Children and Interstitial Cystitis
The exact prevalence of interstitial cystitis (IC) in children is unknown, but urologists and other healthcare providers are seeing and diagnosing IC in children. There has been little information published about children and IC, therefore statistics on IC, diagnostic tools, and treatments specific to children and IC are very limited. Most of the diagnostic techniques and treatments are the same ones used with adults, but modified to be safe and appropriate for children. Learn more about children and IC:
The symptoms of IC in both children and adults are similar: urinary frequency, urgency, and abdominal/pelvic pain or discomfort, often associated with specific food and drink triggers. In fact, a large number of adults with IC report having had urinary problems as children.
Like adults with IC, children may also have other chronic conditions such as fibromyalgia, vulvodynia (in girls), allergic reactions, and gastrointestinal problems. Also, some children with IC may be diagnosed with reflux (urine backs up into kidneys), enuresis (bedwetting), or incontinence.
A separate condition seen in children called “extraordinary urinary frequency” (abnormally increased daytime urinary frequency with no other IC-like symptoms present) has been reported and it is unclear whether this is truly a separate disease or a type of IC.
Much of what is known today about children and IC comes from decades old medical literature. Diagnosis can be challenging because there are still some healthcare providers who question the diagnosis of IC in children. Also, at this time there is no definitive diagnostic test for IC. Diagnosis is made by exclusion, meaning that other conditions with similar symptoms must be ruled out first. It is often difficult for children to obtain proper diagnosis, and may require consultations with several specialists.
Diagnostic steps include:
- History of symptoms
- Physical examination
- Urinalysis and urine culture
- Testing to rule out other conditions
Optional tests that may be helpful in making the diagnosis include:
- Renal/bladder ultrasound
- Voiding and fluid intake diary
- Urodynamics testing
- Therapeutic solution testing (lidocaine, bicarbonate, and heparin instilled into the bladder)
- Validated symptom questionnaires
- Cystoscopy and hydrodistention (under anesthesia) is no longer considered mandatory for diagnosis of IC in children or adults. However, it is still used to help make the diagnosis.
No clinical trials of treatments have been conducted on the pediatric IC population. The mainstay of conservative treatment for children with IC emphasizes the importance of dietary management. Other conservative therapies for children are self-help strategies such as:
- Calcium gylcerophosphate (Prelief)
- Relaxation techniques
- Pelvic floor physical therapy
Oral IC therapies for children with IC include low doses of standard adult treatments. However, none of these treatments have been tested in children and it is up to the discretion of your child’s medical team to weigh the pluses and minuses of each treatment.
- Amitriptyline (Elavil)
- Pentosan polysulfate (Elmiron)
- Hydroxyzine (Atarax)
- Cimetidine (Tagamet)
- Gabapentin (Neurontin) — physicians may be reluctant to use because of side-effects such as sedation and nightmares.
- Opioid analgesics — physicians may be reluctant to use due to the potential problems of placing a child on longterm narcotic therapy.
Standard bladder instillations for adults that have been suggested for children with IC include:
- DMSO (RIMSO-50)
- Therapeutic solution (lidocaine, bicarbonate, and heparin)
Challenges Facing Children with IC
Conveying the debilitating effects of IC can be difficult for children with IC and their parents. Many children with IC are prone to frequent absences from school because of the nature of the illness. 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 providing a clear understanding of the scope and nature of the problem:
- Frequent visits to medical specialists can create missed schooldays.
- Children with IC need extra restroom breaks. It is not uncommon for a child with IC to urinate several times within a one hour time period. This may vary from day-to-day, as well as from child-to-child.
- IC can be quite embarrassing and your child may be teased by other children and singled-out or ridiculed.
What Can You Do?
Communicate directly and often with your child’s healthcare 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.
- Find the best possible medical care for your child. The ICA Healthcare Provider Registry includes pediatric urologists, as well as other knowledgeable healthcare professionals.
- Get in contact with parents of other children 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 and drinks that can cause IC flares include pizza, lemonade, carbonated and caffeinated beverages such as sodas (Mountain Dew, Coca-Cola, Pepsi Cola, and Orange Crush, for example), Kool-Aid, chocolate, and many fruits, fruit juices and drinks (including cranberry juice) and processed foods.
- Check out an article from the American Chronic Pain Foundation about children and chronic pain.
- Select items that may be helpful to you from the ICA Store.
Revised Monday, May 20th, 2019