Preparing for Your Child's Appointment

What to expect before your child's visit

young boy IBD patient running to mom's armsWhether 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. If your child has been diagnosed with VEO-IBD or it is suspected, you or your physician can contact the VEO-IBD Program at 215-590-7423.

An experienced clinic coordinator will gather your initial information and arrange to receive all of your child's test results and reports from your referring physician.

Before your appointment

Before scheduling your child's clinic visit, we will review your child's medical records in an intake form. This information will be emailed or mailed to you in advance of your child's appointment. This will provide our team with the detailed medical information we need to get to know your child and help us understand their individual symptoms and disease presentation.

We have a dedicated clinic coordinator who is here with you every step of the way and will help you complete the form. 

Once we receive the completed form, we will review your child’s medical records, contact you to set up your child's 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.

We may suggest your child receive additional diagnostic imaging and repeat an endoscopy and/or colonoscopy 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

If your insurance company requires a referral before your child can be examined at CHOP, please contact your child's primary care provider. The provider will need to know the date of your child's upcoming visit, provider numbers (which our clinic coordinator can provide you), and the CHOP location where your child will be seen.

Referrals need to 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 facilitate care for families who seek our services. We are always happy to discuss individual situations and connect you with CHOP financial counselors if helpful.

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

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. The cost for parking is $4.

When you arrive for your VEO-IBD program 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 prior to 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 something to keep your child occupied, such as books or a tablet, during the visit. Please plan to spend up to four hours at CHOP, as the visit will include examinations by several different specialists, based on your child’s needs.

Once you and your child are escorted to an exam room, you will not need to change locations — all of the specialists planned as part of your child's appointment will come to you. Your child will receive expert care from gastroenterologists, immunologists and dietitians, and you may 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 to improve their disease course and quality of life.

In addition to a physical exam and complete health history, your child’s appointment with our program will include genetic and immunologic evaluation and testing. Additionally, we may recommend that some patients undergo a colonoscopy, endoscopy or an imaging test – such as an ultrasound or CT-scan based test – while they are here at CHOP. These studies help us diagnose VEO-IBD or re-evaluate the current status of the disease by examining your child’s digestive tract.

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 a 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 reach out to your child's local care team within a week to relay our recommendations for your child and collaborate on a care plan. Throughout the entire process, we will work closely with your child's physician back home to coordinate your child's care. Within two weeks, we will call your family to check in, review lab results for any tests performed during your visit and answer any additional questions that you may have.

We are happy to collaborate with your family and your child's local care team for ongoing VEO-IBD clinical care, and in those cases, ask that your child be seen at CHOP at least every 6 months so that we can stay up-to-date on your child’s progress.

If you traveled to CHOP from a distance, please continue to contact your local care team for urgent 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 who are diagnosed with VEO-IBD, because of the unique challenges children face when diagnosed at such a young age.

Our social worker provides extra support services to your child and family. This support is available to you throughout your child's entire experience at CHOP, and includes in-person and virtual support groups for VEO-IBD. Our POPS (Peers Offering Practical Support) referral program, allows you to connect one-on-one with another parent or guardian who has a child with IBD.

The Center for Pediatric IBD also offers monthly IBD Education classes, where you can hear from a multi-disciplinary team about various aspects of your child’s care, meet other families and children diagnosed with IBD, and ask questions. This is offered both in-person and virtually, for families who live a distance from the hospital.