Vasculitis in Children

Everyone’s immune system fights off outside invaders like bacteria, fungi, viruses and more. But sometimes, your immune system can get confused. When your child has vasculitis, it means their body is attacking its own blood vessels by mistake. This may cause swelling (inflammation), vision problems, headaches, trouble breathing and many other symptoms. It depends on where the inflammation happens.

Vasculitis can happen in any size blood vessel — large, medium or small:

• Large vessel vasculitis, affecting your child’s aorta and its large branches in their heart, causes Takayasu arteritis.
• Vasculitis in medium vessels (polyarteritis nodosa and Kawasaki disease) may affect your child’s kidneys, blood pressure control, bowels, brain or heart.
• Vasculitis also has different ways of affecting the smallest vessels (capillaries), including the conditions known as cutaneous leukocytoclastic vasculitis and Henoch-Schönlein purpura (HSP).

Kawasaki disease and HSP are the most common types of vasculitis in children. But no matter the type of pediatric vasculitis and the blood vessel size, inflammation can mess up blood flow with clots and blockages. These vessels can also leak or rupture, causing swelling, rashes and more vasculitis symptoms.

What to expect at your child’s first appointment

From your child’s first visit, we’ll start trying to figure out if vasculitis is causing their symptoms. And, if so, what kind of vasculitis it is.

Knowing your child’s story will help us do this. So, we’ll ask you a lot of questions about their health and how they’ve been feeling. We’ll also want to know about your family medical history. Our providers will give your child a physical exam to check their current health and to look for any visible vasculitis symptoms they may have when they come to see us.

Testing for vasculitis in children

At this appointment or future ones, we’ll also do some testing. This might include imaging tests like:

• X-rays
• CT scans
• MRIs
• Ultrasounds

We might even do an angiogram to check different organs and find any problems with your child’s blood vessels — like blockages.

We’ll also get samples of their blood and urine (pee) to look for anything unusual like a low red blood cell count (anemia), high numbers of white blood cells (which could signal infection), high platelet count, or signs of kidney or liver problems.  We also do these to check for signs of other conditions that have similar symptoms.

And, in some cases, we might need to do a biopsy of easy-to-reach tissues or organs that are involved in your child’s illness.

Meet Our Vasculitis in Children Care Team

Pinpointing vasculitis in children can be challenging because its symptoms often look like other, more common pediatric conditions. That’s why it’s important to work with healthcare providers who are familiar with making this diagnosis and treating children with vasculitis.

When you bring your child to Cleveland Clinic Children’s for pediatric vasculitis diagnosis and treatment, they’ll see a pediatric rheumatology physician and possibly many other providers from different specialties. Their team could include:

• Pediatric rheumatologists
• Pediatric nephrologists
• Pediatric pulmonologists
• Pediatric cardiologists
• Pediatric gastroenterologists
• Pediatric ophthalmologists
• Pediatric neurologists
• Pediatric otolaryngologists
• Pediatric radiologists
• Child life specialists

This expert team of providers will work together to confirm a pediatric vasculitis diagnosis and craft a personalized treatment plan for your child.

Once we confirm your child has pediatric vasculitis, we’ll sit down with you to go over what we’ve learned during testing and what you and your child can expect next. We want to be sure we answer all your questions about their treatment plan and how it’ll help your child, now and into the future.

Treatment for vasculitis in children may be long-term if it turns out to be chronic (constant). We make sure all your child’s vasculitis treatments are tailored to their specific needs and health — and what kind of vasculitis they have.

Medications

Our main goal is to stop your child’s inflammation, get their vasculitis under control and keep it that way for as long as we can. In most cases, we’ll use medications to stop or slow down (suppress) your child’s overactive immune system. These medications could include:

• Corticosteroids
• Dapsone
• Azathioprine
• Mycophenolate mofetil
• Rituximab
• Infliximab
• Tocilizumab
• Cyclophosphamide

Ongoing vasculitis care in children

Vasculitis in children requires lifelong care and checkups with their trusted care team. But don’t worry if you don’t live near a Cleveland Clinic hospital, health center or medical office.

We can work with your family to help your child to get much of their treatment near your home to save you time and ease the stress of traveling. After your child’s first few visits, we can partner with pediatric providers in your community to have them deliver as much of your child’s vasculitis care as possible. Then, your child will only need to visit Cleveland Clinic Children’s once or twice a year for checkups with their care team — unless they have treatment complications. We also can provide virtual check-ins with your child’s care team when needed.

As your child gets older, you’ll still be able to count on Cleveland Clinic Children’s to help them manage their vasculitis. Starting in adolescence, we’ll help them get used to taking their own daily vasculitis medications and talking with their healthcare providers about their treatments.

And, when the time is right, we’ll introduce your child to our adult vasculitis care team. Their pediatric providers will work with this new team to make sure all details are covered so your child can have a seamless transition to adult care at Cleveland Clinic.

Taking the Next Step

Pediatric vasculitis can change your child’s life. And it can make you and your child worry about their future. We’re here to help ease your fears and get your child the personalized treatment they need so they can feel more like themselves again. While vasculitis in children is rare, you can feel confident knowing Cleveland Clinic Children’s has helped hundreds of kids feel better — and we can help your child, too.