Hemophilia is diagnosed at an average age of 9 months and almost always by age 2. You and your child may be referred to a doctor who specializes in blood disorders (hematologist).
What you can do
- Write down the symptoms your child has been experiencing, and for how long.
- Write down your child's key medical information, including other conditions.
- Make a list of all your child's medications, vitamins and supplements.
- Note whether anyone in your family has been diagnosed with a bleeding disorder.
Questions to ask your child's doctor
- What's the most likely cause of my child's signs and symptoms?
- What kinds of tests does my child need? Do they require any special preparation?
- What treatment 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?
- 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 doctor, don't hesitate to ask other questions during your appointment.
What to expect from your doctor
Your doctor is likely to ask you a number of questions. Being ready to answer them may make time to go over points you want to spend more time on. You may be asked:
Sept. 26, 2014
- What are your child's symptoms, and when did you first notice them?
- Have you noticed any unusual or heavy bleeding, such as nosebleeds or prolonged bleeding from a cut or vaccination?
- 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?
- Have you noticed heavy bruises?
- Has your child complained of pain or warmth around his or her joints?
- Has anyone in your family been diagnosed with a bleeding disorder?
- Are you planning to have more children?
- Hoots WK, et al. Clinical manifestations and diagnosis of hemophilia. http://www.uptodate.com/home. Accessed May 12, 2014.
- AskMayoExpert. What tests are needed to confirm the diagnosis or expedite the evaluation of hemophilia? Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2014.
- Hoffman R, et al. Hematology: Basic Principles and Practice. 6th ed. Philadelphia, Pa.: Saunders Elsevier 2013. http://www.clinicalkey.com. Accessed May 12, 2014.
- Kliegman RM, et al. Nelson Textbook of Pediatrics. 19th ed. Philadelphia, Pa.: Saunders Elsevier; 2011. http://www.clinicalkey.com. Accessed May 12, 2014.
- Hoots WK, et al. Treatment of hemophilia. http://www.uptodate.com/home. Accessed May 12, 2014.
- Berntorp E, et al. Modern haemophilia care. The Lancet. 2012;379:1447.
- Living with hemophilia. National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/hemophilia/livingwith.html Accessed May 13, 2014.
- Lim MY, et al. Outcomes of management of acute coronary syndrome in patients with congenital bleeding disorders: A single center experience and review of the literature. Thrombosis Research. 2012;130:316.
- Barbara Woodward Lips Patient Education Center. Hemophilia. Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2009.
- Cook, AJ. Decision Support System. Mayo Clinic, Rochester, Minn. July 17, 2014.
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