Pediatric Urology

[livingwith]

My DD had her first diagnosed UTI in November 2007. She may have had others before that, but didn’t complain of pain or have fever so I may not have known. The Dr’s tell me VUR is congenital so she’s always had it. She potty trained around age 2, but always had to wear a pull up at nap time and bed time. We even pee right before nap but she almost always wet until recently at age 4 she seems to have more dry naps than wet ones.
She had two more UTI’s in April and Jun...Read the full article

[jadepony]

My daughter's problems were first found on my four month ultrasound. Her first surgery was when she was two weeks old. She had half of her left kidney removed. Her second was at six months to have her left ureter reimplanted. She has had several since (7?). She is nine years old now, and after 4 years, has had another infection and is back at the hospital facing surgery again. She is a hero. I am a basket case. Here are a few things I hope will help you. Do not be afraid to speak up. Ask the stupid question. You may be surprised at the answer. When your daughter gets very upset, ask the nurses is there is any other way to handle the situation, or anything else that can be done. Often they don't tell if you don't ask. The hospital/clinic you are going to should be courteous and understanding. They should be pediatric urologists, not just urologists. There is a huge difference. If you and your daughter aren't treated with caring and respect, go somewhere that you are. I had to switch hospitals in the middle of Fayth's treatment, due to insurance. We only went once, and I stayed on the phone for 3 days until we got sent back to our 'home' hospital. Find a support system of people who have been thru the same kind of thing. No one understands unless they've been there. Be strong.

[KadyFlear]

Surgery at 2 weeks old, how scary for mom and baby, bless your heart. It must have been extreme to remove part of a kidney, I haven't heard of that. I think with Kylee they are just talking about reimplantation surgery. She has a grade 3 reflux in the smaller right kidney. Was your daughter's reflux a higher grade? Did they tell you what the percent success rate for your surgeries would be? Did you have any idea she'd need more surgeries? The urologist we are seeing now is a pediatric one. He said there is a 90% success rate with the surgery, so that makes me think no further UTI's no further reflux issues. He did say her right kidney will not recover but the left will make up for it. I presume that means as she grows her right kidney will still stay smaller. I am going to ask him about that too when we see him next. Thanks so much for your post and encouragement. I pray all will go well for Fayth.

[jshawnmarie]

I am so very glad that you have written your story. I am a nurse with very little information on this subject. I have kept a great distance between nursing and children, I specialize in geriatrics. My daughter is 3 and just had her first VCUG. Well we are now out to pick a urologist and I am terrified. I have no real answers at this point. I read up on the procedure before hand and begged for sedation. I felt like the worlds biggest idiot when the person scheduling the appt said is the sedation for you or her?
I live with medical problems daily and I remember the nightmares from childhood procedures. I truely do believe that sedation should be offered for any child that can't pee and hold pee on demand.
The stories I have been reading all of these children are still trying to potty train. My dauhgter has been very succesfuyl to her capability. She only wets at night and when we aren't near enoughto a bathroom. She was one of the first to potty train in her daycare class. Scince the VCUG I am lucky to get her to go #2 in the toilet.
I am very glad that you could share your story so that I know I am not alone out here. I am in shock still so forgive the rambeling. I am interested in any "things you should know before you get there" information that you might be willing to share.

[KadyFlear]

Dear jshawnmarie... I think the person asking if sedation is for you or your daughter must be an idiot... or real bad at trying to make a joke. Our pediatric PCP had told us she would be sedated, then when we got there they said the Dr had to order it and didn't. I did share that with him so he'd know for future to order it. My DD is having her surgery in January and will have a follow up VCUG about 4 weeks after. You can bet I will ask for sedation or something as I know she will be even more upset and freaked out since she will now know what is coming.
What they did was take us to an xray room and have her take off her pants/panties. We laid her up on the table and I tried to shield her eyes from seeing the catheter. They put iodine on her labia which was really cold. She still remembers and asks when we go to any Dr if they are going to put ice on her pee pee. The nurses were patient for the most part while my DD just cried and eventually was screaming she wanted to go home. I held her arms and cradled her head, she was actually very still, I was impressed. I kept talking softly to her, praying with her, anything to calm her. It seemed like it took a while, but it was in reality maybe a 5-10 minute procedure if I had to guess. The worst was asking her to void while on the table. I know they need it for their test but please, what child is just going to pee (the cath was out at that time too). They were kind of pushy on that. I think after asking a couple times they should have stopped, they seemed irritated with her. Finally they let her up and we peed on the toilet. Then we were done. Hang in there, you are not alone. Please post again and let us know what they say. Did you get a renal ultrasound too? They did that for my daughter also. The VCUG showed her reflux, the ultrsound showed us her right kidney was scarred and much smaller than her left (that's why she needs surgery so it doesn't get worse) Her reflux is only a grade 3 which what I read was 50% of kids outgrow it. Due to her kidney though we had to have surgery.
Hope that helps. Hugs
Kelle