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.

Photos courtesy of Getty Images

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.

Photo courtesy of Getty Images

The Rarest of the Rare

What to know about a cancer you may not have heard of

(Family Features) A woman celebrating her 40th birthday, a young boy starting second grade or a college grad about to begin his career. All three could develop a rare form of cancer known as epithelioid sarcoma (ES), a form of soft-tissue sarcoma.

There is little information available about ES. Patients, advocates, doctors and researchers across the United States are aiming to educate people about this ultra-rare cancer and the unmet need for an effective, tumor-specific treatment. Consider these facts about ES:

What are Soft-Tissue Sarcomas and What is Epithelioid Sarcoma?
Soft-tissue sarcomas (STS) are a type of cancer that occur in tissue like muscle, fat, skin, nerves and blood vessels. There are more than 50 types of STS, including ES, which is a rare form that can occur under the skin in the limbs (such as the arms, hands, legs or feet) or soft tissue in other places like the abdomen. Adults in their 20s and 30s and men, in particular, are more likely to get ES, although it can affect people of all ages and genders, according to research published in the Journal of Clinical and Aesthetic Dermatology.

How Rare is Rare?

According to the American Cancer Society, a rare cancer is defined as fewer than six new diagnoses per 100,000 people per year.

ES is an ultra-rare cancer. According to available epidemiology and case reports, it is estimated about 600 people are properly diagnosed in the U.S. and Europe each year.

What are the Most Common Types of ES and How Do They Impact Diagnosis?
ES can take two forms:
Distal-type: Classic form, typically affects teenagers and young adults.

• Typically forms under the skin in areas like hands, legs and feet.
• Can be mistaken for another skin condition like an infected wart or a wound that won’t heal, which may delay diagnosis.
• Proximal-type: Rarer form, mainly affects adults and is more aggressive.
• Typically forms in central areas of the body like the abdomen.
• Can be mistaken for menstrual cramps or an upset stomach, making identification and diagnosis more difficult.

Dealing with a Diagnosis?
Due to its rarity, harmless appearance in its initial stages and occurrence in young people, ES is often misdiagnosed, according to the Liddy Shriver Sarcoma Initiative. For this reason, the Sarcoma Foundation of America recommends checking often for lumps and bumps in places they shouldn’t be.

For people faced with a sarcoma diagnosis, it’s important to get a second opinion from a sarcoma specialist. These specialists have extensive knowledge of STS and can determine what form of sarcoma one may have, what stage it is and the best course of treatment. The specialist may confirm the diagnosis with a physical examination, a scan or a tissue sample (biopsy) of the area.

It’s common to feel a range of emotions after a diagnosis of ES, according to Clear View Health Partners, including:

• Fear
• Denial
• Frustration
• Anxiety
• Hope that treatment will be successful
• Determination to beat ES

What Treatment Options are Available?
Treatment options depend on a variety of factors, including the location of the tumor, tumor staging and whether the disease has metastasized or spread to other parts of the body.

For patients with early stage ES, many elect to have surgery to remove the tumor, which may precede or be followed by radiation therapy or chemotherapy treatment, according to the Journal of Clinical and Aesthetic Dermatology. If the cancer returns or spreads, a patient may undergo radiation therapy and chemotherapy. New treatment options are being studied through clinical research, which is why seeking a specialist in the field is important if one is faced with a diagnosis.

As with many cancers, early detection is important and can increase survival or successful treatment. Typically, the distal form of ES is associated with more favorable survival rates than the proximal form.

4 Things to Do to Address ES Today

1. Don’t ignore your bumps and lumps, see a doctor as soon as possible.

• curesarcoma.org/patient-resources/sarcoma-infographic/  

2. Learn more about epithelioid sarcoma and its symptoms.

• mayoclinic.org/diseases-conditions/epithelioid-sarcoma/cdc-20392420

3. Seek a second opinion.

• sarctrials.org/sarc-centers-map

4. Find support if you’re faced with a diagnosis.

• sarcomaalliance.org/resources/support-groups
• cancersupportcommunity.org
• cancercare.org/counseling

An ES Diagnosis Journey

In the spring of 2008, Maria Voermans’ 4-year-old daughter requested an “airplane ride,” and as Voermans lifted the young girl up with her legs, she had to make an “emergency landing” because of some sudden and significant pain in her upper right thigh.

