Pediatric urologists are beginning to recognize IC in children. However, diagnosis can be challenging because many urologists do not think that IC does exist in the pediatric patient population, or that it is exceedingly rare. It is often difficult for children to obtain proper diagnosis, and this may require consultations with several specialists.
The symptoms of IC in both children and adults are similar. In fact, a large number of adults with IC report having had urinary problems as children. Children may also have other chronic conditions such as muscle and joint pain, fibromyalgia, vulvodynia (in girls), migraines, allergic reactions, and gastrointestinal problems. Also, some children with IC may be diagnosed with reflux (urine backs up into kidneys), enuresis (bedwetting), or incontinence.
Children with IC and their parents can have an especially difficult time trying to convey the debilitating effects of IC to other parents, children, school officials, daycare employees, and healthcare providers.
Many children with IC are prone to frequent absences from school because of the nature of the illness. Frequent visits to medical specialists also create missed schooldays. It can be helpful to meet with school officials and your child’s teachers to explain the problem in advance, as well as to provide ongoing updates on your child’s condition. Contact the ICA for information that can provide a better understanding of the scope and nature of the problem.
Children with IC will need extra restroom breaks. It is not uncommon for a child with IC to have to urinate several times within a one hour time period. This may vary from day-to-day, as well as from child-tochild. It would be helpful to meet with your child’s teachers to explain the need for these extra breaks.
This disease can be quite embarrassing for anyone, especially for children. They may be teased by other children and singled-out or ridiculed. Discussing the problem with your child’s teacher is the best first step to prevent such occurrences.
Communicate directly and often with your child’s health-care team, as well as his or her teachers, principal, school nurse, gym teacher, etc. Your child’s symptoms may be misinterpreted or misunderstood. Their symptoms may be dismissed or labeled as psychosomatic. The child or the parents may be unjustly blamed. Although IC can be aggravated by stress (as can many chronic conditions), IC is not caused by stress, nor is it an “imagined” condition. IC is a very real, physical condition.
Reassure your child that IC is treatable. Children are natural worriers and will need constant reassurance from you in order to cope with the daily demands of having a chronic illness.
Join the ICA. Contact us and we can help you:
- Find the best possible medical care for your child. The ICA Healthcare Provider Registry includes pediatric urologists, as well as other knowledgeable healthcare professionals.
- Put you in contact with the parents of other chilren with IC.
- Learn everything that you can about your child’s condition and how to treat it.
- Find out about self-help strategies that may help ease your child's symptoms, such as changes to diet. Some foods that can cause IC flares include pizza, lemonade, carbonated and caffeinated beverages such as sodas (Mountain Dew, Coca-Cola, Pepsi Cola, and Orange Crush), Kool-Aid, chocolate, and many fruits and processed foods.
- Select items that may be helpful to you from the ICA Resource Materials Guide.
Revised November 21, 2008