Langerhans cell histiocytosis (LCH): Working to change pediatric cancer outcomes, one patient at a time

If your child has Langerhans cell histiocytosis, UW Health Kids Cancer Care experts — members of Wisconsin's only comprehensive cancer center as designated by the National Cancer Institute — are ready to provide world-class care.
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Overview

About Langerhans cell histiocytosis

Langerhans cell histiocytosis (LCH) is a rare disorder where the body makes too many dendritic cells. Dendritic cells are a form of white blood cells. These cells play a role in the body’s immune system. LCH most commonly affects the skin and bones but can involve any organ in the body, including lymph nodes, lungs, liver, spleen, bone marrow or brain.

Symptoms and diagnosis

Signs and symptoms

Symptoms of LCH can vary depending on the part of the body that is affected. Some common symptoms include:

  • Pain in the stomach or pelvis

  • Lumps or lesions on the skull, upper or lower limbs, hands or feet, ribs, pelvis and spine 

  • Skin issues, including a skin rash or cradle cap (a scalp rash often in infants)

  • Ear pain or recurring ear infections

  • Tiredness

  • Fever or sweats

  • Hair loss

  • Yellow skin

  • Vomiting and diarrhea

  • Blood in the stool

  • Enlarged liver or spleen

  • Increased thirst

  • Rapid weight change

  • Problems breathing or shortness of breath

  • Loss of hearing

  • Blurred or loss of vision

  • Swollen or bleeding gums

  • Swollen lymph nodes

Treatment

Treatment of Langerhans cell histiocytosis

Children with LCH are either considered low-risk or high-risk based on the level of the disease and which body parts are affected.

Low-risk LCH involves the skin, bones, lymph nodes and brain. It may also involve multiple organs, but will generally not affect liver, bone marrow or spleen. Some children with low-risk LCH may improve without therapy. If just a single bone is affected, surgery is usually the first step. The surgery is used to confirm the diagnosis and may remove the dendritic-cell growth. Doctors watch your child carefully afterward to check for a possible return of LCH.

High-risk LCH involves multiple organs including the liver, bone marrow or spleen. For children with high-risk LCH, the best treatment is chemotherapy that lasts about a year. Chemotherapy are drugs that kill cancer. 

Fighting pediatric cancer and blood disorders

Our UW Health Kids Cancer Care specialists offer the most advanced treatment options. Our pediatric cancer and blood disorder experts are national research leaders. We test new therapies and continue to work on therapies for pediatric cancer and blood disorders. For many children with rare or hard-to-treat conditions, clinical trials provide new options.

Search our clinical trials

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UW Health Kids

Our pediatric experts have served the special needs of children for more than 100 years. We focus on each child’s unique needs and offer social and emotional support to help you and your child face even the most complex condition. Our long history includes the creation of medical advances that save lives around the world. Together, we get your child back to health and enjoying being a kid.

Locations

Care for your child

Receiving care from the UW Health Kids hematology, oncology and bone marrow transplant program at American Family Children’s Hospital means you have access to the knowledge and skills of many medical and support specialists for your child’s complex health diagnosis like cancer.

  • American Family Children's Hospital - Pediatric Hematology and Oncology
    • 1675 Highland Ave. / Madison, WI
    • (608) 263-6420
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  • American Family Children's Hospital - Pediatric Bone Marrow Transplant
    • 1675 Highland Ave. / Madison, WI
    • (608) 263-6420
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Meet our team

An experienced team providing your child with the care they deserve

Your child’s care is our top priority and we understand the unique needs they have.

Your child’s team will include:

  • Oncologists (cancer doctors)

  • Hematologists (blood disease doctors)

  • Nurse practitioners

  • Child Life specialists

  • Pain management specialists

  • Physical, occupational and speech therapists

  • Radiologists and radiation technologists

  • Social workers

  • Surgeons

UW Health Kids oncologists are dedicated to diagnosing and treating all infants, children and adolescents with cancer, including rare cancers like Langerhans cell histiocytosis.

Our pediatric oncologists are part of the UW Carbone Cancer Center which is a National Cancer Institute-designated Comprehensive Cancer Center. This designation means that the doctors taking care of your child are experts in cancer treatment, research and education. 

Pediatric hematology and oncology
Orthopedic surgery

Patient and support services

You’re never alone

There are services available at both American Family Children’s Hospital and in the community to help patients and their families through every step of their journey.

Child Life specialists help your child and family cope with any fears and anxieties, and the American Family Children's Hospital patient and family visitor guide features information about:

  • Health psychology

  • Hero beads

  • Hospital school

  • Positive Image Center

  • Spiritual care services

  • Tyler's Place (sibling child care)

Additional resources

We care for your child as if they are our own

With our expertise comes compassion. Our team considers you and your child part of our family. We will be by your side every step of the way. From diagnosis through treatment and into adulthood, we will care for your child as if they are our own.

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