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TTM about vesicoureteral reflux

amykins1283amykins1283 member
in Special Needs
Here's the deal:  

DS2 (currently 5 months, 3 weeks) was diagnosed inutero with bilateral hydronephrosis which was monitored throughout my pregnancy.  It did not resolve itself by the time he was born and after he was delivered he was given a renal ultrasound which was inconclusive.  The pediatric urologist we took him to said that, unless any issues developed, he would like to wait until after DS2 was 6 months old to do any further testing because, 9 times out of 10, most kids never have any issues or grow out of the condition.  This week DS2 was diagnosed with his first UTI.  His symptoms were high fever, vomiting, lethargy, and general fussiness along with with strong smelling urine.  The urinalysis at the pediatrician's office tested positive for bacteria and he was sent home with a prescription for Keflex.  By the evening, his temperature was completely out of control, reaching 104.2 even after administering Tylenol.  We were sent to the ER where they did a blood draw and a catheter to get a clean catch.  He was given Tylenol and two injections of Rocefin and we were sent home once his fever stabilized.  The urine sample from the catheter showed no signs of bacteria but did show that he had a significant amount of white blood cells in his urine which would indicate an infection.  After the pediatrician cultured their sample from the first bag catch, they said that there was E. Coli present.  

After speaking to the pediatric urologist after all of this it was suggested that since the catheter sample was "clean" (no bacteria) then maybe he just had a virus and not a UTI.  But, our pediatrician wants to go with the assumption that yes, it was a UTI, due to the bacteria in the first sample AND the fact that there were WBC's in the sample taken by cath at the ER.  The urologist suggested only doing a renal ultrasound, as previously planned, instead of the more invasive test for reflux, all based on the "clean" sample from the ER.  

So...based on the assumption that he had a UTI, and a pretty severe one based off the symptoms, should I push for the more invasive reflux test so that we know what we are dealing with or just go with the renal ultrasound for now?  If your child has VUR, how was it diagnosed, how severe is it, and what kind of treatment plan are you on?  Did/Do they get many UTI's?  Have they suffered any kidney issues due to repeated UTI's?  At what point would corrective surgery be discussed?  I am just worried about not getting all the answers and having him go through this whole ordeal another time and possibly damaging his kidneys because we were too conservative.  

Thanks!   

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Re: TTM about vesicoureteral reflux

  • realisticdreamsrealisticdreams member
    Hi, uro mom here!  
    Let me clarify..he has not had any ultrasounds since birth and he is 5 months old?  IMO it's time to start looking for a new uro.  Reflux is common, BUT hydronephrosis is not and that can lead to permanent kidney damage.  He should be on a daily antibiotic to prevent infections and it's possible that in the earliest part of an infection that even the sample from the cath could appear clean, that is the point in doing the culture.  
    The standard protocol for us was ultrasound plus VCUG, the VCUG is what shows if their is reflux or not.  That test only gets more uncomfortable for the child as they get older. 
    IMO he needs a new ultrasound (pretty soon) plus the VCUG.  How is his growth?  DD2 has small kidneys and having small kindeys can affect the childs growth, etc.

    Good luck!
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


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  • mommy0411mommy0411 member
    My DS2 has hydronephrosis and a mega ureter on the left side. He had an ultrasound and VGUC at 24 hours old and another ultrasound at 4 weeks. He is now 4 months and has another ultrasound in September. I would definitely want the urologist to follow him more closely in your case. We aren't doing the antibiotics because our urologist didn't recommend them in my sons case but we are to bring him back immediately for an ultrasound if he gets colicky or if he spikes a fever. I know for my DS, we won't discuss surgery unless the hydronephrosis isn't resolved by 1.


    DS1: 4/15/2011
    Dx: ASD, SPD and receptive and expressive speech delay at 21 months
    BFP #2: CP 5/2012
    DS2: 4/24/2013
    BFP #4: Miscarriage at 5 weeks 7/2014
    BFP #5: 8/8/2014 Due 4/20/2015 
    Its a healthy girl!!!!! 
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  • travelbugtravelbug member
    My son did not have the hydronephrosis, but did have UTIs. The first one surfaced at 14 months and required a 3 night hospital stay to get the fever under control.

    He had a VCUG which showed a level 2 VUR. The VCUG is not a picnic. I'd think the younger the better. Uro suggested circ to alleviate symptoms. Prior to that he was on daily antibiotics. Surgery was a bit more that expected because it turned out he had a mild hydrospadias which we elected to correct. No further UTIs! We follow up at 4, he is 3.5 now.

    Good luck!
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  • amykins1283amykins1283 member
    realisticdreams said:

    Hi, uro mom here!  
    Let me clarify..he has not had any ultrasounds since birth and he is 5 months old?  IMO it's time to start looking for a new uro.  Reflux is common, BUT hydronephrosis is not and that can lead to permanent kidney damage.  He should be on a daily antibiotic to prevent infections and it's possible that in the earliest part of an infection that even the sample from the cath could appear clean, that is the point in doing the culture.  
    The standard protocol for us was ultrasound plus VCUG, the VCUG is what shows if their is reflux or not.  That test only gets more uncomfortable for the child as they get older. 
    IMO he needs a new ultrasound (pretty soon) plus the VCUG.  How is his growth?  DD2 has small kidneys and having small kindeys can affect the childs growth, etc.

    Good luck!

    His growth is fine, in fact he is big for his age at over 18 lbs, currently. I am inclined to agree with you about the uro. When we went to see him soon after he was born he asked a few questions, reviewed the inconclusive ultrasound, and then said that he wanted to wait until after 6 months so that his anatomy would be easy to see on the ultrasound OR he would do it earlier if he started having issues. Now we have this going on and it seems like they are being too conservative.

    Even our pediatrician seemed to be a little put off but said that she would defer to their decision. She did encourage us to call and make sure they had all the information that she had, and she was going to fax them all the info she had gathered because, in her words, most of the signs were pointing to a severe UTI, possibly a kidney infection since his fever was so high. She did mention that the AAP had recently changed the guidelines as far as how febrile UTI's are addressed but I would think with the hydronephrosis they would be a little more proactive.

    I have an appointment with the uro on the 19th for the renal ultrasound but I am kind of feeling like maybe we should push for more. I am really nervous about him coming off this round of antibiotics and getting another infection.

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  • jellybean529jellybean529 member
    edited September 2013
    My DD, who had vesicourteral reflux, was right around 6 months when diagnosed...she had her first (and only) febrile UTI (103 degrees!) at around 4 months. She had grade 3 reflux on the right and grade 2 on the left, plus a duplicated ureter definitely on the right and possibly on the left. She was diagnosed via VCUG and renal ultrasound at 6 months and then we had ultrasounds every 6 months until she was potty trained. I would definitely push to get the testing done ASAP, if for no other reason than to prevent another UTI by getting him on antibiotics. DD was on Septra until 2 1/2, when she potty trained and the urologist said we could take her off and see if she had a breakthrough infection...she's 5 1/2 now so I think we're all clear and she's probably outgrown it.

    Like others have mentioned, the VCUG is no cakewalk...but hopefully he only has to go through it once!

    Good luck to you...I know how stressful the testing and not knowing can be!
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