Although Crohn's disease and ulcerative colitis in children are similar in many ways to IBD in adults, the way the disease presents and the way it is managed require special consideration.
Disease Type
When inflammatory bowel disease is recognized in very young children under 5 years of age, the inflammation is usually in the colon. This colitis could be either chronic ulcerative colitis or Crohn's colitis. In very young children, the appearance of the disease in the colon is not as well-defined as in teenagers and adults, making it harder to distinguish the type of colitis.
Outside of the preschool age group, the percentage of children and teenagers with Crohn's disease or ulcerative colitis is similar to the percentage observed among adults in the same geographic region. In North America, for example, Crohn's disease occurs more commonly than ulcerative colitis in adults and in older children and teenagers.
Intestinal Location
The locations of the disease in the intestinal tract are somewhat different in children than in adults, although there is a large degree of overlap. In children with ulcerative colitis, the disease most commonly involves the entire colon (pancolitis or extensive colitis), whereas, in adults, up to 50% of ulcerative colitis sufferers will have inflammation limited to the last part of the colon and rectum.
In children with Crohn's disease, just as in adults, different parts of the intestinal tract can be inflamed. Apart from the very youngest children, the percentage of children and adolescents with small intestine, large intestine, and combined small and large intestine involvement with Crohn's disease seem to be similar to that of adults. Involvement of the upper part of the small intestine (jejunum) is not common in children (occurs in less than 10%), but it may be more common in children than in adults.
Growth and Development
Chronic diseases in children may affect growth and development. Not only the disease itself but also the treatments can pose problems.
Disease Effects
Inflammatory bowel disease itself can have a very important negative effect on growth, even before the disease is diagnosed. A child can experience poor growth for several years before Crohn's disease is recognized and treated.
A fall off in growth rate that occurs before a child develops symptoms, such as abdominal pain or diarrhea, may be very puzzling for the pediatrician and parent. The reason may only become apparent once other symptoms develop and a diagnosis of IBD is made. This effect on growth is much more commonly seen in Crohn's disease than in ulcerative colitis. The reasons for the difference are not well understood.
Drug Side Effects
Historically, many of the treatments used in adults have also been used in children, sometimes without solid proof that these treatments are as effective in children as they are in adults. Not all drugs commonly used in adults are necessarily desirable to use in children because of their potential for side effects and the concerns about long-term safety or delayed effects that may be observed many years after the drug is taken.
Steroids: Steroid medications, such as prednisone, are very effective at reducing the intestinal inflammation in both Crohn's disease and ulcerative colitis and, as a result, they can improve symptoms, such as abdominal pain, diarrhea and rectal bleeding. However, in children they also have the potential to reduce growth noticeably, if they are used for extended periods.
Immunosuppressants: In Crohn's disease, there has been an increasing tendency to use immunosuppressive medications, such as azathioprine and 6-mercaptopurine, whenever a child requires steroids to bring their disease symptoms under control. When effective, these drugs will allow the child to taper off of the steroid without relapsing and will reduce the need for further courses of steroids over a period of several years. This avoidance of steroids may be very important in allowing the child to grow normally and reach full height potential.
TIP: Doctors who treat children with Crohn's disease and ulcerative colitis will prescribe steroid medications for a significant flare-up of IBD, but they are careful to avoid long-term use of steroids, recognizing that this would have negative effects on growth.
Delayed Puberty
A slowing of growth in height is usually associated with a delay in pubertal development as well. Keeping pace with the growth and development of one's friends can be very important to the self-esteem of a child with IBD. When a child's friends are growing rapidly and developing the physical characteristics of a mature woman or man, the child with IBD may still have the stature and appearance of a younger child. This can make it very difficult for the children to fit in with their peers and, unfortunately, can make it more likely that they will become the target of teasing or even bullying. Physical appearance problems may be compounded by the effect of a medication, such as prednisone, which can cause delayed growth, weight gain, and rounding of the face.
Inflammatory Proteins: Growth delay and the associated delay in pubertal development result from a number of different but interrelated factors. The most important factors seem to be inflammatory proteins produced by the diseased bowel. These proteins can have many effects, including reduction of appetite and thus food intake, and interference with growth hormone pathways. Controlling the activity of the disease through the appropriate use of medications or surgery, avoiding certain medications, such as steroids, and maintaining good nutrition can help to optimize a child's growth.
