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.
What you can do
- Write down symptoms, including any that may seem unrelated to the reason for your appointment.
- Bring copies of records from hospitalizations and medical test results, including X-rays, blood test results and culture findings.
- Ask family members about the family medical history, including whether anyone was diagnosed with primary immunodeficiency, or if any babies or children died of unknown causes.
- Make a list of medications, vitamins and supplements you or your child takes. If possible, list all of the antibiotic prescriptions and the dosages 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, basic questions include:
- What's the most likely cause of these symptoms?
- Are there other possible causes?
- What tests are needed? Do these tests require special preparation?
- What's the prognosis?
- What treatments are available, and which do you recommend?
- I have other health problems, how do I manage them together.
- 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 have? What websites do you recommend?
Don't hesitate to ask any other questions, as well.
What to expect from your doctor
Your doctor or your child's doctor is likely to ask you a number of questions, including:
Jan. 20, 2015
- 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 the family have primary immunodeficiency?
- Primary immunodeficiency. National Institute of Child Health and Human Development. http://www.nichd.nih.gov/publications/pubs/Pages/primary_immuno.aspx. Accessed Nov. 23, 2014.
- About primary immunodeficiencies. Immune Deficiency Foundation. http://primaryimmune.org/about-primary-immunodeficiencies/. Accessed Dec. 2, 2014.
- Pasternack MS. Approach to the adult with recurrent infections. http://www.uptodate.com/home. Accessed Nov. 23, 2014.
- Stiehm ER. Approach to the child with recurrent infections. http://www.uptodate.com/home. Accessed Nov. 23, 2014.
- Primary immunodeficiency diseases. American Academy of Allergy, Asthma and Immunology. http://www.aaaai.org/conditions-and-treatments/primary-immunodeficiency-disease.aspx. Accessed Nov. 23, 2014.
- Berger M. Immune globulin therapy in primary immunodeficiency. http://www.uptodate.com/home. Accessed Nov. 23, 2014.
- General care. Immune Deficiency Foundation. http://primaryimmune.org/about-primary-immunodeficiencies/relevant-info/general-care/. Accessed Nov. 3, 2014.