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#1 of 24 Old 06-20-2012, 04:49 PM - Thread Starter
 
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My daughter just had a VCUG done and it was terrible.  First she wouldn't hold still to have the catheter put in so we were able to squeeze her in to be sedated to have the catheter put in and then she would not pee on the table and wanted to pee on the potty.  She is 5 and has been potty trained for 3 years so I can understand not wanting to pee on a table and in front of a bunch of strangers.  Is there a way to be completey sedated for the entire procedure?  The whole thing was awful and very traumatic for her I'm sure.  They took an xray of before and after she went but that isn't going to probably tell them anything.  She used to have grade 5 reflux and had a procedure done that brought it down to a 2.  Since then though she started having alot of kidney infections in the last year.  7 this year.  So we switched her medication to Omnicef which is a pretty heavy antibiotic to be taking everyday. We were told that if she had a grade 3 or higher that they were going to need to do surgery. I just don't know what else to do and she is very stubborn and I just don't think trying to repeat it is going to make much difference. 

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#2 of 24 Old 06-20-2012, 06:40 PM
 
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hi, i don't have advice but my daughter will have another vcug at 18 months(ten months from now but i am trying to think ahead) and i was also looking into sedation so she won't feel or remember it. my daughter's is a 2/3(bilateral), and had the one infection at 7 weeks and hasn't had another. we declined the antibiotics as there is no proof they work...but if it were as high a grade as your daughter's i would maybe feel differently. your daughter's condition sounds horrible :( i hope she stays at 2 and won't need further surgery.


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#3 of 24 Old 06-20-2012, 07:28 PM - Thread Starter
 
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I hate having to keep her on antibiotics all the time but unfortunately if she misses sometimes just one dose she gets another infection so I am very dilligent about making sure she gets her medication.  She gets so sick when she has one and sometimes there aren't even any symptoms until she already has a kidney infection and by then she needs to be hospitalized.  Last time she just started saying that her hip hurt so I took her to the walk in right away to make sure and within an hour she became lethargic and started puking so we were taken by ambulance to the hospital.  They come on so fast its scary sometimes.   She had 6 infections her first year it was awful. I am glad that your daughter only has had one.  It usually corrects itself they say if its only a mild case.  I am worried though because they haven't done a VCUG   in two years and she had 4 over the summer last year and 2 more kidney infections this year  that we had to switch to a more powerful antibiotic.   I would definately reccomend the sedation which is what we did today so at least she isn't screaming from the catheter.  I am trying to look into having her sedated through the whole thing cause at her age its hard to get her to understand why she needs to pee somewhere that isn't on the potty.  We talked about it today and I have her convinced to do it next time but who knows if she will actually do it.  We have to try again though so maybe if I stay positive about the whole thing and keep talking to her about it she will do it.  Before we went I didn't want to explain too much cause I didn't want to scare her but she seemed ok with it after really talking about it when we got home.  I wish you the best of luck with your daughter. 
 

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#4 of 24 Old 06-21-2012, 07:15 PM
 
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Feel free to PM me......we're goign thru similar stuff..........our ped says 'if under 8, sedate'........for her last VCUG she was sedated,but had to be woken up...not pretty...but it worked out...she will be 6 and we're having her sedated for the next one.........Has your doctor ordered a DMSA scan? that shows the % that the kidneys are workign at ...and infections/scar tissue...........DD is on Two meds...one in morning and one at night............every bacteria keeps breaking thru.........like I said, feel free to PM me....my brain just fell asleep.


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#5 of 24 Old 06-21-2012, 07:44 PM
 
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i am wondering how much pain it is for little girls to have it done? it made my mom cry when my daughter had the test at 7 weeks. i couldn't handle being in there. and why do they need to pee there on the table?


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#6 of 24 Old 06-22-2012, 02:58 AM - Thread Starter
 
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I don't think that it is painful.  The catheter that they use is very small but she has been having these done since she has been two months old so she links it to bad experiences that she has had.  I try to explain it to her but it doesn't help.  I guess she has to pee on the table because they have to have her underneath the machine so that they can record what happens when she pees to know how bad the reflux is.  I called the nurse today and she said that they might not have to have her repeat the test if they were able to get what they needed from the xrays they did but we'll see.  I was thinking about buying a portable potty for us to take with us and have it put on the table if possible. I have also been talking to her too and she seems more accepting of the idea that she has to pee on the table. 

