Multiple Sclerosis Education Network

Navigating the Education System
 
VIRTUALLY EVERY PARENT of a child diagnosed with MS has concerns about the impact of the disease on the child's education. The concerns are immediate - What if my child misses too many days of school? What if my child cannot participate in classroom or extracurricular activities? What if my child can't do the required work? Can my child's school provide what he or she needs? How will teachers and classmates respond to my child's MS? And the concerns are long-range - Will my child be able to graduate with his or her peers? Will my child be able to go to college? Will my child be able to succeed?

Multiple Sclerosis Education Network

There are two important things to keep in mind. First, the healthcare team will help you and your child learn how best to manage the symptoms of MS, and how to identify and implement effective accommodations in the school setting. Second, there are laws governing the rights of children in different educational settings at different levels. Specific educational issues are addressed in the American and Canadian versions of Kids Get MS Too: A Guide for Parents Whose Child or Teen Has MS. The National MS Society and the Canadian MS Society can refer you to appropriate resources in your area.
 


Helping Your Child Be a "Normal Kid"
 
MOST PARENTS EXPRESS concerns about how protective to be of a child diagnosed with MS. Their instincts range from wanting to keep their child in a kind of protective cocoon in hopes of preventing anything bad from happening, to wanting to make sure that their child gets to do absolutely everything that all the other kids are doing. The most realistic strategy is somewhere in between. 

Your son or daughter's physician will let you know if there are any restrictions on your child's activities; your best guidance on a day-to-day basis, however, is likely to come from your child. His or her body will give pretty clear signals. If fatigue is a prominent symptom - as it is for many people with MS - your child will simply not feel up to being very active some days. On the other hand, many children with MS are active in both sports and other extracurricular school activities.
 
During acute attacks of the disease, fatigue or other symptoms may prevent your child from engaging in physical activities, socializing busily with friends, or even making it to school. During periods of remission, however, both you and your child may feel that everything is back to "normal," with no holds barred. The challenge will be in encouraging your child to listen to his or her body, to avoid becoming overly exhausted, and to learn how to balance periods of activity with rest breaks when needed. 

Nobody is going to be an instant expert at this - it will be a learning process for your child over the course of the illness. The main thing to keep in mind is that nothing your child does is going to make the MS either better or worse in the long term. The goal is for your son or daughter to be as active and involved as possible, while maintaining an optimal comfort level. To find out more, you can check out Multiple Sclerosis Education Network.

Multiple Sclerosis Health Insurance Coverage

Dealing with Insurance Issues
 
SINCE INSURANCE PROGRAMS vary so widely from one country to another, and one insurance company to another, this part provides only general recommendations. The most important thing to keep in mind is that getting and maintaining health insurance for your child is a critical step in obtaining the care he or she will need along the way. There are a variety of resources available to help you navigate the challenges relating to insurance, including your state's insurance commissioner's office (http://www.patientrights.com/links/links7.htm) and the National MS Society. 
 

Multiple Sclerosis Health Insurance Coverage

The Society chapter closest to you (call 1800-FIGHT-MS) can help you find answers to your insurance questions, and Georgetown University maintains a website that describes health insurance options in each state (www.healthinsuranceinfo.net).
 
In the meantime, familiarize yourself with the coverage offered by your current policy. You will be in a far better position to advocate for your child if you have spent time getting to know the basic elements of your plan, including:

• Eligibility requirements (who is covered under what circumstances).
• Benefits (which services/treatments are specifically included or excluded and what are the limits on the coverage provided).
• Regulatory information (who is responsible for enforcing the provisions of the plan, and to whom would appeals be addressed if needed).
• Coverage parameters affecting cost (how can you utilize your plan most effectively to minimize out-of-pocket costs). 
• Grievance procedures (what is the grievance/appeal process). 

Parenting Tips Along the Way 
WHILE MS IS only one part of your life with your child, it obviously adds some additional complexities to the parent-child relationship. Some of the major concerns that parents have raised about how to help their child along the way are addressed.
 
