8 Week Old Just Diagnosed with Kidney Reflux

Hi B.,

My son was 2 months old when he was hospitalized with a UTI. It was horrible. He underwent 4 spinal taps to rule out menengitis until his urine results finally uncovered the UTI. His ultrasound showed hydronephrosis of one of his kidneys and we followed up with a VCUG but luckily that came out normal. Such a harsh experience for our little ones! Niklas stayed on an antibiotic for a while (can't remember which one) and we started seeing a pediatric urologist too. His UTI went away and then it came back slightly but we haven't had an issue since then and he's about to turn 1.

The urologist did recommend switching formula to Nestle Good Start Natural Cultures Formula (in the green can) because it contains probiotics which help the immune system and also help prevent the UTI's. We switched and our son couldn't handle it and contantly would throw it up so we quit it after a couple of weeks.

I'm not much help since I didn't exactly experience all what your daughter is going through, but I do feel your pain. I hope she recovers very soon!

-Char

I was born with this birth defect, as well as my daughter. It runs in families, primarily in girls. It's graded 1 through 5, with 5 being the worst. I was a 2 on one side and a 3 on the other, so I never needed to have the corrective surgery. My daughter's weren't too severe either. But my sister's daughter has it as well, and she is a 4 on one side and a 5 on the other. She has had a long road of antibiotics, and she will not outgrow it. She is having the corrective surgery done soon at John's Hopkins, which is the leading hospital in the country for kidney issues. Usually if you are going to outgrow the reflux, the sphincter valve between the bladder and the ureter will have to grow, which is why some milder cases will grow out of it. You're looking at a year on antibiotics and most likely surgery. Be glad you caught it early. I almost died from infection, and had to be potty trained all over again after several weeks in the hospital. Your son should be checked as a precaution, as well. Potty training will be difficult, and you should try to get your daughter into the habit of never passing a bathroom opportunity by. We never walk past a bathroom without stopping in, and her teachers know that when she says she needs to use the restroom, it means RIGHT NOW. Basically, you want to train her to empty her bladder before it gets full enough to push the urine back up the ureter into her kidneys. As long as the urine never gets a chance to flow backwards, you will greatly reduce her chances of a UTI. It can be very stressful having to run to the emergency room every time your child gets a fever, but with grade 5, you just can't take any chances. Good luck with all of this.

B.,
I have much to tell you on this subject as we went through the same stuff with our daughter plus some other complications. My daughter was diagnosed at 6 weeks and was on antibiotics from the age of 2 weeks. We have done mulitiple VCUGs, MAG3 renals, and ultrasounds. She had surgery at Children's at 9 months and is completely healed! You many never need to have the surgery for your daughter (it is just that my daughter had multiple problems).

About reflux... educate yourself all that you can before your appointment with the urologist. Learn all about the urinary system so you can have a better educated discussion with your doctor. There are several types of reflux. My daughter had an ectopic ureter (it attached under the kidney rather than at the top). This was not something that would resolve itself. Other types of reflux tend to resolve themselves over time. This is not an uncommon problem with girls.

Your daughter is at risk for multiple UTIs. Just be sure to be regular with the antibiotics. You want to give it at the same time each day so that the medicine remains in her system. Do not give your daughter bubble baths and only use baby shampoo.

If you live in the San Diego area I HIGHLY recommend Dr. Aligiri. He is our hero as he fixed my daughter completely in a rather complicated surgery. I trust him with my daughters life!!!! He is located at Children's hospital. My daughter is now two and has been off of antibiotics for 1.5 years and has not had a UTI!!!!!

If you have any questions please email me through Mamasource!
Love,
J.

I'm sorry that you and your daughter are having to go through this. Although it might be better that she's been diagnosed so early. It very common, I understand. I was also diagnosed as a child but not until I was around 5. by then the tests were much more bothersome for me. My doctors choose to wait and see and eventually the problem fixed itself. When we were in the pediatric surgery waiting room with my son (he had an inguinal hernia) most of the little girls there had a reflux problem.

I don't know about this condition, and can't give me any advice but just wanted to say your in my thoughts and I wish your daughter a full recovery as soon as possible.

My daughter had ureteral reflux at birth but we found it at 9 months because she has menningitis and when they tested the urine they found Psuodomonus(sp)so they did an ultra sound to see if that was the bacteria causing the menningitis and they found one of her kidneys was damaged. She went on a daily antibiotic for 4 yrs(dr thought she may grow out of reflux) but at 4 it was not better so she had surgery-turned out she had gaping holes in her bladder instead of valves and the urine was splashing back up into her kidneys.-dr created valves out of surrounding skin.
Good news- she was fine after the menningitis, we caught it early(14 days in the hospital)but because of that we also found another problem much earlier then we would have, so I am thankful for that. She spent 10 days in the hospital with the surgery but she is 21 now with no additional issues since surgery not even UTI's her Dr performed a miracle and God performed an even bigger one!
Be glad you caught it early so no additional damage can be done- hopefully you will not need surgery, many grow out of it. Best of luck to you, its hard to go through but it can be helped.

Please, do not vaccinate your baby at this time. You can delay them and decide later which ones to give her but you don't want to do anything else to tax her little system. There are several books to read about this. If you are breastfeeding, you will want to add probiotics to your diet to help with the antibiotics.

What You Doctor May Not Tell You About Childhood Vaccines by Dr. Stephanie Cave.

