- Imagine being a kid or teenager living with a disease that has flare-ups that can include uncontrollable diarrhea, difficulty digesting food and pain that can double you over. This is what young people living with Crohn's disease have to deal with.
The Crohn’s & Colitis Foundation of America recently hosted a program, Pediatric Crohn’s: Finding the Right Path to Care.
One of the featured presenters was Janis Arnold, MA, LICSW, a clinical social worker at the Center of Inflammatory Bowel Diseases at Children’s Hospital in Boston. She talked about the psychological and social issues adolescents face as they're being treated for Crohn's disease (CD).
Issues facing children with Crohn's disease
Arnold began her presentation by outlining some of the unique issues facing children and teens with CD:
- defining and understanding what it means to have a chronic illness
- learning to know and trust your body
- working with these factors into forging one's identity
- coping with what she calls ongoing "often invasive, sometimes violating" procedures, clinic visits and hospitalizations
- adhering to complicated dietary and medical regimens
The child's relationship with food becomes unpredictable and may evolve into something defined as "either all good or all bad, and this can lead to confusion and disordered eating patterns."
Arnold says that all of these things impact a young person's social interactions, quality of life, body image, self-esteem and "sense of dignity."
For all of these reasons, children, teens and their parents need extra support both at home and school.
The emotional impact of the disease
With so much to deal with physically, mentally and emotionally, a youngster is vulnerable to mental health issues, according to Arnold, including:
- low self-esteem
- poor social functioning
- mood disorders
- depressive symptoms
"We do know that children with chronic physical illnesses of many types have an increased risk of subclinical mental health problems, meaning that it may not rise to the full threshold of a formal mental health diagnosis, but almost a quiet hum where some of these symptoms could slowly creep into quality of life issues," Arnold explained.
Severe depression has been associated with inflammatory bowel disease (IBD) and the use of steroids which are commonly prescribed to treat CD.
Arnold notes it's important for healthcare providers to be sensitive to these issues and ask the right questions both about the physical systems and quality of life issues.
Treating three spheres of the disease
Arnold sees treating pediatric Crohn's disease as an approach touching three spheres:
- Biological sphere - physical functioning, status of the disease, progression of the disease
- Psychological sphere - temperament, motivation, problem-solving ability, any pre-existing mood disorders
- Social sphere - school and work issues, peer interactions, "just the daily hassles that any child or teenager faces."
All three spheres need to be assessed during all clinical visits to provide the best care for youngsters living with CD.
"So I will often ask patients, 'Now that’s it’s been a month since you’ve had Crohn’s; now that it’s been 2 years; now that it’s been 10 years, what’s the hardest part of this for you now and what’s the easiest part of this for you now?'" Arnold said.
She continued, "Whether that’s an answer that has stayed the same or there’s a new challenge can help us guide quality of life interventions."
Learning how they're dealing
Included in finding out how well a child is coping is assessing such areas as how well they're managing medication regimens and if any hobbies or activities have had to be abandoned because of the illness.
Arnold also wants to know about the child's friendships and family relationships. Who are they sharing information with and how is it being accepted?
Additionally, Arnold finds out about support systems the child has - with family members, friends, community members and other groups.
Taking a look at these various factors helps determine a need for counseling or mental health help - either formal or more casual in terms of learning coping skills, how to reduce stress and cognitive therapy.
Children will likely need assistance to ensure they reach their educational potential.
"If a student is at a public school, then having the diagnosis of Crohn’s automatically qualifies them for a 504 Plan," Arnold explains.
"This is different than other educational plans that might address learning vulnerabilities. A 504 Plan is really specifically to address the medical vulnerabilities."
Once a child is diagnosed, Arnold urges families to notify key school personnel, including:
- school nurse
- guidance counselor
- social worker
Medical documentation is required, "so a letter from the physician’s office that establishes eligibility and outlines the diagnosis is critical to setting the wheels in motion," Arnold said.
Requesting a 504 Plan also needs to be made in writing.
Typical 504 Plan accommodations
Arnold explained that accommodations can be both environmental and academic, and may include such things as:
- anytime bathroom and nurse's office passes
- nurse’s training for administering medications
- being able to eat or drink in class if needed
- stop-the-clock testing so that the child can use the restroom during a timed test without penalty
- postponing grade calculations if absences are due to Crohn’s
- seating charts that give the child easier access to the door
- increased time between classes
These are just some of the accommodations that can help your child or teen manage better during school. Your school will be happy to work with you and your student to provide the best learning atmosphere possible.
Being your child's advocate
Living with Crohn's disease is no picnic - for the child or the family. As a parent, you can advocate for your child to make sure s/he gets exactly the care needed not just physically, but psychologically and socially.