Talking about the Diagnosis
 
PARENTS OFTEN WONDER how much information about MS they should share with their child. No parents want to make their children anxious or sad, and no parents wants to see their children having to deal with life's tougher realities any sooner than necessary. The fact is, however, that children know when they do not feel well and they know when their parents are worried or upset. If they sense that something is different or awry, their imaginations will quickly fill in the blanks - typically with something even more frightening than whatever the reality actually is.

Your best strategy is to begin sharing age-appropriate information (including the name of the disease) with your child from the beginning. Without this information, it will be much more difficult - and stressful - for your child as he or she undergoes neurologic exams, tests, and treatments. Obviously, five-year-olds do not need or understand as many of the details as teenagers do; and their style of listening, learning, and questioning will be quite different, but the sharing of information can help any child feel more comfortable with the diagnosis and treatment process. There are other benefits as well to this kind of openness: 

• When children have a better understanding of what is going on, they feel less like victims and more like active participants. Rather than things being done "to them," they feel safer and more involved in the process of dealing with the MS.
• Honesty and open communication promote feelings of trust and confidence among family members. They set the stage for shared problem-solving and mutual support in the future, and eliminate the need for secrets relating to MS or any other issues that may come along.
• Children gain a feeling of security when they sense that their parents are being open and honest. When parents come across as secretive, unwilling to share information, or afraid to discuss certain topics, children quickly assume that the truth is too awful to deal with, too frightening to handle. 
• Talking openly with children about MS gives them "permission" to ask their questions and share their feelings and concerns. It also gives them the vocabulary they need to put them into words.

If you are feeling uncertain about how to proceed - and most parents do - the healthcare team, the Family Network, and/or a family counselor can help you figure out age-appropriate ways to begin the discussions with your child. To find out more, you can check out Multiple Sclerosis Health Insurance Coverage.

 

Parenting Kids With Multiple Sclerosis Symptoms

Managing Your Own Feelings
 
PARENTING IS NEVER easy. Given the complexities of MS and its treatment, you may find yourself struggling more than usual to figure out how best to help your child. The first step in taking of your child is taking care of yourself. Just as the flight attendant instructs you to put on your own oxygen mask before helping anyone with you who requires assistance, your ability to support your child's adaptation to MS will depend on your own level of health and well-being. 
 

Parenting Kids With Multiple Sclerosis Symptoms

Dealing with your feelings about this unexpected diagnosis is a good place to start. Common feelings among parents who have a child with MS include anxiety, grief, anger, and even guilt. The guilt is most often related to parents' concerns that they might have caused the disease to happen, or somehow failed to keep it from happening. While there is much that is still unknown about MS, we do know that there is nothing that you or your child did to make this happen. 

MS is thought to be an immune-mediated disease that is triggered by some viral or bacterial agent in the environment, in people who have a genetic predisposition to respond to it. The risk of developing MS in the general population is about 1 in 750. The level of risk rises - to approximately 1 in 40 - for any individual who has a close relative with the disease, and is higher still in families in which several people have MS.
 
The sadness is related primarily to feelings of loss. Every parent wants his or her children to be healthy and happy, and every parent works hard to make it so. No one wants a child to have to live with a chronic illness, deal with uncomfortable symptoms, cope with impairments of any kind, or be limited in the things he or she can do or enjoy. 

Parents are saddened by their inability to prevent these things from happening, and find it difficult to watch their children having to deal with these issues. The good news is that the medical community has learned a great deal over the past 10-15 years about how to manage the disease and reduce its impact on everyday life.

The unpredictability of MS makes parents feel anxious and as well. Moms and dads want to know what is going to happen next, and what is going to happen in the future, and they may feel very frustrated when no one can give them answers. The normal questions that all parents have - will my child have a good life ... get a good education ... find a good job ... get married ... have children ... be happy ... be healthy ... are magnified when a child has MS. Anxiety and anger are also normal responses to feeling out of control, and unpredictability and unanswered questions always make people feel less in control. Because of the unpredictability of MS, the lack of clarity concerning the diagnosis, and the limited numbers of children with this disease on which to base predictions and recommendations, parents do not have a clear road map to tell them what to do.
 
The best way to deal with these kinds of uncomfortable feelings is to recognize what they are and where they come from, and develop coping strategies that feel right for you. The first step is to find healthcare providers with whom you and your child feel comfortable and confident. While no one has all the answers, you will find that being able to communicate openly about the diagnostic issues and the treatment options will go a long way toward helping you feel a bit more in control of the situation. 

