Pediatric Urology

[twinmom]

I am a mom of twin girls who are now 10 months old. Twin A has had numerous UTI's and been admitted to the hospital because of them. We had a VCUG done back in September where it was determined she had a grade 4/5. After two more breakthrough incidents they just did another more indepth test. She has shown no improvement. When visiting with the doctors at UVA I was told that 80 to 90% of childern with kidney reflux experience hearing loss. That they were unsure why it happened but it seemed to go hand in hand with the reflux. My daughter (Twin A) has lost her hearing and at the time they could not pin point why. I am curious to know if there is anyone else out there that has this same problem. Twin A has severe scarring on her kidneys and in looking at her twin, we found out that she has it as well. Although she has not lost her hearing as of yet. After numerous changes in medicine due to the breakthroughs, they placed her on a sulpher drug. Last Friday we found out that the drug is causing her liver damage because of the toxins in the drug. Is there anyone that has found a medicine that is successful in treating this? We have talked about the possiblity of needing kidney replacements for both girls but the odd's in finding a donor for both is unreal. Has anyone successfully out grown this with a grade 4/5? I guess what I am looking for is hope that there is a light at the end of this very dark tunnel. Thanks.