Crohn's Disease in Children and Teens

The child's evaluation will start with a medical interview and physical examination. The parents or caregivers will be asked questions about the child's:

• symptoms and how they started,
• current medical problems and those in the past,
• current medications now and those in the past,
• family medical problems,
• diet,
• habits, and
• lifestyle.

The physical examination will include careful touching of the abdomen and possibly of the rectum. The child's physical growth and sexual development will be assessed. At any time during the evaluation, the child may be referred to a gastroenterologist (a doctor who specializes in diseases of the digestive tract).

Lab tests

There is no lab test that can absolutely confirm that a child has Crohn's disease. Blood tests may be done to look for evidence of the disease, such as inflammation, anemia, or nutritional deficiencies. A stool sample may be collected to look for blood or signs of infection.

Imaging studies

The child may undergo imaging studies to detect the extent of the disease and any complications that may have developed.

• Barium contrast studies: This consists of a series of X-rays taken after the child drinks a contrast material containing a chalky substance called barium. The barium allows the intestine to show up better than on a plain X-ray. Barium studies are very useful in defining the nature, distribution, and severity of the disease. Barium studies may include an "upper GI series" (X-rays of the upper part of the digestive system) and a "small bowel follow-through" (X-rays of the small intestine).
• Barium enema: This works on the same principle as the barium contrast studies of the upper digestive system, but the barium is introduced into the lower digestive tract through the rectum. This test is occasionally done to see whether the colon and rectum are involved, and to what extent.
• CT scan or, in some cases, ultrasound is helpful in assessing complications outside of the intestine, such as fistulas, an abscess, or abnormalities of the liver, bile duct, or kidneys. MRI may be used instead.
• Radionuclide-tagged white blood cell scan can be very useful in defining the location and extent of the disease.

Endoscopy is always necessary to make a definite diagnosis.

• Endoscopy involves inserting a thin tube with a light and a tiny camera at the end into a body cavity or organ. The camera transmits pictures of the inside of the organ so that the doctor can see inflammation or bleeding or other signs of disease.
• Both the upper and the lower parts of the digestive tract can be examined endoscopically. Endoscopy of the lower part of the digestive tract is called colonoscopy. Endoscopy of the upper digestive tract is usually called upper endoscopy.
• In both cases, the doctor can use the endoscope to take a biopsy. A biopsy is a tiny sample of tissue taken from the superficial lining on the inside of the digestive tract. These tissues are examined under a microscope by a pathologist (a doctor who specializes in diagnosing diseases by examining tissues and cells in this way).

Endoscopic retrograde cholangiopancreatography (ERCP) is helpful for both diagnosis and treatment in people who have Crohn's disease of the pancreas or bile ducts.

Staging

Medical professionals who care for people with Crohn's disease use various systems for tracking symptoms and responses to treatment over time. The Pediatric Crohn's Disease Activity Index (PCDAI) was developed for children and adolescents in 1990 from a similar scale used for adults. The child's health care professional may use this scale to find patterns in disease severity and adjust treatment.

The general goals for treatment of children with Crohn's disease are:

1. Achieve the best possible control of the disease with the fewest and mildest treatment side effects
2. Promote growth through adequate nutrition
3. Permit the child or teen to live "a normal life" of school, sports, and other activities.

A child with Crohn's disease should be treated by a team of experts consisting of a primary healthcare professional, a gastroenterologist, a nutritionist, a social worker, nurses, and a psychologist/counselor and other professionals as needed. A critical factor in successful management of this disease is the family's willingness to participate and cooperate with the team.

Any self-care regimen should be based on the instructions given by the medical team. Parents and caregivers can best help a child by learning all they can about Crohn's disease, understanding how the disease affects a child, and providing support, encouragement, and reassurance to the child. Children who are old enough should be encouraged to learn about their disease and participate in the decisions about their care. Parents and caregivers also play an important role in making certain that the child takes all medical treatment as directed, and gets adequate nutrition.

No special diet is required for children with Crohn's disease. The only rule is to avoid any food that makes the symptoms become worse. This varies from person to person, but foods that cause problems for many people are

• milk and other dairy products,
• spicy foods, and
• high-fiber foods.

Since they can block the intestine. Patients should avoid foods that are difficult to digest, such as

• uncooked vegetables,
• popcorn,
• seeds, and
• nuts.

Children and teens with Crohn's disease should remain as active as possible. There is no need to limit a child's physical activity. The only exception is children who develop weak bones or osteoporosis from long-term steroid use. Because their bones may break more easily than usual, they should avoid contact sports.

Do not give a child vitamins and mineral supplements without an OK from the child's health care professional. Ask about giving the child nonprescription medications such as diarrhea remedies, pain relievers, fever relievers, cold and cough medications.

Presently, there is no cure for Crohn's disease. The goal of treatment is to control the disease by (1) minimizing the number and severity of flares, (2) inducing and maintaining remission, and (3) preventing complications. The drug, biological, and nutritional therapies are the foundations of treatment, but therapy must be tailored for each individual child. The following drugs are most widely used in children with Crohn's disease. Unfortunately, many of these have not been formulated especially for children, and it may take some time to adjust the dose and schedule for each child.

