Interstitial cystitis (IC) is a chronic inflammatory condition of the bladder wall that occurs predominantly in adults but is now being recognized as a condition that also affects children. Its cause is unknown. "Common" cystitis, also known as a urinary tract infection, is caused by bacteria and is usually successfully treated with antibiotics. Unlike common cystitis, IC is not believed to be caused by bacteria and does not respond to conventional antibiotic therapy. Being able to explain the difference between IC and “common cystitis” may be important if others are to understand that IC is a chronic illness that cannot yet be cured, and that children with IC may require ongoing accommodation, especially in the school setting. It is also important to note that IC is not a psychosomatic disorder, is not contagious, nor is it caused by stress.
IC can affect people of any race, sex or age, including children. A 1999 study indicated that interstitial cystitis affects approximately 750,000 patients in the US. This figure is most likely an underestimation, since IC is often undiagnosed, under-diagnosed, or misdiagnosed. However, pediatric urologists are now beginning to recognize IC in children.
The symptoms of IC in both children and adults are similar. Some or all of these symptoms may be present:
FREQUENCY: Day and/or night frequency of urination (up to 60 times in a 24-hour period in severe cases). In early or very mild cases, frequency is sometimes the only symptom.
URGENCY: The sensation of having to urinate immediately, which may also be accompanied by pain, pressure or spasms.
PAIN: Can be in the lower abdomen, pelvis, urethral or vaginal area, or penile or scrotal area.
PRESSURE (in the pelvic area): This can occur alone or together with frequency, urgency and/or pain.
OTHER DISORDERS: Some patients with IC, including children with the condition, also report muscle and joint pain, fibromyalgia, vulvodynia (in girls), migraines, allergic reactions, and gastrointestinal problems, as well as the more common symptoms of IC described above. Also, some children with IC may be diagnosed with reflux (urine backs up into kidneys), enuresis (bedwetting), or incontinence.
1.Lack of Knowledge: 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 workers. IC has only recently been acknowledged as a “legitimate” adult illness within the medical community, and many medical professionals have a limited knowledge of the disease. Also, many parents of children with IC have reported that they have come under scrutiny by school administrators who have no knowledge of the disease and refuse to believe them.
2. Diagnosis: While it is difficult for adult IC patients to receive a diagnosis of IC from a knowledgeable physician, it is even more difficult for children to obtain proper diagnosis, and this may require consultations with several specialists. A 2001 article notes that, “Many urologists think that IC does not exist in the pediatric patient population, or that it is exceedingly rare. There is a high likelihood that IC in children is underdiagnosed, as it has been in other patient populations for decades. Given the severity of the symptoms, the dramatic impact on quality of life, as well as and the economic impact of this condition, the ICA strongly believes that children should be more aggressively evaluated and treated.” [1]
3. Frequent Absences: 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. The ICA has packets of information available that can provide a better understanding of the scope and nature of the problem.
4. Frequent Need for Restroom Breaks: 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.
5. Embarrassment: 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.
Over the years, the ICA has noted that many IC patients remember having IC-like symptoms as children. In the 1997 supplement to the medical journal, Urology, which was dedicated in its entirety to the subject of interstitial cystitis research, Drs. Camille A. Jones and LeRoy Nyberg Jr., Director of Urology at the National Institutes of Diabetes and Digestive and Kidney Disease, close their scientific paper with the following poignant statement: “By not studying IC in children, are we missing the time when IC might be prevented, given that a large number of adult IC patients report urinary problems [in their youth]”? [2]
1. Join the ICA. You will be helping to make a difference in your child’s life as well as the lives of the thousands of others who are affected by IC. You can also utilize the ICA’s IC & Children contact list, which will enable you to communicate with other parents of children with IC. This will be an invaluable resource for both you and your child.
2. Knowledge is power. Learn everything that you can about your child’s condition and how to treat it. An excellent place to start is the ICA’s Web site (http://www.ichelp.org/). There are many treatments currently available that can help your child.
3. Find the best possible medical care for your child. To obtain a list of IC-knowledgeable urologists (including pediatric urologists) who treat IC patients, please contact the ICA.
4. Employ some self-help strategies to help ease your child’s symptoms. One self-help strategy involves diet modification. Foods and beverages high in acid may aggravate the symptoms of IC. Examples of typical children’s foods that could cause IC flares include: pizza; lemonade; carbonated or caffeinated beverages such as Mountain Dew, Coca-Cola, Pepsi Cola, and Orange Crush; Kool-Aid, chocolate, and many fruits and processed foods.
While a diet low in acidic foods can be especially daunting for a child, there are “treats” that can be eaten that may help your child to feel less deprived of his or her favorite foods. These include: any candies, ice creams, cakes, or cookies that do not contain chocolate or acidic ingredients (for example, vanilla ice cream with butterscotch topping, angel food cake, oatmeal cookies, toffee, etc.); white pizza (pizza with no tomato sauce); pure pear juice, pure blueberry juice, or diluted Minute Maid reduced acid orange juice. The recipe for NoMato Sauce, which is a tomato-less, all-purpose “tomato” sauce, is available on the ICA’s website, as is a more complete explanation of the IC Diet (located in the Treatments section). To help you with your child’s diet limitations, the ICA offers, A Taste of the Good Life ~ A Cookbook for an Interstitial Cystitis Diet by Beverley Laumann, which is a comprehensive cookbook dedicated to IC cooking. This and other helpful IC Diet publications are available through the ICA’s Resource Materials Guide.
5. Become proactive. Communicate directly and often with your child’s health-care team, as well as his or her teachers, principal, school nurse, gym teacher, etc.
6. Your child’s symptoms may be misinterpreted or misunderstood by your health-care providers, as well as by school officials and teachers. Their symptoms may be misinterpreted, dismissed, or even 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. Please contact the ICA for assistance should a problem of this nature occur.
7. Reassure your child --- especially if he or she is very young --- 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.
1. Ratner V. Current controversies that adversely affect interstitial cystitis patients. Urology 2001 Jun;57(6 Suppl 1):89-94
2. Jones CA, Nyberg L. Epidemiology of interstitial cystitis. Urology 1997 May;49(5A Suppl):2-9
- Schuster GA. Interstitial cystitis in children: not a rare entity. Urology 2001 Jun;57(6 Suppl 1):107
- Kusek JW, Nyberg LM. The epidemiology of interstitial cystitis: is it time to expand our definition? Urology 2001 Jun;57(6 Suppl 1):95-99
- Park JM. Is interstitial cystitis an underdiagnosed problem in children? A diagnostic and therapeutic dilemma. Urology 2001 Jun;57(6 Suppl 1):30-31
- Close CE, Carr MC, Burns MW, Miller JL, Bavendam TG, Mayo ME, Mitchell ME. Interstitial cystitis in children. J Urol 1996 Aug;156(2 Pt 2):860-2