嘉兴市中医院泌尿外科 嘉兴市科技创新团队
浙江中医药大学附属医院 三级甲等医院
浙江中医药大学附属医院 三级甲等医院
儿童中，间质性膀胱炎（IC）的准确发病率尚未可知，但泌尿科医生和其他医疗服务提供者在儿童都有看到和诊断IC。关于儿童和IC所出版的信息甚少，因此对IC的统计数据，诊断工具和对儿童对IC特殊的治疗，是非常有限的。大多数的诊断技术和治疗是和成人使用的相同，但为安全和适合儿童而有所修改。
症状
儿童和成人IC的症状相似：尿频，尿急，以及腹部/盆腔疼痛或不适，往往与特定食物、饮料引发有关。事实上，多数成年IC患者报告在儿童期曾有过泌尿问题。
像成年IC患者一样，儿童也可以有其他慢性疾病，如纤维肌痛，外阴痛（女孩），过敏反应，和胃肠道问题。此外，部分IC患儿可能被诊断有反流（尿液返回到肾脏），遗尿（尿床），或尿失禁。
有报道，在儿童中可见到一个被称为“极度尿频”（白天尿频异常增加，而且不表现其它IC样症状）的独立状况，目前尚不清楚这是否是一个真正独立的疾病还是IC的一种类型。
诊断
现在很多关于儿童和IC所知的东西，是来自几十年来的旧医学文献。诊断还是很有挑战性的，因为还有一些医疗保健机构质疑儿童IC的诊断。此外，这个时候也没有明确的IC诊断性检查。诊断是通过排除法作出的，这意味着一定要首先排除具有相似症状的其他疾病。对于儿童，得到正确的诊断往往是困难的，可能需要几个专家磋商。
诊断步骤包括：
§ 症状史
§ 体检
§ 尿液分析和尿培养
§ 以排除其他疾病的检查
可能有助于诊断的可选检查，包括：
§ 肾/膀胱超声
§ 排尿和液体摄入量的每日记录
§ 尿动力学测试
§ 治疗性溶液测试（利多卡因，碳酸氢盐和肝素，灌输到膀胱）
§ 症状验证调查问卷
§ 在儿童或成人的IC诊断中，已不再强制要求膀胱镜检查和以水胀满膀胱（麻醉下）。然而，它仍会被用于帮助诊断。
治疗选择
对小儿IC人群，还没有临床治疗试验。对小儿IC的保守治疗主要强调饮食管理的重要性。儿童其他的保守疗法就是自救策略，如：
§ 甘油磷酸钙（Prelief）
§ 瑜伽
§ 放松技巧
§ 盆底物理疗法
IC患儿的口服治疗包括标准成人治疗的低剂量。然而，所有这些治疗方法均未经儿童测试过，它取决于您孩子的医疗团队在权衡每种治疗的优缺点后的判定。
§ 阿米替林（阿米替林）
§ 戊聚糖多硫酸酯（Elmiron）
§ 羟嗪（安泰乐）
§ 西咪替丁（泰胃美）
§ 加巴喷丁（Neurontin的） - 医生可能不愿意使用，因为如镇静和噩梦的副作用。
§ 阿片类镇痛药 - 医生可能不愿意使用，由于一个将孩子长时间麻醉治疗的潜在问题。
成人标准膀胱灌注已被建议用于IC的儿童，包括：
§ 二甲亚砜（RIMSO-50）
§ 治疗性溶液（利多卡因，碳酸氢盐和肝素）
IC患儿面临的挑战
向IC患儿和他们的父母灌输IC的破坏性影响是件难事。许多IC患儿很容易因为疾病的性质而频繁缺课。与学校领导和您孩子的老师见面提前说明问题，并提供你孩子病情的进展情况，这会很有帮助。
§ 频繁看医生可以造成错过上课。
§ IC患儿需要额外的休息上厕所。IC患儿在一个小时内排尿数次，这并不罕见。从一天到另一天，从一个孩子到另一个孩子，这可能会有所不同。
§ IC可以会相当尴尬，而且你的孩子可能被其他孩子嘲笑，以及被孤立或愚弄。
你能做什么？
经常直接与孩子的医疗团队，以及他或她的老师，校长，学校护士，体育教师等沟通。你孩子的症状可能会被曲解或误解。他们的症状可能会被忽视或标示为身心有病。孩子或家长可能受到不公正的指责。虽然IC可因为紧张而恶化（许多慢性疾病都这样），但是IC并不是由紧张引起的，它也不是一个“想象出来的”状况。 IC是一个非常现实的身体状况。
§ 安抚你的孩子，IC是可以治疗的。孩子是天生的烦恼者，而且需要你不断的安慰，以患适应慢性疾病的日常需求。
§ 为你的孩子找到最佳的医疗照顾。
§ 与其他IC患儿的父母联系。
§ 尽量了解你孩子的病情以及如何对待它。
§ 了解有关可以帮助缓解你孩子的症状的自救策略，如改变饮食。一些食物和饮料，可能会加重IC，包括比萨，柠檬水，碳酸和含咖啡因的饮料，如汽水（例如Mountain Dew，可口可乐，百事可乐，和橙汁等），Kool-Aid，巧克力和许多水果，果汁和饮料（包括酸果蔓汁）以及加工食品。
§ 从美国慢性疼痛基金会查看有关儿童和慢性疼痛的文章。
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.
Symptoms
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.
Diagnosis
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.
Treatment Options
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)
§ Yoga
§ 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.
§ 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.
§ 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.
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