儿童多发性硬化症

Multiple sclerosis (MS), a condition of the central nervous system (CNS) that can cause muscle weakness and sensory symptoms (including, for example, vision loss), is usually diagnosed in adults. But kids and teens can get it, too.

“Among children who develop MS, most are adolescents,” saysLauren B. Krupp, MD, the director of the NYU Langone Multiple Sclerosis Comprehensive Care Center in New York City.

克鲁普博士说：“相比之下，年龄较大的青少年的频率最高，而在12岁以下的年龄段中，可能只有10％到15％的人有诊断。”

研究表明，患有MS的儿童中绝大多数（最多98％）的病情复发形式（RRMS）。

如果您的孩子患有MS，则需要了解以确保适当诊断和治疗的知识。

RELATED:Speaking Multiple Sclerosis: A Glossary of Common Terms

诊断MS在儿童中，比成年人更具挑战性，因为它通常与其他具有相似症状和特征的疾病混淆，这些疾病在年轻人（例如ADEM或临床孤立综合征（CIS））中更为常见。

ADEM is a brief but intense attack of inflammation in the CNS (the brain and spinal cord) that, like MS, causes damage to the myelin sheaths that protect nerve cells. The condition is sometimes called post-infectious encephalomyelitis or immune-mediated encephalomyelitis. In most cases of ADEM, symptoms occur within two weeks of a viral or bacterial infection.

与MS一样，ADEM的常见症状包括视力丧失，肌肉麻木和无力以及平衡或协调问题。

其他一些可能导致类似于MS的症状的疾病，并且在诊断孩子时可能需要排除这些症状视神经炎, isolated横向脊髓炎,neuromyelitis optica,MOG-associated disease,中枢神经系统恶性肿瘤,leukodystrophies, and线粒体疾病。

儿童中的MS也经常无法诊断，因为儿科医生不经常看到患者的病情，并且不熟悉体征和症状。

克鲁普说：“此外，青少年有时不会出现症状，父母可能会慢慢识别问题。”“通常，孩子的年龄越年轻，诊断就越难。”

To be diagnosed with MS, according to the criteria defined in 2007 by the International Pediatric MS Study Group and last updated in 2013, a child must experience one of the following:

• 至少有两个非脑病，临床中枢神经系统炎症事件至少分为30天，涉及大脑或脊髓的一个以上区域（非脑病性意味着该人的认知不受炎症事件的影响）。
• 与磁共振成像相关的MS典型的一个非脑病性发作（MRI）与MS一致的发现
• 症状发作后三个月或更长时间，ADEM的攻击随后发生了非脑病临床事件，这与与MS一致的新MRI病变有关
• 不是ADEM，但会产生与MS一致的MRI病变的第一个单一的，急性事件（例如顺式）

“There are several diagnoses that look very much like MS but may respond to different medicines than MS,” saysE. Ann Yeh, MD，多伦多病儿童医院（Sickkids）的儿科神经炎性疾病计划主任，多伦多大学的儿科医学教授。“最重要的是，您的孩子的护理团队在遇到一个新的脑部病变的年轻人时会广泛思考。”

RELATED:16 Conditions Commonly Mistaken for Multiple Sclerosis

一般来说,大多数人theMS的症状in children are the same as those experienced by adults, namely:

• Muscle weakness,刺痛和麻木
• 视力问题(including double vision) or vision loss
• 难以维持平衡
• 走路问题
• Muscle tremors or spasticity
• Bowelor膀胱控制问题
• 言语不清

但是，患有MS的儿童也可能会出现成年人通常没有的症状，例如癫痫发作和嗜睡。孩子们也可能会经历更频繁的relapsesthan adults with early MS, according to the NMSS.

“Some studies have suggested that children may have up to 3 times as many relapses as adults early on in the course of their MS,” notes Dr. Yeh.

As a result, children and adolescents with MS may face challenges in academic performance and family relationships, and the condition can further complicate issues most young people deal with, like poor自我形象and making friends.

Although research indicates MS progresses more slowly in children than in adults, younger people with the condition are more likely to have significant disability earlier following diagnosis than those with adult-onset MS, the NMSS reports.

克鲁普说：“虽然这是真正的孩子通常比成年人复发更多，而且他们通常在MRI上显示出更多的炎症，因为小组的小组比成年人更完全从复发中恢复过来。”“作为一个小组，许多女士的孩子做得非常好。但是，与成人发病的儿童相比，MS年龄成年的儿童通常会在年轻的年龄达到任何残疾水平，因此儿科发病的儿童可能需要在年轻时使用甘蔗或其他辅助设备。”

Yeh补充说：“几项研究记录了（小儿发作的患者MS在30年代中期的不可逆转残疾阶段）的年龄。”“那是首次发作迹象大约20年。在成人人群中，达到不可逆转的残疾点需要少的时间，但是发生这种情况的时间比小儿人晚了。”这表明，当被诊断为成年人的人遇到与MS相关的残疾时，他们年龄较大。

RELATED:How Age Affects Multiple Sclerosis Symptoms and Progression

As with adults, there’s no cure for MS in children. But there are manytreatmentsavailable to address many of the symptoms and make life better for children with the condition.