The Vaccine Book by Dr. Robert Sears

Hi B.,
my heart goes out to you. Just a little advise. As I read your message, I saw that your daughter will have to be on antibiotics for a while. May I suggest you give her acidophilus. This will help your baby avoid yeast infections and put the good bacteria back into her intestines. I use Natures Way Primadophilus.(I got it at the Vitamin Shop) I know your baby is very little. This is all natural, so I don't see the harm in it. I always give my baby this product when she is on an antibiotic.
Girls are so proun to yeast infections when on antibiotics, it strips the intestines of all it's bacteria...good and bad. So if you don't replace it, it will cause a yeast infection. It's torturous to a baby. Good luck to you and I hope your baby girl gets better very soon.

it is a pretty common problem with girls. my daughter was diagnosed with grade 3 bilateral reflux when she was 9 months old. it was very serious and she was admitted into the hospital for a few days where she was on iv antibiotics. she was on septra for years after that, and did the required routine tests every year.

she is now 9 years old with no issues and didn't need to have surgery. she was about 5 or 6 when she grew out of it and we stopped the antibiotics. there is definitely hope if you stay with the routine.

God bless you and your family...you will do fine! <><

Hi B.,
I had reflux when I was born but 30-some years ago doctors didn't know what was wrong with me (I was constantly sick). It was finally discovered at 7 years old that I had reflux on both kidneys and both kidneys had some damage because it took so long to discover. I had surgery immediately and am happy to say that since the surgery I didn't have any more problems and I didn't have a single UTI either(I am 38 now).
When I was pregnant with my son an ultrasound showed that he had hydronephrosis - water in his kidneys - but they could not tell if he also had reflux or if something else was the reason. While we were waiting for the referral to the pediatric urologist he got a UTI at 10 days old and had to go back into the NICU. It took a few months to figure out the reason and it was not reflux but a blocked ureter and it required 2 surgeries to fix the problem. I am mentioning my son because he was on antibiotics from the time he was 10 days old until about 6 months after his 2nd surgery (over 1.5 years) but he is doing really great now and has no problems at all. We have to try to avoid UTIs but luckily did not have any problems potty training him.
I am sorry you have to go through this, I know this can be really tough. Hang in there - she will be doing great!
Warm regards,
A. Smith

Hey, B.. What a blessing to find out so early! My daughter wasn't diagnosed until she was 14 mos. old with a life-threatening kidney infection. She had to be admitted to the hospital for a week on high-dose IV antibiotics. She has been on antibiotics ever since. The really hopeful part is that most children "grow out of" vesicoureteral reflux. My friend's daughter was able to get off of the anitibiotics at age twelve... which I know sounds like such a long time form now, but she did it without surgery. My other friend's daughter had the surgery and still had to be on antibiotics for years afterwards, but she still had to undergo the corrective surgery and rehabilitation, which can be tough considering it's abdominal surgery. There's also this new techmique out that seems far less invasive, so it's much less trauma... it's outpatient. What they do is bulk up the entry point of the ureter with a collagen-like substance and this can correct the reflux!! = ) I definitely think it's worth a try before the full on surgery. Besides, surgery on a child under the age of two runs such higher risks than if you can wait until they're older. I hope and pray for your doctors to have wisdom... and don't forget to get a second opinion on treatment ... at a different hospital! = ) Best of luck, B.!

C. <><

My daughter, who is now 11 years old, had kidney reflux when she was a toddler. She took macrodantin on a daily basis for about 8 months and then went off of it. She never had another UTI so the Dr said it was safe to assume that she had grown out of it. She has been totally fine ever since.

My son was born with an issue that often includes kidney reflux. He did not have it, but I'm a member of a Yahoo group where other children do. Those moms often discuss tests and treatment. I just searched groups.yahoo.com and there are groups specifically about reflux. You might check it out and consider becoming a member. I communicate with moms from across the country (actually world) about my son's issue and it's very helpful. Good luck!

There are some natural things you can go for this that has worked for a few babies I know. If you want to contact me off list, feel free.

Are you BFing? If so, then you can take something called Renatrophin PMG to help her kidneys actually heal themselves. And the 2nd thing is PB8 - a multiple probiotic to keep the bacteria under control...but if you take this while she's on the antibiotics (ABX), then it can negate the ABX. But long term sntibioics on a baby (or anyone) causes so many other issues. Also, make sure she's getting enough omegas - hopefully through you. My favorite is ProOmega from Nordic Naturals.

My nephew had this issue as well. He was on antibiotics until he turned one and could have surgery to correct the problem. All went very well. My sister just made sure to have him on good infant vitamins that first year and toddler vitamins for a few years after that. He has had no problems since the surgery and is 7 years old now.
My own daughter had hernia surgery at 10 months, so I know what it's like to face that. If you have any worries about your little girl and surgery at age one, be reassured that little ones are so resiliant and have short memory capacity. They recover very quickly.
Best to you!

My daughter was born with one good kidney and the other was covered in cysts, so as soon as she was born was put on antibiotics.Luckily she has been through 3 tests and she doesn't have the reflux but she will live the rest of her life with only one working kidney. Her other kidney will luckily dissolve over time Amazing.....
Just remember things are very scary when you first hear about them, but the more knowledge you get the better off you feel.
Good luck

My now 30+ year old daughter was born with reflux and was on antibiotics for most of her first year. As she aged the symtoms and UTI's diminished only to appear when she was cutting teeth. Strange corrolation! She had her last major flair-up shortly after her two year birthday. The doctors said she would need surgery around age 3. But guess what? She never had another episode. We watched and waited but all went well. She was a tall child and the doctor surmised that the "kinks" straighten themselves out. I wish your daughter well, and hope everything works out as well for you as it did for us.

B., my girl had kidney reflux. She was constantly getting UTI's. It didn't matter how careful I was at changing time. Fever was common place for her as were the cold showers I took with her. The doctors told me that by shool age she should grow out of it, if not then they would see what else they could do to correct the problem. I am glad to say we needed no invasive procedures. She is now 17 and hasn't had a UTI since she was a little tike. Hope your's turns out the same.
C.