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  • Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

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    Old 06-11-2007, 06:02 PM   #1
    angela5271
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    Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    On June 6, my almost 7 year old daughter was diagnosed with stage 3 Bi-lat reflux & Uni-lat (left) ureter duplication, after ultrasound and VCUG tests were done. Her primary physician has referred her to a urologist, but they are unable to see her for close to 6 months due to a back up in their offices.

    My understanding is this type of disorder is usually diagnosed before a child is 2 and usually corrects itself as the child ages and rarely are children of my daughters age diagnosed. I am at a loss for information. I have searched the internet, but most hits are not in laymen terms and I have no clue what they mean.

    Is there anyone out there who has a child with this or a similar disorder and diagnosed at such a late age? If so, what should I expect as a course of treatment? I understand all children are different and the physicians will seek a treatment specifically for that child. I am simply looking for advice and any pertinent information about this disorder. She is currently on an antibiotic at least until she is able to be seen by a urologist to hopefully prevent any continued UTI's.



    Thanks: Angela5271

     
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    Old 06-12-2007, 06:51 AM   #2
    neshee
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    Ummm....kidneys are a serious issue, no matter what age or when. I cannot believe that they won't see her for 6 months!! Even if it means traveling some, I would find another urologist that could see her sooner. Much sooner. It will put your mind at rest that she is getting care sooner and you will have answers sooner. Dr. Greene, is a California pediatrician. I don't know anything about this, but that may help find some answers for you. I wish you all the best, and keep us posted on her condition. I will add her to my prayer list too. God Bless.

    Last edited by moderator2; 06-12-2007 at 08:55 AM.

     
    Old 06-12-2007, 08:19 AM   #3
    angela5271
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    Thank you for your reply. I called the urologist's office back this morning, and they are now able to fit her in on July 6th. Yay!! I suppose my not accepting an appointment 6 months from now, and letting them know that helped some.
    I agree kidneys are very serious and it really upset me that the receptionist did not take this into consideration when I called yesterday. But like I said she now has an appointment on the 6th. I am much happier with that.
    I will keep all posted on how she is doing.

     
    Old 06-12-2007, 01:31 PM   #4
    neshee
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    Good for you! I am so happy to hear she will be seen sooner! Sometimes as parents we have to be more demanding...I am learning this myself with my DD who is 3 and we had our house burn January....all kinds of decisions to be made and people who want to walk all over you. Sorry, but as a parent we have to demand and do what is best for our children. I will continue to pray for your daughter. I hope you get the answers you are seeking. Good luck!

     
    Old 07-03-2007, 10:32 PM   #5
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    Glad you are getting it checked out. My daughter is 6.5 also and was diagnosed with the reflux in both ureters a day after her 5th birthday due to a bad double kidney infection that put her in the hospital. It's not all that easy to damage their kidneys in such a short time period (6 months) but I can see why you would be concerned. My daughter has had 2 VCUGs and had the deflux surgery to repair her ureters but it only worked on the side with the lowest grade so she has to have it done again. She has been on daily antibiotics for over a year now and has still had more bladder infections than I can remember in that time frame. No kidney damage at all though. It's not true that children your daughters age are rarely diagnosed, but a lot of kids do show symptoms of the problem earlier on. From our experience and what the urologists have told us..our daughter will be on the antibiotics until this is permanently fixed (I believe 3 months after surgery if it is proved by VCUG that the surgery worked) and then they STILL have to have the VCUG done every year or so. (which I am not at all happy with since it is traumatic for my daughter to go through. The first time she was given a twilight drug and was awake and aware of everything but didn't remember a single thing about it afterwards. But this last time they gave her the twilight drug and she remembered every single bit and that ticked me off).
    Anyways, I hope the urologist can answer your questions. If she has had no kidney infections they may wait to see if it fixes itself..but grade 3s don't always fix themselves.

     
    Old 07-06-2007, 10:36 AM   #6
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    Thanks for the encouraging words. Unfortunately my daughter has had several kidney infections, actually is dealing with one right now, and that is with having a daily antibiotic . I have had a few UTI's in my 36 years and I can't imagine what it must be like for a little girl to have one every other month or sometimes more often.

    She has her first appointment with the urologist today. I hoping he can shed more light on this subject for me. I am hoping the prognosis is good...meaning fixable and she will not have to deal with the pain for too much longer.

    Wish us luck!! I will post with an update later this afternoon (after her appointment).

    Good Luck with your daughter...how terrible that she must go through another surgery. Hopefully everything turns out well the second time around.

     
    Old 07-07-2007, 11:54 AM   #7
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    Great, I hope the appointment went well and was informative! Did they give you any options on fixing it?

     
    Old 07-07-2007, 12:25 PM   #8
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    UPDATE: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    The appointment went well. My daughter really liked the urologist...which is/was helpful in calming her. He spoke to her, not just to me...which I thought was great. She is the patient after all. He was quite friendly and completely answered any question she or I had regarding this. Thank God for Children's hospitals and teams. I couldn't imagine she would get such great care from a md that usually only treats adults. It takes someone special to want to work only with kids.

    Anyhow...

    He is concerned because of her age and the level of reflux she has. He has ordered a DMSA scan to determine if/how much damage has been done to her kidneys due to the late diagnosis. He said the most positive thing was that her kidneys are the appropriate size for her age.

    After the DMSA scan is done he will make the final determination on how aggressive he needs to be to "fix" her reflux and duplication (kind of scary that both ureterís on the left reflux). He is hopeful that surgery won't be necessary but is guarded in that he doesn't think she is going to outgrow it as many children do by her age.

    So for now she continues her daily antibiotic, and wait a few weeks for the scan to see what needs to be done next. I will update as I know more.

