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.
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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.