What to expect before your child’s visit

Whether you travel across town or across the country to reach the Very Early Onset Inflammatory Bowel Disease (VEO-IBD) Program at Children’s Hospital of Philadelphia (CHOP), our clinical and research teams are prepared to support you every step of the way, making sure you have the resources you need to care for your child.

Making an appointment

The VEO-IBD Program is known for its quick and easy scheduling process. If your child has been diagnosed with VEO-IBD or VEO-IBD is suspected, you or your provider may contact the VEO-IBD Program at 215-590-PIBD (7423) or online via our contact form.

An experienced program administrator will gather your initial information and arrange to receive your child’s medical records from your referring provider.

Before your appointment

Before scheduling your child’s in-person clinic visit, we will complete a quick telephone intake with you. A welcome packet, including a parent summary and consent form, will be emailed or mailed to you and must be completed prior to scheduling your child’s in-person appointment. This will provide our team with the detailed medical information we need to get to know your child and help us understand their medical history and what brings you to CHOP for an appointment.

We have a dedicated program administrator and nurse navigator who are here to help you every step of the way and will assist you through the scheduling process.

Once we receive the completed forms, we will review your child’s medical records, contact you to schedule your child’s in-person appointment, and discuss next steps as they relate to your child’s visit at CHOP. This review process is quick and will not delay scheduling your appointment.

Based on a review of your child’s medical records by our second opinion nurse navigator, we may suggest that your child see additional specialists or undergo more diagnostic testing while you are at CHOP. These suggestions may extend your child’s length of stay in Philadelphia, and we will work with you to plan accordingly. There are many options for you and your family to stay locally, and we will discuss these options with you.

Insurance authorization and referrals

We will work with our financial clearance team to ensure you are aware of insurance coverage for your child and any costs related to their appointments at CHOP.

If your insurance company requires a referral before your child can be seen at CHOP, please contact your child’s primary care provider. Your provider will need to know:

• The date of your child’s upcoming visit at CHOP,
• CHOP provider numbers (which our program administrator can give you), and
• The CHOP location where your child will be seen.

All referrals must be in place at the time of your child’s appointment at CHOP, or the visit may be delayed or rescheduled.

Our team is experienced in working with many insurance plans to ease care for families who seek our services. We are always happy to discuss individual situations and connect you with CHOP financial counselors, if helpful.

In the event your insurance plan does not participate with CHOP, we will work with our financial clearance team and your family to obtain insurance authorizations if necessary.

What to expect on the day of your child’s visit

Your child’s visit will take place in person at CHOP. The VEO-IBD Clinic is located within the Division of Gastroenterology, Hepatology and Nutrition on the 6th floor of the Buerger Center for Advanced Pediatric Care, located at 3500 Civic Center Blvd., Philadelphia, PA, on the Raymond G. Perelman Campus.

Parking and check-in

Proceed down Civic Center Boulevard and turn left at Osler Circle onto the Buerger Center plaza. Immediately turn right into the underground parking garage. There is a cost associated with parking in the Buerger garage, and your ticket may be validated during check-in on the 6th floor.

When you arrive for your VEO-IBD clinic visit, you will check in at the welcome desk in the Buerger Center lobby where you will receive a visitor badge. We encourage you to arrive at least 15 minutes before your scheduled appointment time to allow enough time to park and get checked in.

You will then be directed to the 6th floor where you will check in with the medical team at a self-check-in kiosk or with one of our patient service representatives. The waiting room has interactive activities to entertain your child while you wait. There is also a small cafe available on the first floor of the Buerger Center.

Schedule

We recommend bringing a snack and water, as well as something to keep your child occupied, such as books, toys or electronics, during the visit. Please plan to spend a few hours at CHOP, as the visit may include examinations by several different specialists, based on your child’s needs.

The VEO-IBD clinical team may include gastroenterologists, fellow physicians, advanced practice providers, immunologists and dietitians, and you may also meet with nurses, psychologists and social workers. The VEO-IBD team will work together – and in consultation with your family – to create a treatment plan for your child designed to improve both their disease course and quality of life.

In addition to a physical exam and complete health history, your child’s evaluation with our program may include genetic and immunologic evaluation and testing. Additionally, we may recommend that some children undergo additional testing – such as a colonoscopy, endoscopy, or imaging tests like an ultrasound. These studies help us evaluate your child’s digestive tract – both to diagnose VEO-IBD and determine the current state of your child’s disease. 

These procedures are performed in the Kohl’s GI Nutrition and Diagnostic Center at CHOP, where our team of gastroenterologists, anesthesiologists and nurses performs thousands of complex and routine endoscopic diagnostic procedures each year. Gastroenterologists throughout the country often send infants and children with challenging GI issues to CHOP for advanced diagnostic and therapeutic procedures and imaging.

What to expect after your child’s visit

After your child’s examination at CHOP, we will provide our recommendations to your child’s local care team and are happy to collaborate with your family and your child’s primary GI provider as needed on recommendations for VEO-IBD clinical care. If you have traveled to CHOP from a distance or will continue care with your child’s primary GI team locally, we encourage you to continue to contact your local care team for medical needs.

Supportive, family-centered care

In addition to our clinical team, CHOP’s VEO-IBD Program has a dedicated clinical psychologist focused on providing emotional support and counseling to families with children diagnosed with VEO-IBD. There are unique challenges children face when diagnosed with such a complex disorder at a young age. Our psychologist can offer support to both your child and your family. 

Our dedicated IBD social worker provides additional support services to your child and family. This support is available to you throughout your child’s entire experience at CHOP and includes virtual support groups for VEO-IBD. Our Peers Offering Practical Support (POPS) referral program allows you to connect one-on-one with another parent or guardian who has a child with IBD for non-clinical support to help you cope with your child’s diagnosis and impact on the family.

The Center for Pediatric IBD also offers monthly IBD education classes, where you can:

• Hear from our multidisciplinary team about various aspects of your child’s IBD diagnosis and care,
• Interact with other families who have children diagnosed with IBD, and
• Ask questions to IBD team members and clinical personnel. 

The class is offered virtually every first Wednesday of the month at 2:30 p.m. ET. To RSVP for future classes, please contact the Center for Pediatric IBD at 215-590-PIBD (7423) or email IBDcenter@chop.edu.