     
    Old 07-09-2007, 07:43 AM   #9
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    Quote:
    Originally Posted by HumbleServant View Post
    Glad you are getting it checked out. My daughter is 6.5 also and was diagnosed with the reflux in both ureters a day after her 5th birthday due to a bad double kidney infection that put her in the hospital. It's not all that easy to damage their kidneys in such a short time period (6 months) but I can see why you would be concerned. My daughter has had 2 VCUGs and had the deflux surgery to repair her ureters but it only worked on the side with the lowest grade so she has to have it done again. She has been on daily antibiotics for over a year now and has still had more bladder infections than I can remember in that time frame. No kidney damage at all though. It's not true that children your daughters age are rarely diagnosed, but a lot of kids do show symptoms of the problem earlier on. From our experience and what the urologists have told us..our daughter will be on the antibiotics until this is permanently fixed (I believe 3 months after surgery if it is proved by VCUG that the surgery worked) and then they STILL have to have the VCUG done every year or so. (which I am not at all happy with since it is traumatic for my daughter to go through. The first time she was given a twilight drug and was awake and aware of everything but didn't remember a single thing about it afterwards. But this last time they gave her the twilight drug and she remembered every single bit and that ticked me off).
    Anyways, I hope the urologist can answer your questions. If she has had no kidney infections they may wait to see if it fixes itself..but grade 3s don't always fix themselves.
    My daughter is almost 6. Diagonsed with duplicated collecting system (2 complete ureters) on the right side w/grade 1 reflux. One of the ureters is connected too low, and causes dribbling.

    Luckily, we have not had too many issues with infections. The side effects of the meds she was placed on seemed to make things worse. So, we took her off.

    Her urologist has been on vacation, but did let me know that this would more than likely require a surgery that would place her in the hospital for several days.

    Is this similar to what was going on with your daughter?

     
    Old 07-26-2007, 11:09 AM   #10
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    My daughter is 6 1/2 as well and she was only diagnosed in January of this year with a grade 2 reflux on her left kidney and a grade 3 reflux on her right. It was not because of my lack of concern that this was so late in diagnosis for us as well. I took her to a pediatrician for two years without any answers until I switched peds and we were off to a nephrologist instantly.
    We are also on the antibiotics until they figure out the next step. The nephrologist decided to have a "dmsa" scan done. This would detect any scarring of the kidneys from the years of untreated infections. It turned out just this week that she has 62% of the function left in her left kidney (they are calling that her "good one" and only 38% of the function left in her right kidney. Now we are going to urology to discuss our options. The one that has been mentioned to me so far is called a "deflux" procedure where they inject some gel at the base of the ureter to stop the urine from backing up into the kidney and continued antibiotics. I am very frustrated to know that my daughter has lost so much function that I am told she can not regain at such a young age and I very concerned about what this may mean for her later in life. Good luck to you guys.

     
    Old 07-26-2007, 01:40 PM   #11
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    So strange that I should come upon this post when I was looking to post questions about the same subject!! My daughter is 9 and was just diagnosed with grade 4 bi-lateral reflux and a duplex right kidney. She is scheduled for surgery on August 1st (she will turn 10 while she is in the hospital). The surgery involves a bikini line incision and re-implantation of both ureters - they will check her kidneys for any sign of damage while they are in there. She had had a couple of UTI's when she was 4 and 5 and was only ever given an ultrasound to check out her kidneys. Her surgeon said that she sould have had a VCUG at that time at which point she would have been diagnosed with the reflux and the surgery would have been performed. I guess this grade and severity isn't something that would correct on it's own with time. When she did have her VCUG a couple of months ago I was astonished to see that her urine started to reflux up both ureters before her bladder was even full. I'm preparing myself for her surgery (it will last approximately 4 hours) - and her eventual recovery which will be a minimum of 4 days in the hospital and a 10 day post-op recovery. Hope things go well with your child.

     
    Old 07-30-2007, 09:35 AM   #12
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    Your daughter will be in my prayers. I know how frustrating it is to not have a proper diagnosis.

     
    Old 07-30-2007, 09:40 AM   #13
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    Yeah, my daughter has had a couple of VCUGs. Unfortunately, the radiologist did not catch it. It was only upon a physical exam (2 years into seeing a specialist) that he found the issue.

    Originally the reflux was grade 2. It has improved to a grade 1. Unfortunately, the ureter attaches too low and causes her to leak continually.

    Please keep me updated on your daughter's recovery. I know that the surgery is the right thing to do, but I am so very worried.

    We are in Oklahoma....where are you?

     
    Old 07-30-2007, 10:43 AM   #14
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    Well tomorrow and Wednesday are the days we will find out what the urologist plans to do about my daughter. She is scheduled to have her DMSA at 9:30am Tuesday and the follow up with her dr. on Wednesday at 11.

    I am so very anxious and hoping everything turns out o.k., for her sake of course. She is becoming quite aware of the things happening in her body as she has recently asked me why bad things always happen to her. What do you say when you really have no answer? I try to answer all her questions to the best of my ability but I think I scare her more than necessary as I am no expert.

    Anyhow keep her in your thoughts and prayers for the next couple of days, please. We have all our body parts crossed hoping for the best news possible. Thanks.

    Angela

     
    Old 07-30-2007, 02:17 PM   #15
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    Re: Help!!! Bi-lateral renal reflux & ureter duplication in 6 1/2 yr. girl

    Both of my children have had health issues. What I have told them is that God doesn't make mistakes. He has a plan for you, and what ever challenges he gives you to face may be hard, but they will make you a better person. The key is to believe, above all, that he is with you at all times. When they start to focus on what they can not do, or what is "wrong with them", I try to help them to recognize all that they can do, all that they have, etc.

    I will keep your daughter in my prayers. Good luck tomorrow.

     
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