Urethra Implantation Surgery for Kidney Reflux Grade 4

I don't have any good advice for you, sorry to say, but since I was the one to post about my daughter's reflux I wanted to say that I sympathize. I guess our experience so far has been to go conservatively with younger kids. (My daughter is also 3.)

We have been very fortunate in that the reflux is improving and we will be able to avoid surgery. I hope that you will be able to find good information!

Shaun
www.homeschoolblogger.com/shaunms

Great to know we are not alone! My son, our first, just made 6 months and he was diagnosed with Grade V (on both sides) when he was just 5 weeks old after a 4 day stay in the hospital, a story that must be similar to yours, I'm sure. He is on a daily dose of antibiotics. I'm doing more research since we have his 6 month followup with the specialist in a few weeks. I've got all the stats but have not done much research on sergery options. Have any of you gone through the sergery yet? If so, how did your little one do? Hope all is well, everday without fever is a good day in my house! Michelle

At the age of 15 mo my daughter got very ill, and was misdiagnosed for TWO weeks. It wasn't until I got very stern...ok down right nasty with my doc office that they took it more seriously and found a UTI. Becouse of the severity she had to have injections for several days followed by oral antibiotics. (This caused other issues that we are still dealing with at 21 mo.) 2 mo later she was diagnosed with kidney reflux. Her Urologist is great and says that she could outgrow it...however everyone I have talked to with this illness has had to proceed with the surgery. I am also worried about the antibiotics (currently taking a sulfa bases suspension) even though they are low dose. Dose anyone have any thoughs on how many children actually out grow it? Also when do you worry about a fever? When is it worth getting catherized for a sample. And why do I get resistance when I call and want one done...due to symptoms of course. Any thoughts would be wonderful.

My dd was diagnosed at 2 months old. She finally out grew it when she turned 4. I was all prepared to tell the dr to do surgery when she was tested last. I also worried about the antibiotics she was taking. Had a friend tell me how it messed up her dd stomach before she had surgery at age 6. We always went and give a urine sample whenever her fever was over 100, unless we knew what the fever was caused by i.e the flu. Towards the end she learned to give a sample on the toilet. We would both cry when she had to be catherized. We also had a very bad experience when our local hosiptal did the vcug. Finally learned that going to a childrens hospital in Portland, Or was worth the 3 hr drive.
I hope this helps I know everyone I talked to had the surgery so we feel very lucky. There have been no lasting effects of the antibiotics.
Don't know if this is related but she was my only child that wet the bed until she was 5. She just finally outgrew this.

Good luck and let me know how your daughter is doing.

Michelle

My little girl was diagnosed with grade two reflux on the left side at 10 months old after a weekend of very high fevers and antibiotic injections twice daily at the hospital. We started a sulfa based antibiotic daily and stayed on that till she was 3 and a half. She did potty train early due to having to catch samples to avoid being catherized. At age 3 1/2 she still had no improvment in her condition and the twice yearly cystograms were a nightmare for both of us. So we had deflux preformed. Everything went great. She had a 6 month cystogram and was told we need not come back to the specialist unless we had problems. She is not almost 7 and we just had a routine urine sample ran as part of her yearly exam. It showed white cells and we are currently waiting on culture results. Anyway it is hard to find stats on the ones that are not successful most things paint this surgery to be wonderful and a cure all for her grade. also someone above mentioned stomach issues with long term antibiotics. For the last 2 years we have been dealing with stomach aches 2 to 4 times per week. Any suggestions? The doctor also mentiomed she had enlarged lymph nodes on her exam and said not to worry it is probably nothing but we would run labs to rule out lymphoma anyway. How can one not worry!? any thoughts apprieciated.

Hi, there.

LK, I feel for you. Our daughter went through the same thing at 3 yrs old (kidney infection for a week, hospitalized w/high fever). She had antibiotics until 5 yo & then deflux on both sides at Hopkins. All was fine until she was 7; then rapid weight gain of 20 lbs in 5 months; episodic side pain every 4-6 weeks. I've spent the last 2 yrs dragging her from doc to doc asking "Could this be her kidneys" with a resounding NO the answer again & again. We finally got a (wrong) diagnosis of kidney stones which turned out to be calcification of the deflux implants. Our doc said it was the first time he had seen this in his patients; the first filing he found was filed literally an hour before her surgery. She has substantial constipation & possible thyroid issues now. Watch our for side pain & insist on a CT scan if nothing shows up. Bc she had normal creatinine levels, no UTIs and normal urinalyses, no other test was done. Her left kidney now looks pretty bad on CT scan & ultrasound. Good luck!