Taking Charge: Ellie’s Story
By Erica Gadbois
In 2019, Ellie Barnes, now 12, and her family were searching for answers. After returning from a trip to the Philippines in January, Ellie contracted the flu, and with it, symptoms including headache, nausea, abdominal pain, difficulty breathing and dizziness. Through February and into March, her condition had not improved and began to encompass neck, joint and eye pain; disturbed sleep; significant sweating; and brain fog. As March came to a close, Ellie, an avid rhythmic gymnast, had to withdraw from her beloved sport, and September found her confined to her bed and out of school. “Her migraines were so severe that reading made her cry, so school completely stopped for her. Not even homeschooling,” recalls her mother, Grace.
Over those months, Ellie went through extensive testing to try and determine the source of her malaise and pain: multiple blood analyses, allergy testing, an MRI of her brain to check for an aneurysm, an abdominal ultrasound, a thermography to detect appendicitis, and inflammation assessments through both endoscopy and colonoscopy. Nothing was found. In July, Ellie was diagnosed with functional abdominal pain, a fairly common chronic pain condition in pediatric patients in which pain remains despite treatment. Her physician stated that stress or anxiety may be a contributing factor. From that juncture, Ellie was referred to a FAP specialist at the same health system, who felt that although emotional distress could affect her pain, it was not the cause.
“After hearing her story and when her symptoms started, he said her autonomic nervous system was malfunctioning, causing the pains she was experiencing all over her body,” Grace explains. The physician diagnosed Ellie with postural orthostatic tachycardia syndrome, which causes symptoms such as rapid heartbeat, fainting and lightheadedness, nausea and vision problems, typically brought on from moving from lying down or a seated position to standing. Although its cause is not fully understood, prior viral illness is thought to play a role in many cases. “Since I had never heard of this, I asked if this was common, and he said he had many patients who were suffering from the same thing.”
Ellie soon had her diagnosis confirmed with a tilt table test, which assesses if feeling dizzy or lightheaded coincides with heart rate or blood pressure changes, with a pediatric cardiologist. Pediatric patients fit POTS criteria if their heart rate increases by at least 40 beats per minute within 10 minutes of tilting upward from a flat position. Her care team recommended a rehabilitation program, but one test remained. “We wanted to check that Ellie was not suffering from a cerebral spinal fluid leak. Physical therapy would have made her worse if she had a leak,” says Grace. “Another reason we had her tested is that sometimes there is a misdiagnosis of POTS when the actual problem is a CSF leak, since both have the same top symptoms. A CSF leak would have required a blood patch, not a pain program.” With no leak detected, Ellie began neurofeedback therapies, counseling and acupuncture, but needed to adjust her approach as her condition advanced — car rides became unbearable for her nausea.
Her counselor and acupuncturist began coming to the family’s home, and she also connected with a chiropractic neurologist for vestibular therapy, a type of physical therapy that specifically addresses balance, dizziness and vision problems. “Every week, we would stay at a hotel for two nights near the chiropractor’s office,” Grace states. “It was literally only about a two-minute drive to her office from the hotel. There were times Ellie was in so much pain that the chiropractor would have to come to our hotel instead of us going to her. We were lucky we found caring doctors who were willing to go out of their way to help her.” The Barneses are also grateful Ellie received what, for POTS, was a quick diagnosis. “It took about eight months,” explains Grace. “Even though this was a long process for us, most POTS patients take four to five years to get diagnosed because their symptoms are so complex.”
Even with her treatment regimen underway, Ellie was still struggling, and her family knew she needed a chronic pain program tailored to pediatric patients. Prepared to have Ellie evaluated at a place in Cleveland — a significant distance from their Orange County-area home — the Barnes’ plans changed when Grace’s mother-in-law happened upon an article about the newly opened Children’s Specialized Hospital Chronic Pain Management Program at Rady Children’s Hospital-San Diego. “We were not aware that there was any inpatient chronic pain program for kids in California until we read the article,” says Grace. After connecting with Program Director Anke Reineke, PhD, BCB, through self-referral, Ellie was on her way to the 28-day inpatient option within the program. Once there, she was met with a care plan honed just for her, with elements of psychology; recreational, occupational and physical therapies; and physiatry mapped out in a progressive schedule. “We challenge our patients from day one,” explains Reineke. “With the support of the team, our patients are pushing themselves through pain every day, and it’s hard work. But they’re essentially changing the way their brain processes their pain, and learning skills and coping tools they’ll be able to use after they leave the program. This is all done without the use of any pain medications or opioids. This helps them to maintain the healthiest and most holistic transition back into their everyday lives — school, being with friends and family, and favorite activities.”
