Nicole was 16 years old when her amplified musculoskeletal pain syndrome (AMPS) required her to seek treatment at the only program created specifically for pediatric patients suffering from chronic pain in the southeastern United States, located at Nemours Children’s Hospital in Lake Nona.
In April 2017, Nicole started to feel joint and muscle pain “everywhere.”
“We tried everything; I did rounds of physical therapy, massage, and even acupuncture. But nothing really worked,” Nicole said. “It was really hard to be a normal kid and see people doing activities that I couldn’t do because it hurt me.”
Her family found the program at Nemours, and for four weeks, Nicole and her mother stayed at the Ronald McDonald House. She spent her waking hours either going through treatment at the hospital, under the supervision of a physical therapist, a behavioral specialist, and an occupational therapist, or doing her prescribed lifestyle routines and workouts out of the hospital.
In the end, Nicole saw the results she was looking for.
“The pain is almost gone,” she grinned. “And I’m not afraid to try new things.”
The Nemours Pediatric Pain Rehabilitation Program commonly sees patients with Nicole’s affliction as well as kids suffering from cancer pain, chronic headaches, nerve injuries, and complex regional pain syndrome.
Lisgelia Santana, M.D., is an anesthesiologist at the hospital who helped create the pediatric pain program.
“I told the hospital that in order for me and for us to be successful, we needed to create a program that will involve multiple disciplines that will make for better function for the patient,” Santana said. “Not only physically but also mentally.”
Kaylin Luu is a clinical therapist at Nemours; she helps oversee the program as well as the program’s sixth anniversary celebration on Dec. 14.
“We want to not only celebrate the graduates of the program over the last six years,” Luu said, “but it’s also to bring community awareness to the program and to facilities, [to create] opportunities for financial contribution, and to ensure our continued growth and expansion.”
Graduates of the program will also be attending the celebration, which Luu is particularly excited about.
“The program itself is a four-week, intensive outpatient program,” Luu said. “So, it’s a big accomplishment for [the patients] to get through that.”
Because of the program’s detailed and intensive approach to their treatment of kids with chronic pain as well as a limited staff of people, they can only see two patients at a time. Part of the celebration will be an attempt for the program to expand its resources.
“If we had more staff, we could treat more patients. We could also add additional treatments like art therapy and yoga,” Luu said.
Potential patients are screened beforehand for their chronic pain, and the staff looks for those with “functional impairments of the pain in their life.”
“Have they been withdrawn from school? Withdrawn from sports? How has their life been impaired by the pain? And are they motivated to get better and, committed through this type of treatment, to realize their goals?”
Luu said that the program has so far not received any funding from contributions in the local community. All of the funding comes from coverage by the patient’s medical insurance.
Alyssa Raghu, a Lake Nona native and American Idol star, will perform at the event. There will also be a silent auction for items like Lunch for a Year at Panera Bread, eight weeks of classes at My Gym in Waterford Lakes, a getaway for two at Saddlebrook Resort, passes to Universal Studios, and many more.
The celebration will feature booths from vendors such as Color Street, Nona Oils, and Vaco Orlando, and activities like face painting and photos with Santa Claus. There will also be food trucks from Avofuel, Tacos Mazatlan, and Bahama Buck – among others.
The venue, Nona Adventure Park, will hold a fundraiser where, from 10 a.m. to 6 p.m., 50% of the proceeds of all activity passes and regular priced rental fees will go to Nemours. Each park guest who visits during the promotion hours will also receive a voucher for another visit.
The program’s celebration will take place at the park from 10:30 a.m. to 2 p.m.