Irregular Periods: Once a girl has reached puberty and menstrual cycles have started, it is not uncommon for her to experience irregular periods or even to have her period stop, particularly when she is experiencing a disease flare. Encourage your daughter to bring this issue to the attention of her doctor because irregular or absent menstrual periods may interfere with her developing strong bones. This, in turn, may lead to an increased risk of osteoporosis later in life.
Long-Term Treatment
Both Crohn's disease and ulcerative colitis are chronic disorders that cannot be cured by medical or nutritional therapy. Although surgery can be 'curative' for ulcerative colitis, it is not a perfect solution because of early and late complications.
For every drug developed for the treatment of IBD, there are concerns about the delayed or long-term consequences of being on the medication, particularly if it is used continuously and if it is used from an early age. These effects cannot always be predicted based upon our knowledge of how the drug works, and they may not be apparent for many years after the drug is available for general use. As a result, the use of any new medication for the treatment of IBD is likely to involve a certain amount of risk taking, particularly when used in children.
An area of specific concern in children is the use of immunosuppressive medications. Although this class of medications has a very good safety record, they do, as their name suggests, suppress the body's immune system to a certain extent and, as a result, can lead to a slightly increased risk of infections. In addition, there is some evidence to suggest that aza-thioprine and 6-mercaptopurine (6-MP) result in a slightly increased risk of lymphoma (cancer of the lymph glands).
This cancer is quite uncommon. Even for individuals taking azathioprine or 6-MP, the risk is still very small — probably somewhere in the range of 1 in 5,000 to 1 in 10,000. Many IBD patients and their families are willing to accept these small potential risks, particularly if there is immediate benefit to be had by being on the medications.
Psychological Issues
For parents, it's tough enough raising a child without having to deal with a chronic illness, such as IBD. The addition of IBD to the mix creates some special psychological challenges to the parent-child relationship.
Parenting Styles
Different parents have different ways of reacting to illness in a child. There is no absolute wrong or right way of interacting with a child with a chronic disease as long as a supportive and caring environment is maintained. IBD is a challenge that should be approached together as a family.
Growing Independence
Working with a child with IBD depends on the age of the child. In younger children, parents have to take a very active role in the monitoring and management of the disease. However, this should be done in a supportive way so as not to be intrusive or smothering. Children should have enough 'room' to become independent over time, eventually taking an active role in managing their disease.
Team Approach
Taking a 'team' approach with children, whereby they are given a certain degree of defined responsibility for monitoring and managing their disease, is frequently an effective parenting strategy. This responsibility may involve remembering to take medication at certain times or reporting back to the parent about any unusual symptoms.
Positive Reinforcement
Positive reinforcement through encouragement and by providing small inexpensive rewards, such as stickers, can be helpful in keeping the child interested and active in disease management. Ultimately, you hope your child take on these roles without these rewards by realizing that being proactive works well in management of the disease.
Adolescence
The relationship between a parent and a child changes considerably, and may become more challenging in the face of a chronic disorder, as the child enters adolescence. In adolescence, the importance of family relationships may diminish while the importance of friends and peers increases. When adolescents have IBD, the natural tendency of parents to be closely involved in their care may fly in the face of their desire to become more independent. This can be a source of tension between parent and child.
The adolescent may use the management of the disease as a means of asserting independence, sometimes with negative effects when, for example, asserting one's independence means not taking prescribed medications (or not telling parents whether the medication has been taken), not being open about symptoms, and not attending appointments with doctors. There is no easy solution to this problem, but when it occurs, these acts of rebellion tend to be part of a larger pattern of independent behavior. Approaching the overall situation rather than specifically focusing on the disease and its management may be an effective way of improving cooperation.
Adolescents may also become angry and frustrated with the disease — the symptoms, the examinations, the medications, and the occasional hospitalizations. Just when they are trying to be like their friends, the disease reminds them that they are, in some ways, different. In addition, the flares of disease and the associated symptoms may get in the way of their ability to attend school regularly and to take part in typical adolescent social and leisure time activities — sports, parties, dating, or just hanging out with friends. Although it may sometimes be difficult to connect with an adolescent, parents, teachers, and friends can all help at these trying times.