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#7 of 24 Old 06-25-2012, 06:57 PM
 
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have you heard yet if the test will need to be repeated?


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#8 of 24 Old 06-26-2012, 03:20 AM - Thread Starter
 
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Nope not yet.  I called yesterday and they are still trying to get ahold of the doctor.  I think they are getting annoyed with me calling everyday but I keep getting told that I am going to get a phone call the next day and haven't.  I will give it a few more days and if I haven't heard anything I will try back.  The test was Wednesday I would have thought that they would have talked to the doctor by now. 

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#9 of 24 Old 06-27-2012, 04:12 PM - Thread Starter
 
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Ok so I finally heard back from the doctor and we are going to try another test instead of the VCUG.  Hopefully this will work alot better. 
 

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#10 of 24 Old 06-27-2012, 04:22 PM
 
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what test is it?


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#11 of 24 Old 06-27-2012, 04:48 PM - Thread Starter
 
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I wish I could remember what test it was called.  I think it had the word picto in it but I am going to call and double check tomorrow when I tell them what date I decided on to have it done.  Basically they are going to be inserting a dye directly into her ureters and this is supposed to tell us the same thing as the VCUG.  She will need to be sedated and the procedure takes two hours and the nurse told me that they have to book the OR for this so it is almost like surgery but no cutting involved. 
 

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#12 of 24 Old 06-27-2012, 04:58 PM - Thread Starter
 
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  To Virginia Mom,

 

I didn't see your post until just now.  I tried to PM you but it said that I didn't have permission to do that for some reason.  We were all set to do the VCUG again but then I mentioned that she would need to be sedated and he said that they are not as accurate if you have to be sedated at all for the catheter to be put in.  So he said he wanted to try this other test.  I believe that she may have had a DMSA when she was like 4 months old but not sure.  she had some test where they had to inject dye directly into her arm but not sure what the name of the test was.  I will mention it to him.  Right now we are just trying to figure out what the grade is because she hasn't had a VCUG in two years cause her last urologist didn't want to do one hence the reason why I switched to the new one cause he wasn't doing anything and she had a ton of infections last year until being switched to her new medication which is Omnicef and she is on a large dose of it which I hate but after how sick she was I just wanted keep her out of the hospital.  He wasn't even going to do anything until she had another infection until I mentioned the medication she was on and the amount of infections she has had.  He is pretty new so not so familiar with her history yet and didn't have her chart in front of him.  After I explained , he wanted to put the rush on it and get the test done this month and if surgery is needed it will be done this summer before school starts. 

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#13 of 24 Old 06-28-2012, 06:37 PM - Thread Starter
 
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Ok so found out the name of the test.  It is called a pictocystogram.

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#14 of 24 Old 06-29-2012, 04:34 AM
 
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thanks, please if you don't mind, keep us informed. i have felt the need to connect with other parents of children with vur.


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#15 of 24 Old 07-11-2012, 06:59 PM - Thread Starter
 
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Well we had the pictocystogram done today.  She has a grade 4 reflux.  We discussed doing either a laproscopic procedure or opening her up to do it.  I told him that I wanted him to do the one that had the best success rate.  So he said he wanted to look through her chart and also look at how tall she was and her weight to decide what the best option would be.  We are probably going to be doing this sometime in August. 

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#16 of 24 Old 07-17-2012, 04:15 PM - Thread Starter
 
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We are having my daughters ureters reimplanted into her bladder and it is being done laproscopic on August 16th.  I am so terrified.  A part of me wants to try to protect her from this but I know that it is going to potentially help her.  I hope that this works. 
 

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#17 of 24 Old 07-17-2012, 05:40 PM
 
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it is a hard decision for sure! i will keep you and your daughter in mind, please update afterwards. i hope this will be the end for you!


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#18 of 24 Old 07-17-2012, 06:32 PM - Thread Starter
 
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I will and thank you. 

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#19 of 24 Old 07-17-2012, 08:55 PM
 
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Hey There.....Tried to PM you as well and got the same weird message........Would love to talk more about VCUG stuff............our uro is planning another VCUG in Sept, but with DD history thinks that she'll need the reimplant surgery............I SO KNOW What scared means now.............if you want to talk we'll figure something out.


