Later that week, she totally lost vision in her right eye. It was during a softball game that same week that she discovered it was more than getting used to wearing glasses. Her balance was also off and she tripped several times during the game.
She revisited her optometrist who examined her eyes and referred her for a brain MRI. Ultimately, Shelby’s parents took her to the ED at Arkansas Children’s Hospital (ACH). After tests, MRI and an inpatient stay, she was officially diagnosed with multiple sclerosis (MS) in June 2017.
"Although most commonly seen in adults, children and adolescents are diagnosed with MS as well," explained Dr. Erin Willis, Director of the Pediatric Demyelinating Clinic at ACH. "Studies suggest that around 5% of all people with MS have symptom onset before the age of 18. Because of similar symptoms and characteristics of other childhood disorders, often the diagnosis can be challenging."
"I had no idea what MS was," said Shelby. "I started seeing Dr. Willis and we talked a lot about resources. I started glatiramer acetate injections three times a week. The shots were extremely painful and left tender lumps at the injection site."
After another MRI, Shelby found out the medicine wasn’t working. The team began researching alternatives, including fingolimod, which had just been approved for pediatric patients in May 2018. Even though the medication had higher risks associated with its use, Dr. Willis, Shelby and her parents made the difficult decision to try the new medication because of the new lesions found on her MRI.
Since changing to this medication, Shelby has had two more MRIs with no new lesions. "Treatments for MS are limited in children," said Dr. Willis. "The most commonly used medications are injectable formulations like Shelby was on and these can be painful. Fortunately, the FDA approved the oral MS medication fingolimod in 2018 for children 10 years or older with relapsing MS."
Shelby is now stable on this new medication and can go back to focusing on more than just her MS. "I am so happy with how Shelby is doing. We have found the right medication for her diagnosis with the absence of further clinical attacks or demyelinating lesions on imaging as well as minimal side effects," said Dr. Willis.
In the midst of being diagnosed, Shelby continued directing her ACE tennis program for kids with special needs. "The kids really helped me get through this, watching how they handle challenges and tough situations. Living with a chronic disease has given me a better perspective," said Shelby. In addition, she continued eating a healthy diet along with daily exercise, both of which are important for a person living with MS.
Furthermore, she has not let her MS diagnosis interfere with her daily life at college. She is a starting player on her college tennis team, spent the summer studying abroad in Spain, and will continue directing her ACE Tennis program that has expanded to Conway and Little Rock.
"Dr. Willis has been a blessing throughout this whole process," said Shelby. "She’s so relatable and feels like a friend. Because of this experience, I’ve decided to devote myself to others, specifically kids, and pursue a medical career."
As the only pediatric Neuroscience Center in the state, we offer multispecialty clinics at Arkansas Children's in Little Rock, and at convenient clinic locations across the state. Appointments can be conveniently coordinated for diagnosis, treatment, follow up and long-term care management, including these specialized testing labs, clinics and centers.