Rheumatology appointment

Last week we took Sadie to see her 11th doctor, a Rheumatologist. We have had concerns about her lack of circulation and also her super red hands and purple feet since she was a baby. When she is sitting in certain positions, her feet would turn VERY purple, but especially when we would hold her in a certain position. Her casts from 4 days old up till her surgery at 7 weeks made it worse. We notice her hands the most when she has a fever or she is exposed to more extreme temperatures. Finally after asking all the doctors with no known reason, it was recommended that we rule out Raynauds. After a long overview of Sadie's medical background, the doctor thoroughly examined her. She most confidently believed that Sadie does NOT have Raynauds. However, she explained in cases like Sadie's when kids have hypotonia (low muscle tone) that they usually have slow vessels and blood flow. She called it Vaso Motor Instability or blood pooling in the fingers and toes mostly due to low muscle tone related to blood flow and vessels. She also believed the color change in her hands during temperature change are related her Thermal Regulation or her body can't regulate itself in higher or lower temperatures. This pretty much explains her cold hands and feet. But it is scary when it's hot outside or very cold. Her little body has trouble adjusting. Since Sadie is having dental and a heart echo under anesthesia in February, she ordered a long list of blood work to get a baseline for her levels of autoimmunity, CBC, and thyroid.