As your youngster grows and approaches different developmental milestones (e.g., entering the teenage years, preparing to leave home, etc.), the healthcare team will be able to help you and your child make the necessary transitions.
 
Some people also need to find others with whom to discuss their feelings - a dose friend, a National MS Society staff member, a support group, or a counselor; others find that exercise or meditation or an engaging hobby help them maintain a sense of balance and reduce the stress. The particular method you choose does not matter; what matters is that you take care of your own emotional needs so that you are better able to help your child and engage in the kind of creative problem-solving that is likely to be required along the way. 

If you and your spouse or partner are having difficulty communicating about your respective feelings, or find that your coping strategies differ to the extent that it causes conflict, a family counselor who is familiar with MS can be a helpful resource. You can ask your chapter of the National MS Society for a list of therapists in your area who are familiar with MS. To find out more, you can check out Parenting Kids With Multiple Sclerosis Symptoms.

Multiple Sclerosis Doctor For Kids

Finding the Right Doctor for Your Child
 
CHILDREN WITH MS are being cared for by a variety of physicians, including family practitioners, pediatricians, adult neurologists (both general neurologists and MS specialist neurologists), and pediatric neurologists. Your National MS Society chapter will be able to give you the names of any physicians in the area who have an interest and expertise in treating children. 
 

Multiple Sclerosis Doctor For Kids

Given, however, that most physicians have little or no experience with MS in youngsters, there may not be anyone close to you who has ever seen a child or teen with MS. If there are none within a reasonable distance, you have a couple of other options. You can travel to a pediatric MS Center or your local physician can consult with the neurologists at these centers or with the Society's Professional Resource Center (by calling 1866-MS-TREAT or by emailing MD_info@nmss.org). 

Of the few experts focusing on childhood MS, most are eager to offer suggestions and support to local doctors. Whichever option(s) you choose, it is important that both you and your child feel comfortable with the doctor and his or her staff, able to communicate your questions and concerns, and supported in your efforts to manage the disease. You also need to feel confident that the health care team is a partner in your advocacy efforts with insurance companies and the school system. Particularly in a disease for which there are no sure-fire answers, the relationship with the doctor is a critical component of the coping and adaptation process.

Encouraging Your Child Relationship with the Doctor 

AS IS TRUE of medicine in general, but particularly with a chronic disease in which there are very few clear-cut answers, the person's relationship with the physician and other clinicians (e.g., the nurse, physical therapist, occupational therapist, counselor, etc.) is an integral part of the treatment. Ideally, the patient is the hub of the treatment team, whether the team is located in one comprehensive care facility or is spread out in many different offices. The patient's needs determine the treatment(s), and his or her responses to the care provide the feedback that is so essential to clinicians' treatment decisions. Over the course of the disease, your child will learn to partner with the healthcare team in his or her own care.
 
With very young children, the parent obviously acts as the child's surrogate - providing information to the doctor and explanations to the child, answering questions, making decisions. While it is often a parent's instinct to shield a child from something that may be frightening, withholding information - such as the name of the disease - is not beneficial. Even school-age children need to be part of the communication process since this is the way that they will begin to develop their own relationship and partnership with the healthcare team.
 
By the time a child is in high school, he or she may well want some time alone with the doctor or nurse. Parents can encourage this by coming to an agreement with their child and the doctor that recognizes the child's need for privacy but also makes clear that important decisions need to rest with the parents. As in virtually all areas of development, the teen years are a time of preparation for independence and self-reliance, and the MS arena is no different. The goal is to help kids become ready to manage their own MS, work effectively with their doctors and other providers, and make healthy decisions and choices on their own behalf.  

This is a gradual process that begins with helping your child develop a comfortable relationship with his or her doctor. By the late teen years, your child will need to be making many of his or her own treatment decisions. While this can be difficult for parents to handle, it is just one more part of your teenager's need to forge an independent road. Like many other areas of life, it means that your child may sometimes make decisions that you would make differently for him or her, or for yourself.

Your best strategy is to try and ensure that your child maintains a good relationship with his or her doctor and access to accurate, up-to-date information, and then be available to offer guidance and support when the need arises.
 
