Two children with subcutaneous edema of the neck (“bull neck”) were referred for rheumatology evaluation in a two month period. A 4y girl following a fall at age 15 mos had subgaleal swelling and then repetitive mysterious “lumps” in her scalp measuring 3 × 2cm and 7mm deep. At age 4 she developed sudden massive neck swelling extending down to the chest wall and axillae, threatening the airway and seriously impeding shoulder motion. One year later she developed “wishbones” in her axillae; in retrospect she was recognized to have little “bunions”(developmental abnormality) in her great toes. A previously well 4 year old boy developed a “bull neck” with “scleredema” progressing down the trunk but sparing the face. Following this he had intermittent episodes of subcutaneous edema, once with massive scrotal edema. A year later he developed typical heterotopic ossification of soft tissues. Following diagnosis of FOP it was recalled that as a neonate he had“reconstruction of bilaterally duplicated hallux”. Mysterious episodic swellings and toe abnormalities should suggest a diagnosis of FOP long before heterotopic ossification can be demonstrated. The swellings, which may last from weeks to months, are lymphedema and non-inflammatory. This has not previously been recognized.