Cryopyrin-Associated Autoinflammatory Syndromes (CAPS)
Overview
CAPS is a group of rare, inherited inflammatory conditions caused by a change in the cryopyrin protein that keeps the body's inflammation switch stuck in the "on" position. It usually begins in infancy or early childhood and ranges from a mild form triggered by cold exposure to a severe, lifelong form that can cause chronic meningitis-like inflammation. It affects boys and girls from every ethnic background, and without treatment it can lead to hearing loss and organ damage over time.
Questions to Ask Your Doctor
- Which type of CAPS does my child have, and how does that affect the long-term outlook?
- What genetic testing was used to confirm this diagnosis, and should other family members be tested?
- How will we monitor for hearing loss, eye inflammation, or other organ involvement over time?
- Which medication do you recommend starting with, and how soon might we see improvement?
- What symptoms during a flare should prompt an urgent call to you rather than waiting for the next visit?
Getting Care
A pediatric rheumatologist experienced in autoinflammatory diseases should guide diagnosis and treatment, since CAPS often needs input from specialists in hearing, eyes, and neurology as well. Seek care sooner if fever, rash, or headaches are accompanied by new confusion, severe headache, or a sudden change in hearing, since early treatment can help prevent damage that may not be reversible.
Source: https://rheumatology.org/patients/cryopyrin-associated-autoinflammatory-syndromes-caps
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