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angelarogers
02-04-2011, 12:26 AM
Hi

My 8 year old daughter has had many stones and procedures over the last 7 years.

During the last two months she has had to have two ultrasounds done. Both times have showed many many small stones in her left kidney. She has also been passing small stones on an almost daily basis.

This week (today being friday) she has been in constant severe pain since monday morning, which does ease a litlle from time to time but never goes. She was admitted to the local hospital where she was seen by pediatricians (no kidney specialists) and had the 2nd ultrasound mentioned above. Obstruction and Infection were ruled out and she was sent home with a "its the nature of the disease" explanation.

The ultrasound showed that the healthy right kidney is measuring at 9 1/2 cm but the left where all the stones are is just 6 1/2 cm. The consultant radiographer who scanned her also said that the kidney just didn't look happy and that the cortex;s??? (Collecting chambers) all looked to have shrunk.

Her last DMSA to test function was about 3 years ago and showed the left kidney was only functioning at 22%. She has had loads of problems since then including surgery and severe hydronephrosis.

What I am wondering is why is there all of a sudden so many stones and why all the pain . . could it be a sign that the left kidney is starting to give up?? Or could there be another reason that the left kidney has gone into hyper stone production?

I understand and acknowledge that any response to this posting is provided for educational and informational purposes only, and is not intended to be a substitute for a health care provider's consultation. Furthermore, I understand and acknowledge that reliance on any information provided by the responding authors is solely at my own risk, and acknowledge that none of the individual contributors and responding authors can take any responsibility for the results or consequences of any attempt to use or adopt any of the information presented in response to my posting.

DAVIDGOLDFARB
04-12-2011, 07:57 PM
Angela, I don't seem to have responded to this...what happened next? I don't think we can easily guess why stone activity sometimes just accelerates without a clear reason.
sorry for the delay...my inbox is full!
---DG

angelarogers
04-13-2011, 12:04 AM
Hi

Don't worry i guess you are a very busy person. April reached a point where none of her pain meds were helping and the pain just wouldn't give at all. For nearly 8 weeks she barely moved. Ultrasounds showed many many small stones in her left kidney and a few in her right kidney, but no sign of blockage or infection.

Touch wood. . the last week all the pain has settled except for an occasional twinge and she is having some pain urinating.

We are off to Great Ormond Street hospital in London in May to meet a new team of Doctors so hopefully something new can be offered.

I wish we could get the pottasium citrate in tablet form here as i think it would be more effective but it is not available in the uk.

Anyway thank you for responding I will keep you informed of progress.

DAVIDGOLDFARB
04-13-2011, 06:04 PM
Angela,
at the ICF symposium last summer we met Dr. Kay Thomas, who is at Guy's. (Maybe the Brits don't call her "DOCTOR Kay Thomas"...maybe Ms? you know...) She has a LOT of cystinuria patients, but I think she is not a pediatric urologist; but perhaps she would be a useful consult for you. She is really interested in cystinuria and very nice. What about potassium bicarbonate? Ever ask about that? Leads to alkalinization too.
---DG

angelarogers
04-14-2011, 12:00 AM
ok I will give both a go. I will try and contact Dr Thomas from Guys and see if I can get her some pottasium bicarbonate. :-)

Thankyou so much for your time ;-)

Katherine
12-04-2011, 08:16 PM
Hi Angela, I am under Miss K Thomas and she is really lovely. She has set up a cystinurea clinic at Guys Hospital once a month and she gets Potassium Citrate in tablet form from the states for her patients. She is definitely worth contacting for your daughter :)

angelarogers
12-05-2011, 12:11 AM
Hi

Wow that is fantastic news. My daughter was put onto effercitrate dispersable tablets but they have stopped doing them. She hates taking the medicine so we are a bit stuck.

I will write to her I think and ask her to contact Aprils Dr at GOSH.

Many Thanks for your response.

Angela