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An In-depth Look at Children with IC
"I think it's important for people to know that kids can get IC."
That's what 10-year-old JT McNeil told the ICA Update and all the legislators and aides who would listen when he joined the ICA's Capitol Hill Walk last June at age 9. But not all physicians or even pediatric urologists know that. JT's mom, the ICA's Children's Advocate Merri McNeil, found that out when she first took JT to a urologist. "The first one that did a cystoscopy on him looked me in the eye and said, 'Well, you know if he were a 50-year-old woman, I'd say he had interstitial cystitis, but hes not, he's a four-year-old boy.' I'm thinking, 'What the heck does that mean? He's not a squirrel, you know. He's a human being just a small one.' George Schuster, MD, a urologist who has a private practice in Joliet, IL, said he found himself on the other side of a similar conversation 20 years ago, when a mom brought in her young son. "I looked at her and said, 'You know, if Johnny here weren't six years old, I'd say he had IC.' She said, 'Why can't he have that?' I said, 'Because he's a child, and children don't get IC.' And she looked at me and said, 'Why not?' I had to say, 'I don't know-because I was taught it doesn't occur in kids.'" So Dr. Schuster looked through the medical literature, found that there were indeed case reports of IC in children, brought the young patient back in, performed a cystoscopy with hydrodistention, and "Voila, he's got glomerulations everywhere." That's when Dr. Schuster started treating kids with IC and trying to answer the questions, What is it in kids and how common is it? Eventually, JT did get his IC diagnosed and treated by pediatric urologist George Klauber, MD, Chief of Pediatric Urology at New England Medical Center in Boston, MA, who told the ICA Update that he follows some 50 to 60 children with IC. He explained that the reason many urologists think IC doesn't occur in children is because the diagnostic criteria established by the NIDDK nearly 20 years ago excluded anyone under age 18. But what many urologists don't realize is that those criteria were never meant for the clinic. They were meant for research purposes only, to ensure that everyone in clinical studies definitely had IC and to avoid problems with review boards, who have very strict standards about approving research on children. Nevertheless, the mindset about the diagnosis of IC in children is changing. The ICA Update spoke to a number of pediatric urologists and general practitioners around the country who do think it occurs in kids and treat at least a few children. They don't all agree on exactly what it is in kids, how common it is, or when kids should be treated, however. Dr. Klauber and Dr. Schuster, for example, don't use the same diagnostic criteria, but they both think IC is not rare in children. "If you insist upon cystoscopic findings of a small bladder with or without Hunner's ulcers, or an increased number of mast cells in the detrusor muscle upon biopsy, it is rare. If you think a patient with severe urinary frequency, bladder pain relieved by voiding, distress after consuming acid-containing beverages or foods, and possible additional conditions such as migraines, fibromyalgia, and inflammatory bowel disease can have IC, then IC is not uncommon in children," said Dr. Klauber. John Park, MD, Chief of the Division of Pediatric Urology at the University of Michigan Health System in Ann Arbor, doesn't think it's very common. But, IC will be his diagnosis in a young person who has great urinary urgency and frequency and pelvic pain. "Age 18 is not a biological boundary," he said, "If a 14-year-old comes to my clinic with classic IC symptoms, I'm not going to blow them off by saying that IC cannot exist in kids. That's ludicrous." Not a lot of kids get diagnosed, noted Barry Duel, MD, Assistant Clinical Professor of Urology at the University of California, Irvine, who says he sees only one or two children with IC a year in his busy practice. "But part of it may be because it's not something that pediatric urologists have in their mind as a pediatric disease, and part of it may be that, if it exists in kids, it may be a slightly different symptom complex." Dr. Duel would like to see surveys with a good symptom score validated for children that would be done nationwide in pediatricians' offices to get an idea of how common symptoms are in children. There is currently a validated symptom score for "dysfunctional voiding" for children that might be helpful, although not specifically for IC. Matt Rosenberg, MD, a general practitioner and Director of the Mid-Michigan Health Center in Jackson, who has children with IC in his large general practice, has been surveying adults with validated IC symptom scores, and he would like to do that for children. But the questionnaires, he said, would have to be tailored to apply to children. What Exactly Is IC in Children?
None of the practitioners the ICA Update spoke with doubted that a child experiencing
frequency, urgency, and pelvic pain had IC, especially a teenage girl, and wouldn't be
reluctant to do cystoscopy with hydrodistention, but that description may not cover all
children with IC. "I get calls from mothers with kids as young as three," said Merri
McNeil, who provides support for parents of children with IC.
