Hey Marie!!
Yes, Kaili has kidney reflux. She had never had a UTI until a few weeks before she turned 3 yrs old.
She wasnt feeling well and then developed a really high fever. Eventually it got up to 104.7 and they told me to bring her into the pediatrician's office right away.
They took a urine sample and it came back positive for a UTI and we were rushed the the children's hospital here in Orlando. She was put on IVs and admitted overnight. It was all really scary to me because it happened so fast.
The IV part was awful. Simply because I KNOW my little girl and they were telling me they would put the IV in by "distracting her" with a book while they did. I told them that wasnt going to work, that they had my permission to hold her down while they did it in her arm. (Kaili has had to get stitches before and I know how she is with that stuff, she fights like hell)
Anyway, they insisted on doing the "gentle" way w/ their book idea. "We do it ALL the time." They got it just a bit in her hand and she ripped it out. So then they ended up holding her down and doing it in her arm all wrapped up.
Here are pics
Trying to give mommy a smile - you can tell she was not feeling well
Finally getting some rest
While we were in the hospital we had also her ultrasound done. That was really easy. I just told her it was the same thing they used on Mommy's tummy to see Alana when she was in my belly. She realized that it wouldnt hurt and she really liked that everyone at the hospital gave her toys and stickers when she was good.
Then we were sent home and had to schedule the cystogram. I was totally scared to death of that one. Because Ive had a catheter with no pain meds (before my c-section w/ Kaili) and I knew it was bad.
This will be long, so Im sorry! But I wrote about it in my journal when I got home, so I'll copy and paste it for you to read.
Well we had the VCUG done this morning...
She screamed when they put the catheter in, but then she was better once it was in. She had to lay on her back on the x-ray table which made her pretty pissed.
Wayne's mom came in with me and helped hold Kaili's arms above her head. She had to get this dye injected into her bladder to test for the Kidney Reflux. Then they took the catheter out and we had to wait for her to pee it all out on the towels on the table while laying down on her back. They wanted to take xrays as the dye passed through her system.
She was crying the whole time saying "Im all done now. Im all done now. No more pictures of my butt." (that was funny, but I wasnt laughing at the time, lol)
When they told her to go ahead and pee, she said "NO! I pee in the potty!" (We were in the middle of potty training at the time.) She held it for 30 minutes!! They said it normally takes like 5 minutes to go. They were even pouring warm water on her down there to make her go!
The doctor that was in there with us said that she couldnt believe how much control Kaili has over her bladder. She said that as much of the fluids they put in her - she should have been peeing just because her bladder was SO full (we got to see it on a TV the whole time.) So then they put a diaper on her while lying down to see if she would feel more comfortable peeing in that while on the table. She wouldnt go. Said she would go on the potty and that she was "ALL. DONE."
Finally they said they saw enough - I took her to the bathroom in the xray room and she peed FOREVER. LOL! Little monkey. So then I brought her back onto the table so they could do some xrays of her empty bladder. They said around this age is the hardest age to do it because they are taught to pee in the potty and dont understand its ok to go on the table in front of everyone.
Then the doctor told me that Kaili has grade 2 kidney reflux in one of her kidneys. 
Im SO glad we had this test done. I hated putting her through it, but Im glad we were able to catch this early on.
Basically, they said that the American Academy of Pediatrics' guidelines are that a girl under age 5 with a first UTI have an ultrasound done and a VCUG to find if kidney reflux caused the infection. The problem is that if they DO have kidney reflux, then when they get a UTI it can cause scarring in the kidney(s). Kidney reflux doesnt really cause any pain so it goes unnoticed w/o the VCUG showing it, except that the kids get UTIs. When they get older, the scarring that was done can cause problems for them in adulthood.
They said with grades (or phases) 1 & 2, kids usually grow out of it by the time they start regular grade school. Then there are grades 3, 4, 5. With 1 & 2, they are put on a low dose of antibiotics every day. I hate that. BUT she's already been taking amoxicillin now for over a week and she does fine on it, so we can keep her on that for now. The antibiotics keep UTIs from happening, which then prevents any infection from scarring the kidneys.
She has to go back to get a repeat VCUG in November next year to see if she's growing out of it.
With the higher grades (like 5) they usually have to do surgery. So thankfully, hers is one that can be treated until she grows out of it.
Kaili's pediatrician called today after the tests and wants Kaili to see a Pediatric Nephrologist for the kidney reflux. So I have to make that appt. Luckily - they gave me 3 specialists to choose from, and my mom knows one of them and said he's amazing with kids. My sister went to him when she was younger. So now I have to call him this afternoon.
To bring you up to date, we've seen the specialist twice since that entry.
Once following her VCUG and then we had an appt in May as a 6 month followup. She gets to stop all medication come November when it has been a year - as long as she has no more UTIs (which she hasnt! *knock on wood*) I hate her being on the meds, and Ive even forgotten to give it to her a few times (oops!) and she hasnt had a UTI which is great!
The specialist just does an ultrasound while youre there to check out everything. Kaili's bladder and kidneys look great. He said he doesnt think we'll do a repeat VCUG in November this year because most kids dont grow out of it until the start grade school (like ages 5-6) so he doesnt see the point in putting Kaili through it again this year when he knows we'll most likely see the same results as last year since she'll just be turning 4.
The plan is to see him again in November, take her completely off the prescription (Amoxicillin) and then just keep an eye on her until she's 5 when she'll get the VCUG (cystogram) done again. Hopefully she'll grow right out of it and now get anymore UTIs. He did do an u/s when we got there, then had her pee in a cup (to test the urine) then he did another u/s to make sure she completely empties her bladder when she goes. Which she did.
WOW! Sorry it was so long!
If you read all of this I hope it helps you. Or you can atleast take comfort in knowing others have gone through it.
No matter what I tell you about it youre going to hate seeing your little girl going through this. But it will be over quickly. Just stay strong for her and tell her it's ok and that she's a good girl and very brave. Hold her hands. Kiss her little head. You'll be right there with her. I tried really hard to stay strong for Kaili. And it helped to have my MIL there reassuring Kaili (and me!) that it was ok. Wayne is to weird about doctors and stuff that he would have freaked out during it Im sure.
MEN!
Good luck sweetie! Let us know how everything goes!!
Hey, SheKnows Guest - we need you! The SheKnows baby boards aren't going anywhere - but perhaps you'd consider helping us grow our 
Re: UTI in little one - additional testing?
), and they said it almost always fixes itself by 5 years. They did say that she may have UTIs more often, but that they were confident hers would be fine. No UTIs so far, but I appreciated that no one did extensive testing at any point so far. They said if she gets more than 3 UTIs, we'll go through some testing to see if any intervention is needed. Talk to your ped. about a wait and see approach for now, and if they persist with scare tactics, let them know you'll get a second opinion and get back to them with your decision. 
Good luck! 
). But I'm so thankful to have so much good information.
