Thursday, November 08, 2007
If your child has just been diagnosed with Crohn's disease, you may have many questions and concerns. Here are 10 questions for parents of a child with Crohn's disease. Crohn's disease is one of the inflammatory bowel diseases (IBD), a class of conditions that causes inflammation of the intestinal wall. Crohn's usually occurs in an area called the ileum, where the small intestine ends and connects to the large intestine, but it can show up anywhere in the digestive system. Doctors describe five forms of Crohn's disease, based on location:
- Ileocolitis Crohn's disease: the most common form, it affects the lower part of the small intestine as well as the large intestine.
- Jejunoileitis Crohn's disease: occurs in patches along the upper half of the small intestine, an area known as the jejunum.
- Ileitis Crohn's disease: affects only the lower part of the small intestine, the ileum.
- Crohn's colitis: affects the large intestine only.
- Gastroduodenal Crohn's disease: affects the stomach and the first part of the small intestine.
Symptoms of Crohn's disease in children and adolescents often appear suddenly with persistent crampy diarrhea and abdominal pain. Children who have less obvious symptoms may show signs of delayed growth due to malabsorption and mild diarrhea. Most symptoms of Crohn's disease in children, however, are similar to those in adults and include:
- Crampy pain in the abdomen, often on the lower-right side
- Persistent diarrhea
- Weight loss
Other symptoms include:
- Loss of appetite
- Rectal bleeding
- Anemia, if bleeding is serious and persistent
- Joint pain
- Skin or eye problems
How Did My Child Get Crohn's Disease?
Doctors don't yet know exactly what causes Crohn's disease, or why some children get it. Anyone can develop Crohn's – it affects men, women and children. But about 20 percent of people with Crohn's disease have a close family member with an inflammatory bowel disease.
Researchers suspect that Crohn's inflammation may be the result of several factors working together, including a person's genes, their immune system and something in the environment, such as a bacteria or virus that may switch on a person's immune system. Because the immune system may not turn off correctly, this causes ongoing inflammation.
How Is Crohn's Disease Diagnosed in Children?
There is no single test to diagnose Crohn's disease in children or in adults, which can make diagnosis difficult. Healthcare providers most often give children a thorough physical examination, take a medical history to identify abnormal growth patterns, and do one or more of the following tests:
- Blood tests: Doctors may check for anemia, which can be a sign of bleeding in the intestines. They may also order a white blood cell count, an erythrocyte sedimentation rate (ESR) and a C-reactive protein (CRP) test to look for inflammation.
- Stool samples: Doctors may test a stool sample for signs of bleeding and infection.
- Upper gastrointestinal series: These X-rays look for irregularities in the intestinal wall that may indicate inflammation.
- CT scan: CT scans of the abdomen may also be performed to look for an active infection or abscess.
- Endoscopic procedures (colonoscopy, sigmoidoscopy): In these procedures, a thin, lighted tube with video camera attached looks for inflammation or bleeding in the intestines. The diagnosis is usually made by finding a characteristic appearance on endoscopy in a patient with a compatible history. If doctors see a suspicious area, they may remove a sample of tissue to examine under a microscope.
How Can I Tell If My Child Is Not Growing As Expected?
If children develop Crohn's disease before puberty, they may experience delayed growth, which means they aren't meeting expected height and weight standards for their age. Children with Crohn's disease may be shorter than most of their classmates, for example, and might not outgrow their clothing very fast.
Pediatricians measure a child's height and weight at regular visits and this information, along with other signs and symptoms, can help identify any delays in growth. Even if a child's growth is delayed because of Crohn's disease, most teenagers with Crohn's do reach the average height by their 20s.
What Medications Are Prescribed for Children with Crohn's Disease?
Although there is no cure for Crohn's, treatment can help relieve symptoms. Treatments for children are based on adult treatments. However, many of these medications have not gone through formal testing in children. Children require individualized plans that consider the severity and location of the Crohn's inflammation and the child's weight and school schedule, as well as possible side effects of the medications. The goals of treatment for children with Crohn's disease are to control inflammation, promote normal growth with adequate nutrition, and allow the child to live as normally as possible. Medications for Crohn's disease are typically prescribed in order from least aggressive to most aggressive, depending on symptoms, and may include the following classes:
- Aminosalicylates: Mild to moderate Crohn's disease often responds to aminosalicylics, also called 5-ASAs. Aminosalicylates release an anti-inflammatory medication inside the intestine.
