Bleeding Disorders and Thrombosis
If your child has a bleeding disorder, you want a team of experienced professionals to help you and your child manage the disorder. The disorders are caused by problems with your child’s blood clotting process. Some bleeding disorders are present from birth and are inherited. Others develop because of illnesses or use of certain drugs and treatments. They can be mild or more serious, requiring long-term attention.
At The Gill Center at Children's Health℠, we specialize in treating several types of bleeding disorders in children and teens, including:
- Hemophilia: a bleeding disorder that is usually inherited. Children with hemophilia have little or no clotting factor VIII (Hemophilia A) or clotting factor IX (Hemophilia B).
- von Willebrand disease: a bleeding disorder that is almost always inherited. Children with von Willebrand disease either have low levels of von Willebrand clotting factor or the clotting factor does not work as it should.
Thrombosis is a condition in which a blood clot forms in a blood vessel (vein or artery). If left untreated, it can block the flow of blood to the heart, brain or lungs, which can cause a medical emergency, such as a stroke. The two most common types of thrombosis in children are:
- Thrombophilia: an inherited blood disorder. Children with thrombophilia develop blood clots that spontaneously form in blood vessels.
- Deep vein thrombosis (DVT): a condition in which a blood clot forms in a blood vessel as a result of poor blood flow. Children who are bedridden for long periods of time or who have certain chronic conditions such as cancer, heart disease or lung disease are at risk for DVT.
We also treat many rare disorders such as Glanzmann’s thrombasthenia and bleeding associated with Ehlers-Danlos syndrome.
Parents should watch for signs of bleeding disorders in their children, especially if a bleeding disorder runs in the child’s family. Bleeding disorder symptoms may include:
- Heavy bleeding
- Excessive bruising
- Heavy periods in girls who are menstruating
- Frequent nosebleeds
Many children with thrombosis have no symptoms, but if a child is at risk because of family history or a chronic disease, parents should watch for
- Redness and warmth of the skin
Tests and Diagnosis
If your child has a bleeding disorder or thrombosis, it’s important to diagnose the disorder promptly and accurately. Some children have more risk for a bleeding disorder, thrombosis or stroke than other children. Many of the disorders that affect children are rare and inherited, and some parents may want to know if their child has a bleeding disorder while the child still is in the womb. This is possible with some prenatal testing methods.
Diagnosis of Bleeding Disorders
If your child has symptoms of a bleeding disorder, your child’s doctor likely will conduct a thorough physical exam and ask about your child’s medical history and your family’s history of similar disorders. Doctors also might order blood tests.
Blood Tests Can Determine:
- How long it takes your child’s blood to clot
- If your child’s blood is missing any specific clotting factors
- If your child’s blood has low levels of specific clotting factors
Diagnosis of Thrombosis
It is important to diagnose thrombosis promptly before it leads to complications such as stroke. Your child’s doctor may use a combination of tests:
- History and physical exam
- Blood tests to look for inherited clotting disorders or a substance called D dimer, which indicates deep vein thrombosis
- Ultrasound: a noninvasive test that uses sound waves to take pictures of blood flowing through the arteries and veins
- CT scan: a noninvasive test that uses X-rays to create cross-sectional pictures of your child’s organs and tissues
- MRI: a noninvasive test that uses magnetic fields to produce images of your child’s organs and tissues
- Venography: a test that is done by injecting dye into a vein to make it visible on an X-ray
At The Gill Center, we work hard to diagnose bleeding disorders and thrombosis early, using genetic screening and counseling when appropriate, and helping to prevent possible problems or complications in our young patients who are at risk. We developed the first guidelines used for diagnosing stroke in children.
If your child has a bleeding disorder, he might need ongoing care and access to doctors who specialize in treating children with rare blood disorders. Children's Health Bleeding Disorders and Thrombosis Program at The Gill Center is one of only five comprehensive treatment programs for hemophilia and other bleeding disorders in Texas.
At The Gill Center, our doctors and nurses actively manage care for more than 175 children each year who have inherited and acquired bleeding disorders. Our program also focuses on the diagnosis and management of thrombosis.
Treatment of Bleeding Disorders
A child who has a bleeding disorder such as hemophilia or von Willebrand disease needs help controlling the bleeding disorder. Medications are designed to:
- Replace the clotting factor that is missing
- Stimulate the release of more clotting factor
- Prevent blood clots
- Control heavy bleeding
Advanced Bleeding Disorder Treatments
The Gill Center team has specialists who work together to manage your child’s bleeding disorder with the latest treatments available. Our hematologists, pharmacists and nurses cooperate to support you, your child, your family and other care providers to prevent bleeding complications during childhood.
