Until a year ago, Kate Lamons would slip into her mother’s classroom during school to change clothes, hopefully fast enough that she could return to her own class before anyone noticed that her clothes were wet from an overactive bladder.
Kate, 9, was suffering from urinary incontinence, a condition she had endured since age 4, with frequent urinary tract infections. Her involuntary incontinence was due to an overactive bladder, and multiple drug therapies had failed to help.
“She was sick and in a lot of pain, and we tried several different antibiotics and other medications,” said Kate’s mother, Ashli Lamons, who is also a schoolteacher. “In December 2011, she got E. coli in her kidney, and that was a pretty bad infection. That’s when we knew we needed to do something.”
At the Monroe Carell Jr. Children’s Hospital at Vanderbilt, John Pope IV, M.D., professor of Urologic Surgery and Pediatrics, is using an innovative treatment to help children, such as Kate, with daytime urinary incontinence when all other therapies — behavioral and medicinal — have failed.
The therapy involves a device called Interstim, a sacral nerve stimulator that helps with bladder control. The device is implanted under the skin near the lower back and controls the nerves associated with the bladder to keep children from leaking or having urinary frequency.
Children’s Hospital is only one of a few places in the United States offering this last-resort therapy to children.
“In 10 days after the surgery, her leaking was pretty minimal — it had almost stopped,” said Ashli Lamons. “She hasn’t had an infection since. She brought all her extra clothes home from school. It was the best day ever. She was excited about that. It has changed our life completely.”
So far, Pope has treated 17 patients, ages 5 to 17, who have had positive results. Some of the families have come from around the country, after not finding solutions elsewhere.
On objective bladder dysfunction questionnaires, pre- and post-operative, children showed a drop from a score of 24 (high dysfunction) down to a score of about 12 (normal to minimal dysfunction) at four months.
“In the past, there really haven’t been a lot of alternatives for treating those children if they failed to respond to behavioral and medical treatments,” Pope said.
“Our adult Urology colleagues have been putting this device in adult patients for 10-15 years but there have been only a few scattered reports in children. Its use has not been widespread in children, and we undertook a project to see how well this therapy worked in our refractory overactive bladder patients.”
Interstim implantation involves a two-step outpatient procedure.
A small electrical lead from an external device is placed alongside a nerve in the lower spinal cord to control how frequently and when the nerve stimulates the bladder. If the patient’s symptoms are controlled after a one-to-two week trial following the first stage, a second procedure is performed to implant the device under the skin. With a remote control, the family is able to turn the device up or down as needed.
Pope stresses this procedure is not a first-resort treatment and not for every child.
Symptoms that can potentially be treated with this device include painful urination, urinary frequency/urgency and reccurring infections from poor bladder emptying.
“We’re very optimistic about this, but it’s only for the right patient,” he said. “It is not for every patient who has these symptoms. It is for the patient who has run completely out of options.”
Pope explains to families, as he did to the Lamons, that this therapy was “off label” in children, meaning it was developed on the basis of trials with adults. The Lamons were willing to try.
“We were kind of nervous because we didn’t know much about it,” Ashli Lamons said. “We had exhausted every other option, so we said ‘OK we’ll try it and see.’ We’ve been very happy.”
