Child Health

Hi,

I have posted on a couple of other boards, but wanted to see what information I could get from someone here. My son Davion, is six years old and battling chronic renal failure. He has spent a large amount of the past six years in the hospital due to infections, surgeries, and testing. He also suffers from extensive urological problems, and because he cannot urinate he has a vesicostomy. I am curious to know at what point is it reasonable to seek a second opinion? He sees several different specialists, but we are considering a second opinion from another pediatric urologist. Any advice would be appreciated.

                                    Vanessa

I'll be curious to hear the doctor's response, but my own personal response is "when it seems like it's warranted!"

My 15yo dd issues aren't as severe as your ds, but she has some relatively significant bowel problems. When our local Children's Hospital was running out of ideas to help her, I started soliciting other opinions. The 2nd doc we talked to was able to give us some ideas but wasn't able to run the tests, so referred us to another doc. That doc worked at two hospitals, only one of which our insurance accepted. The doc would only agree to do the exploratory procedures at the hospital our insurance wouldn't cover, so we had to go back to Children's Hospital.

Even tho' the two follow-up docs weren't able to do any procedures to help us, it DID provide extra eyes looking at the problem, and I was able to get those docs' impressions as to what we needed to do for dd. By the time I got back to Children's (and by now it was a new doc at Children's), we had some new ideas to try, one of which was very helpful. The new doc at Children's was also able to recommend a new med for dd which worked better for her.

I was honest with the new docs about my reasons for seeking a 2nd opinion -- that we loved our old docs who'd done much to help us, but that they'd told us they were running out of ideas to help dd, so we were looking for a fresh perspective. I didn't want the docs to think I was just a hard-to-satisfy mom who was doctor hopping. We really, truly just needed some fresh perspective.

Good luck in getting the answers you're seeking. Your poor little guy has been through a LOT.

Thank you so much for your reply! I definately do not want to come across as a difficult mom, but I worry that our current urologist whom we LOVE, just does not have much left to offer. My son had surgery for Posterior Urethral Valves ( an obstructiuon in his urethra that formed while I was pregnant) when he was two months old. The urologist who did the surgery had NO explanations as to why Davion stopped urinating ONE week after that surgery!!! To this day he STILL cannot urinate, and no one has been able to tell us why.

There is a HUGE level of frustration, because he developed massive bilateral urinary reflux, that essentially "ruined" his right kidney, and left him with only 45 to 50% of his left kidney working. To make matters worse, he gets almost CONSTANT UTI's and kidney infections that require hospitalizations of two weeks or more at a time. His left kidney is slowly going to fail him, and he takes about 10 to 12 medications a day, including some for gastroparesis, and severe constipation. I worry that with each new infection he gets with really difficult bacteria to treat, we are damaging what little function he has left of that left kidney. I have considered going to Johns hopkins in Baltimore, CHOP in Philly, or Boston childrens Hospital, because I think we need to go somewhere where they see children who have complex issues like my son's. I just do not want to "burn any bridges", and I worry that the good relationship that we have now, will become strained with our current urologist.