Preparing for Your BPAN Appointment

The Clinic for Beta-Propeller Protein-Associated Neurodegeneration (BPAN) and WDR45-related Disorders brings together a team of experts to manage the unique needs of children affected by these conditions. During your visit to the BPAN Clinic, your family will consult with neurologists, a genetic counselor, occupational and physical therapists, and members of our research team who are deeply knowledgeable in BPAN and WDR45-related disorders.

Below is information to help guide you in planning your visit to our clinic. We thank you for trusting us to be involved in your child’s care. The BPAN Clinic is a part of Children’s Hospital of Philadelphia’s Neuroscience Center.

What to expect on the day of your visit

During your initial visit, your family will meet with Pediatric Neurologist Nivedita Thakur, MD, and Genetic Counselor Holly Dubbs, MMSc, CGC, who will review your child’s prior medical history and make recommendations about their current care. They may refer you to other specialists at CHOP who can help manage your child’s condition such as an epileptologist if you need recommendations for seizure management. These referrals often can be linked to your follow-up appointment with the BPAN clinic.

Your child will also be evaluated by occupational and physical therapists who have expertise in neurogenetic conditions. Finally, you will meet with Laura Adang, MD, PhD, a neurologist who specializes in BPAN and WDR45-related disorders.

A typical visit to our clinic lasts about four to six hours; if an EEG has been requested, the visit may take an additional hour. Arrival times typically start at 8 a.m. Once you are checked into a room, your family will stay there and each of the specialists will rotate through to see you until you have met with the entire team. Feel free to bring your child’s favorite snacks, drinks or toys to help keep them comfortable during their visit. Two caregivers are welcome to attend the visit with the child.

Patients, parents and other affected family members will be given the opportunity to participate in our research program. This may include providing a blood or saliva sample on the day of your appointment. Participation in research is voluntary and will be at no additional cost to you. Please feel free to ask us questions about our research on the day of your visit.

What to do prior to your visit

In order to be seen in the Clinic for BPAN and WDR45-related Disorders, your insurance may or may not require a referral from your pediatrician/primary care doctor. If you are uncertain, please verify this with your insurance provider. You may also want to ask your insurance about your responsibility for out-of-pocket expenses. You may need to pay a co-pay or deductible for each of your physician visit(s), testing, physical and occupational therapy sessions, and other services provided. Our team can offer you help and guidance, so please let us know if you have any questions.

You may also consult with CHOP’s Patient Cost Estimation (PCE) Department, which can provide you with estimates related to your out-of-pocket costs for scheduled or proposed services. You can send a request to the PCE Department through your MyCHOP account, reach them via email at PatientCostEstimates@chop.edu or by phone at 267-426-1467.

If you have not already activated MyCHOP, our care coordination app, please contact us to do so. MyCHOP will provide you with access to your child’s medical information, allow you to communicate with your care team, schedule appointments online, and provide you with access to virtual appointments.

Before you come in for your visit, please review our current visitor guidelines in place to keep our patients, families and staff safe.

Pre-visit checklist

Prior to your visit, please:

• Activate MyCHOP
• Complete a HIPAA Authorization Form, which provides us with access to relevant information concerning your child’s care
• Contact your child’s pediatrician to request a referral (if needed)
• Contact your pediatrician and primary neurologist to request medical records. Please be sure to include EEG reports, MRI reports, swallow studies and other relevant testing results
• Fax or email medical records, the HIPAA Authorization, and your intake form via email to BPAN@chop.edu or fax 215-590-1771 (Attn: BPAN)
• Obtain copies of any MRI imaging completed to date and bring copies on a disc or flash drive to your visit for our review
• Complete new patient questionnaires and intakes prior to the visit
• Please bring a list of all current medications and dosage along with a list of previously tried neurological medications (for example: seizure, spasticity and movement disorders medications)

Driving and parking

Your child will be seen by our team at the Buerger Center for Advanced Pediatric Care, located on 3500 Civic Center Blvd., just south of the Main Hospital.

