My 5 month old who has VU reflux, duplicate ureters and a ureter entering the bladder lower than it should and we have just been told that she has scarring (about half) on her right kidney (same side all of the problems are on). What does this mean for her now and for her future? Is this life threatening? How is treated? managed? How do we prevent this from happening more? I am so scared for my baby. PLEASE HELP! Thank you.
Hiya, try not to worry I have been were you are I understand.
My daughter is 7 now and has a duplex kidney system, uretrocele and reflux. This was diagnosed when she was 6 weeks old and we nearly lost her due to an undiagnosed UTI that had infected her bloodstream. From then on she had to take a propholactic antibiotic every day for several years. She had many many UTI's and two operations, one to clean out the uretrocele (she was actually passing puss not urine) and another called a 'sting' operation to try and alter the angle of the ureters to prevent reflux - although this was unsuccessful. For the first 3 years of her life she had many infections and had to be treated as an inpatient. Her kidney is now scarred from these infections and she has lost some of her kidney function. The good news is her other kidney is compensating for this, and one can function very well with one kidney, some people are even born with just one!!
I too was very frightened for my daughter and had many questions. As my daughter suffered a lot from UTI's and they were causing scarring her consultant wanted to remove her kidney, but I refused. I was told that duplications themselves do not cause the problems, many people can have this and never know, it is the reflux that is the enemy. The thing is most children grow out of this reflux around the late toddler years - so I wanted to wait before I put my daughter through major surgery. I am so glad I did. Around the age of 3 she stopped having these infections - and for the past 4 years has not had one. She came off her meds around 3 and a half and is doing great. She is having yearly ultrasounds and bp measurements taken, all is well. The scarring to her kidney will always be there but they are doing there job.
In regards to management I would advise that your baby be treated daily with a propholactic antibiotic to prevent infection, such as cefaclor or trimethaprim (sp). She recieve regular monitoring of her kidney via ultrasound and her function also looked at. I would ask what grade her reflux is at and is there need for a sting operation to help stop backflow.
I also bought multi stix from the chemist and tested her urine when she showed any sign of being unwell or of an infection. In these you test her urine with a dipstick and look for blood, protein, leukocytes, nitrate, these will show if an infection maybe present. I found these helpful in preventing severe infections as they were picked up earlier - therefore helping to prevent scarring to the kidney.
Please do not panic. Read as much as you can on the condition and educate yourself. My daughter is fine, she is well and happy. This can be managed successfully.
Hope this helps and feel free to ask me more if you wish x
Thank you so much for your response!!! :) My daughter's reflux is a grade 4/5 on the right only. She is on daily antibiotics now. Thank you very much for your time and I look forward to this site for support in this very difficult and scary time. Thanks again!
My daughter is one year old now. She has had the same condition since she was 3 months old. I am so scared as she had the MCUG and the DMSA scan tests. Results were ok and her both kidneys are functioning well, but one of them has two scars on it due to the regular UTI and the lower position of her right ureter. She will be having a surgery within 2 weeks. But i am was so shocked to know that she will need constant blood pressure and ultrasound checkups for the rest of her life. Please tell me if her condition is normal and that doesn not affect her kidney in the future. I am so scared
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