Woman holding a tissue to a boys' nose to stop it from bleeding.

von Willebrand Disease in Children

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All kids get bumps, scrapes and bruises. But when your child’s bleeding seems too heavy or won’t stop, you may wonder what’s wrong.

This kind of bleeding can be a sign of a blood disorder called von Willebrand disease (VWD). It most often develops when parents pass down genetic changes (mutations) to their child. We know it can be unsettling to hear your child’s bleeding might be caused by a genetic disorder. But it’s important to understand children’s genetic issues don’t happen because of something you or your partner did. It’s baked into their DNA.

Our pediatric experts are here to ease your fears and get you the answers you need, so we can treat your child quickly. We’ll work with you to design a personalized treatment plan to manage your child’s symptoms. With treatment, your child can focus on what kids do best — being kids. And you can take a deep breath knowing your child is in the most capable hands.

Why Choose Us for von Willebrand Disease in Children Care?

Specialized knowledge:

Our board-certified pediatric providers have years of experience in treating blood disorders in children. We use this expertise to accurately diagnose von Willebrand disease and create an individualized treatment plan that will keep your child as healthy as possible.

Comprehensive treatment:

Our team of pediatric experts focus on all your child’s healthcare needs. In addition to medical treatment, your child has access to pediatric physical therapy and counseling so they can feel their best and cope with their diagnosis. And our experts will help them transition easily from pediatric to adult care when the time comes. Meet our team.

National recognition:

Cleveland Clinic Children’s is a trusted healthcare leader. We’re recognized through the U.S. for our expertise and care.

Virtual visits:

We know it can be hard sometimes to get a child dressed and into the car, especially if they don’t feel well. Our virtual visits give you the option to have some appointments from home using an internet connection and a smartphone, tablet or computer.

Diagnosing von Willebrand Disease in Children

Von Willebrand disease affects how your child’s body forms blood clots. If they have this condition, it means a blood protein called von Willebrand factor (VWF) doesn’t work as it should or that your child doesn’t have enough of it.

It shows up as heavy bleeding, bleeding that won’t stop, frequent nosebleeds and bruising or even blood in their pee or poop.

Meet Our von Willebrand Disease in Children Team

When you come to Cleveland Clinic Children’s, you and your child will work with a team of experienced pediatric healthcare providers from different specialties. These providers will listen to your concerns and give your child personalized care that matches their unique needs. Their team could include:

Pediatric hematologists.
Pediatric pathologists.
Pediatric nurse practitioners.
Pediatric physician assistants.
Child psychologists.
Child life specialists.
Social workers.

What to expect at your first visit

Your first visit starts with a conversation. Our providers will talk with you, answer questions and help you better understand exactly what von Willebrand disease is. We’ll explain the different types of this condition and what we’re looking for in a diagnosis.

There are three types of von Willebrand disease.

Type 1 VWD: This one is the most common. If your child has this, it means their VWF levels are lower than what’s typical. Type 1 VWD may not cause any symptoms or cause only mild symptoms.
Type 2 VWD: In Type 2, your child has VWF in their blood, but the protein doesn’t work like should. Type 2 VWD includes four subtypes that affect blood in different ways.
Type 3 VWD: Type 3 is the rarest type and causes the most severe symptoms. If your child has Type 3 VWD, they have little or no VWF in their blood.

We’ll also examine your child and talk with you about their symptoms. We’ll want to know if there’s anyone else in your family who has von Willebrand disease or another blood disorder.

Next, we’ll do testing to check your child’s levels of different blood proteins, including VWF and factor VIII (a protein associated with bleeding). We may also check to see how well their platelets stick together to form blood clots (platelet aggregation test). We use what we learn from these tests to determine the type of VWD they have. Other tests could include:

Complete blood count (CBC) test to measure levels of platelets, red blood cells and white blood cells.
Fibrinogen test to check levels of fibrinogen, a protein that helps blood clot.
Prothrombin time (PT) test to see how quickly their blood clots.
Partial thromboplastin time (PTT) test to see how quickly their blood clots.

Providers Who Treat von Willebrand Disease in Children

Locations

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Treating von Willebrand Disease in Children

Once we confirm the VWD type, we’ll work with you to create a treatment plan for managing your child’s condition and controlling their symptoms. If they have Type 1 or Type 2 VWD, they may only need treatment if they’re injured or need surgery. If they have Type 3, they may need regular lifelong treatment to manage their bleeding.

We treat von Willebrand disease in children with a range of medications. These drugs can help increase the amount of VWF protein in your child’s blood or help it work more effectively. Depending on their symptoms and VWD type, your child may have:

Factor infusions: We’ll use a flexible tube (catheter) to inject VWF into your child’s blood.
Oral medications: Our providers might recommend anti-fibrinolytic medications during times of bleeding or in preparation for surgery.
Desmopressin: Our providers may recommend the hormone desmopressin to help your child maintain a steady level of VWF in their blood during a bleeding episode or before surgery.

Complications of von Willebrand Disease in Children

Treatment helps many children with VWD. But some kids develop complications like:

Anemia.
Joint effusion (swollen joints).
Hemarthrosis (joint bleeding).
Joint pain.

When complications like these crop up, we’ll work with you to help your child feel better. We may recommend lifestyle changes, like limiting contact sports, to reduce your child’s risk of complications and keep them active and healthy.

Taking the Next Step

When you learn that your child could have a blood disorder like von Willebrand disease, your mind may jump to what their life will look like going forward. Cleveland Clinic Children’s providers are here to make sure you have answers to this question — and the information and resources you need to keep your child as healthy as possible for the long term. We’re here with compassionate, personalized treatment and support as your child grows so they know how to manage this condition into adulthood.