Nephrologist/Urologist (Long, sorry!)

My 3 y/o daughter was admitted to Stony Brook last week for 3 days with severe bilateral hydronephrosis, hydroureter, and pyelonephritis. They also saw that the lining of her right kidney is very thin. They think something has been going on for a while, possibly since birth. We only found out because she had a fever with no other symptoms (thought she had a virus). Ped was sending us for blood work but that night her fever went up to 106.7 so we took her to ER. They thought maybe appendicitis or intussusception. They did an Xray and sono and ran other tests/cultures while we were there and found the issues with her kidneys.

We had a repeat sono done a couple of days ago and are scheduled for a VCUG next week to check for vesicoureteral reflux. She will also get a MAG3 scan (nuclear medicine test). The nephro we saw at the hospital and again today at her followup appt. thinks there is some congenital abnormality...possibly a blockage or kink in the ureter. Right now, her kidneys are still functioning but I don't like that the Dr at the hospital said "she's not in kidney failure yet." I do not like that YET part . She will stay on antibiotics until we start to get some answers but he said it's likely she will need some type of surgical intervention. I just pray we get it all sorted out before any permanent damage is done to her kidneys.

Does anyone else have experience with this? Do you have a nephro or urologist you recommend or even ones that I should avoid? Anyone's DC have a VCUG or MAG3 scan? I'm dreading them and they said they don't want to sedate her. TIA

Re: Nephrologist/Urologist (Long, sorry!)

Omg! I am so sorry. One of my twins was born with hydronephrosis in both kidneys. It was picked up on my sonograms while I was pregnant (I went for many since I had twins). I delivered at North Shore and he had to immediately go for a scan to see how enlarged the kidneys were. We were recommend to Dr. Lane Palmer by the head of the pediatric unit there, my pediatrician, and numerous others. We have been seeing Dr. Palmer since birth (my son is almost 6 now). He is amazing. Thankfully my son never needed surgery for this, and now only one of his kidneys is slightly enlarged. Dr. Palmer likes to say he grew into his kidneys. My son also had hypospadius which Dr. Palmer had to perform surgery to correct when he was 6 months old.

His practice is pedsurology.com. They have multiple offices (I have only been to Lake Success), not sure if he goes to any other office, but I would try to get an appt with him. He knows his shit! If not, I would try another Dr in the practice (although I personally have only ever seen him).

My son had a VCUG when he was a baby to make sure his kidneys were working correctly and no reflux. We had it done at North Shore. They are so trained to do this in the hospital. It was a long time ago so it's a bit foggy, but I remembered I think they injected him with dye? And then they basically had to watch his bladder and wait for him to pee. It actually happened pretty fast. My son was not sedated (but he was a baby and did scream his head off). The urologist immediately told us his kidneys were functioning properly, but we still had to bring all films to Dr. Palmer. He likes to look at them all himself (not just the report from the hospital).

Hang in there momma! Hopefully it won't be something so serious and maybe just monitoring like my son. I always braced myself that he would need surgery but never did. I told myself even if he did, they are experts and do this all the time and he would be ok! Hope your little girl feels better soon.

Re: Nephrologist/Urologist (Long, sorry!)

Omg! I am so sorry. One of my twins was born with hydronephrosis in both kidneys. It was picked up on my sonograms while I was pregnant (I went for many since I had twins). I delivered at North Shore and he had to immediately go for a scan to see how enlarged the kidneys were. We were recommend to Dr. Lane Palmer by the head of the pediatric unit there, my pediatrician, and numerous others. We have been seeing Dr. Palmer since birth (my son is almost 6 now). He is amazing. Thankfully my son never needed surgery for this, and now only one of his kidneys is slightly enlarged. Dr. Palmer likes to say he grew into his kidneys. My son also had hypospadius which Dr. Palmer had to perform surgery to correct when he was 6 months old.

His practice is pedsurology.com. They have multiple offices (I have only been to Lake Success), not sure if he goes to any other office, but I would try to get an appt with him. He knows his shit! If not, I would try another Dr in the practice (although I personally have only ever seen him).

My son had a VCUG when he was a baby to make sure his kidneys were working correctly and no reflux. We had it done at North Shore. They are so trained to do this in the hospital. It was a long time ago so it's a bit foggy, but I remembered I think they injected him with dye? And then they basically had to watch his bladder and wait for him to pee. It actually happened pretty fast. My son was not sedated (but he was a baby and did scream his head off). The urologist immediately told us his kidneys were functioning properly, but we still had to bring all films to Dr. Palmer. He likes to look at them all himself (not just the report from the hospital).



Hang in there momma! Hopefully it won't be something so serious and maybe just monitoring like my son. I always braced myself that he would need surgery but never did. I told myself even if he did, they are experts and do this all the time and he would be ok! Hope your little girl feels better soon.

ETA: My son was also on antibiotics for his kidneys the first 3 months of his life. When they finally said he could go off them, I was scared to take him off. DH was like are you nuts?

Message edited 8/8/2017 9:06:43 PM.

Re: Nephrologist/Urologist (Long, sorry!)

Thank you so much. Someone else IRL recommended Dr. Palmer and Dr. Gitlin from Peds Urology too. I am in central Suffolk but I don't mind traveling for good care. I will look into them.

If she does need surgery I don't really love Stony Brook anyway so I would look elsewhere--possibly Cohens or the city.