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Histiocytosis is a broad description for a rare group of disorders driven by abnormal increase in the number of histiocytes, a type of white blood cell. The two important types of histiocytoses are: Langerhans cell histiocytosis (LCH) and Hemophagocytic lymphohistiocytosis (HLH). While these disorders are rare, Cook Children’s has created a team of doctors, nurses, research analysts, and pharmacists who are dedicated to the care of your child.
Our Histiocytic Disorders team is experienced in treating a wide range of histocytic disorders like LCH and HLH. In addition to being proud members of the Histocytic Society, we offer the most comprehensive and highest level of care in North Texas. Due to the expertise of our team in this area, we serve as a referral center for patients both inside and outside our region.
Our expertise and collaborations with ongoing clinical trials and innovative approaches rely on a team of specialists form Hematology and Oncology, as well as Interventional Radiology, Orthopedics, Radiology, Endocrinology, and Neurosurgery.
Our multidisciplinary clinical team remains committed to providing the highest level of care for this rare group of disorders. We meet weekly to review our newly diagnosed patients and create individualized treatment plans and review clinical trial options. To support our patient's psychosocial needs we partner with our Adolescent Young Adult (AYA) and Integrated Oncology teams. We also meet monthly to review our patients, their treatment plans, and clinical trial options, where we join forces with leading Children's hospitals and specialists nationwide. We collaborate with Texas Children's Hospital to offer the benefit of participating in studies. Currently open to enrollment is the LCH Reason Study, which compares previously used vinblastine/prednisone to a single therapy option with cytarabine.
It is possible that some patients may face a sustained relapse. If this occurs, we rely on gene testing to identify patients with genetic changes, such as BRAF, which may be treated with a non-chemotherapeutic approach. Our team partners with Foundation One Medicine to perform detailed genomic testing which identifies specific components of your child's disorder that can be targeted by individual medications. Most importantly, we partner with parents and caregivers to offer family centered care and meet your family's specific needs, while remaining dedicated to offering exceptional care to your child and your family.
Anish Ray, M.D., Cook Children's Hematology and Oncology Center, director of the LCH program, has developed a comprehensive approach to caring for a patient suspected to have LCH. Cook Children's is committed to caring for all patients suspected of having this condition.
Langerhans cell histiocytosis is a rare type of cancer that can endanger and invade one or more organ systems in our body when a child has too many of a type of white blood cell, called Langerhans cells.
Among some patients, mutations of the BRAF, MAP2K1, RAS and ARAF genes are responsible for driving the disease. Accordingly, it may be possible to target these mutations as a means to treat these patients.
The signs and symptoms depend on what part of the body is affected. For example, patients may present with persistent pain or swelling, minor trauma leading to fracture, loosening of teeth, chronic ear infections, recurrent skin rash, jaundice, recurrent diarrhea or vomiting, unexplained weight loss, frequency of urination, fatigue and weakness among other symptoms.
Obtaining tissue or bone is imperative to diagnose LCH. Thereafter, further testing can involve identification of a driver genetic mutation. Recently PET CT scan has been made an integral part of the workup.
Treatment options include both chemotherapeutic and immunosuppressive agents (using drugs such as cytarabine, vinblastine, prednisone) as well as targeted therapy with trametinib, dabrafenib and cobimetinib. Sometimes surgical removal of a single bone lesion, also known as curettage, is enough however some patients benefit from simple observation.
When successfully and effectively treated, a vast majority of patients can look forward to a long and disease free life.
HLH or hemophagocytic lymphohistiocytosis is a rare disorder of the immune system associated with uncontrolled inflammation that can quickly escalate.
There are two forms: The primary or familial form is inherited while the term secondary HLH denotes symptoms of HLH secondary to other inciting factors such as infection or joint pain or swelling (arthritis) among other non-inherited causes.
The signs and symptoms can be variable and nonspecific leading to a delay in diagnosis - some patients may present with prolonged fever, rash, liver dysfunction, enlarged spleen/lymph nodes, abnormal blood count, shortness of breath and even seizures.
While there is not any one particular lab, HLH is diagnosed with a battery of tests that include complete blood count (CBC) test, liver function tests, markers of the immune system and bone marrow aspirate and biopsy when appropriate. Delay in appropriate diagnosis can result in significant complications, infections and even death. Recently PET CT scan has been made an integral part of the workup.
Adequate treatment is crucial given that this is a potentially, aggressive and life-threatening disease. Treatment can include steroids, chemotherapy (etoposide), targeted therapy (emapalumab) and even bone marrow transplant.
When successfully and adequately treated, majority of patients can look forward to a long and disease free life.
Have questions or need to make a referral? We can help. If you would like to speak to one of our staff, please call our offices at 682-885-4007.