A Proposed Four Step IC/BPS Treatment Protocol For The Youngest Patients –

When Jill van Royen sought medical care for her young daughter with IC, she found little help among the physicians in Northern California. Out of desperation, she and her daughter flew across the country to see Dr. Robert Evans at Wake Forest University. It was there that she finally found a physician experienced in treating IC in children. With his guidance, her daughter has finally begun to improve. Ms. van Royen wanted to use IC Awareness Month as a platform to educate other parents about the needs of children with IC. As a result of her efforts, we now have a suggested four step treatment plan based on the AUA Guidelines but adapted for the age of the child.

drrobertevansaward2015Do you think a child under the age of 18 can get a diagnosis of IC?

Answer – Yes. One challenge is that the earliest NIDDK research criteria (approx. 1987) excluded patients under the age of 18. Unfortunately, many clinicians began to apply that standard to their clinical practice. Children under the age of 18 can certainly develop IC. The youngest I’ve worked with was six years old. In children, I look for urinary frequency, urgency, nocturia, any pain associated before or during urination, the ability of the child to sit through school, etc.

What barriers exist for parents who are trying to get help for their children?

Answer – Many pediatricians and urologists, including pediatric urologists, will flat out state that a child cannot have IC but they would be wrong. It does exist. Some doctors may blame it on childhood urinary symptoms, pelvic floor dysfunction or behavioral issues. If a parent is told that their child has a UTI but the cultures are negative, they should ask the doctor to look for IC. Similarly, if they are told that their child has overactive bladder but is not responding to treatment, they should also probe for the presence of IC. If the physician refuses, they need to find another doctor.

Are there any specific symptoms that you look for in children versus adults?

Answer – Children and adults are very similar in that they both experience urgency, frequency, getting up at night to urinate, and may complain of bladder pain. The challenge is that children often can’t verbalize what they are feeling or may hide it from their parents. Parents should make it comfortable for their child to talk about. Don’t use the word urinate. Pick a word that a child can understand like “tinkle” or “pee.”

Can children have Hunner’s lesions?

Answer – I have not seen true ulcers in a child but believe they may exist.

Have you noticed any triggering events for children with IC symptoms? (i.e. bicycle accident, UTI, poor diet, etc.)

Answer – Kids can have triggers just like adults It can be stress, a UTI, poor diet or perhaps physical trauma (i.e. bicycle riding, accident, etc.). Some children struggle with bedwetting and face fairly serious punishment from their parents.

Is there any relationship between bedwetting and IC in children?

Answer – Children struggling with pain may become incontinent or they may not be able to get to the restroom quickly enough. Children should never be punished for incontinence or bathroom complaints. If it has become a consistent problem and/or your child is complaining of pain, difficulty sitting through class, please consult with your doctor or a urologist.

Is diet modification as important for children as it is for adults who struggle with bladder wall irritation?

Answer – Certainly if a child is consistently drinking sodas and acidic fruit juices throughout the day, this could be irritating their bladder. One way to find out is to exclude that risk food for a few weeks. Does their bladder feel better and can they sleep through the night more easily, by reducing these foods? If so, then avoiding those foods is important.

Many adults with IC have reported that high periods of stress can trigger IC flares? Are children also sensitive to stress?

Answer – Yes, children can experience an IC flare during periods of high stress, such as starting a new school year. Home should be a sanctuary for children in pain so parents should try to keep conflict and arguing at a minimum. Many schools now limit restroom access during the day, forcing IC patients to sit in pain.

What should a parent due if the school limits restroom access for their child?

Answer – No child should be forced to sit and hold urine in a painful bladder because a teacher will not allow them to go to the bathroom. Parents should talk to the teacher and the principal so that appropriate modifications to the rules around bathroom use can be made for the child with IC. If necessary, the school can be forced to make an accommodation plan like they would for a child with any other physical condition. Kids should not be forced to live in pain because of arbitrary school rules governing bathroom use.

Can puberty affect interstitial cystitis symptoms?

Answer – Yes. Some children may improve dramatically with the onset of puberty while others may struggle with worsening symptoms. Some girls are more sensitive to swings in estrogen during their menses cycle and may notice that they flare a few days before their period