Growing up in Reading, Pennsylvania, Morgan Petersen never had the chance to be a typical kid. At an early age, she was diagnosed with celiac disease, lupus, and type 1 diabetes; the chronic pain would become just another thing on her growing list.
Throughout her teenage years, Morgan never wanted to be “that kid with diabetes.” She would miss an insulin shot here and there and skip testing her blood sugar out of fear of what her friends would think. “None of my friends had diabetes so I viewed it as a nuisance,” said Morgan. “I wanted to go to the movies and hang out with my friends. I didn’t want to be the one with this illness that forced me to check my blood sugar nonstop and continuously take insulin shots.” Her uncontrolled diabetes took a toll on her body and sent her to the hospital often with diabetic ketoacidosis, a common complication that occurs when there is not a sufficient amount of insulin in the body to regulate the high levels of acid in the blood.
In August of 2017, Morgan had just started college when she began experiencing extreme stomach pains. The doctors told her not to worry, it was probably just constipation. In the following days, the pain only got worse. It had moved from her stomach to her legs and feet, leading her doctors to believe she was experiencing symptoms of diabetic nerve damage, called diabetic neuropathy. But when 14 weeks in the hospital and several tests later provided no results or progress, Morgan was diagnosed with Amplified Muscular Skeletal Pain Syndrome (AMPS) by her rheumatologist and was referred to Children’s Specialized Hospital’s outpatient Chronic Pain Management Program for an evaluation.
Morgan’s case was unique. “When she was screened by our chronic pain team for AMPS, our clinicians felt she had too many underlying conditions that would be better addressed by our chronic illness team,” said Ayana Hamilton, Patient Care Navigator for the Chronic Illness Management Program at Children’s Specialized Hospital. The four-week program embraces a holistic approach focused on healing the mind, body and spirit. “Our goal is to improve the overall well-being of the patient. As soon as we could address the underlying issue of her uncontrolled type 1 diabetes, we could focus on healing the rest of her body.” Once evaluated by the chronic illness team and cleared to enter the program in July of 2018, Morgan began her journey at Children’s Specialized in New Brunswick, New Jersey.
“When Morgan first entered the Chronic Illness Management Program, it was clear that all systems of her body were being affected by her uncontrolled diabetes. Her hair, skin, and other organs were showing signs of failure and chronic illness. In addition, she was dealing with the stress of several prolonged hospitalizations and the impact that uncontrolled chronic illness can have on the body, mind, and spirit. Our team works to improve the management of the illness, but through an approach that addresses all aspects of life- education about the disease, experiences in management, improving mental and physical health, and transitioning back to a healthy lifestyle. We knew that this was the approach that Morgan needed,” say Dr. Colin O’Reilly, DO, FAAP, FACOP, FCCM, Medical Director of the Chronic Illness Program.
Morgan’s schedule was vigorous; daily physical, occupation and recreation therapy. Three hours a week of individual psychology sessions, a weekly family psychology session, and one hour of group therapy with her peers in the program. The nutrition and child life team provided weekly cooking groups and trips to local restaurants which helped Morgan learn how to count nutritional values at some of her favorite restaurants when she returns home. Combined with illness-specific education and medical oversight, Morgan and her peers in the program quickly learned how monitor their glucose and insulin levels and take care of themselves appropriately.
“We work with our patients to create custom, individualized plans that they can take back home with them and incorporate into their da
The best part about the Chronic Illness Management Program has been the support group that I’ve gained,” said Morgan without hesitation. “I’ve never had any friends with diabetes so I always felt very alone. But here, you don’t feel like you’re doing this on your own. I now have this group of friends throughout the country that have all been through the same thing and we can help hold one another accountable and push through each day.”
Now a proud graduate of the Children’s Specialized Hospital’s Chronic Illness Management Program, she has learned how to take control of her diabetes and, as predicted, her chronic pain has disappeared. She scored a 10/10 on both her compliance to the medial management of her illness and her knowledge about nutrition and exercise, over a 50% improvement from her admission. The toolkit of resources she has gained during her stay along with the insulin pump will help her keep moving forward and stay on track with managing her chronic illness. Having missed approximately 80 days of school due to illness, flare ups and complications, Morgan was excited to get home and re-enroll in college. She dreams of becoming a dermatologist in hopes of giving back to the medical field that’s given her so much..