People with moderate to severe forms of thalassemia are usually diagnosed within the first two years of life. If you've noticed some of the signs and symptoms of thalassemia in your infant or child, see your family doctor or pediatrician. You may then be referred to a doctor who specializes in blood disorders (hematologist).
Because appointments can be brief, and there's often a lot of ground to cover, it's a good idea to be well prepared. Here's some information to help you get ready, and what to expect from your doctor.
What you can do
- Write down any symptoms you or your child is experiencing, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Write down key personal information, including any major stresses or recent life changes. Ask family members if anyone on either side of the family has ever had thalassemia, and let your doctor know if anyone has.
- Make a list of all medications, vitamins and supplements that you're taking.
- Write down questions to ask your doctor.
Your time with your doctor may be limited, so preparing a list of questions can help you make the most of your time together. List your questions from most important to least important in case time runs out. For thalassemia, some basic questions to ask your doctor include:
- What's the most likely cause of my or my child's symptoms?
- Are there other possible causes?
- What kinds of tests are needed?
- What treatments are available?
- What treatments do you recommend?
- What are the most common side effects from each treatment?
- I (or my child) have these other health conditions. How can they best be managed together?
- Are there any dietary restrictions to follow? Do I (or my child) need to take any nutritional supplements?
- Are there any brochures or other printed material that I can take? What websites do you recommend?
In addition to the questions that you've prepared to ask your doctor, don't hesitate to ask additional questions that come up 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 reserve time to go over any points you want to spend more time on. Your doctor may ask:
Jan. 02, 2014
- Do you know if anyone in your family has thalassemia?
- In what part of the world did your family originate?
- When did you first notice your symptoms?
- Do your symptoms occur all the time or do they come and go?
- How severe are your symptoms?
- Does anything seem to improve your symptoms?
- What, if anything, appears to worsen your symptoms?
- Longo DL, et al. Harrison's Online. 18th ed. New York, N.Y.: The McGraw-Hill Companies; 2012. http://www.accessmedicine.com/resourceTOC.aspx?resourceID=4. Accessed Sept. 10, 2013.
- What are thalassemias? National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/thalassemia/printall-index.html. Accessed Sept. 11, 2013.
- Kelly N. Thalassemia. Pediatrics in Review. 2012;33;434.
- Thalassemias. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merckmanuals.com/professional/hematology_and_oncology/anemias_caused_by_hemolysis/thalassemias.html. Accessed Sept. 10, 2013.
- Mueller BU. Prenatal testing for the hemoglobinopathies and thalassemias. http://www.uptodate.com/home. Accessed Sept. 10, 2013.
- Benz EJ. Treatment of beta thalassemia. http://www.uptodate.com/home. Accessed Sept. 10, 2013.
- Musallam KM, et al. Iron overload in b-thalassemia intermedia: An emerging concern. Current Opinion in Hematology. 2013;20:187.
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