Photo source: Patch
Chronic illnesses introduce major challenges to patients’ lives. Although the symptoms of many chronic conditions can be managed, they still require patients to change their lifestyles. On top of that, the process from initial symptoms to diagnosis can often be a long and arduous journey.
Only after a diagnosis has been reached can patients then begin treatment regimens and experience some relief. While the process of adjusting to a chronic disease is difficult for any patient, it may be especially tough for children. Since children are still developing physically, it can be more difficult to pinpoint a specific diagnosis, and, depending on how young the patient is, it can also be difficult for them to communicate their symptoms accurately. When a child patient suffering from a disease like Crohn’s manages to successfully adjust to treatment, it’s always a victory.
In May of 2017, Caroline Spaulding, an eighth grader diagnosed with Crohn’s disease, visited Washington, DC as a delegate for the Crohn’s and Colitis Foundation’s IBD day. While this was a victory in Caroline’s own story, it certainly didn’t occur overnight.
Crohn’s disease in children
Although most patients suffering from Crohn’s disease are older, it’s not unheard of for a child or adolescent to be diagnosed with the condition. Approximately 20-30 percent of all Crohn’s patients are diagnosed with the disease before they reach the age of 20. That number is a relatively small portion of the total number of patients diagnosed with the disease, and it also represents a pretty large age bracket. There’s a major difference between a 10 year old and a 20 year old, both emotionally and physically. Adolescents who are diagnosed with the disease may have already finished growing prior to being diagnosed and may be equipped to handle the emotional ramifications better. Contrastingly, child patients diagnosed with Crohn’s may have a much more difficult time.
In young children, especially those not yet adolescent, Crohn’s can present a unique set of problems. In addition to affecting the digestive tract and causing various kinds of discomfort, Crohn’s can also negatively impact a child’s ability to gain weight and grow. A child diagnosed with Crohn’s may actually start to lose weight. This is highly problematic since children are at a stage in physical development when healthy weight is needed in order to provide the body with the nutrients it needs to continue growing. This stunted growth can present a host of problems that can have far reaching and long lasting effects if the disease is not treated.
Treatment for Crohn’s disease in children is similar to treatment for adults, but it varies in some significant ways. Since growth is a key concern for child patients, medical professionals work to develop a treatment plan that will ensure a child is getting enough nutrients to maintain a healthy weight and continue developing physically. Healthcare providers also understand that treatment must be conducive with things like school and extracurricular activities so that the child can continue to develop intellectually, socially, and emotionally as well. While all of these are important factors, making sure that a child’s symptoms are managed and not depleting the body of needed resources is the primary concern.
Caroline Spaulding’s story
Because managing Crohn’s disease in children presents a unique set of challenges and concerns, the story of Caroline Spaulding is even more inspiring. Caroline began experiencing abdominal pain and discomfort when she was only nine years old. Additionally, although Caroline should have been gaining weight and growing, she actually started losing weight. Caroline lacked the energy she’d previously had to do things like play sports or even pay attention in school. Her condition seemed to deteriorate rapidly. Obviously, Caroline’s parents were very concerned for her health so they sought medical evaluation. While Caroline’s doctors could see that something was not right, it was difficult for them to pinpoint the root of her problems as Crohn’s disease. It took nearly a year of medical evaluations and explored treatments for doctors to definitely identify Crohn’s disease as Caroline’s problem.
A difficult treatment process
Although receiving a diagnosis was in itself a relief, Caroline’s healing process was really only beginning. Doctors tried several different treatment approaches to help Caroline manage her Crohn’s disease symptoms and to prevent her from losing any more weight, but none of these approaches were successful. Eventually, Caroline decided to try Exclusive Enteral Nutrition (EEN) for twelve weeks instead of continuing with the steroid treatment that had been painful and provided little help. Caroline’s parents and medical providers were supportive of her decision.
EEN treatment required that Caroline be fed only through a tube for the duration of the 12 week process. It was difficult for Caroline to complete this treatment process, but her support system helped her make it through. Caroline’s parents used a countdown calendar to mark off the days of the treatment. They also scheduled rewards or fun activities on certain days to help Caroline as she worked towards her goal. Caroline’s friends at school got in on the project as well. They’d do simple things like bring her gum to chew during school lunch so that she didn’t feel left out. Thankfully, the EEN treatment has been successful.
Caroline’s condition has improved
Caroline is in a much better place now than she was four years ago. At 13 Caroline is active in school and has been able to resume some of her favorite activities like soccer and ballet. Caroline has also started gaining weight again which is an indicator that her body is getting the nutrients it needs to develop healthily. In addition to finding success in managing her symptoms and her health, Caroline has also become an active member of a support system for individuals living with Crohn’s disease. Caroline was chosen to go to Washington, D.C. in May as a patient advocate with the Crohn’s and Colitis Foundation’s IBD Day on the Hill. Caroline also enjoyed returning to Camp Oasis, a week-long summer camp sponsored by the Crohn’s and Colitis Foundation that is designed to provide pediatric patients with a fun experience as part of a wider community. Caroline also planned on participating in the Take Steps for Crohn’s and Colitis walk in October. She noted that she has benefited from assistance these organizations provided and that she wants to use her experiences and abilities to provide assistance for others who may be just starting on the same journey she did a few years ago.
Being diagnosed with Crohn’s disease will change any patient’s life. To successfully manage the disease’s symptoms and to mitigate long-term harm patients have to make a variety of lifestyle changes from medications and therapies to eating habits. Adopting those changes can be difficult for a child, but the consequences of not adopting them are certainly more severe. A child experiencing Crohn’s disease will likely lose weight and suffer from a lack of proper nutrients. This lack of nutrients can prevent a child from growing and developing normally which has the potential for long-term consequences. While the situation may seem dire at first, it’s not without hope. With treatment, Crohn’s patients, including children, can successfully manage their symptoms and live a healthy lifestyle. Caroline Spaulding is a living testament to the success that can be found when dealing with Crohn’s disease. Not only has she gotten her symptoms under control, but she’s now herself an advocate for treatment and a source of encouragement and support.
You can read more of Caroline’s story at Patch.com.