2006 - Nemours

Sum of Care Helps LindseyCope with LupusDuring seven-year-old Lindsey’s most recent visit to her rheumatologist,you would never know anything was wrong. But there is: Lindsey has lupus.The chronic inflammatory disease develops when the immunesystem attacks the body’s own tissues and organs. It targetsjoints, skin, kidneys, blood cells, lungs and the heart.Lindsey’s health journey began shortly after she turned three years old.She ran a fever for 10 straight days. She then ran fevers periodically,but her pediatrician thought she was fine. About nine months later,Lindsey would cry and scream during everyday activities like beingplaced in her car seat or holding her mother’s hand. She complainedof pain in her knees and fingers and developed a rash. Shortly after,an adult rheumatologist diagnosed juvenile rheumatoid arthritis.Unfortunately, there was no pediatric specialist in her area.A year and a half later, Lindsey’s condition worsened and her rashran across the bridge of her nose. This butterfly rash is a commonsign of lupus. Her pediatrician referred her to Brandon Dorion,MD, a pediatric rheumatologist with Nemours Children’s Clinicin Pensacola, an hour drive from her home in Mobile, Alabama.The tests confirmed Dr. Dorion’s suspicion; Lindsey had lupusdespite its rarity in children her age. Lindsey also saw EdwardKohaut, MD, a Nemours pediatric nephrologist, because thelupus affected her kidneys.“To have lupus at Lindsey’s age is rare and usually associated withsignificant illness,” said Dr. Dorion. “She has been fortunate to havean excellent response to new biological medicine targeting herlymphocytes, which play an important role in lupus.”Lindsey receives treatments and monthly bloodwork, but the first-grader feels and acts muchbetter. She is doing well in school and enjoysgymnastics, basketball and ridingher bike. “We really are lucky,”said Leanne, Lindsey’s mom.“Nemours had the physicianswe needed, and we lovethe staff.” ■8 2006 Nemours Annual Report