While parents generally see their children off into the world with a sigh of relief, a pang (or more) of anxiety, and a wave of sadness, parents of a child with MS face an even greater challenge. You will want more than anything to be able to watch over your youngster, make sure he or she is eating right, getting enough rest, taking medications on a consistent basis, and doing whatever else the doctor has recommended. 

As with all the other health and wellness issues that worry parents of teens and young adults these days, however, the choices will ultimately be your child's to make. While always important, your child's relationship with the healthcare team can be vital at this time. Many kids who resist listening to or confiding in their parents at this time will stay in close touch with their doctors. To find out more, you can check out Multiple Sclerosis Doctor For Kids.

Early Symptoms Of MS In Children

Visible and Invisible Symptoms 
 
THE PHYSICAL SYMPTOMS of MS tend to be fairly easy to spot; a child who is experiencing pain or weakness or stiffness is likely to be able to describe it. The less visible a symptom is, the harder it may be for you to recognize or understand. The most common of these is fatigue. While fatigue in MS can result from a multitude of factors, including some medications and/or sleep disturbances caused by physical discomfort or urinary problems, the primary fatigue of MS - sometimes caused lassitude - is caused directly by the disease itself. 
 

Early Symptoms Of MS In Children

This fatigue can be overwhelming at times, and may not be relieved by rest or sleep. Fortunately, there are activities as well as medications that have been found to be helpful in managing this type of fatigue. Aerobic exercise and the use of appropriate mobility devices to conserve energy can be very helpful.
 
A child complaining of this type of fatigue is not being lazy or avoiding chores; MS fatigue is reported by many adults with MS to be their most debilitating symptom. It makes it very difficult for many adults to function in the workplace, and may interfere with your child's ability to participate fully at school, even if he or she has no visible physical symptoms. There are effective strategies for coping with MS-related fatigue; adjusting one's schedule, for example, so that the most demanding activities are done in the morning (when fatigue is typically less) is one of many that can be used to combat this symptom. Your physician or healthcare provider will be able to suggest additional strategies for dealing with MS fatigue.
 
Cognitive and emotional changes can also be difficult for children, as well as their parents and teachers, to recognize and understand. Cognitive changes are relatively common in MS. While there is some disagreement among clinicians about whether cognitive symptoms are more or less common in children than they are in adults, experience suggests that they can occur in childhood MS as well as in adults with the disease. 

Studies indicate that approximately 50% of people with MS will experience some changes in their cognitive functions over the course of the disease, with the most commonly reported problems being with learning and memory, the processing of incoming information (attention and concentration), planning and decision-making, processing visual information, and understanding and using language. It is important to be aware of the possibility of these types of problems because they can occur at any point in the disease, even as an initial symptom. That means that cognitive and emotional changes can occur in a child who has a lot of physical changes or someone who has none.
 
These usually subtle changes can interfere with school performance. Some MS experts recommend that children have regular cognitive evaluations beginning at the time of diagnosis, in order to establish the child's baseline abilities and detect any problems that may crop up along the way. Early recognition of a child's problems with thinking or memory makes it possible for the school to address any special needs a child might have in the classroom. 

Special accommodations, such as sitting at the front of the classroom for example, can help overcome limitations in attention that some children with MS may experience. A child with MS who is experiencing academic difficulties may benefit from an evaluation by a psychologist or neuropsychologist who can make the appropriate recommendations to the school for improving learning and attention.

Navigating the Healthcare System
 
ONE OF THE biggest challenges parents face is finding and accessing the best possible care for their child. MS is a relatively uncommon illness (approximately 400,000 people in the United States, compared to 9.6 million with cancer, for example, or 15,000,000 with diabetes) and MS in children is actually relatively rare. As a result, many - if not most - physicians and other health professionals, hospitals, and insurance companies may have no experience with youngsters with MS, and may not even know that early-onset MS is possible. 

This means that at the same time you are educating yourself about MS, you are probably going to have to educate others as well. You will likely need to advocate for your child every step of the way. Arming yourself with information about the disease and available resources will be your very best strategy in this advocacy effort. To find out more, you can check out Early Symptoms Of MS In Children.