need advice!! Please!

Nicole - posted on 02/10/2010 ( 4 moms have responded )

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Hello all! My name is Nicole and I have a 3 yr old daughter Madison. Here is a very brief history. In june of 08 madison had her 1st UTI. She didn't have another Until may 09. In may she began doubling over in pain and having accidents. High fever pain while urinating, back pain etc. Took her to the ER said she had a UTI and that she should see a ped urologist for a work up. Called her ped and she said no we arent going to do that and ignored it. In June 09 we were visiting my mom and fever spiked pain etc went to ER in her town and they said UTI. They consulted childrens in Pittsburgh and childrens wanted her to come by ambulance. We spent 5 days at childrens. In sept. 09 she got another UTI. In october we had a VCUG and it showed no reflux. we say the urologist and he said that everything looked good and he didnt think it would happen again. well Feb 3rd 10 she got another UTI. She is on Septra for 10 days. I guess my question is, If no reflux is found, can she still have it? is there something else it could be? Have any of you dealt with this? Im just soo worried and dont really know where to turn. side note: we just moved to VA so she will have a new DR. Any advice would be great!!!

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Misty - posted on 03/13/2010

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Hi Nicole,
I also have a daughter Laynie, she is 3 too. We have been dealing with uti's, kidney infection and everything for a year now. We just got told our daughter will have to have surgery but it is our choice of which surgery she will have. When they did our daughters VCUG, they said she only has a low grade 1 reflux. Well when you read anything about that.It says that with the low grade 1 you more than likely won't need the prophylactic antibiotics. Well our daughter does need them, which we found out the hard way. It is a very long road. And from what I have been reading these past few days seems like our road is just beginning. My advice would be to have them look over her VCUG's again, and maybe they missed a small low grade reflux. Because it sounds to me like your daughter does have this. I know how scary this all is, we have been in the hospital 4 times and even had to do the ambulance once. Our doctors didn't think there was even anything wrong with Laynie the first few months and kept telling me her fever was viral. So now after multiple uti's and kidney infections, we are now looking at surgery.

Tom-Val - posted on 02/23/2010

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Its an out patient procedure the DMSA - get it done recommend it - it will tell you if there is reflux, an obstruction (which she could of been born with it) its possible...Its hard to see your child go thru all of these test but in the long run, later down the line you will be glad you did...

Tom-Val - posted on 02/23/2010

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HI, sorry to hear about your daughter, however, the same thing happen to my daughter. But it seems to happen every 2 months and then she is in the hospital for 2 weeks. The doctor said, the VCUG showed nothing. My advise is collect all your medical records after each doctor appts, keep a binder that's what I do. My daughter is only 3 yrs old and has been going thru this for 2 yrs and 7 mths. She has had the deflux procedure done twice - the most recent one was this past december, and I can see at times it does not help. I believe and from what I read your daughter should be on the antibotic full time every day, if not, she will end up with scarring of the kidney. My daughter was taken off of the anitbotic as per the urologist and she ended up with scarring of the kidney then she had bi-lataral (both kidney's had reflux) Now, the doctor wants to try it again, my husband and I will not stop it. Since this last procedure she has been having accidents (she was fully potty trained) after accident. Not urinating like normal....Always get a 2nd opion - write all of ur questions down before you go? Ask what GRADE is she? Because its in grades this condition and that determines how bad it is? There is alot of information on the internet about this condition - read and familiar urself with it..our doctor would say one thing then I would ask for a copy of the report then he would turn around and change what he just said. So stay positive! You are the parent so ASK as many questions, read the medical records, make sure they are telling you everything, your kids future health is at state READ as much as you can. Its hard being in the hospital with them weeks at a time with UTI, fever, etc...been doing it for a long time, its exhausting for everyone in the family !! Stay positive.

Theresa - posted on 02/17/2010

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That is very strange that she has had that many uti's and showing no reflux......

but i have a Question, did they just take pics or did they do a Voiding one and x rayed while she urinated? because some kids only reflux while they void...and if they did i would suggest trying to have them do another one...have they done a renal ultrasound or a DMSA scan? alot of the time they will do that in the hospital while she was admitted.....

I hope this helps and Good Luck...BTW my daughters name is also Madison :-)

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