What to Expect at Your First Appointment at the Posterior Urethral Valves (PUV) Center
The Posterior Urethral Valves (PUV) Center is the first in the world to offer comprehensive, coordinated care for children with this rare disorder. If your son has PUV, our multidisciplinary team of experts will be with you and your child every step of the way.
PUV affects each child differently, making a personalized treatment plan so important. Your child’s treatment plan may include medication, behavioral medicine and other therapies, bladder drainage and surgery. We also focus on essential health concerns like nutrition, growth and development. Our goal is to partner with you and your son so that he can achieve the best outcomes medically, socially, intellectually and emotionally.
Screening for possible bladder or kidney problems is an important part of your son's treatment plan. So, our team may recommend certain screening tests. These tests will help our care team be proactive about your son's health. They help us identify minor problems so we can treat them before they become more serious. Depending on your child’s needs, these tests may take place annually or on a different schedule.
Children with PUV need expert medical care for the rest of their lives. However, with our holistic care, many boys with PUV will have normal bladder and kidney function, normal sexual development and fertility, and a good quality of life.
The PUV Center cares for patients from the Cincinnati area, across the United States and worldwide. We understand the unique stresses of long-distance care and make every effort to arrange a comprehensive, coordinated visit with your child’s multidisciplinary care team. We are also interested in collaborating with your local physicians to care for your child here and at home.
We also offer online second opinions for patients and families inside the United States who live beyond the Greater Cincinnati area (southwest Ohio, northern Kentucky and southeast Indiana).
We want to make it easy for you to get the PUV care your son needs. The PUV team will do everything we can to make your visit as comfortable as possible.
Making an Appointment at the Posterior Urethral Valves (PUV) Center
For more information about the PUV Center or to request an appointment, contact us..
International patients can reach the International Patient Program via this online form.
Before Your Appointment
Please complete all of our intake forms and send them with your child’s medical records to the PUV office before your first appointment.
Make sure to verify that your insurance will cover your visit before appointment day. Please bring a copy of your insurance card and identification with you to the visit.
On the Day of Your Visit to the Posterior Urethral Valves (PUV) Center
Please let us know in advance if you or your child have special needs or concerns; we will do our best to accommodate them.
Arriving at Your Appointment
The PUV Center is located on Cincinnati Children’s Burnet Campus. We recommend arriving at least 30 minutes to find parking, walk to the center, and to register. Please contact us if you will be more than 30 minutes late.
At Your Appointment
During your first visit to the PUV Center, you will meet your care team. Our core team of specialists includes pediatric urologists and complex urology nurses. Your team will talk with you about your son, review his medical history and test results, and answer your questions.
Your core team will decide if additional care is needed and schedule separate visits with those providers. Your child’s care team may expand to include specialists from behavioral medicine, developmental pediatrics, neonatology, nephrology, pulmonology and school services.
- Developmental and Behavioral Pediatricians - These specialists work with children who have developmental delays, learning difficulties or behavior challenges. They can prescribe medicine, provide referrals for therapy and offer guidance related to classroom accommodations.
- Neonatologists - If your baby was diagnosed with PUV in the womb, they’ll need extra medical attention after birth. Our neonatologists care for babies admitted to our newborn intensive care unit (NICU).
- Nephrologists - Our goal is to keep your son’s kidneys as healthy as possible. We work closely with nephrologists (kidney specialists) who manage kidney disease and coordinate treatments for kidney failure.
- Psychologists - Experts from our Behavioral Medicine and Clinical Psychology team can help your son adapt to the challenges that may come with a chronic medical condition. For example, they can teach him how to manage anxiety about urinary incontinence. Or they can develop strategies that help him stick to his home treatment plan.
- Pulmonologists - The presence of a PUV during fetal development can decrease amniotic fluid levels in the womb. This can interfere with normal lung development. Our pulmonologists (lung specialists) treat lung problems associated with PUV.
- School Specialists and Liaisons - If your son’s medical treatments cause him to miss a lot of school, we offer services to help ensure he doesn’t fall behind. We have teachers who provide bedside instruction to kids who are hospitalized. And our school liaisons can help your son’s teachers understand how his medical condition may impact his school attendance and performance.
Your primary contact on the team is the nurse coordinator. They will work with the rest of the team to ensure we meet your son's needs. Their job is to:
- Be your family’s primary point of contact between appointments
- Answer questions about your son's care and future needs
- Connect you to other specialists who can answer your questions if they cannot
- Review test results and share any concerns with the team
- Help schedule appointments with other specialists
- Explain what health screenings your son may need
Your care team will make sure you know about helpful resources at Cincinnati Children’s that are available to you and your family, such as social workers and financial counselors.
At the end of the visit, we will talk with you about how your child is doing and next steps. Treatment or additional testing may occur at your first visit or as a follow-up. You will leave this first appointment with a specific, customized treatment plan.
After Your Visit to the Posterior Urethral Valves (PUV) Center
Your core PUV team will want to schedule regular follow-up visits with your child. During these visits, the team will:
- Talk to you and your son about how things are going
- Provide a thorough physical exam
- Use screening tools or testing to identify any new concerns
- Make referrals to any other specialists who can provide care and support
Your child’s nurse coordinator will help plan each clinic visit. If you have specific concerns about your child’s health, please let them know before your next appointment.
When it is time for your son to transition to an adult care provider, your care team will help the transition go smoothly.