- Steroids: Steroids, such as Deltasone and Orasone (prednisone) or Medrol (methylprednisolone), work by controlling inflammation and can help soothe flare-ups. But they also cause serious side effects, so they are usually not used long-term.
- Antibiotics: Sometimes used in Crohn's disease even though researchers have not identified a bacterium as a cause of Crohn's, they may help control inflammation by reducing bacteria levels and suppressing the immune system.
- Immunosuppressant agents: They block immune system activity that may cause Crohn's disease symptoms and are sometimes used when other therapies fail to help patients, or in patients who develop fistulas.
- Biologic therapies or biologics: Biologics are engineered to target specific proteins in the body. Remicade (infliximab) is the only FDA-approved biologic for use in children (ages of 6 to 17) with Crohn's disease.
Will My Child Outgrow Crohn's Disease?
Unfortunately, no. Crohn's disease is a lifelong illness marked by periods of relapse and remission. During relapses, symptoms worsen. During remissions, they improve. The time between relapse and remission is as individual as the children who have Crohn's disease, and neither can be predicted. Sometimes people can be symptom-free for years or even decades, but symptoms usually return.
How children experience the disease varies greatly, too. Some have mild cases with few symptoms and long periods of remission. Those with severe cases are bothered by symptoms almost constantly.
Should My Child Be on a Special Diet for Crohn's?
There is no evidence that either certain foods or stress cause Crohn's. But during flare-ups, both stress and particular foods may make symptoms worse for some people.
Most doctors recommend that children eliminate only foods they are convinced make their Crohn's symptoms worse based on past experience. If your child does eliminate a specific food or food group, it's helpful to meet with a registered dietician to ensure he is still getting proper nutrients.
Because the symptoms of Crohn's disease can make it hard to get enough nutrients through food alone, and the intestinal inflammation may limit how much of those nutrients are absorbed, your child's doctor may recommend nutritional supplements. Nutritional requirements and recommendations will depend on you child's age, gender, physical activity and symptoms.
Should My Child Tell Friends, Teachers or Coaches About Crohn's Disease?
The decision to tell others about Crohn's disease is one that a child needs to feel comfortable with, but because children spend so much time in school, most experts recommend that teachers, coaches and the school nurse be told about the child's illness.
Children report that the most stressful part of living with Crohn's is the frequent and urgent need to use the bathroom at school. Being stopped, questioned or ridiculed about their bathroom use only makes matters worse and may even lead to accidents and further embarrassment. Explaining the situation often makes it much easier for a child to have easy access to the bathroom or the school nurse as needed, which can make school days less stressful.
Telling friends about Crohn's is something kids need to do on their own terms and with as much information as they feel comfortable sharing. Children can be insensitive and even cruel about the embarrassing symptoms of Crohn's, and your child may not want to share this information or may want to tell only very close friends. Parents should never pressure a child to tell friends about the illness.
How Can I Help My Child Live Well with Crohn's Disease?
The diagnosis of a chronic illness is difficult for anyone, but for children it can be especially hard. As a parent, you can help you child by becoming educated about the disease and providing appropriate resources and emotional support. Other things you can do:
- Let your child express their emotions and fears about living with Crohn's disease
- Avoid becoming overly protective by encouraging your child take responsibility for some aspects of their care.
- Encourage your child to ask questions and talk with their healthcare providers in order to feel more in control of Crohn's disease.
- Facilitate an open dialogue with teachers, coaches or school nurses, and encourage your child to talk with them directly about his symptoms and daily needs.
- Let your child decide if, when and how he wants to tell friends about Crohn's.
- Help your child prepare for social events by finding out where the restrooms are in restaurants, shopping areas, theaters or parks.
- Have your child bring along a change of clothing when they go out.
- If your child shows signs of psychological stress, such as withdrawal, depression or anger, consider visiting a counselor or psychologist who is works with children with Crohn's.
- Consider looking into a summer camp for kids with Crohn's disease, such as CCFA Camp Oasis, where they will meet other kids with the illness and learn valuable coping skills.
Where Can I Get Information to Help My Child Live Well with Crohn's?
You can find the latest news about Crohn's research on HealthTalk and from non-profit and government-sponsored Web sites and research centers such as those listed here: