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?
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Crohn’s & Colitis Foundation
For parents with college-age children, there are some basics that help ensure their children are ready to tackle the world. Beyond school supplies, housing, food and transportation, one important consideration remains: health care. It’s important to do some research and have a conversation with your college students to answer these questions about their local health service options before the need arises.
Teach Kids to Manage Their Health Care
Tips for parents of college-age students
(Family Features) For parents with college-age children, there’s a fairly standard set of basics that helps ensure their children are ready to tackle the world with some degree of independence. But beyond school supplies, housing, food and transportation, one important consideration remains: health care.
As a parent, ensuring your young adult is equipped to take charge of his own health can be a daunting task. That’s why it’s important to have a conversation with your college students about their local health service options before the need arises. Together you can do some research and discuss the answers to these questions:
What is your health coverage? Take time to brush up on (or introduce your child) to your family’s health insurance policy and understand how your policy covers various facilities. This is an opportunity to teach about co-pays and deductibles, and what it means when a physician or facility is considered in-network and out-of-network.
Do you already pay to use the student health center? In some cases, student fees include access to the campus student health center and your separate health insurance may not be necessary. However, it’s important to understand what the student fee covers and where there may be gaps, such as dental care.
What are the local options for health care? You’ll rest easier with the assurance that the medical care available to your students is of the highest quality. Many colleges and universities take the extra step of achieving accreditation by the Accreditation Association for Ambulatory Health Care (AAAHC), the nation’s leading accreditor of student health services, to affirm that the care they provide is at nationally recognized standards. You can find accredited organizations at aaahc.org or inquire about accreditation at your university medical center.
Where is the student center located? Encourage your student to set up a well appointment at the student health clinic to get a file started. Not only will this ensure your child can find the center when need arises, having an established patient profile cuts down on paperwork when there’s an emergent health concern. This is particularly helpful for students with medical issues or restrictions because they can be logged in advance for easy recall.
Which other medical practitioners are in the area? There may be any number of reasons your student needs to be seen off campus, so it’s a smart idea to look for AAAHC accreditation when trying to assess the quality of nearby health care alternatives. Make a short list with office hours and phone numbers for future reference.
Where is the best local hospital? Devise an emergency plan for urgent needs and be sure your student knows how to get to the closest urgent care center and hospital, as well as when to use each one. If possible, visit the facilities in person so your child can get familiar with the facility and learn where to go and how to check in without the pressure of a crisis situation.
By approaching the topic of your college student’s health care together, you can help ensure your child has the information necessary to begin managing personal care. In the process, you can also be assured that you’re identifying health centers that share your commitment to the very best care for both the mind and body of your student.
Photo courtesy of Getty Images
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