Patient Testimonial: Lakin Jones, Pediatric Rheumatology

Published on April 8, 2017

Lakin Jones cheerleaderWe all want the best for our children so when Lakin Jones of Campbellsburg, Ind. was diagnosed with morphea, it was vital to her parents that she receive the best care possible, and that is exactly what she received. 

Jones, a junior in high school, has always been active with cheerleading, other school activities and even runs her own craft upcycling business, Urban Return. Thus, it was a real surprise to her and her family when she was diagnosed with such a serious condition. “It all started with ‘a mysterious rash’ with discolored spots on my back, collar bone and hips early sophomore year of high school,” Jones said. 

Her primary care providers were not able to pinpoint what was causing the discoloration so Jones’ mother took her to the dermatologist she had seen a few years before. Right away, the dermatologist recognized the patches as morphea, a rare skin condition, and told Jones and her mother that they would need to travel an hour south to Louisville to see Kenneth N. Schikler, MD at UofL Physicians – Pediatric Rheumatology. She needed to be referred to rheumatology for this condition because some forms of morphea can actually restrict movement in the joints. 

After examining Jones, Dr. Schikler confirmed that she indeed had morphea. “My philosophy of care has always been to partner with the patient and their family with the goal of optimizing their well-being and that is exactly what I tried to do with  Lakin and her family,”  Schikler said.  

The treatment for morphea includes medications, including methotrexate, a drug often used to treat rheumatoid arthritis and certain types of cancer, that require careful management because they can cause serious side effects. 

Lakin Jones sweetheart“It was so important that Jones and her parents understand our treatment plan for her because of the medications being used. Additionally, Lakin’s condition would require monthly intravenous steroid treatments, requiring regularly scheduled trips to Louisville for a long period of time -- the next 6 months to a few years,”  Schikler said. 

Schikler also had Jones be evaluated by doctors at UofL Physicians – Pediatric Pulmonology to understand her risks for possible lung involvement with the disease or with medications. Finally, he instructed his patient to remain active in order to help keep the skin impacted by the morphea pliable. With this guidance, she put even more energy into her cheerleading. 

From October 2015 through June 2016, Jones made monthly trips to Louisville for her treatments. Most trips ended up being mother-daughter day trips to the city where Jones would have multiple appointments. “But we did try to have fun in Louisville when we had some extra time,”  Jones said.  

She endured a lot of pain and hundreds of needles during her treatments. Yet, Jones is ever grateful of her care team and the outcome. “I had the best doctors and nurses. It always made me feel good that they were cheering me on. And one of the nurses would even sing to me while I had my IV. It truly made my treatments as enjoyable as possible,” Jones said. 

Jones’ parents could not agree more, “We are so thankful for the care and love that our daughter received from her doctors and nurses at Norton Children’s Hospital and UofL Physicians. She really did receive the best care possible.” 

Finally, in March of 2017, Dr. Schikler determined that Jones was in full remission and that she would not need to be seen again in Louisville unless she were to see more discoloration or changes to her skin. With this news, Jones can now truly enjoy her remaining time in high school and start to make her college plans.  

To learn more about UofL Physicians - Pediatric Rheumatology, visit http://www.uoflphysicians.com/pediatric-rheumatology.

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