Overview
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
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
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 can 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 could 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 for about a year. Chemotherapy are drugs that kill cancer.
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.
Locations
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.
Meet our team
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.
Patient and support services
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)
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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