What to Expect at Your First Appointment with the Hemophagocytic Lymphohistiocytosis (HLH) Center

During your child's first visit to the Hemophagocytic Lymphohistiocytosis (HLH) Center, you'll meet several members of our caring team. Depending on your child's needs, the purpose of the visit could be to confirm a diagnosis of HLH, provide treatment recommendations, or offer a second opinion about your child's diagnosis or care plan.

This visit will last between four and six hours. Below is information that explains how to prepare and what to expect.

Making an Appointment

The HLH Center accepts self-referrals and physician referrals by email or phone and via our online form. If a family member makes the initial contact, we will call the child's physician to confirm the referral and obtain additional medical information, such as a care summary, lab results and radiology reports.

Before scheduling your child's appointment, our care manager will call you to discuss your child's needs and how the HLH Center can help. The care manager will share information from this conversation with others on the medical team. Then she will contact you to schedule the appointment.

If you have additional test results and medical records to share, the care manager will explain how to send them to us. Or you can bring them with you to the appointment.

You will meet your care manager in person during your visit. They are your “go-to person” for questions and concerns related to your child's visit, test results, treatment recommendations and appointment scheduling. Please reach out to them any time before, during and after your visit.

Before Your Visit

If you are traveling from another state or country, you may have questions about the area and local accommodations. Contact your care manager or call our 24-hour phone number if we can help.

Before the appointment, your child may do all activities as usual, including eating normally and taking regular medicines.

What to Expect at Your First Appointment

On the Morning of Your Appointment

If your child has a cold, tell the registration staff when you sign in. If your child has a fever, please contact your care manager or call our 24-hour phone number before leaving home to let us know.

Bring along any medical records that you or the referring physician have not already provided.

Before Arriving at the Clinic

Plan to arrive about 45 minutes before your appointment time. This will allow you to park, find the clinic and register. If you are running late, please contact us.

At the Appointment

After signing in at the registration desk, a nurse specializing in HLH care will talk with you about your child's health.

Your first visit will include time with an attending physician who specializes in diagnosing and treating HLH. The physician will examine your child, ask questions about their personal and family health history, talk to you about past test results and order additional tests if needed.

If the physician orders genetic testing for your child, they may refer you to a genetic counselor to learn more about the testing and what to do with the results once available.

Your Child's Personalized Treatment Plan

At the end of your appointment, the care team will share insights about your child's condition and provide treatment recommendations. We do not usually give any treatments at the first visit.

You'll receive a written after-visit summary at the end of the appointment, and we'll share a summary with your child's referring physician.

The care team will let you know when to schedule a follow-up appointment.

Please contact your child's care manager if you have questions after your appointment. We are here to provide you and your family with the support and information you need every step of the way.