Patient-centered care:
We focus on your child’s specific needs when crafting a highly personalized treatment plan so they can have the best results.
Locations:
Your child’s immune system usually fights off invaders like bacteria and viruses. But sometimes, it gets confused. And it attacks their body instead.
When this happens, they may have a rare autoimmune condition called hemophagocytic lymphohistiocytosis (HLH). And it can cause serious (even life-threatening) problems. That’s why getting care right away from pediatric healthcare providers experienced in treating HLH is important.
Cleveland Clinic Children’s team of highly skilled specialists know how to diagnose and treat HLH. And they’ll guide your family through the decisions you’ll need to make with compassion and understanding.
We focus on your child’s specific needs when crafting a highly personalized treatment plan so they can have the best results.
From gene therapy to the latest transplant conditioning treatments, our research lets us give your child the newest and most comprehensive care.
Cleveland Clinic Children’s is part of the North American Immuno-Hematology Clinical and Research (NICER) Consortium. This group works together to research many different immune conditions, including HLH.
Our team-based approach to care means your child will see pediatric providers from different specialties — all chosen based on their unique diagnosis and needs. This team works together to build your child’s personalized treatment plan and keeps a close eye on their progress. Meet our team.
Not all appointments need to be in person. We also offer virtual visits so you and your child can meet with their pediatric providers using a smartphone, tablet or computer. All you need is an internet connection — and a comfy place to sit.
Cleveland Clinic Children’s is a trusted healthcare leader. We’re recognized throughout the U.S. for our expertise and care.
When your child has hemophagocytic lymphohistiocytosis, it means their immune system is overreacting. Instead of defending your child from things like bacteria, viruses and fungi, their body starts attacking itself.
There are two types of pediatric hemophagocytic lymphohistocytosis:
We often find primary HLH in early childhood, usually among toddlers. Secondary HLH is more often diagnosed in older children, adolescents and young adults.
The most common symptoms of HLH are a fever that lasts for many days, a rash and an enlarged liver, spleen or lymph nodes. Your child might also be irritable, have headaches, feel weak or dizzy and have pale skin or jaundice (yellow skin).
Other health conditions they might have with HLH include:
Life-threatening symptoms that need emergency treatment include trouble breathing, seizures, loss of consciousness or coma.
At your child’s first appointment, their provider will take some time getting to know them and you. They’ll ask questions like:
Next, your child will have a physical exam to look for noticeable signs of hemophagocytic lymphohistiocytosis. Their provider may also order some tests to help confirm the diagnosis and look for some of the less visible signs of HLH.
Many signs of HLH will show up in your child’s blood cells. So, we’ll do tests to see what’s going on in your child’s blood. Your child may have:
We may also do genetic testing to confirm whether your child has HLH.
Hearing your child has a rare immune condition like hemophagocytic lymphohistiocytosis can be overwhelming. There are so many things to think about. So much to digest. Feeling confident that you’re working with a team you trust completely to give your child the best care is an important first step. That’s why we encourage second opinions.
Our skilled, experienced pediatric providers will spend time with you and your child to help you better understand HLH. They’ll also talk with you about what they feel are the best treatment options for your child. And because HLH responds best to treatment if caught early, we always try to meet with you and your child as soon as possible. Getting a second opinion can help you feel in control of your child’s care and give you peace of mind knowing they’re in the most capable hands.
When your child comes to Cleveland Clinic Children’s, they’ll have an expert care team of pediatric providers from different specialties — all working together to make sure they get the most personalized care. Their team may include:
We offer treatment for hemophagocytic lymphohistiocytosis at the following location in Northeast Ohio.
Once we’re sure your child has HLH, we’ll start building a personalized treatment plan for them. We base this plan on your child’s age, overall health, test results, symptoms and if they have primary or secondary HLH. We also consider the cause of their HLH — a genetic mutation or another underlying condition, like an autoimmune condition, cancer or Epstein-Barr virus.
If your child has secondary HLH, we’ll treat the condition causing it. For example, we may use chemotherapy to treat cancer. By treating the condition causing secondary HLH, we may be able to stop it, but it’s important to know that HLH can sometimes come back (recur).
If your child has primary HLH, they’ll need an allogenic bone marrow transplant (BMT) from a related or unrelated donor. But first, we’ll need to calm the inflammation caused by their hyper-inflamed immune system. Your child’s provider may use a combination of steroids and chemotherapy to do this. Or we may use monoclonal antibody therapy using a drug called emapalumab (Gamifant®).
Depending on the results of your child’s blood tests, we may treat primary or secondary HLH with a blood transfusion to increase their blood cell levels. Other treatments we offer for both primary and secondary HLH include:
Some medications can help manage or stop HLH symptoms or cell growth. Immunosuppressants can make your child’s immune system less active. Antibiotics and antivirals can treat or prevent infections.
If we use immunosuppressants or antibody therapy to treat your child’s HLH, we’ll check on them regularly to make sure their symptoms don’t come back. If they do, we may recommend an allogeneic stem cell transplant.
If your child hasn’t responded well to other treatments, we may recommend an allogeneic stem cell transplant. Stem cells are in your child’s bone marrow and make new blood cells. In this type of transplant, your child will get new stem cells from a donor to replace their unhealthy ones.
After a transplant, your child will take immunosuppressant medications, so their body doesn’t reject the new stem cells. While they’ll likely get better physically in a few months, it can take up to two years for their immune system to fully recover. We’ll keep a close eye on your child during this time. And we’ll show you how best to care for them after they go home.
We understand that deciding for your child to have a transplant is a big decision. We’ll walk you through the process to help you feel confident about next steps.
After treatment, your child will have regular follow-up visits and tests with their pediatric care team. Their providers will keep an eye on their test results, symptoms and general health to make sure HLH hasn’t returned. And if it does, they’ll start treatment quickly.
Coping with a serious health condition, like HLH, can be stressful and overwhelming for your child and for you. If needed, we may recommend speaking with mental health professionals like child psychologists, psychologists or social workers.
Having a rare immune system condition like hemophagocytic lymphohistiocytosis isn’t the life you planned for your child. But with early diagnosis and treatment by specialists experienced with this condition, your child may be able to get back to living a full, active life. Cleveland Clinic Children’s pediatric team of specialists can provide the treatment and support your child and family need to understand and manage their HLH. We’re here to help your child get the best treatment results so they can get back to being a kid.
Getting an appointment with Cleveland Clinic’s Children’s hemophagocytic lymphohistiocytosis experts is easy. We’ll help your child get care.
Manage your Cleveland Clinic account. Find billing information and financial assistance, plus FAQs.
Securely access your personal health information at any time, day or night.
Health LibraryFind answers to your health questions from experts you can trust. It's like having a friend who's a doctor.