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Hemophagocytic Lymphohistiocytosis

Nemours Center for Cancer and Blood Disorders in the Delaware Valley and Florida

Locations & Doctors Who Treat Hemophagocytic Lymphohistiocytosis

 
Delaware

Wilmington

Nemours/Alfred I. duPont Hospital for Children

1600 Rockland Road
Wilmington, DE 19803
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For Appointments: (800) 416-4441

Doctors Who Treat Hemophagocytic Lymphohistiocytosis at This Location

 
New Jersey

Voorhees

Nemours duPont Pediatrics, Voorhees

443 Laurel Oak Road
Therapy Services (Suite 200)
Pediatric Specialty Services (Suite 230)
Voorhees, NJ 08043
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For Appointments: (800) 416-4441

Hours: Fourth Friday each month; 9 a.m. to 4 p.m.
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Doctors Who Treat Hemophagocytic Lymphohistiocytosis at This Location

 
Pennsylvania

Philadelphia

Nemours duPont Pediatrics, Philadelphia

833 Chestnut St. E., Suite 300
Philadelphia, PA 19107
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For Appointments: (800) 416-4441

Hours: Monday–Friday: 8 a.m. to 5 p.m.
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Doctors Who Treat Hemophagocytic Lymphohistiocytosis at This Location


Lancaster

Nemours duPont Pediatrics, Lancaster

2128 Embassy Drive, Suite A
Lancaster, PA 17603
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For Appointments: (800) 416-4441

Hours: Hours vary; please call
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Doctors Who Treat Hemophagocytic Lymphohistiocytosis at This Location

 
Florida

Orlando

Nemours Children's Hospital, Orlando

13535 Nemours Parkway
Orlando, FL 32827
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For Appointments: (407) 650-7715

Doctors Who Treat Hemophagocytic Lymphohistiocytosis at This Location


Nemours Children's Specialty Care, Orlando

1717 S. Orange Ave.
Orlando, FL 32806
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For Appointments: (407) 650-7715

Hours: Monday–Friday, 8 a.m. to 5 p.m.
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Doctors Who Treat Hemophagocytic Lymphohistiocytosis at This Location

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Melbourne

Nemours Children's Specialty Care, Melbourne

1270 N. Wickham Road
Melbourne, FL 32935
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For Appointments: (407) 650-7715

Hours: Monday–Friday: 8 a.m. to 5 p.m.
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Doctors Who Treat Hemophagocytic Lymphohistiocytosis at This Location

To find out which providers serve this location, please call the main number above.

Jacksonville

Nemours Children's Specialty Care, Jacksonville

807 Children’s Way
Jacksonville, FL 32207
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For Appointments: (904) 697-3789

Hours: Monday–Friday, 8 a.m. to 5 p.m.
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Doctors Who Treat Hemophagocytic Lymphohistiocytosis at This Location


Pensacola

Nemours Children's Specialty Care, Pensacola

5153 N. Ninth Ave.
Pensacola, FL 32504
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For Appointments: (850) 505-4790

Hours: Monday–Friday, 8 a.m. to 5 p.m. (Central Time)
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Doctors Who Treat Hemophagocytic Lymphohistiocytosis at This Location

About Pediatric Hemophagocytic Lymphohistiocytosis

Brayton was diagnosed with hemophagocytic lymphohistiocytosis (HLH) when he was 4 months old.

Hemophagocytic Lymphohistiocytosis (or “HLH”) is a blood and immune system disorder that mainly affects infants and young children, but can occur at any age. HLH occurs when histiocytes and lymphocytes (two kinds of white blood cells that fight infection) cause the immune system to overreact and attack healthy tissue and organs, most often the bone marrow, liver and brain.

Hemophagocytic lymphohistiocytosis is very rare and its cause is still unknown. In many childhood cases, genetics play a role, but HLH can also result from infections, immune system diseases and cancer.

Our renowned hematologists, oncologists and researchers at the Nemours Center for Cancer and Blood Disorders work together to quickly and accurately diagnose and treat hemophagocytic lymphohistiocytosis and other immune system diseases in infants and children, including primary (also called “familial”) and secondary (also called “acquired”) forms of this disease.


Types of Childhood Hemophagocytic Lymphohistiocytosis We Treat

Primary Hemophagocytic Lymphohistiocytosis

Primary or familial hemophagocytic lymphohistiocytosis is an inherited immune system disease, which means it inhibits the body's natural defense system. Primary HLH represents 25 percent of the cases and is most often diagnosed in infants within the first 12 months of life (although there are cases of children being diagnosed much older).

Secondary Hemophagocytic Lymphohistiocytosis

Secondary (or “acquired/reactive”) hemophagocytic lymphohistiocytosis is associated with certain viruses, complications from juvenile idiopathic arthritis, rheumatologic disorders and cancer, and is diagnosed most often in childhood.

