Children & IC/BPS
Can children develop interstitial cystitis? Absolutely. Children as young as two years old can struggle with bladder symptoms of frequency, urgency, pressure and/or pain as the bladder fills with urine. Many older IC patients report that their symptoms began during childhood, often with incorrect diagnoses of bacterial cystitis, urethritis or urethral syndrome. One age study demonstrated that patients diagnosed at young ages experience significantly more urinary urgency, frequency, dysuria and pain in their external genitalia. In contrast, older patients had higher rates of night time urination, incontinence and Hunner’s Lesions. (1)
As we often see in adults, IC can also co-exist with other related conditions. At least one case study has been published of a 12 year old girl with both IC and endometriosis (2) A large study of the childhood migraines and abuse, found children struggling with IBS (31%), fibromyalgia (10%), IC (6.5%) and other chronic conditions (3).
Diagnosis of IC in Children
As we see in adults, a diagnosis of IC in children is usually made after a thorough medical history, physical examination, voiding diaries and the exclusion of other medical conditions.(4) Testing is similar to that done with adults. One barrier to diagnosis is that some clinicians don’t believe that children can develop IC or that children can feel bladder pain. Of course, children don’t have the language skills to express what they are feeling. Some may say “my pee pee” hurts. Others may cry as they urinate. One significant indicator is nighttime frequency, particularly if your child can’t sleep through the night or is up to use the restroom several times a night.
Treatment of IC in Children
Treatment options are also similar to those used with adults although it may also depend upon the age of the child involved. The AUA IC/BPS Treatment Guidelines offers a six step treatment protocol which rates treatments based upon safety and ease of use. In general, most clinicians prefer to start with the least invasive strategies first as represented in Step One, particularly diet modification.
Children are often very adaptable. Dr. Lowell Parsons, for example, has been successful in teaching younger children to perform bladder instillations at home. The challenge, unfortunately, is that minimal research has been done to study the impact of these treatments on children.
Self-help strategies can be very helpful in reducing bladder symptoms and discomfort, particularly avoiding foods that are high in acid or caffeine. Children are often told to drink cranberry juice, along with other juices, to help their bladders. Sadly, these often cause worse pain and discomfort. Similarly, sodas and coffee drinks should also be avoid. Click here to read more about the IC diet.
The ICN Mail Order Center offers a wide variety of foods and low acid drinks that can help your child enjoy food and not feel left out, including low acid jams, fruit bars, baking mixes, fruit juices and candies.
Family & Parental Support
Like adults, children with interstitial cystitis may also struggle with anxiety. They may wonder if they are dying or if they are being punished. As a parent, it’s vital that you address these fears quickly. IC is treatable! Your child has done nothing wrong. IC is not their fault. IC is a legitimate illness that requires compassion, caring and love. Asking a child with IC to “hold it” for another ten, fifteen or 30 minutes can be agonizing, both in a classroom or in a car. They need access to a restroom immediately and you should accommodate them whenever and wherever possible. As their parents, it’s your job to nurture them, hug them, push them when needed and give them a soft place to fall when they are in pain.
Parents can find support and valuable insight by talking with other parents of children with IC. You can find support opportunities in both the ICN Forum .
- Raise-Bahrami S, et al. Symptom profile variability of IC/BPS by age. BJU Int. 2012 May;109(9):1356-9
- Walid MS, et al. Interstitial cystitis and endometriosis in a 12 year old girl. Arch Gynecol Obstet. 2011 Mar;283 Suppl 1:115-7.
- Tietjen GE, at al. Childhood maltreatment and migraine (part III). Association with comorbid pain conditions. Headache. 2010 Jan;50(1):42-51
- Yoost JL, et al. Diagnosis and treatment of interstitial cystitis in adolescents. J Pediatr Adolesc Gynecol. 2012 Jun;25(3):162-71
Back To School Strategies
With a new school year approaching, children and teens with IC might be anxious and uncertain. Will they be given restroom access? Will they have teachers who support them? Will they make new friends and fit in? Will the bus ride be comfortable? Your goal as a parent is to nurture and inspire them. School should be a source of happiness, dignity and pride. IC, however, can create obstacles, particularly with restroom access.
We’ve put our heads together to come up with some tips that you can use to advocate for your child with school administrators, personnel and teachers.
- Educational Article For Parents – “Back To School Strategies For Students With IC”
- Educational Article For Parents – “IC Friendly Lunches and Snacks”
- Educational Article For Teachers or School Nurses – “Interstitial Cystitis”
- Educational Article For Teachers or School Nurses – “Diagnosis and Management of IC” by John Forrest MD
- ICN Restroom Access Cards – ideal for children to carry to show to school staff.
“Living with IC Video” – Back to School Strategies For Elementary Students
With school fast approaching, ICN President Jill Osborne shares some strategies that parents can use to help their child handle IC at school, particularly restroom access. Our goal is to make sure that the pride, dignity and self respect of any child with a bladder disease is maintained and nurtured. School, however, has plenty of opportunities for embarrassment. Yet, with a bit of planning, this can be minimized!
Living with IC as a child or teen can feel overwhelming but with the unconditional support of family friends, it can be much much easier. Dare your child to dream. There are space scientists living with IC, actors, actresses, judges, attorneys, teachers, nurses and doctors. IC doesn’t mean that they can’t have an amazing career or a wonderful family of their own.
- IC Survival Guide by Dr. Robert Moldwin offers extensive discussions of diagnosis, treatment and pain care.
- “Interstitial Cystitis in Adolescents and Children: A Review”
- Is interstitial cystitis an underdiagnosed problem in children? A diagnostic and therapeutic dilemma. Park JM. Urology. 2001 Jun;57(6 Suppl 1):30-31. No Abstract available.
- Interstitial cystitis in children: not a rare entity. Schuster GA. Urology. 2001 Jun;57(6 Suppl 1):107. No Abstract available.
- Chronic interstitial cystitis and systemic lupus erythematosus in an 8-year-old girl. La Manna A, Polito C, Papale MR, Rocco CE, Marte A. Pediatr Nephrol 1998 Feb;12(2):139-140
- Bowel perforation and interstitial cystitis in childhood systemic lupus erythematosus. Eberhard A, Shore A, Silverman E, Laxer R. J Rheumatol 1991 May;18(5):746-747