• To access the parking garage beneath the Buerger Center, take Civic Center Blvd. to Osler Circle, turn left at the Osler Circle light into Driveway B, and then follow signs to Garage B. You will take a parking ticket to enter, which can be validated at the Welcome Center on the first floor of the Buerger Center.
• Validated parking tickets pay the reduced rate of $4 per day. Parking can be paid for at kiosks in each parking garage, or with cash or credit/debit at each parking exit.
• Once you sign in on the first floor, you will be asked to provide a driver’s license or other form of ID to receive a visitor pass. You will then be directed to take the elevators to the 10th floor, where you will check in and meet our team.

After your child's visit to the BPAN clinic

Within a week of your clinic visit, your care team will share a clinical letter that contains a summary of the evaluation and their recommendations via MyCHOP. This information will also be sent to your child’s referring neurologist or pediatrician.

A few weeks after your appointment, a member of your BPAN care team will reach out to answer any questions you may have regarding the visit, follow-up recommendations or assistance needed to schedule appointments with other subspecialities. You will also be contacted by our staff to schedule a follow-up visit with our team.

You may also receive a message from our Patient and Family Experience team asking that you complete a brief survey about your experience. We regularly review the feedback from our families and greatly appreciate you taking the time to respond.

If you have any questions or would like to follow up with our team, please contact us via email at BPAN@chop.edu or by calling 215-590-1719.

Recommended accommodations

Your BPAN care team at CHOP wants to ensure that your experience with us is as comfortable as possible. We understand that you may be travelling from outside of Philadelphia to see us.

For your convenience, we have compiled information for local hotels. Ask if they offer discounts for CHOP patients and families. Also, the Kolbe Fund can financially assist with hotel rooms. Funds are provided based on need. If you are interested, please call CHOP Social Work Services at 215-590-2072.

CHOP also has a Hospitality Team that can make lodging, dining and entertainment recommendations to help you plan your time in Philadelphia. The Hospitality Team can be reached at 215-590-2779 or FamilyHospitality@chop.edu.

Virtual visit tipsheet

We strongly prefer seeing our BPAN patients in person, but video visits may be possible in some circumstances. Please read this tip sheet if you have an upcoming video visit scheduled. If you have other questions about appointments, or need to sign up for MyCHOP, please call us at 267-425-0515. Additional information about video visits CHOP, can be found here.

What you will need for the video visit:

• An active MyCHOP account. If you already have an account, sign in to ensure you can successfully access your account. If you have any issues, you can use the chat support feature, submit a question for technical support, or call 267-426-4357 for additional MyCHOP support.
• A mobile phone or tablet with Wi-Fi access. The video visit experience is best on a mobile device, so it is strongly recommended that you use a phone or tablet, and use Wi-Fi when possible, instead of your cellular network. These visits do not always work on desktop computers, so please plan to use a phone or tablet instead.
• The MyCHOP mobile app. While you may be able to access the visit through an internet browser, we strongly recommend downloading the MyCHOP app to ensure your visit works properly on your mobile device.

How to prepare for the video visit:

• Ensure the MyCHOP app is downloaded to your device you are able to log in. If the app is not working properly, delete it and reinstall.
• At least 10 minutes prior to the appointment, click on the link sent to you via MyCHOP.
• Prior to your appointment, prepare a list of questions for your doctor. Also have your child's medication with you, as well as a list of any medications that require refills.

Tips for a successful video visit:

• Pick a quiet and private space that is well-lit to carry out the call. Ideally, there will be enough room for us to see how your child walks, if applicable.
• For best lighting, be sure that your phone camera will not be facing a bright light.
• Limit distractions - ideally, someone else will be watching other children in the house if necessary. And please, DO NOT CALL WHILE YOU ARE DRIVING. For the safety of all of those involved, we will not continue a video call while you are driving.
• If your child is an adolescent, please be aware that we may ask to speak with your child alone, so please have a private space available for this (it may be the same room and you are just able to leave the room and close the door).
• Prepare your child just before the visit: make sure they have used the bathroom and are not hungry. Have something quiet that they can play with during the visit.

We strive to offer the same care via a video visit as we do with in-person visits. So, if for some reason we feel that we could not get the information needed from a video visit, you may be asked to schedule an in-person visit.