Other oral DMTs used off-label in children with relapsing-remitting MS includetecfidera（富马酸二甲基）andAubagio (teriflunomide), which are both currently being evaluated in clinical trials involving pediatric patients with the condition.

Another adultMS medication,tysabri（natalizumab），也已调查用于患有这种情况的儿童rituxan（利妥昔单抗），一种用于类风湿关节炎和各种形式的癌症的免疫抑制剂。

Options for Treating MS Relapses

尽管大多数儿童通常都能很好地忍受皮质类固醇，但它们可能会遇到某些副作用，这种行为改变，血糖水平增加和恶心。

治疗复发的其他​​选择包括血浆交换和静脉免疫球蛋白（IVIG）。血浆交换，也称为血浆置换或PLEX，基本上消除了攻击MS患者神经细胞中髓细胞的血液中的抗体。几周内给予了几种治疗。

IVIG是一种由健康献血者的抗体组成的IV药物，有助于降低MS中的免疫反应。根据费城儿童医院的说法，IVIG通常不是第一种用于MS复发的治疗方法，但可以在某些情况下使用。

RELATED:是或错：测试您对多发性硬化症的知识

Additional Parts of the MS Treatment Plan

MS儿童的任何治疗计划还应包括身体，职业和语音疗法。这些可能有助于改善肌肉力量以及平衡和协调。

RELATED:MS患者的康复

重要的是要记住，被诊断出患有MS的孩子可以体验emotionaland social challenges. Having a chronic condition like MS can affect a young person’s self-confidence, academic performance, peer relationships, family and social life, and overall behavior.

这也可能影响他们在当前和将来如何看待生活的方式。

Thus, Krupp says, it’s vital that children with MS be in regular communication with school counselors, therapists, and others who can help them with these challenges. Encourage them to talk about their experiences and problems, and make sure they get support from teachers, family, friends, and other members of the community.

她说：“一个提供咨询，理想情况下是基于同行的支持计划的团队。而且，孩子们锻炼身体，与朋友互动并完全参加学校至关重要。”

Yeh说：“全面的计划应满足MS儿童的所有需求，理想情况下应包括医生，护士，护士从业者，社会工作者，心理学家，神经心理学评估，以及物理治疗师和职业治疗师，以及其他医疗保健工作者。

Yeh继续说道：“因为保持健康的体重和保持活跃也很重要，“运动生理学家，营养学家和营养师可以在需要时为我们提供帮助。Sickkids的社会工作者和护理人员在MS儿童家庭的照顾中发挥重要作用。”

Ultimately, planning your child’sMS治疗should include discussion of the goals and expectations of the child and the family as well as any potential risks. Children on DMTs and other prescription medication should also undergo routine monitoring (including血液检查, MRIs, and other tests) to make sure the treatment is working and to minimize side effects.

Your child’s MS healthcare providers are a good place to start to find peer support resources in your area.

为了夏季乐趣和学习，国家MS协会的举办冒险营for young有MS的人在4至12年级中，他们与受MS影响的人住在一个​​家庭中。在2021年，他们为13至17岁的青少年提供了与MS的父母的虚拟冒险营。

The NMSS operatesonline support groupsfor kids, teens, and people with their twenties.

Although, as Yeh notes, MS is a chronic and progressive disease, it isn’t fatal — even if you’re diagnosed at a young age. While the condition can’t be cured or prevented, those who are diagnosed with MS as children can maintain a good quality of life well into adulthood by treating the symptoms, managing emotional and social challenges, and sticking to a饮食健康的生活方式and锻炼。

Krupp knows patients who have grown up to have successful careers and start their own families.

“We’re still learning about long-term outcomes with pediatric MS, but I like to be optimistic, as our therapies are better than before,” Krupp adds. “I have many patients in their mid-thirties who are doing well and have had MS since their early teens.”

国家多发性硬化症学会(NMSS)

The NMSS website has information about pediatric MS, a search tool for finding a pediatric neurologist, two virtual self-help groups for kids and teens with MS, and a downloadable handbook for parents of children and teens with MS.

奥斯卡猴

奥斯卡（Oscar）每月两次为有多发性硬化症，类似诊断的青少年举办Zoom电话，并在明尼苏达州为青少年，年轻人和患有MS的孩子的家庭举行营地和务虚会。奥斯卡的网站有一个清单小儿MS卓越中心。

小儿MS联盟

小儿MS联盟为患有MS的孩子的父母互相联系和支持提供了一种方法，主要是在他们的private Facebook page。

了解更多多发性硬化症资源