• Aminosalicylates: This is a group of drugs containing 5-aminosalicylic acid (5-ASA). These drugs are related to aspirin and have similar anti-inflammatory effects. They relieve symptoms and maintain remission in many cases with mild or moderate Crohn's disease. They are usually the first choice of treatment because of their relatively mild side effects. Some newer forms of these drugs are designed to work only in the small intestine. This allows the medicine to target only the damaged tissue, avoiding healthy tissues and reducing side effects. Enema and suppository forms are available for children with diseases of the lower colon and rectum. Examples include mesalamine (Asacol, Pentasa, Canasa, Rowasa), balsalazide (Colazal), sulfasalazine (Azulfidine), and olsalazine (Dipentum).
• Antibiotics: Treatment with certain antibiotics is helpful in some children with mild to moderate Crohn's disease, especially those with the disease of the lower colon, rectum, and/or anus. Examples include metronidazole (Flagyl) and ciprofloxacin (Cipro).
• Corticosteroids: These are potent drugs that suppress the immune system and reduce inflammation. They are usually not the first choice of treatment because they have many side effects, including suppression of growth. They are reserved for moderately severe to severe cases of the disease. In children, they are typically given over a short period to control a severe flare. They are usually given in addition to, not instead of, an aminosalicylate. In some cases, only corticosteroids can control the disease. Children with "steroid-dependent" disease must take these drugs regularly in small doses. Examples include prednisone (Deltasone, Orasone), methylprednisolone (Medrol, Solu-Medrol), budesonide (Entocort), and hydrocortisone rectal enemas (Cortenema).
• Immunomodulators: These drugs interfere with the immune system and suppress immune responses. They usually are not the first choice of treatment because of their side effects, but they are preferred to steroids in children and teens with moderately severe or severe disease. They often are used to treat steroid-dependent disease and disease that does not get better with steroids. They can reduce symptoms, maintain remission, and improve growth. Examples include 6-mercaptopurine (Purinethol), azathioprine (Imuran), and methotrexate (Folex PFS, Rheumatrex).
• Biologic therapies duplicate or enhance natural processes in the body to fight disease. Scientists are finding ways of harnessing the body's natural immune system to fight the inflammation of Crohn's disease. One important newer therapy fights the action of an immune factor called tumor necrosis factor-alpha, which may promote inflammation in Crohn's disease. These agents are used to treat active disease and fistulas. These have typically been given intravenously, although a newer medication can be administered subcutaneously at home. Examples include infliximab (Remicade) and adalimumab (Humira).
• Nutritional therapy is another important part of the treatment of Crohn's disease. Children who receive appropriate medical therapy and adequate nutrition often experience a dramatic reversal of symptoms and increased growth. The exact treatment of nutritional deficiencies depends on the specific situation and should be tailored for each individual child. The child's health care professional can make recommendations. Parents and caregivers may want to consult a nutritionist to devise a plan for meeting the child's nutritional needs. A high-calorie, well-balanced diet is ideal, but many children with Crohn's disease cannot eat enough to supply all of their nutritional needs.
• Other therapy options include high-calorie formulas and other supplements; and overnight continuous feeding through a nasogastric tube (which goes through the nose to the stomach), gastrostomy tube (which goes through the skin into the stomach), or, less commonly, vein (intravenous or parenteral feeding). In some cases, overnight continuous feedings can be implemented as an effective treatment of Crohn's disease, resulting in decreased inflammation and less disease activity as well as improved growth.

Surgery usually is considered when medical therapy has failed and complications develop. In these children and teenagers indications for surgery include

• growth failure,
• obstruction,
• abscess,
• fistula,
• hemorrhage, and
• perforation

The usual operation is to remove a section of the intestine (resection) or widen the narrow segment of the intestine (stricturoplasty). Such a "resection" is not a cure, however, since Crohn's disease often recurs after surgery.

The child or teen with Crohn's disease should have regular visits with his or her healthcare team. The purpose of these visits is to

• reduce symptoms,
• achieve or maintain remission, and
• prevent complications.

These visits allow the team to monitor symptoms, check for side effects, and adjust treatment if necessary. These visits also allow the parents to communicate any problems to the child's care team. Any emotional or behavioral problems should be reported as well as any physical problems.

Crohn's disease usually can be managed on an outpatient basis. Children and teens with the disease are not routinely admitted to the hospital. Hospitalization is warranted if there is any suggestion of a serious complication (obstruction, perforation, abscess, hemorrhage) or a need for intravenous medication in a severe flare.

Crohn's disease is a serious disease that may have a big impact on the life of a child or teen.

Crohn's disease usually is not a fatal disease, and with appropriate treatment and support, most children do very well and are able to attend school and participate in sports and daily activities.

There is no cure for Chron's disease.

There is no known way of preventing Crohn's disease.

Living with the effects of Crohn's disease can be difficult. Sometimes you or your child may feel frustrated, perhaps even angry or resentful. Oftentimes it helps to have someone to talk to about their situation.

Support groups consist of people in a similar situation. They provide reassurance, motivation, and inspiration. They help you see that your situation is not unique, and that gives you power. They also provide practical tips on coping with this disorder. Support groups are valuable to parents, siblings, and the affected child, especially teens.

Support groups meet in person, on the telephone, or on the Internet. To find a support group that works for you, ask your health care provider or contact the following organizations or look them up on the Internet. If you do not have access to the Internet, go to a public library.

• Crohn's & Colitis Foundation of America, Inc. - (800) 932-2423 or (212) 685-3440
• Reach Out for Youth with Ileitis and Colitis, Inc. - (631) 293-3102