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 We started seeing the urologist, because when she had her fourth UTI we were told there might be something going on there. That’s when we did a consult with a urologist. Actually, it was someone from CCS that gave us his name. She said, “You need to see an urologist because this child is having frequent UTI’s, and by the way, this is the one to see.”
Generally what would happen was, we would start with a low grade temp, and of course that would continue to elevate. Then she would start vomiting and losing weight, and she would decompensate pretty quickly and end up being hospitalized. She would generally be hospitalized for dehydration and of course that would lead to a discovery of the UTI.

 

Mother of Amalia, age 9

 

 

 We didn’t know any better
When I first had Jared, I was in the hospital for two weeks with a gastrointestinal disorder. Jared stayed with me, thank God, for insurance reasons, and because I preferred breastfeeding he had to. I was hooked up to two IVs, I couldn’t really take care of Jared, so all the nurses, they would give him the food solution, bathe him… I never saw a diaper until almost my last day in the hospital…

I breastfed for probably the first four or five days. Because of my condition, I was on too many drugs to breastfeed, so he went straight to formula. So with that formula, whether it was a burp or a gas bubble, something happened – he just couldn’t hold it down. As soon as he took his bottle, it would come right back up. He ended up going to the hospital the week of Thanksgiving for failure to thrive. They had done blood work at that time and they noticed that he had a UTI. That was basically back burner, the problem with his bladder: failure to thrive was the big one. Now if you want to go in a big circle, he was never allergic to anything, his formula never gave him any problems: it was his bladder backing up, pushing his stomach, pushing everything out. We didn’t know that at the time!

We are not familiar with boys in our family, it’s all girls, so to me, when I got him home and his urine stream was not a stream, it was a piddle, we didn’t know any better! We thought, okay, he’ll grow into the big stream – because the big joke was, you put something in front of him, because you’re gonna get splashed! No nurses had ever told me anything different, and like I said, I never saw in the hospital. I would have assumed that in the two weeks that he was there, they would have noticed something. They would’ve noticed that wasn’t right.

Mother of Jared, age 6

 

 

This is not secondary
He started bedwetting every night when he was about six years old, and before that he always had a dry bed, so I didn’t know what was going on. That’s what alerted us. We came in to see if there was anything wrong. We saw another doctor (it wasn’t here at Children’s) and she said that everything was okay, that it was secondary urinosis problem, which is bedwetting, and that when they get to a certain age it would stop. But then it got worse where he was sitting and playing a video game and was wet. So it wasn’t just while he was sleeping.

At first, I basically just took her word and said okay, it’s going to be okay. But that’s when I noticed him sitting there urinating, and so I said definitely, this is not secondary.

Mother of Manny, age 10

 

He couldn’t urinate
We had a really hard time potty-training him because of constipation issues related to his bowel obstruction, but we didn’t really see any urinary problems early on. Then we went through a spell when he was in the hospital that he couldn’t urinate. They started ultrasounding his bladder and they said, “Oh my God, it’s huge!” He had a lot of residual. So we had done a work-up – I’m trying to think, he was probably eight or nine, somewhere in that time frame – and he had a really enlarged bladder, but once we gave him medication, he was able to go on his own for a while.

Then we started with periods where he had urinary tract infections for a little while. At the same time we decided to try him on some saline by Hickman catheter and it started to make a big difference with all of his symptoms. But once he was taking more saline, of course he’s got more urine, so he was having lots of accidents at nighttime. But he was getting two liters overnight, so it was large volume, so that wasn’t such an issue. But then he started having urinary tract infections off and on, not as many with the increased saline input, but then he started having discomfort when he was urinating.

Mother of Robert, age 16

 

Her diaper was always dry
Kristin was 2.9 years old and still in diapers when we realized she had a problem urinating. Every time we would change her diaper, it was dry. Even when she had a bowel movement, she would have no urine. When she did finally go (which was around once a day) we could actually hear it coming out and she always wet right through her clothes. When she was little she did urinate but it wasn’t as much as a “typical” child.

Kristin has low muscle tone, which we thought contributed to her problem. We were wrong. We decided to seek medical attention when Kristin came down with a urinary tract infection. It was a really bad one and her pediatrician had recommended she see a urologist at Children’s Hospital.

Mother of Kristin, age 4

 

That’s what they think started it all
She got a pyelonephritis in the year 2003. She got one pyelo and needed to be admitted to the hospital. And after she was discharged she got another one right away. And then that year she continued to have urinary tract infections and she got three or four pyelos and admissions to the hospital and one visit to the ER. Before that she was kind of not wanting to poop, she was very constipated and holding her poops and all that, and that’s what they think started it all.

And then she was put on laxatives as needed and she continued to have these problems, and she kept getting, for a year or more, a lot of urinary tract infections, not as severe. Some of them were, but I think they would catch more in time, because as soon as she had a symptom, I would take her to be checked and place her on antibiotics.

Mother of Naomi, age 10

 

 We went to a birthday party with a kiddie pool and that night she had an accident, and the next day she was screaming and crying when she had to go. And I had bladder issues as a child, I had continuous bladder infections all growing up, so I knew exactly what was going on. I was like oh no, she has a bladder infection from that stupid kiddie pool! So we went in to doctor, it was like a Sunday night, we go in, we get the sample.

It was the first bladder infection and it was like you turned on a switch. It was never the same since. She’s had issues ever since.

 

Mother of Meghan, age 8

 

I think there’s something wrong with her kidneys
Alexa was in middle school. She got very, very sick, and they thought she had mono. She had a positive mono test, but it ended up coming back negative – it was a false positive.

She was running fevers, she wasn’t eating, she was very skinny, vomiting – we thought she had flu-like symptoms in the beginning. And then she was complaining about a lot of back pain, and I said to her pediatrician, “I think she’s got some kidney problems, because she’s complaining about some flank pain.” And having a nursing background, I said to the doctor, “I think there’s something wrong with her kidneys.” And he said, “Okay, let’s just do an ultrasound. We’ll rule it out.” And then when he called me and he said she had pyelonephritis it kind of frightened me because that’s pretty severe.

Mother of Alexa, age 16

 

We had no way of knowing
Her bladder pressure was extremely high. The risk of reflux to the kidneys was there. So what we do is keep the bladder as empty as possible through catheterization and quiet the detrusor by medication, or else paralysis by Botox. Her condition is called dyssynergy and it probably has to do with the tethered cord. The bladder dysfunctions and its sphincter opens but not voluntarily, and so the bladder is not synchronized: it doesn’t squeeze when the sphincter opens. So that’s the short story.
We had no way of knowing that until we were going through the potty-training phase and we noticed that she would have these urges to urinate every 45 minutes, and they would be very strong urges, and that’s roughly when we found out.

Father of Ellie, age 8

 

 

 When Ryan began potty training, he was able to have his bowel movements on the toilet almost immediately without accidents. But while he would urinate in the toilet when asked, he never asked to pee in the potty and he constantly had accidents. He went through his days with damp underwear, changing repeatedly. We started working with the pediatrician on this problem when he was an older three-year-old.

 

Mother of Ryan, age 11

 

That didn’t really mean anything to me
He recovered from the surgery* very well, walked at a normal age. I would say toilet training was okay, but he used to have a lot more bowel accidents…I think in retrospect that some of the difficulty must have been related to the un-tethering and to any nerve damage that might have occurred at the time. But at the time, I thought, this too shall pass. And it did. He became toilet trained like any normal kid. He did have some accidents – he would have urgency, I would say, that we didn’t really recognize for a while. But he basically was normal for a very, very long time…We moved up here three years ago, so he was about eight. The last visit that we had in North Carolina – they usually do a pre- and a post- scan before and after they empty their bladders – I think I remember the technician remarking that he hadn’t completely emptied his bladder, but it wasn’t something that triggered anything for me because I didn’t really understand. I didn’t know that that meant, oh, he might have a neurogenic bladder. It was sort of like, we’ll just keep an eye on it; it didn’t really mean anything to me. … When we moved here to New York I noticed that first year he seemed to be having many more occasions of urgency, where he’d pee and then five minutes later say, “Oh my God, I have to go again! I have to pee, I have to pee!” Or he’d come running up the driveway after school and he’d run right into the bathroom and he’d have a big poop. So he just didn’t seem to have self-awareness, because I kept saying, “He’s waiting too long, he’s waiting too long.” And I kind of recognized this is different, this is a change. And I knew that I needed to be proactive, because they always said “Keep an eye out for any changes.”

Mother of Henry, age 12

* Editor’s note: Henry had surgery at three months to de-tether his spinal cord.

 

Let’s just wait and see and what happens
They did a voiding cystourethrogram in the hospital when she had the infection, and they knew that it was abnormal. And I can remember my pediatrician came in to tell me about it and I was just about ready to cry. I said, “So do you mean she’ll have to have a catheter?” And she’s like, “Take a breath. She’s five months old. We’ve got a long way to go. And she’s just had this surgery, let’s just wait and see what happens.”

I didn’t really know she had ongoing bladder problems until I was trying to potty train her – I couldn’t get her to go more than an hour and a half without wetting. And then sometimes you would put her on the toilet and she couldn’t go and then she would wet.

So first they started her on Ditropan (Oxybutynin), and we tried that for a little while, and that didn’t help. And then she started getting recurrent bladder infections, and I sent her to preschool still in pull-ups because she could occasionally go without wetting but I couldn’t guarantee that she wouldn’t have an accident at all.

Mother of Kayla, age 14

 

They thought it was the acid reflux
He was wetting the bed. He was getting nauseous every morning before school. He was red in the face with high blood pressure – I didn’t know then but that’s why. Generally he didn’t feel well, and he had a meat aversion, he did not eat meat.
I brought him to the doctor in November of sixth grade. He was getting sick every morning and when I brought him to the doctor they thought it was an acid reflux problem. So they put him on Prilosec (Omeprazole), and I think there was a different medication, but we tried different things because they thought it was acid reflux that he was vomiting so much. And then I brought him back maybe three more times, just constantly trying to figure out what it was. They kept saying they thought it was the acid reflux.

And in the spring that year, it was May I think, he was playing baseball and he was actually so sick that he vomited. And still wanted to keep playing! My husband took him home (I wasn’t at the game, I was home with my other two kids). He brought him home and said, “You know, I think that medication” – because they just switched him to another acid medication – he said, “I don’t think it’s agreeing with him. I think he’s dehydrated.” He was really looking sick and dehydrated and I decided I was going to bring him to the emergency room. I figured they were going to say he is dehydrated, replenish his fluids, and send him home. That’s when they did the blood work on him and his creatinine was so high and he was rushed here.

Mother of Dylan, age 16