My 32 year old son who has Down Syndrome was diagnosed today with temporal arterilitis.
Tim aka Waffle has been getting swelling and pain throughout his body every few months for a couple of years. He was admitted to the hospital with swelling and pain in his hand in January. He quickly went down hill and slipped away twice luckily they brought him back. They always treat him for infection including this visit in January. He left the hospital still ill and with a diagnosis of cardiomyopathy and on continued antibiotics. He seemed to recover from the infection. Then April 4th he had swelling in his face we took him to the Dr who due to his history and symptoms treated him with two antibiotics for MRSA. As parents we were grateful to have caught it early and to avoid another hospital admission. However Easter morning ( while still on antibiotics) he had significant swelling and complaints of vision problems. Due to his Down Syndrome there is a large communication barrier. With the new complaint of vision problems we were scared and took him to the Er. There they added another antibiotic and sent us home with orders to follow up with his Dr. which we did today. The Dr ruled out infection after hearing of the vision problems and new complaints of pain in the temple and jaw. He has now been diagnosed with temporal arterilitis and of course the Dr started him on steroids and low dose aspirin. This sounds like a scary thing to have. Given his reluctance to tell us when things are wrong combined with his communication issues I'm pretty scared for him. Any suggestions on things we could look for or questions we should ask him, also does anyone know of any body else with Down Syndrome and this condition?