The exact prevalence of interstitial cystitis (IC) in children is not yet known, but urologists and other health care providers have seen and diagnosed IC in children. little information has been published about children and IC, so statistics on IC, diagnostic tools, and treatment specific to children with IC, are very limited. Most diagnostic techniques and treatments are the same as those used for adults, but modified for safety and appropriateness for children.
Symptoms.
Symptoms of IC in children and adults are similar: urinary frequency, urinary urgency, and abdominal/pelvic pain or discomfort, often associated with specific food and drink triggers. In fact, most adult IC patients report having had urinary problems in childhood.
Like adults with IC, children can have other chronic conditions such as fibromyalgia, vulvodynia (in girls), allergic reactions, and gastrointestinal problems. In addition, some children with IC may be diagnosed with reflux (return of urine to the kidneys), enuresis (bedwetting), or urinary incontinence.
A separate condition called “extreme enuresis” (an abnormal increase in daytime urinary frequency without other IC-like symptoms) has been reported in children, and it is unclear whether this is a truly separate disorder or a type of IC.
Diagnosis.
Much of what is known about children and IC now comes from decades of old medical literature. Diagnosis is still challenging because there are still some health care providers who question the diagnosis of IC in children. In addition, there is no definitive diagnostic test for IC at this time. The diagnosis is made by exclusion, which means that other conditions with similar symptoms must first be ruled out. In children, getting the correct diagnosis is often difficult and may require consultation with several specialists.
The diagnostic steps include
History of symptoms.
Physical examination.
Urinalysis and urine culture.
Tests to rule out other diseases.
Optional tests that may aid in the diagnosis, including
Renal/bladder ultrasound.
Daily records of urination and fluid intake.
Urodynamic testing.
Therapeutic solution testing (lidocaine, bicarbonate and heparin, instillation into the bladder).
Symptom validation questionnaire.
Cystoscopy and distention of the bladder with water (under anesthesia) is no longer mandatory in the diagnosis of IC in children or adults. However, it is still used to aid in the diagnosis.
Treatment options.
There are no clinical treatment trials for the pediatric IC population. Conservative treatment for pediatric IC emphasizes the importance of dietary management. Other conservative therapies for children are self-help strategies, such as
Calcium glycerophosphate (Prelief).
Yoga.
Relaxation techniques.
Pelvic floor physiotherapy.
Oral treatment for children with IC includes low doses of standard adult treatment. However, all of these treatments have not been tested in children, and it is up to your child’s medical team to decide after weighing the pros and cons of each treatment.
Amitriptyline (Amitriptyline).
Pentosan polysulfate (Elmiron).
Hydroxyzine (Advil).
Cimetidine (Tegretol) Gabapentin (Neurontin) – Doctors may be reluctant to use because of side effects such as sedation and nightmares.
Opioid analgesics – Doctors may be reluctant to use due to a potential problem of putting the child under anesthesia for a prolonged period of time.
Standard bladder perfusion for adults has been recommended for children with IC and includes
Dimethylsulfoxide (RIMSO-50).
Therapeutic solutions (lidocaine, bicarbonate and heparin).
Challenges for children with IC.
Instilling the devastating effects of IC in children with IC and their parents can be difficult. Many children with IC are prone to frequent absences from school due to the nature of the disease. It can be helpful to meet with the school director and your child’s teacher to explain the problem in advance and to provide information about the progress of your child’s illness.
Frequent doctor’s appointments can result in missed classes.
Children with IC need extra breaks to go to the bathroom. it is not uncommon for a child with IC to urinate several times in an hour. This can vary from day to day and from one child to another.
IC can be quite embarrassing, and your child may be teased by other children, as well as isolated or made a fool of.
What can you do?
Communicate often and directly with your child’s medical team, as well as with his or her teachers, principal, school nurse, physical education teacher, etc. Your child’s symptoms may be misinterpreted or misunderstood. Their symptoms may be ignored or labeled as physically or mentally ill. The child or parent may be unfairly blamed. Although IC can be made worse by stress (as many chronic illnesses are), 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 need your constant reassurance to adjust to the daily demands of a chronic illness.
Find the best medical care for your child.
Connect with other parents of children with IC.
Learn as much as you can about your child’s condition and how to treat it.
Learn about self-help strategies that can help relieve your child’s symptoms, such as changes in diet. Some foods and drinks that can worsen IC include pizza, lemonade, carbonated and caffeinated beverages such as sodas (such as Mountain Dew, Coca-Cola, Pepsi, and orange juice), Kool-Aid, chocolate and many fruits, juices and drinks (including sour fruit cranberry juice), and processed foods.