You'll likely start by seeing your family doctor or a general practitioner. You may then be referred to a doctor who specializes in disorders of the immune system (immunologist).
Here's some information to help you get ready for your appointment and to know what to expect from your doctor.
What you can do
- Write down any symptoms, including any that may seem unrelated to the reason for which you scheduled the appointment.
- Keep copies of records from hospitalizations and medical test results, including X-rays, blood test results and culture findings, and bring them with you to your appointment.
- Ask family members about the family medical history, including whether anyone was diagnosed with primary immunodeficiency, or if any babies or children died inexplicably.
- Make a list of all medications, vitamins or supplements you or your child is taking. If possible, write down all of the antibiotic prescriptions and the dosage you or your child has taken for the past several months.
- Ask a family member or friend to come with you, if possible. Someone who accompanies you may remember something you missed or forgot.
- Write down questions to ask your doctor.
Preparing a list of questions can help you make the most of the time with the doctor. For primary immunodeficiency, some basic questions to ask include:
- What's the most likely cause of these symptoms?
- Are there other possible causes?
- What tests are needed to confirm the diagnosis? Do these tests require special preparation?
- What's the prognosis?
- What treatments are available, and which do you recommend?
- What side effects can be expected from treatment?
- Are there alternatives to the primary approach you're suggesting?
- Are there activity restrictions?
- Are there brochures or other printed material I can take with me? What websites do you recommend?
Don't hesitate to ask any other questions you have.
What to expect from your doctor
Your doctor or your child's doctor is likely to ask you a number of questions, including:
Jul. 30, 2013
- When did the symptoms begin?
- Have symptoms been continuous or occasional?
- How many infections have you or your child had during the past year?
- How long do these infections usually last?
- Do antibiotics usually clear up the infection?
- How many times has your child taken antibiotics during the last year?
- Does anyone in your or your child's family have primary immunodeficiency?
- Primary immunodeficiency. Eunice Kennedy Shriver National Institute of Child Health and Human Development. http://www.nichd.nih.gov/publications/pubs/Pages/primary_immuno.aspx. Accessed May 20, 2013.
- Blaese R, et al. Patient and Family Handbook for Primary Immunodeficiency Diseases. 4th ed. Towson, Md.: Immune Deficiency Foundation; 2007. http://primaryimmune.org/about-primary-immunodeficiency-diseases/idf-publications/patient-family-handbook. Accessed May 20, 2013.
- Primary immunodeficiency diseases. American Academy of Allergy, Asthma and Immunology. http://www.aaaai.org/conditions-and-treatments/primary-immunodeficiency-disease.aspx. Accessed May 20, 2013.
- Papadopoulou-Alataki E, et al. Prevention of infection of children and adolescents with primary immunodeficiency disorders. Asian Pacific Journal of Allergy and Immunology. 2012;30:249.
- Pasternak MS. Approach to the adult with recurrent infections. http://www.uptodate.com/home. Accessed May 20, 2013.
- Bonilla FA. Medical management of immune deficiency. http://www.uptodate.com/home. Accessed May 20, 2013.
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