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 and ulcerative colitis are the two most common types of inflammatory bowel diseases (IBD). These chronic conditions produce similar symptoms, use similar therapies, and are both treatable. However, they are not the same.

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?
Despite the differences between Crohn’s disease and ulcerative colitis, both can produce similar symptoms when active, all brought on by chronic inflammation. Symptoms may include diarrhea, rectal bleeding, urgent need to move bowels, abdominal cramps and pain, sensation of incomplete evacuation, and constipation.

“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?
When IBD is diagnosed in childhood, it may be more extensive and follow a more severe course than when it is diagnosed in adulthood. While symptoms are similar in adults and children, some children with IBD experience delayed puberty and some fail to grow at a normal rate. Dealing with disease relapses, frequent doctor visits, hospitalizations, treatments, and even surgery, many children with IBD miss significant school time and social activities.

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?
It is possible to live a full, rewarding, happy, and productive life with IBD. Treatment begins with finding a pediatric gastroenterologist you trust. Your child’s IBD treatment may ultimately involve a wide range of therapies including medication, nutritional adjustments, and surgery.

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?
For young adults, managing IBD may be particularly challenging, and this stage may be further complicated by the transfer of care from a pediatric health care team to an adult health care team. If you have a child taking the next steps into adult care, consider sharing these tips from the Crohn’s & Colitis Foundation and visit crohnscolitisfoundation.org/campus-connection to help your young adult become independent in his or her IBD management:

• Understand your disease and how it affects you personally, including your typical symptoms and signs of a flare. Also, be sure you understand when and how to contact your health care team.

• Know your medications and how much you take. This is especially important when you see other doctors so they can help you avoid medicines that don’t work well with your IBD medications.

• While a parent is still involved, practice becoming your own advocate with your doctor and others, such as school administrators. Ask questions and take an active role in your treatment.

• When your doctor orders tests or procedures, be sure you understand any preparations that are required, and be sure to follow up so you understand the results and any changes necessary to your treatment.

• If you move, enroll in a new insurance plan, or travel, know what medical services will be accessible and covered so you can make the best decisions about your health.

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How to Reduce Health Risks by Understanding AFib

(Family Features) Oftentimes, seeking to improve your health starts at your core – your heart. One common condition to be aware of is atrial fibrillation (AFib), which is a quivering or irregular heartbeat that can lead to blood clots, stroke, heart failure and other heart-related complications.

Currently impacting up to 6.1 million Americans, AFib is projected to double by 2030, according to the American Heart Association. One in three individuals is at risk for developing AFib over the course of his or her lifetime, and the likelihood of developing the condition increases by almost 40 percent after the age of 55.

The average person living with AFib has a five-fold increase of experiencing a stroke than someone with a regular heartbeat. However, proper diagnosis and treatment can help reduce the chances of associated heart health complications, including stroke.

The first step toward managing AFib and preventing serious health complications is gaining knowledge about the condition. The experts at the American Heart Association are working to elevate awareness with these facts:

Causes
While in some cases the cause is unknown, AFib can be the result of damage to the heart's electrical system from other conditions such as longstanding, uncontrolled high blood pressure, obesity, smoking and heart disease. For example, smokers are 20 percent more likely to develop AFib than nonsmokers.

Symptoms and signs
A person living with AFib may have symptoms like a fluttering heartbeat, but he or she may not have symptoms at all. Nearly 80 percent of people who report having AFib note they did not experience symptoms, which can lead to the condition being overlooked or confused with other conditions, such as anxiety.

“Atrial fibrillation can be challenging to diagnose,” said Dr. Georgeanne Freeman, a board-certified family medicine doctor and American Heart Association volunteer expert. “If you are feeling out of the ordinary, whether it's a racing pulse or irregular heartbeat associated with shortness of breath and fatigue, it’s time to speak with your doctor to learn your risk for AFib and lower your chance for stroke.”

Other common symptoms include dizziness, weakness, faintness or confusion; fatigue when exercising; sweating and chest pain or pressure.

At-risk populations
Anyone, at any age, can develop AFib. People over age 50, those with high blood pressure or other forms of heart disease and those with a family history of the condition are at highest risk and should discuss their medical history with their doctors.

People of African, Asian or Hispanic ancestry are typically less likely to suffer from AFib. However, research suggests that those with African or Hispanic ancestry living with AFib have a higher risk of death when the condition is combined with another factor such as heart failure or high blood pressure.

Risk factors
While some people living with AFib are unaware of the condition due to not experiencing symptoms, it causes the heart to beat erratically, stops blood from moving through the heart efficiently and may result in pooling or clotting. The clot may block blood flow to the brain, causing a stroke. Risk factors such as age, high blood pressure, heart failure, diabetes or medical history contribute to individuals’ five-fold risk of stroke.

Treatment options
Although most primary care providers claim to have general knowledge of AFib, there are still challenges in their abilities to diagnose it. The treatment goals start with a proper diagnosis through an in-depth examination performed by a medical professional, health care provider or cardiologist. The exam usually includes questions about the individual’s medical history and often a test such as an EKG or ECG to determine heart rate, rhythm and other information. If you have AFib, understand your options for medications and discuss with your doctor. Anyone on anticoagulants should carry information and be able to alert medical professionals in an emergency that he or she is on blood thinners.

To learn more and to access AFib tools and resources, visit heart.org/AFib.

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Choosing the Right Doctor for You and Your Family

(Family Features) What matters to you when finding a doctor to treat you or your family members?

A recent survey commissioned by the American Board of Medical Specialties found that four out of five people ranked Board Certification as an important factor when selecting a doctor, second only to whether the doctor is covered by their insurance.

Choosing a new doctor is an important decision that nearly everyone experiences at one time or another, whether it’s finding a new family physician or pediatrician after a move or searching for a specialist after being diagnosed with a condition such as heart disease, diabetes or cancer.

When selecting a physician, you want to know the doctor you choose is qualified and that you and your family will receive the best care. Board Certified doctors hold themselves to a higher standard and have demonstrated their knowledge and expertise in their specialty. This higher standard has been found to be important to patients.

“Choosing a doctor is one of the most important decisions you’ll make regarding your health,” said Richard E. Hawkins, MD, president and chief executive officer, American Board of Medical Specialties (ABMS), the leading not-for-profit organization overseeing physician certification in the United States. “Today’s patients have a greater expectation for quality. Board Certified physicians offer people confidence that their doctor has the specialized knowledge, skills and clinical judgment to provide the high-quality care they expect and deserve.”

What is Board Certification?
Board Certification is recognized as the premier standard and assessment system for specialty and subspecialty expertise in medical, surgical and hospital disciplines.

• Board Certified doctors are experts in their specialties. Doctors who choose to be Board Certified are required to demonstrate their specialized knowledge in their area of practice.

• Board Certified doctors have met a higher standard. To be Board Certified, doctors successfully complete extensive training and assessment beyond that of their non-Board Certified peers.

• Not all doctors are Board Certified. Board Certification is voluntary, and more than 880,000 doctors in the United States are ABMS Board Certified in 40 specialties and 87 subspecialties.  

• Find out if a doctor is Board Certified. This simple search tool allows you to check if your doctor, or one you are considering, is Board Certified. CertificationMatters.org, a website of ABMS, also features information about how doctors earn Board Certification, its importance to quality care and why the credential matters. Additional resources include links to prominent health care and consumer advocacy organizations.

To find a Board Certified doctor near you, visit CertificationMatters.org.

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