Imagine that you are 8 years old, or maybe 15 years old, or the parent of a child who is 3 years old when he/she is diagnosed with multiple sclerosis. Where do you turn for information and support?
As we discussed last week, the National MS Society helped to establish the national Pediatric MS Centers of Excellence which provide diagnostic, treatment, and support services to children with MS or other related neurological disorders and their parents.
Beyond the medical care which you receive from a neurologist and staff, you will need resources aimed specifically at your needs. How do you know what your needs will be? You probably don’t.
Resources for the Parents
Working together the National MS Society and the Multiple Sclerosis Society of Canada created a fabulous question-and-answer guide for parents - Kids Get MS Too: A Guide for Parents Whose Child or Teen Has MS - published in 2003. This 101-page handout provides an introduction and overview of multiple sclerosis. It covers diagnosis and treatment, emotional issues, cognitive symptoms, your child’s rights in the educational system (in Canada), insurance issues (in Canada), and even provides further resources.
An updated and condensed version of the Guide for Parents was published in 2005 - Kids Get MS Too: Questions and Answers. Within the treatment section, Tysabri is not included because it wasn’t yet back on the market. But Tysabri is also used in pediatric MS patients.
In choosing one excerpt to feature, I believe that the following is an important one. A question which I’m sure you have had, even if you, the parent, is the one living with MS:
_Is it important that children and teens be told their diagnosis? _
Parents sometimes wonder if they should delay telling their child or teen about the MS diagnosis. There are very good reasons for talking about the diagnosis openly.
· Children and teens know when they don’t feel well; they are also very sensitive to their parents’ moods and state of mind. Without an open and honest explanation of what is happening, they will use their own imaginations to fill in the blanks and what youngsters can conjure up with their imaginations is almost always even scarier than the reality.
· Many children, particularly the younger ones, don’t have the vocabulary or concepts they need to express their concerns or ask their questions. When parents talk openly with their children about MS, they are giving their children the vocabulary they need to say what’s on their minds, as well as permission to say it.
· Additionally, youngsters with MS are going to have ongoing relationships with a variety of healthcare professionals; they are also going to be undergoing periodic medical examinations, evaluations, and tests of various kinds. Open, comfortable communication with these professionals, geared to the child’s age and level of understanding, will promote a trusting relationship and help make these experiences less frightening.
· Finally, children and teens need to be included in decisions about their care. When children are included in their own treatment planning, they are more likely to take medication and other therapies that are recommended._
The MS Society UK just opened a Facebook page for the parents of children living with MS. Download the Society’s handbook for parents with children diagnosed with MS.
Resources for Kids and Teens
As part of the Young Persons with MS Network, an entertaining activity book, Mighty Special Kids, is available for kids aged 5-12 who have MS. The booklet is designed to help families talk about MS and educate children who are diagnosed with MS. It includes games, interviews with kids who have MS, and family activities. Request a copy of this booklet from your local society chapter or check it out in an interactive online form. Games include a memory matching game, crossword puzzle, word search, and an innovative mood chart where the child can "draw" pictures of each member of the family.
A similar resource is provided by MS Trust UK. Download Kid’s Guide to MS here.
Keep S’Myelin is a quarterly kids newsletter offered by the National MS Society to help families talk about MS and help children who have a parent diagnosed with MS. Current and past issues can be downloaded or obtained from your local society chapter. Games (equally appropriate for children diagnosed with MS) include jokes and riddles, interactive games, comics, family activities, and more. The newsletter is currently in its 24th edition.
The MS Society of the United Kingdom has developed a unique online resource, Young MS, for kids and teens, each age group having their own section. The Kids section features "Sparks, Volts, and Joules" robotic hosts eager to answer questions which kids may have regarding MS. The information is specialized both for children who have been diagnosed with MS and for those who know somebody else diagnosed with MS. The Robo-Build tool is really cool and fun, too.
The Teen section of Young MS speaks well to that age group. In the Life and MS section, registered users can post to a message board. The Got Questions? section covers the most common questions and features real people and their real stories. Users can submit additional questions or their own story. The News Section include information appropriate for both teens and parents.
A fantastic booklet was written by a young MS patient, Elaine Mackey, to help her friends understand what MS is and how it affects her. Read or download Elaine’s book - "Dear Friend, I Have MS: A Book for Friends of Teens with Multiple Sclerosis"
Visit the Multiple Sclerosis Resource Centre for additional information regarding pediatric MS, including stories of teens, children, and families living with MS. Much time could be spent reading the stories archived here. Please do go visit, you will be glad you did.
Visit the National MS Society website for more information. Call 1-866-KIDS W MS (1-866-543-7967) or e-mail email@example.com
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.