Daughter Just Diagnosed

[Woketman]

Hi everyone. My nine year old angel was just diagnosed last week as a cystinuria kid. We evacuated from New Orleans for hurricane Gustav to Jackson, MS. There, on Sunday afternoon, she started having abdominal pains. We took her to the emergency room on Monday thinking it was an appendicitis. They found huge stones in one kidney and a very small one being passed from the other kidney (the source of the pain). They did not diagnose as cystinuria yet, but told us that she would need surgery to get rid of the stones once we got home. :mad: We contacted Dr. Raju Thomas at Tulane Medical Center in N.O. (this guy is AWESOME! Very knowledgable and he really cares about my little girl). He operated on her last Tuesday. She will have another round to get the remaining stones this next week.

I hate the fact that a little girl as sweet as she is going through all of this. :(

But we'll get through it and learn to live with this, thanks to folks like you.

[George Brown]

Hello Wocketman, and welcome to the International Cystinuria Foundation. Sorry to hear your daughter was just diagnosed with cystinuria. I somewhat know the feeling of evacuation as we were evacuated from Myrtle Beach South Carolina 10 years ago for hurricane Bonnie. We spent 3 days in a shelter, high school gym; eating corn dogs, ham and cheese sandwhiches and the like. We got to go back although our condo accomodations was shut down. We relocated to another one south of where we were staying. It was not a good experience. I'm glad that you found a good doctor to take care of your daughter. Cystinuria can be a bear at times and I wish you and your family the best of luck in dealing with it.

[Woketman]

Thanks. The thoughts are appreciated.

[ceubank]

So Sorry about your daughter. It can be a long difficult road for both you and your child. My daughter was also diagnosed at nine and is now twelve. She is actually just out of her first perc surgery for just over 2 hours. The sad thing is we thought her meds were working---not so. We just started her on Thiola(2 weeks ago) and have had no side effects yet.She was on captopril and poly citra k before that they did very little.It is not easy and there is no norm, everyone is different. But keep researching and find the best Dr. you can. My prayers are with you. If you have any questions just post.
God Bless,
Carol