For a parent of a child diagnosed with a chronic illness like Crohn’s disease or ulcerative colitis, the future can be scary and overwhelming. Resources are available to help families make sense of many diseases and ailments, and some of these organizations even offer tools specifically designed to help support the care of a child patient
Understanding Pediatric Chronic Illnesses
How families can manage inflammatory bowel diseases
(Family Features) For a parent of a child diagnosed with a chronic illness, the future can be scary and overwhelming. Assembling a medical team and beginning to formulate a treatment plan, even becoming familiar with a glossary of new terminology, can be taxing.
Resources are available to help families make sense of many diseases and ailments, and some of these organizations even offer tools specifically designed to help support the care of a child patient. For example, the Crohn’s & Colitis Foundation is a leading resource for families navigating inflammatory bowel diseases like Crohn’s disease and ulcerative colitis.
What is IBD?
Crohn’s disease may occur in any part of the large intestine (also called the colon). In fact, it can happen anywhere in the entire digestive system. However, it most commonly develops right where the small and large intestine meet. In ulcerative colitis, only the colon and rectum are affected.
No one knows for sure what causes Crohn’s disease or ulcerative colitis, but experts believe several factors may lead to the development of the diseases, including genes, environmental elements like viruses and bacteria, and inappropriate immune reactions.
What are the symptoms?
“It is critical that if you suspect your child has inflammatory bowel disease, you seek care with a qualified pediatric gastroenterologist who can carefully and efficiently help determine the diagnosis and begin a treatment plan to help your child feel better, thrive, and maximize quality of life,” said Andrew Grossman, MD, pediatric gastroenterologist and chair of the pediatric affairs committee of the Crohn’s & Colitis Foundation.
How does it affect children?
They are often overwhelmed by the emotional and psychological side effects of the disease.
Learning how to manage the disease is not always easy for children. Parents play an important role in educating their children about IBD, including teaching them they need to take their health seriously and take responsibility for caring for themselves.
How can IBD be managed?
Maintaining your child’s health may also involve lifestyle accommodations, like organizing your schedule for ample bathroom breaks when away from home. You may also need to work closely with your child’s school to manage absences and academic performance along with any medical care that needs to take place during school hours.
Many families also find value in building a network of supportive friends and loved ones. One example, the Crohn’s & Colitis Foundation offers Camp Oasis – a co-ed residential camp program that allows children to meet others like them in a safe and enriching environment.
Another resource is justlikemeibd.org , a website featuring stories and videos from teens with IBD as well as information on school, dating, managing stress and diet, research updates, and resources for parents.
Is your child ready to manage his or her own care?
Photos courtesy of Getty ImagesSOURCE:
Crohn’s & Colitis Foundation
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