Treatment of Thrombosis
Your child’s doctor will recommend treatment for thrombosis based on risk for complications. Most often, this includes use of medication.
- Anticoagulants: medications that thin the blood
- Thrombolytics: medications that dissolve blood clots
- Vena cava filter: a filter that is inserted into a vein called the vena cava to stop blood clots from traveling to the lungs
- Compression stockings: tight stockings that keep blood from pooling and clotting and also reduce swelling from blood clots
Advanced Thrombosis Treatments
A full-time pharmacist oversees the Gill Center’s anticoagulation service. The pharmacist keeps track of all patients who receive anticoagulants and helps to educate patients and families of patients who must use anticoagulation medication at home. The pharmacist also coordinates care for patients after their initial treatment, so they can follow up with our program and their physician back home.
Our Stroke Clinic convenes twice a month to manage the care of children who have strokes. Doctors from several pediatric specialties come together to plan these children’s care. Preventing stroke in children and diagnosing strokes early is a focus of our clinic. In 2008, our Stroke Clinic developed the first-ever guideline for diagnosing stroke in children. The guideline is now being used by other pediatric hospitals around the country.
Our director is nationally recognized for her research in preventing thrombosis in children who have hemophilia from the use of catheters. Because our mission is to make life better for children, we’ll work closely with you and your child who has a bleeding disorder, or risk for thrombosis or stroke, to make life better and prevent complications.
What are bleeding disorders?
Bleeding disorders are a group of conditions in which there is a problem with the body's blood clotting process; the inability of the blood to clot can lead to heavy bleeding.
What causes bleeding disorders?
Bleeding disorders are usually inherited, which means they are passed down from one generation to another.
What is hemophilia?
Hemophilia is a bleeding disorder in which a child has little or no clotting factor VIII (Hemophilia A) or clotting factor IX (Hemophilia B). Clotting factors are proteins in the blood that help the blood to clot.
What is von Willebrand disease?
Von Willebrand disease is a bleeding disorder in which a child either has low levels of a clotting factor known as of von Willebrand clotting factor, or the clotting factor does not work the way it should.
How are bleeding disorders treated?
There is currently no cure for bleeding disorders. They are treated using medications that are designed to help control bleeding.
What is thrombosis?
Thrombosis is a condition in which a blood clot forms in a blood vessel (vein or artery).
What causes thrombosis?
Thrombosis can either be inherited or develop as a result of poor blood flow due to immobility or certain chronic conditions.
How is thrombosis treated?
Thrombosis is treated using a combination of methods that may include medications, a vena cava filter (a filter to keep blood clots from traveling to the lungs) and compression stockings.
- Comprehensive Bleeding Disorders and Thrombosis Treatment Team consists of physicians, advanced practice nurse, nurse clinician, physical therapist, social worker, clinical research coordinator, and program assistant devoted to the specialized care of children with bleeding and clotting disorders.
- Comprehensive Bleeding Disorder Clinics are held most Wednesdays at the Dallas campus. We have quarterly clinics at the Plano campus nearby in Plano. Thrombosis patients and new patients needing evaluation for bleeding or clotting disorders can be seen on any day of the week
- Close affiliation with the Department of Pediatric Dentistry provides comprehensive and safe dental care for children with bleeding disorders and those on chronic anticoagulation
- Affiliation exists with UT Southwestern’s diagnostic hemostasis laboratory and the adult component of UT Southwestern’s hemophilia program
- We participate in a 340B Drug Pricing Program, a federal discount program available to designated Hemophilia Treatment Centers
- Outpatient management of anticoagulation therapy
- Development of multidisciplinary guidelines for treatment of acute stroke and participation in a comprehensive long-term follow-up clinic for children with stroke
- Community outreach:
- Nurse coordinators’ school visits and lectures to students and staff
- Education for community physicians and families with inherited thrombophilia about diagnosis, screening and prevention of thrombosis
- Education for community physicians about diagnosis and treatment of bleeding disorders
- Active participation and support of NHF and the local chapter, TexCen
- Participation in a yearly Education Day for Families
- Each summer, 25-40 patients of the Center for Cancer and Blood Disorders attend Camp Ailihpomeh, the week-long summer camp for children in Texas with hemophilia. In addition, members of our team have served as the camp director or co-director for many years.