Paediatric MS Resources

Paediatric MS Information

Although thought to be relatively uncommon, it is fast becoming clear that there is a gathering number of children and teenagers being diagnosed with Multiple Sclerosis around the world.

We hope to bring you as much information as possible with regards Paediatric MS.

If you are the parent of a child who has been diagnosed with MS, or a child/teen with MS we would like to hear from you.

Further Information

"Dear Friend, I Have MS: A Book for Friends of Teens with Multiple Sclerosis" is a fantastic booklet written by a young MS patient, Elaine Mackey, to help her friends understand what MS is and how it affects her.

You can read the book online, or download it from http://www.pediatricmscenter.org/Elaine.aspx

Keep S’Myelin is a quarterly kids newsletter offered by the US 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 from the link below or obtained, in the US,  from your local society chapter. 

Games (equally appropriate for children diagnosed with MS) include jokes and riddles, interactive games, comics, family activities, and more.

Website: http://main.nationalmssociety.org/KS/archives/issue1/index.html

In 2003, the National Multiple Sclerosis Society and the Multiple Sclerosis Society of Canada teamed up to publish Kids Get MS Too: A Guide for Parents Whose Child or Teen Has MS, a resource that, as its name suggests, provides a wide array of information for parents and families of children and teens with MS.

In addition to detailed information about MS and its effects in paediatric populations, the handbook also provides information about programs, sponsored by the National MS Society and the MS Society of Canada, that provide a support network for children and teens with MS, their parents and siblings.

CLICK HERE to view the handbook. (Requires Adobe Acrobat Reader DOWNLOAD FREE)

Although thought to be relatively uncommon, it is fast becoming clear that there is a gathering number of children and teenagers being diagnosed with Multiple Sclerosis around the world.

We hope to bring you as much information as possible with regards Paediatric MS.

If you are the parent of a child who has been diagnosed with MS, or a child/teen with MS we would like offer you all the assistance we can.

Email: [email protected]

Website: http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1460

In 2006, the US National MS Society established a nationwide network of six Pediatric MS Centers of Excellence to provide comprehensive evaluation and care to children and teens (up to age 18) with MS, and other related central nervous system (CNS) demyelinating disorders.

The centers were selected (through a peer review process) on the basis of having multidisciplinary teams of adult and child specialists; ties to an adult MS center; staff to evaluate and address school and other psycho-social issues; support for families; and the ability to work collaboratively with other institutions in the network.

Full details: http://www.nationalmssociety.org/about-multiple-sclerosis/pediatric-ms/pediatric-ms-centers-of-excellence/index.aspx

The Pediatric Multiple Sclerosis Alliance is a group created for parents with children with MS.

The group is designed to provide information, create awareness, provide a network of support for families, and promote a better understanding of pediatric multiple sclerosis.

Many parents have found they can chat, vent, question, etc. the disease and how it affects their children and families within the safety of the group and with the friends they meet here. And though opinions are welcome and respected, the Alliance requests that no controversial topics are discussed or argued. The Alliance also allows the opportunity for parents to celebrate their child's life and accomplishments through stories, photos, and frequent inspiring posts!

Though we have members from around the world, our group is small (but growing!). Help us bring greater awareness and attention to pediatric MS...Please find us on Facebook and join Pediatric Multiple Sclerosis Alliance.
 
If you need help, contact Elin (Swanbeck) Phillips on FB or at [email protected].

Parents with a child who has MS - http://www.facebook.com/pages/Parents-with-a-child-who-has-MS/106588076042648?ref=sgm

Open Group on Facebook

Email: [email protected]

http://www.facebook.com/home.php?sk=group_181376848543546&ap=1

An excellent resource for teachers and administrators would be Students with MS and the Academic Setting: A Handbook for School Personnel, a booklet created by the National MS Society. 

It is important that school personnel - teachers, nurses, administrators, bus drivers, etc, - become aware of the ways pediatric MS may affect your child at school.

Academic accommodations or modifications may be necessary to minimize the effect MS may have on the student’s learning and academic performance.  Although it is easier to respond to symptoms which are easy to see and understand (e.g., walking difficulties, balance problems, or tremor) than less obvious symptoms like fatigue and cognitive changes, all symptoms are equally important to recognize.

Specific physical and emotional stressors which students with MS may experience in school include:

• Bladder or bowel symptoms which require frequent, urgent trips to the bathroom
• Difficulty taking the stairs due to weakness, fatigue or poor balance
• Change in academic placement due to cognitive changes
• Visual changes which come and go and interfere with classroom functioning
• Depression or mood disorder
• Inconsistent level of empathy and support from school staff
• Isolation

You can read and/or download a copy of this useful booklet here.

For teens (ages 13 to 17) who have MS, or who have a parent or guardian with MS. We encourage you to invite your parents to participate here, too.

How to register:

• Go to http://www.msworld.org/
• Click on "sign up for MSWorld" at the top of the page
• Read and agree to the Forum/Chat rules
• Complete the registration information then click on "Complete Registration"

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.

In North America you can 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.

Website: http://main.nationalmssociety.org/MSkids/about/about_edition.html

The Pediatric Demyelinating Diseases Foundation (www.pddfoundation.org)  is an organisation created for families with children with Multiple Sclerosis and other demyelinating diseases. While we focus on paediatric MS, we give information and links to the Transverse Myelitis Association for NMO, ON, and TM.

Our goal is to raise awareness for the paediatric diseases and connect families across the world. Ultimately, we would like to be able to raise funds that would directly serve paediatric MS and demyelinating diseases, create “meet & greets” worldwide for families.

The organisation was born from the overwhelming response from our Facebook group, Pediatric Multiple Sclerosis Alliance (http://www.facebook.com/#!/groups/PMSalliance/). Our desire was to reach those families, parents, & caregivers that did not utilise Facebook and give them a place to find information, read stories about REAL children with MS, and perhaps gain a contact to reach out to.

A spin off from the Alliance FB group is a group designed specifically for kids with MS; a place for them to post, chat, and connect is Pediatric Multiple Sclerosis Group – Unite, Believe, Cure (http://www.facebook.com/#!/groups/320497841301336/). This group was started by a teenage girl in Arizona who wanted to connect with other MS kids.

The PDDF was created by not a mother of a child with MS but a woman with the disease who found her passion and mission with the children. The children are her daily inspiration that if they can do it, so can she!

Website: http://www.pddfoundation.org

The Kids section features “Sparks, Volts, and Joules” robotic hosts eager to answer questions which kids may have regarding MS. 

The information is specialised both for children who have been diagnosed with MS and for those who know somebody else diagnosed with MS.

The Teen section of Young MS has various sections. 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.

Website: http://www.youngms.org.uk/Home

Young Persons with MS: A Network for Families with a Child or Teen With MS is a collaboration between the MS Society of Canada and the National MS Society (USA) (NMSS).

It is a support network that provides multiple program options for families living with a child or teen who has been diagnosed with multiple sclerosis.

For more information on childhood MS, specific programs and resources, or to join the Young Persons with MS Network, please contact:

Canada

Coordinator of the National Information Resource Centre
MS Society of Canada
175 Bloor Street East, Suite 700, North Tower
Toronto, Ontario, Canada
M4W 3R8

Phone: Toll free within Canada: 1 866 922-6065

Email: [email protected]

United States

National Multiple Sclerosis Society

Phone: Toll Free: 1 866 KIDS W MS (1 866 543-7967)

E-mail: [email protected]

Website: http://mssociety.ca/en/pdf/YoungPersonsMSform.pdf

© Multiple Sclerosis Resource Centre (MSRC)