
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> Thanks, Vicki
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