“[Ellie] said the first week was hard because she was not used to doing any exercises. Her body had deconditioned from being bedridden,” Grace remembers. “She was also worried about the people who were going to work with her, but she said they were super nice. They were able to get her to exercise because they did not push her too much, but only up to the point that she was able. Then, as she got stronger, they did more and more.” Ellie’s father, Scott, adds, “Very quickly, Ellie grew stronger and more able to resist the effects of POTS. Her circulation improved.”
As part of the program’s strong emphasis on mental health informing overall wellness and supporting pain management, Ellie also participated in counseling and biofeedback sessions with Reineke. “Ellie said the counseling helped her better understand what was happening to her body. I remember her telling me when she was still at the Hospital that Anke was very funny, so I think that made her more comfortable with her.”
“Counseling helped her fight the negative thoughts which come with long-term debilitation and illness,” continues Scott. “Distraction techniques helped reduce the length of time the pain affected her. Optimism returned along with her strength. The first weekend we were allowed to bring her home (COVID restrictions made visits tricky), Ellie rode a bicycle for the first time in over a year. I can’t tell you how happy we all were to see her grinning wildly and careening with her sister through the vacant parking lots of lockdown-emptied stores.” Ellie’s schedule also included time for fun and relaxation to further support her mental and emotional well-being; with games, harp and ukulele lessons, and TikTok-inspired dance sessions with recreational therapist Charlotte Filardi, CTRS. “I think the way she was treated made a huge difference,” says Grace.
“In addition to helping Ellie, Rady [Children’s] counseled us on how to be good parents to someone suffering with chronic pain. This helped the entire family after the program ended,” Scott says. “We were hopeful that this program would turn things around for Ellie and she would become functional again. As the parent who stayed home, I watched her in what seemed like level 10 pain daily, and it was truly breaking my heart and I was crying every day,” Grace adds. “My husband and I were already seeing our own counselors prior to the program. Seeing Ellie [go] from being a very athletic child to becoming completely down was such a shock to us that we didn’t know how to deal with it. So, we were also happy when we found out that counseling for the parents was part of the program. Probably the most valuable thing that Anke taught me was letting go of the guilt that I could not help alleviate Ellie’s pain. She said Ellie was responsible for her own body and there was nothing I could do to minimize her pain, but I could support her in other ways such, as giving her encouragement. She said that’s what the program is for … to teach Ellie coping skills to help her get through her pains. There was no promise that she would come out pain free, but our hope was that her pain would be minimized to where she [could] do activities again.”
Once Ellie graduated from the chronic pain program in April 2020, she was able to return to rhythmic gymnastics on a modified schedule and get up to speed on her schoolwork. “Ellie’s condition did not entirely disappear, but she was able to manage it to a remarkable degree,” Scott notes. “We were telling people she had recovered between 80 and 90%. All medicines and supplements were removed, as well as a gluten-free diet we were trying. The medical doctor at Rady [Children’s] could not measure any sign of POTS affecting Ellie’s cardiovascular system.” She and her family also took a summertime trip to Montana, where she rode horses, river rafted and tried out 20-foot ropes courses.
“Ellie had a setback a couple of months ago,” says Scott. “We were told that POTS was like that, it could come and go, get better and then get worse for no apparent reason, and so this was a disappointment but not entirely a surprise. Ellie had to drop rhythmic gymnastics again and to this day cannot attend school in-person most of the time. However, she stays up and out of bed all day, keeps up with her homework online, exercises around an hour a day, and most importantly, maintains an optimistic attitude. She beat this once; she knows she can do it again. And we as parents keep in mind what we were taught through the counseling from Rady [Children’s]. We need to treat Ellie as a normal child and not a sick child. We are not responsible for her pain or rehabilitation, but can encourage her to use the therapies from [the chronic pain program] to recover faster. She has to do the chores just like her sister, even if it takes her longer.
“We look at Ellie’s treatment at the Chronic Pain Management Program as a tremendous success. Yes, it would have been wonderful if Ellie stayed at the near full recovery level, but looking back on the improvement in physical and mental health, as well as the wellness of the family as a whole, it is clear we owe Rady [Children’s] a huge debt of gratitude.”
Published March 2021