Do children have to have pain to have IC? No, say both Dr. Klauber and Dr. Schuster. Dr. Schuster, too, pointed to the NIDDK criteria as a source of the difficulty because they include pelvic pain, but again, those are research criteria. "Do you think all people with IC have pain?" he asked. "Not all adults do, so why do kids have to have it?" Dr. Klauber thinks that, although the number of children with IC who don't have pelvic pain may not be great, you do have to look for pain. The urologist needs to find out whether the child has pain after eating or drinking something irritating, like orange juice. To make his diagnosis, Dr. Klauber says he has to do cystoscopy with hydrodistention and find one or more of the following: 1) glomerulations or Hunner's ulcers, 2) small bladder capacity, or 3) symptomatic relief or improvement after hydrodistention, after starting an IC diet, with hydroxyzine (Atarax), or with amitriptyline (Elavil). Dr. Schuster seems readier to suspect IC without pain when bladder capacity is very small, which he finds out by having a parent keep a voiding diary for the child. Pediatric urologists, he said, have some very broad diagnoses that fit this picture and more. "Voiding dysfunction," is a common label, he noted, but that term is vague and may include everything from IC to wetting to "idiopathic" (which means of unknown cause) frequency to Hinman bladder (also called nonneurogenic, neurogenic bladder-one with a very large capacity). But both Dr. Klauber and Dr. Schuster try anticholinergic medications (examples: Levsin, Bentyl, Detrol, Ditropan) first when there's extraordinary frequency without pain. "If I find the child responds to an IC diet or they report how much worse they are when they consume irritating foods such as orange juice or cantaloupe melon, then I tend to lean more toward a diagnosis of IC. If they respond to anticholinergics and that's all I have to do for them, I will consider them to have functional urinary frequency or frequency dysuria syndrome, but something different than IC," said Dr. Klauber. Also, many pediatric urologists think that voiding dysfunction, especially something they may call "functional frequency" or "extreme frequency" or "benign frequency syndrome," is self-limited. In other words, kids just grow out of it. That's true for some, said Dr. Klauber, especially boys aged four to eight years who have symptoms that last up to four to eight weeks that then disappear, sometimes to reappear once or twice more during childhood. But there are other children who don't ever get better. "A lot of them do get well," agreed Dr. Schuster, "both with and without treatment. But tell me what happens when that little girl turns 25, and I will bet you that she and a significant number of those other kids, now young adults, are back [to a urologist] again." That's not so different from adult IC patients, he pointed out, who also have flares and remissions and report having had urinary problems in childhood. Another point of contention is whether kids who experience bedwetting (enuresis) can have IC. Some think that's not possible. Dr. Schuster thinks it could be. "We ought to arrange for a meeting of those interested and thrash it out, maybe at the next American Urological Association meeting," said Dr. Klauber. "We need to define IC in children, with subgroups if necessary, then create a national registry and look for the things that our colleagues studying adults with IC are looking for." When Kids Grow Up
In addition to defining just what IC is in children, these doctors also want to know
whether symptoms that stop in childhood show up later as full-blown IC in adults or
whether symptoms continue into adulthood.
Dr. Park and his associate, David Bloom, MD, are trying to find that out. They are now following up children with what Dr. Bloom called "extraordinary frequency syndrome"-urgency every 15 minutes all day who didn't show any specific abnormalities in x-ray or cystoscopy studies and who didn't improve with anticholinergics-as well as other children with "benign frequency syndrome." These doctors want to find out whether the children remained symptom free or whether they had symptoms come back, but they just didn't go back to the doctor. Dr. Park and Dr. Bloom are trying to get that information for some 200 patients, some of whom were seen as long as 15 years ago. Testing Children for IC
Although no specific test is really definitive for IC, it's not easy to make an IC diagnosis
without cystoscopy with hydrodistention, most of these doctors agree. But they differ
about when that's appropriate for children. "We're a lot slower to perform that procedure
on a child because of the risks of general anesthesia," said Dr. Duel. And other doctors
said that, unless the child had all the hallmarks of classic IC, including pain, cystoscopy
with hydrodistention might even be considered unethical because of the risk of anesthesia
for children. However, Dr. Klauber and Dr. Schuster do not agree.
Dr. Schuster pointed out that, in other pediatric specialties, general anesthesia is routine. For example, placement of polyethylene tubes for acute otitis media ("tubes in the ears") is extremely common and uses general anesthesia, as does tonsillectomy-and those two procedures often constitute a major share of a pediatric otolaryngologist's (ear, nose and throat specialist) practice. Overfilling and subsequent rupturing of the bladder might be the greater risk for children than anesthesia, he said, but he's never had that happen. And for a urologist experienced in treating children, it shouldn't. Nevertheless, all of these doctors anticipate some form of noninvasive test for IC that could be used for children. In fact, Dr. Schuster is starting a study with Susan Keay, MD, PhD, at the University of Maryland in Baltimore to look for antiproliferative factor (APF) in the urine of kids with and without definite IC. This study is being funded by a grant from the ICA's Pilot Research Program. "If we had some very noninvasive, very easy-to-do test like that, then you can really begin to tackle the issue about what is the prevalence of IC in kids," said Dr. Park. We don't know yet, though, whether APF could tell the whole story about IC in kids. But it should tell a lot, because Dr. Keay and her team have found a gene for this potential marker. If you have the gene, you have it all of your life. What we don't know yet is whether the gene needs to be "switched on" to produce APF, and when and how that happens. Meanwhile, it's becoming more and more clear that there is a genetic component to IC. Even the doctors who aren't conducting research are seeing clues. R. Carrington Mason, DO, in Dallas, TX, who cares for some children with IC said some of them are daughters of the mothers he treats for IC. In addition, he sees a few young men who have chronic prostatitis who are sons of women with IC. "There's no doubt in my mind about the familial nature of IC," he said. Interestingly, Dr. Duel has a young IC patient whose mother doesn't have IC but does have a severe bladder instability problem. Researchers have also found genetic clues. Reports in the medical literature have noted family clustering, and a twin study conducted at the University of Maryland by ICA Medical Advisory Board Member John Warren, MD, a leader in the study of genetics and IC showed that if one twin has IC, their identical twin usually does too. Research just presented at the NIDDK/ICA sponsored symposium by Jordan Dimitrakov, MD, from Plovdiv, Bulgaria, found that 102 members of just 25 families affected by IC had the condition and that a person's risk of having IC went up with the number of relatives who had it. What we also need to know, added Dr. Park, is whether treating IC early translates to better outcomes later on. Treating Kids:
When and How Should Kids Get Treated?

