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Looking for a pediatric specialty clinic? Cook Children's has more than 60 locations across North Texas, because even when your child's diagnosis is complicated, finding the right care should be simple.
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Whether your child is diagnosed with a well-known condition or a rare one, you and your family deserve only the best care! That is why, at Cook Children's, we have created a brave army of doctors, nurses, research analysts and pharmacists who are dedicated to care for your child, even when the diagnosis is something as uncommon as Langerhans cell histiocytosis (LCH).
The Cook Children's Histiocytic Disorders Program is experienced in treating a wide range of histiocytic disorders including Langerhans cell histiocytosis (LCH) and hemophagocytic lymphohistiocytosis (HLH) and offers the most comprehensive and highest level of care in North Texas.
Our expertise and collaborations with ongoing clinical trials and innovative approaches rely on a team of specialists from Hematology and Oncology as well as Interventional Radiology, Orthopedics, Radiology, Endocrinology and Neurosurgery, when appropriate.
Our multidisciplinary clinical team remains committed to providing the highest level of care for this rare group of disorders. Accordingly we have successfully partnered with Texas Children's Hospital and other leading institutions in offering multiple treatment and clinical trial options to patients with newly diagnosed LCH. Because of our expertise, we also serve as a referral center for patients outside of our region.
On the other hand, for patients who have sustained relapse, we have embarked upon a gene testing based approach to identify patients with BRAF mutation, a condition that can be targeted by non- chemotherapeutic approaches.
Last but not least, a select group of patients will benefit from detailed genomic testing of the entire tumor tissue to identify specific mutations that can be targeted by particular drugs.
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.
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.
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.
Under the leadership of Anish Ray, M.D., Cook Children's Hematology and Oncology Center has developed a comprehensive approach to caring for a patient suspected of having HLH. This team includes members from Oncology as well as those from Infectious Disease, Rheumatology, Hospitalist service and ICU. This team meets frequently, reviewing current literature and each patient case.
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.