Diagnosing Hemophagocytic Lymphohistiocytosis in Children

Signs & Symptoms of Hemophagocytic Lymphohistiocytosis

Like most immune system diseases, symptoms of hemophagocytic lymphohistiocytosis in children vary, but can include:

  • persistent fever
  • rash
  • enlarged or inflamed liver and/or spleen
  • jaundice (yellowing of the skin and eyes)
  • difficulty breathing
  • digestive problems

Central nervous system symptoms such as seizures, weakness, vision problems and headaches can also occur. It’s important to diagnose pediatric HLH early and begin treatment right away for the best outcome.


Testing & Evaluations

If your child possibly has pediatric hemophagocytic lymphohistiocytosis, Nemours’ experienced hematology and oncology care team works together to appropriately and quickly diagnose and stage the immune system disease through a variety of tests and procedures, including:

  • thorough physical examination and medical history
  • blood tests
  • bone marrow aspiration and biopsy

Treating & Caring for Children With Hemophagocytic Lymphohistiocytosis

Your Child's Comprehensive Pediatric Hematology Care Team

If we discover hemophagocytic lymphohistiocytosis or other immune system diseases, our multidisciplinary (collaborative) team plans the most effective treatment personalized to your child’s needs.

In addition to an experienced, compassionate nurse coordinator (who provides your child and family support, education and care coordination), Nemours’ pediatric blood disorder and cancer teams include:

  • hematologists (blood disorder specialists)
  • oncologists (cancer specialists)
  • immunologists (autoimmune disorder specialists)
  • rheumatologists (specialists in rheumatic diseases)
  • neurologists (specialists in brain and spinal cord disorders)
  • pathologists (diagnose diseases by examining body tissues, fluids and organs)
  • geneticists (perform genetic counseling and testing)
  • interventional radiologists (perform image-guided minimally invasive procedures)
  • behavioral health specialists (psychologists and psychiatrists)
  • registered dietitians (nutrition specialists)
  • hematology nurses (registered nurses specializing in childhood blood disorders)

Your care team is here to provide your family with ongoing support and follow-up. We always include you in the entire process, because we truly believe in the healing power of families and that you know your child best.

Learn More About Nemours’ Pediatric Hematology Care Teams in Your Area »


Innovating Childhood Hemophagocytic Lymphohistiocytosis Treatment at Nemours

Treating pediatric hemophagocytic lymphohistiocytosis and other immune system diseases varies depending on the type, severity, your child’s age and overall health. Secondary (or “acquired”) HLH can sometimes resolve when the underlying condition causing it is treated, but that’s not always the case. Primary (or “familial”) HLH must be treated quickly.

Hemophagocytic lymphohistiocytosis can include one or more of the following:
  • chemotherapy (cancer-killing medications)
  • antibiotics (for infections that cause the condition)
  • steroid therapy (prednisone or cortisone to help fight inflammation)
  • immunotherapy (stimulating the immune system to destroy or reject tumors)
  • immunosuppressive therapy (to keep the immune system from attacking healthy cells)
  • targeted drug therapies (targets genetic abnormalities)
  • blood and bone marrow transplant (also called “BBMT,” “BMT” or “stem cell transplant”)
For your child’s overall health and wellness, we also prescribe:

Learn More About Pediatric Hematology Treatment at Nemours »

Additional Resources & Support for Families

 
Nemours Support Services

Dealing with a complex medical condition is difficult for your child and family. But you don’t have to go through it alone. Nemours provides an array of support services that begin on the very first day we meet, and continues throughout your journey because at Nemours, your child and family become part of our own. 

Our services include: 
  • patient and family education
  • social work
  • mental health counseling
  • Child Life services
  • creative therapy
  • support groups
 
Informative Articles & Videos for Parents From Nemours’ KidsHealth
 
Trusted National Resources for Hemophagocytic Lymphohistiocytosis

Histiocytosis Association: This global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders such as hemophagocytic lymphohistiocytosis while leading the search for a cure.

 
Blood & Bone Marrow Resources

Blood & Marrow Transplant Information Network: BMTinfonet.org provides information and support for patients and families before, during and after transplant.

The Bone Marrow Foundation: They offer information on financial assistance and resources to bone marrow/stem cell transplant patients and their families. 

Center for International Blood & Marrow Transplant Research (CIBMTR): The center disseminates information on blood and marrow transplant research.

National Marrow Donor Program: The site contains info about marrow and cord blood donation and transplantation.

National Bone Marrow Transplant Link: The organization helps patients, caregivers and families cope with the social and emotional challenges of bone marrow/stem cell transplantation, from diagnosis through survivorship. They provide information and personalized support services.

 
General Blood Disorder Information & Education

National Heart, Lung, and Blood Institute: The institute is part of the Department of Health and Human Services, and promotes the research, prevention and treatment of heart, lung and blood diseases.

National Institutes of Health: The institute provides a vast amount of information on diseases, treatments and research, including the informative site, Medline Plus.

Appointments & Referrals

Delaware, Pennsylvania & New Jersey

(800) 416-4441


Florida
Jacksonville Area

(904) 697-3789

Orlando Area

(407) 650-7715

Pensacola Area

(850) 505-4790

Learn About Our Locations »


International
Patients

+1 (302) 651-4993

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