Dr. Klauber starts with anticholinergics and continues them if the children respond. He
also tries the IC diet. He said he doesn't have many children taking Elmiron (although
Elmiron is used in children, it is not FDA-approved for use in children under the age of
18 because it has not been tested in this age group) and that often they respond to diet and
hydroxyzine (Atarax, Vistaril) or amithptyline (Elavil), which he cautiously adds later if
needed. "I think I've had only two or three children I've put on bladder instillations," he
Dr. Schuster also has a conservative approach. He starts with anticholinergics, and if the child doesn't respond, or if he strongly suspects IC right off, he does a cystoscopy with hydrodistention. Some do well with that alone, he said. If not, he also starts kids on the IC diet and the food and beverage acid-reducer, Prelief, after their first return visit a few weeks later and also gives patients urinary tract painkillers and antiseptics like Pyridium and Urised, which they can use as needed. If that still doesn't do enough, then he presents options, such as home bladder instillations that include heparin, or oral Elmiron, in smaller doses than ordinarily prescribed for adults. Dr. Mason has one girl with severe IC and endometriosis who received a sacral neuromodulation implant (InterStim), but only after nothing else worked for her. "The other kids I am treating are taking Elmiron and are doing well and have had their symptoms turned around," he said. Dr. Schuster hopes for more kid-friendly treatment options. Instillation is an awfully hard sell for a child, and it's traumatic, said some of he pointed out. And some of the newer bladder-based therapies may be even less appropriate for children. "Would I ever put BCG in a child? I don't think so," he said. More than Medicine
Kids-and parents-need more than medicine when a child has IC. IC. They also need help
with all the emotional and social consequences. And that comes from both doctors and other patients and parents, like that from Merri and JT. Merri helps parents to find doctors for their child and helps them navigate through the healthcare system. She also advises parents about how to prepare the right diet, modify their children?s the activities, and give their children emotional support. A lot of the emotional support comes from JT who writes the other kids letters. "Usually he tells them to listen to what their mother says, take their medicine, and that he knows how bad it is not to be able to eat chocolate and pizza. He also tells them he knows it's horrible when you have to go to the bathroom every five minutes and you know where every bathroom in the world is, but to remember they're not alone." In addition, JT sends the other kids a lucky rabbit's foot and tells them to rub it when they're not feeling so lucky because they have IC. "I've had mothers tell me that oftentimes they find their teenage daughters crying in their bedroom," said JT's mom, "but they're holding on tight to that rabbit's foot." Dr. Klauber said it's important to communicate to the families that "IC does exist in children and that children with it need our support, consideration, and understanding plus a physician who will take them seriously." Dr. Schuster said he makes sure he talks to the kids directly, but often, it's the parents and teachers he needs to work on. He sometimes has to say, "Look at the voiding diary, Mom. He can't fill his bladder up, so he's got to go. It's not his fault. And yes, you need to stop more often when you go on the road." But even when the parents do understand, the teachers may not. "I write a note for all the kids I treat with IC that says, 'Allow this child free access to the bathroom any time. No permission necessary,'" said Dr. Schuster. "It goes to the school nurse, and they visit with the teacher." This oftentimes helps. And that avoids battles like the one Merri had to fight. "I had to go down to JT's school and raise holy blazes. I told them, 'I don't care what he has to do, you can't say he can't go to the bathroom. That's just not your option. If you think he's fooling around in the bathroom, you tell me. But he never fools around in the bathroom, believe me. That's the last place in the world this kid wants to be." "I have a bumper sticker on my car, 'Help find a cure for IC,'" said Merri, "and it's JT's dream that by the time he drives a car, he won?t need that bumper sticker." That is why we are all work so hard to make this dream come true for JT and all children with IC. For many years the ICA has been dedicated to promoting the awareness of and generating research interest in children and IC, including our IC & Children Fact Sheet and our IC Connections list for Parents of Children with IC. The ICA will continue to promote research into IC in children and to educate pediatric urologists, as well as pediatricians and family practitioners, about the importance of being aware of IC in people of all ages.


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