Hemophilia is diagnosed at an average age of 9 months and almost always by age 2. If your child has heavy bleeding that can't be stopped after an injury, call 911 or your local emergency number or go to an emergency room.
If your child's symptoms are less severe — such as bruising that seems excessive after minor injuries — call your family doctor or your child's pediatrician. In some cases when you call to set up your appointment, you may be referred to a doctor who specializes in bleeding disorders (hematologist) or to a hemophilia treatment center.
Comprehensive hemophilia treatment centers
Centers that specialize in the diagnosis, evaluation and treatment of hemophilia and other bleeding disorders belong to a network called comprehensive hemophilia treatment centers. Such centers, which may also be called bleeding disorder centers, are staffed with doctors, nurses, social workers and physical therapists who provide specialized care for people with bleeding disorders. Visiting a hemophilia treatment center regularly can improve quality of life and can reduce hospitalizations from bleeding complications for people with bleeding disorders. Ask your doctor if there is a comprehensive hemophilia treatment center available to you.
No matter what type of doctor you initially see, here's some information to help you prepare for the appointment.
What you can do
- List any symptoms your child has been experiencing and for how long. It will help your doctor to know details such as the types of injuries that have caused significant bruising or other unusual symptoms.
- Write down your child's key medical information, including other medical problems for which your child is being treated and any medications your child is currently taking. Also note whether anyone else in your family has been diagnosed with a bleeding disorder.
- Write down questions to ask your child's doctor.
For hemophilia, some basic questions:
- What's the most likely cause of my child's signs and symptoms?
- Are there any other possible causes?
- What kinds of tests does my child need? Do these tests require any special preparation?
- What treatment approach do you recommend?
- What activity restrictions will my child need to follow?
- What additional steps can I take to ensure my child's safety?
- What can I do to help my child live as normally as possible?
- What does his or her teachers need to know about hemophilia?
- How will you monitor my child's health over time?
- What is my child's risk of long-term complications?
- Do you recommend that our family meet with a genetic counselor?
In addition to the questions that you've prepared to ask your child's doctor, don't hesitate to ask any additional questions that occur to you during your appointment.
What to expect from your child's doctor
Your child's doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to talk about in-depth. Your doctor may ask:
- What are your child's symptoms?
- When did you first begin noticing these symptoms?
- Has your child complained of pain or warmth around his or her joints?
- Have you noticed any unusual or heavy bleeding, such as nosebleeds or prolonged bleeding from a cut?
- Have you noticed blood in your child's urine or stool?
- Has your child undergone any surgeries, and, if so, did the surgeon feel there was excessive bleeding?
- What else concerns you?
- Has anyone in your family been diagnosed with a bleeding disorder?
- Are you planning to have more children?
What you can do in the meantime
While you wait for your appointment, check with your family members to find out if any relatives have been diagnosed with hemophilia or have had undiagnosed problems with excessive bleeding. Share this information with your child's doctor when you meet.
Aug. 31, 2011
- Hoots KW, et al. Clinical manifestations and diagnosis of hemophilia. http://www.uptodate.com/home/index.html. Accessed June 25, 2011.
- Hemophilia. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merckmanuals.com/professional/sec11/ch136/ch136c.html#sec11-ch136-ch136d-524. Accessed June 25, 2011.
- Hemophilia. National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/dci/Diseases/hemophilia/hemophilia_all.html. Accessed June 25, 2011.
- Hemophilia facts. U.S. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/hemophilia/facts.html. Accessed June 25, 2011.
- Factor XI deficiency. National Hemophilia Foundation. http://www.hemophilia.org/NHFWeb/MainPgs/MainNHF.aspx?menuid=54&contentid=54. Accessed June 27, 2011.
- Rodriguez NI, et al. Advances in hemophilia: Experimental aspects and therapy. Hematology and Oncology Clinics of North America. 2010; 24:181.
- Care at comprehensive treatment centers can save lives. U.S. Centers for Disease Control and Prevention. http://www.cdc.gov/Features/ComprehensiveCare. Accessed June 25, 2011.