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#20 of 24 Old 07-18-2012, 03:51 AM - Thread Starter
 
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Virginia mom,

 

I recieved your messages and PM'ed you.  Hopefully you got it. 
 

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#21 of 24 Old 08-22-2012, 07:24 PM
 
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How did the procedure go? How is she feeling? How did you do?(I totally forgot to tell you that some children's hospitals have a person called a child life expert...they talk to the child, give them a prize, etc...takes the worry away....and it's 'free').  We're set to do our VCUG next week...then we'll find out about surgery. 


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#22 of 24 Old 08-24-2012, 03:00 PM - Thread Starter
 
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The surgery went well.  The surgery took alot longer than we expected.  They took her back at 8 in the morning and I was able to go back while she was put to sleep.  I received a call from them around 10am telling me that they were about an hour behind schedule because they were having trouble getting the laproscopic machine working.  Then the doctor came out to talk to me around 1pm telling me that they had some minor complications and had to leave a stent in place on the left kidney because there was some deflux material surrounding that kidney and they had to do some more disecting than planned and were worried about her having a blockage from this.  So I didn't get to go back and see her til 215pm at this point I was very anxious.  I didn't break down until I saw her after surgery because they had her hooked up to a breathing machine and two iv's one in each arm so I did cry a little at that.  Then she started to wake up a little about a half hour or so after I got back there and was in alot of pain so they have her some pain meds which made her go back to sleep.  She also had some vomiting that night from the annestesia and meds.  She slept pretty much all of that day and didn't get up much til the following day but needed alot of assistance.  Her pee was bright red for several days after the surgery.  She has four puncture wounds on her stomache.  One on her belly button and three others that run parallel to that.  Hopefully with some vitamin E cream they will fade but they are a little bit bigger than I thought they would be.  She started to purk up by Sunday afternoon when we picked up her siblings and surgery was the Thursday before.  She is pretty much back to regular activities at this point outside of using her bike and I have refrained from going to the park just yet.  I feel things went really well though overall once we made it past the first three days.  She is going to have one more procedure to remove the stent in September and then have an ultrasound done a month afterwards and then that should be the end.  The doctor was very optomistic that this would work.  He said it has a 92% success rate so it will be so nice to have this nightmare behind us.  If by chance your doctor mentions trying to do a deflux procedure where they insert a gel in the ureters I would reccomend not doing it.  The doctor mentioned that it most of the time does not work and is very messy and is why calysta needed to have a stent placed afterwards.  She now has a softball sized piece of this deflux material behind her kidney which the doctor assured us was nothing to worry about.  She was having nighttime accidents every night before the surgery and has not wet the bed or had any accidents since so she should be all set and ready to be a normal kid.  Oh and they did have a child life expert come in and talk to her but she is very shy and was in alot of pain so she didn't stay very long with her. 

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#23 of 24 Old 08-24-2012, 07:56 PM
 
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Glad she's on the mend.  I got a little lost with the posting...what was the actual procedure she had...Was it teh deflux? And you said you Would NOT suggest that? what's the other option, the re-implants? I'm on pins and needles until we get our results back to see what the suggestion will be.......I'm so glad that your little one is doing better. 


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#24 of 24 Old 08-26-2012, 09:18 AM - Thread Starter
 
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She had both of her ureters reimplanted.  About two years ago she had the deflux procedure done and there was still some in there behind her bladder about the size of a softball.  They tried to suck as much of it out of her but it caused them to have to do alot more disecting than they wanted which made them have to leave a stent in her left kidney for a few weeks to prevent a blockage. The doctor told me that he doesn't even do that procedure anymore because it usually only works on kids that really didn't need it in the first place that probably would have eventually outgrown it.  He said that it is also very messy as well.  With Calysta it probably worked for maybe a year at most.  She then started having kidney infections again.  He said that it only has a 40% chance of working at all and if you are a grade 3 or higher you should do the surgery.  I wish we would have done it sooner.  All the worry that I have had of her getting sick and all the antibiotics that she has had to stay on.  I only hope that when she gets sick with say bronchitis or something that she will be able to take an antibiotic and have it work to get her better with all the misuse of meds to keep her out of the hospital.  I wish you luck next week with your childs VCUG. 

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