After a few months, the pain persisted. Voermans continued to jog and play sand volleyball, thinking nothing of it. At the recommendation of her primary care physician, she took some anti-inflammatories and tried to rest, which wasn’t easy to do as a single mother of two young children.

Two more months went by and her leg caused increasing problems. She could feel something in her leg, but never considered it a “lump” because it was not visible on the outside. Voermans took matters into her own hands and visited a sports medicine orthopedic specialist for further testing.

An MRI found a mass in her right leg and she was referred to one of the few musculoskeletal oncologists in Wisconsin, her home state. He ordered a biopsy, which on Voermans’ youngest daughter’s third birthday confirmed her worst fear: it was a rare form of cancer called proximal-type epithelioid sarcoma, and it was stage three. Her biggest concern was not living to experience future holidays, birthdays, graduations and other life milestones with her daughters.

Voermans underwent chemotherapy, radiation therapy and had surgery to remove the tumor. As of July 2018, Voermans reports the cancer has not returned.

Today, she’s a wellness coordinator supporting other people diagnosed with cancer who are undergoing treatment or post-treatment. She’s able to use her own cancer journey to provide empathy to others, and it’s brought satisfaction to the whole experience.

Content courtesy of Epizyme, Inc.

Photo courtesy of Getty Images (Doctor talking to man)

Waking up to go to the bathroom multiple times per night? It’s not because you’re ‘getting old’

(Family Features) It’s a common misconception: the older you get, the more frequently you need to use the bathroom at night. Did you know waking up more than once per night to urinate is a medical condition known as nocturia? Shockingly, 64 percent of American adults do not know.

A recent Harris Poll of more than 2,000 U.S. adults, endorsed by The Simon Foundation for Continence, National Association for Continence (NAFC) and the Prostate Conditions Education Council (PCEC), found that approximately one-third of them suffer from nocturia. Nocturia, which forces individuals to get up more than once per night to urinate, is a leading cause of sleep loss and can put one’s health at risk.

“Before receiving treatment for nocturia, I typically wound up making five trips to the bathroom each night, which I knew wasn’t normal,” said Jack Fagan, a 67-year-old resident of Sewell, NJ. “Treatment has made a noticeable impact on my quality of sleep. I find myself more refreshed and have the energy to enjoy time with family and friends.”

Most people living with nocturia (72 percent) reported they are negatively impacted by the condition at night; 43 percent of whom have trouble falling back to sleep, 12 percent indicated they wake up their partners and 10 percent expressed nervousness about tripping or falling while walking to the bathroom. The impact of nocturia-induced sleep loss can be wide-ranging, affecting physical and mental health. Sixty-one percent of nocturia sufferers experience daytime issues as a result of nighttime urination, including: drowsiness, irritability and reduced productivity and concentration.

Sixty-six percent of nocturia sufferers surveyed have never discussed their symptoms with a healthcare professional; half of respondents reported they thought it was a normal part of aging, and 27 percent believed nothing could be done to remedy the problem.

“We see patients who have suffered with nocturia for many years, as it slowly progresses from getting up twice to over four times per night to urinate,” said Roger Dmochowski, M.D., a nocturia sufferer and professor within the department of urologic surgery at Vanderbilt University Medical Center. “In my personal and professional experience, nocturia can have serious implications for an individual’s emotional state and daily life, due to sleep disruption, if not diagnosed and treated. Up until recently, we didn’t have effective treatments.”

For more information on nocturia, visit www.whatisnocturia.com, or  www.simonfoundation.org/nocturia.

The Harris Poll survey was funded by Avadel Pharmaceuticals and Serenity Pharmaceuticals.

Photo courtesy of Getty Images