Join Date: May 2004
Location: controlled chaos baby
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My daughter has severe hydronoephorsis of the left kidney. It was first diagnosed when I had a routine ultrasound at 8 months gestation. It was not apparent at my level 3 ultrsound at 20 weeks gestation. I had another scan a month after that one at 9 months gestation which showed that the condition had progressed.
We were told that this usually resolves itself by birth, and that this is the most commonly diagnosed prenatal abnormality.
3 days after birth, we had an ultrasound which showed that the condition persisted. We were referred to a pediatric nephrologist. My daughter was placed on prophylactic amoxicillin. Kids with hydronephrosis are prone to upper urinary tract infections due to urinary stasis. Urine flow is a natural barrier to infection. This is compromised in hydronephrosis. Also many kids with this have bladder reflux, which also predisposes to infection. At that time, we still didn't know if our daughter had reflux or not.
At a couple months of age, my daughter had a VCUG which demonstrated there to be no cystoureteral reflux, the most common cause of hydronephrosis. For the VCUG she had to be catheterized. We then went on to have a renal scan with lasix challenge. This test involved a urinary catheter as well as an IV catheter. An isotope was injected into DD's vein and she had to lie on a scanner for approximately an hour. Half way through the procedure, lasix was injected. This test determines if there is a blockage in the ureter, or if it is just kinked. Either thing will cause the decrease in urine flow and hydronephrosis. It turned out my daughter has a kink in her ureter. Good news for us since it is nonsurgical and expected to resolve by age 3.
My daughter developed a UTI after this last procedure. The only time she has been symptomatic for any sort of problem. I realized something was going on because the urine in her diaper was slightly bloody. She had to be catheterized for the urine sample, and when that was positive, she had to have a blood culture to rule out sepsis. The organism we cultured out was somewhat unusual, and it is my belief this infeciton is likely iatrogenic in cause, a result of being catheterized in the hospital.
The prophylactic antibiotics caused my daughter to have bloody diarrhea. I was unable to resolve this using any sort of nutrtional or probiotic support. I finally argued to get her off the antibiotics. She has done well off of them. She had a couple high fevers after that in her first year, and we had to give urine samples to rule out UTI. More invasive catheterization.
My DD is now 20 months old. Her condition is stable, has not gotten worse or better. She is not symptomatic for any sort of problem. We follow her with ultrasounds. Now every 6 months, previously, every 4. It is a wait and see sort of thing. AT 1 year of age, when her condition was not resolving, we repeated the renal scan to see if there was new evidence of physical obstruction of the ureter. Again it was not obstructed, likely to be kinked. Once she turned one, we also didn't have to worry so much about testing for UTI when she had a fever. The reason it is a big deal in younger infants is that a kidney infection can have much more severe consequences than in older children.
I have some concern that my daughter has felt pain as a result of her condition. Everyone has reassured me that no, it is unlikely. But I still worry. My daughter is getting better but has been very sensitive to pain. Almost like she has felt some bad pain before and now is sensitized to it. In her first year, she was extremely anxious and clingy. Not totally a happy kid. That all seems to be getting better.
I have several friends with children affected by hydronephrosis. Most of them have it due to reflux. They have had varying levels of resolution of the condition.
I think in the past this was just as prevalent a problem, but it wasn't diagnosed, due to the fact that people didn't have ultrasounds.
We work closely with a terrific Nurse practitioner who works for the pediatric nephrologist. It is a rare appointment when we get to see him. His practice is a busy place and I would really feel like my daughter is just a case file if we didnt' get the attention of this wonderful, knowlegable, nurse.
Well, this is pretty long. This has been our experience. With time we have gotten a lot less stressed out about it. I think if we had not known about this problem from the US, we would not have any idea she has this. I think the morbidity resulting from this condition has been, for my DD, resulting from the invasive testing she has been subject to in routine evalutaion of the condition, and to rule out kidney infections when she was sick.
Good luck. ND
Mama to 3 daughters, expecting #4