Our journey with VUR
Lizzie was born a perfectly healthy, happy, beautiful baby. We had no idea how that could change in an instant. One day Lizzie slept a little more, ate a little less, and seemed a little sluggish. Nothing out of the ordinary for a six week old baby. Later that evening, her temperature spiked. She was taken by ambulance to the nearest Children’s Hospital, and so our journey began. We spent a terrifying week at the hospital, waiting for answers while they ran test after test. She remained on a heart monitor much of the time, for a heart murmur, and was started immediately on IV antibiotics. We were terrified. We had no idea what could be wrong with our little angel. After many tests, and then many more tests, we discovered that she had grade V bilateral Vesicoureteral Reflux. We also discovered that she had 4 ureters instead of the normal 2. She had gotten a UTI which had moved into her kidneys because of the birth defect (or so we thought at the time). Because she was so young, the infection had moved into her lungs and blood, and had caused our sweet little girl to become very, very ill.
By the end of our hospital stay, she was doing great, and the news was good. We were told that she would eventually need surgery to correct the problem, but that wouldn’t be for another 5 years or so. She was put on a daily dose of antibiotics which she would take until the surgery. We were so relieved. Her condition was treatable, and even if it required surgery, the surgery was 95% effective.
Unfortunately for us, the antibiotics were not effective. Six weeks later Lizzie had another infection, and we were back at the ER. This continued to be her pattern. She would have 10 days of high dose antibiotics (abx) and then go to a low dose. 3-4 weeks later she would have another infection. After 4 infections, including one resistant infection which required a longer hospital stay, and a pic line so that we could administer IV abx from home, it was decided that she needed surgery.
We were terrified at the thought of our 5 month old needing a 3 hour surgery, but we had been assured that the surgery was effective, and would end our battle with VUR. Boy were we wrong!
health freak said,
January 10, 2009 at 5:34 am
My 9 mo baby girl has grade III Kidney Reflux. Despite being on daily antibiotics, she still has UTI attacks every month. I am just so terrified to think of my baby being operated on for the Ureter Reimplantation surgery and I know that even with a surgery, she may not be 100% healed. But everyday since she was 2 mths old (the day we found out she had KR) is a nightmare for me.
In your opinion, do you think a Ureter Reimplantation surgery would reduce the UTI attacks? I am terrified of my baby getting bladder spasms after the surgery as I’ve read that the spasms are excruciating in pain.
Would love it if you could email me with your advise and experience.
Thanks
Shireen
Pearly said,
September 8, 2009 at 5:22 am
My baby boy is 6months old and have been diagnose with UTI since he is 8weeks old..till date he have been admitted to the hospital twice for UTI. Other times (around 6times) we only administer antibiotic at home and hope for the best on his next urine test.
Anyway, there is very little time passed by without any bacteria in his urine. Everyday is like a nightmare because we do not know when his fever will spike. Seeing his face taking the antibiotic is very painful, but seeing his expression with the IV antibiotic really crushed my heart.
Due to monetary constraint, we have to go to the government hospital for check up. The queue for the scan is very long. We are trying to get more info and advice on this matter and what is the best way we can go about to treat him.
Really would like to have your advice on this matter. Please email me when you are convenient.
workjw said,
October 17, 2009 at 12:54 am
Sorry that I am just getting back to you, I haven’t done much with this site lately. Are you waiting for a Mag3 or DMSA scan or the VCUG? Is he on daily antibiotics, and if so, have you tried changing them to see if that helped the bacteria? I’m so sorry that you guys are dealing with this and having to wait so long for treatment. I’m not sure what country you guys are in, but are there any other options for treatment? I would be very concerned about recurrent uti in a child that small. Do they do cultures to ensure that they are giving the right antibiotics? Good luck to you guys! I hope you are able to find some answers soon!