Partners Pediatric Multiple Sclerosis Center

 
 

Resources for Parents

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Introduction: 

      Parents of children and teens with MS have the difficult task of helping to manage their child’s illness while keeping family life going.  They must continue to address the needs of other children and family members, continue family traditions, and keep up at their jobs and other responsibilities.  Parents must also make sure to take care of themselves, in the context of concern about their child.

 

      The Partners Pediatric MS Center strives to provide support to parents and families, as well as assisting them to connect with sources of support in their communities.  Since pediatric MS is relatively uncommon, parents of other children and teens with MS can be excellent sources of support for each other.  The Partners Pediatric MS Center, in collaboration  with the National MS Society, strives to provide opportunities for parent and families to interact, including the following programs:  

 

Patient and Family Programs

The Partners Pediatric MS Center, in collaboration with the Central New England Chapter of the National Multiple Sclerosis Society (NMSS), conducts periodic meetings and programs for families in which a child or teen has MS.

 

For more information, please contact David Rintell or Amber Stalker, or visit our Patient Programs page , which lists both upcoming and previous programs.

 

 

Teen Adventure Weekend

Teen Adventure Weekend is a free four-day program for teens with MS, held at a camp on the Rhode Island Shore in Exeter, RI. The recreational and team building program includes activities such as kayaking, sailing and even rope climbing. It will be held during two weekends during the Summer of 2008. It is fully staffed with medical professionals from the Stony Brook Pediatric MS Center, and from what we hear, lots of fun!

For information, contact Maria Milazzo.

 

Online Discussion Groups

   

For Parents

   

An online opportunity to share experiences, information, and concerns with other parents who have a child or teen diagnosed with MS, and live in the New England area. This discussion group will be facilitated by David Rintell, the psychologist at the Partners Pediatric MS Center. 

Please contact David if you are interested in participating.

   

For Teens

   

For Teens Only! An online opportunity to chat with teens who have MS in the New England area. This monthly discussion group will be moderated by David Rintell, the psychologist at the Partners Pediatric MS Center. It is currently in the planning stages.

Please contact David if you or your teen may be interested.  

 

   

Young Persons with MS: A Network for Families with a Child or Teen with MS

   

Young Persons with MS: A Network for Families with a Child or Teen With MS (formerly Children with MS: North American Family Support Network) is a support network that provides multiple program options for families living with a child or teen who has been diagnosed with multiple sclerosis.

   

This program is a collaborative effort between the National MS Society and the MS Society of Canada. Together we recognize the unique needs of these children and realize that their parents and siblings may need a variety of support services and programs.

    

The network targets two distinct populations:

  • Children with MS (18 years and younger)
  • Parents of a child or teen with MS

   

The Network currently offers the following to children and teens with MS and their parents. For more information about teleconferences and the email groups, please contact Kim Koch, or call 1-866-KIDS-W-MS (1-866-543-7967).

 

   

Parents Handbook

   

Kids Get MS Too: A Guide for Parents Whose Child or Teen has MS, is an informational handbook containing a wide range of information pertaining to pediatric MS. The handbook was written by specialists in childhood MS.

To download the handbook, see the Publications section below.

 

   

Teleconferences

   

Teleconferences, featuring specialists in the field of pediatric MS, are offered for parents. Topics typically relate to research, treatment, cognitive issues, and rights within the school system.

 

   

Email Group For Parents

   

The Network connects parents through an email list serve group where they can share concerns and information, and develop a support network.

   

Email Group For Teens

   

The Network also connects teens through an email group especially for them. The group allows teens to "meet" other teens, share concerns and information, and develop a support network. The group is moderated by a National MS Society staff member.

 


Publications

   

"Kids Get MS Too: A Guide for Parents Whose Child or Teen Has MS" is a publication of the MS Societies of Canada and the US. It is a comprehensive guide to pediatric MS, and includes sections on diagnosis, treatment, emotional issues, cognitive symptoms and a great glossary to help you understand the medical terminology used in diagnosing and treating MS. It is available from the Partners Pediatric MS Center in print, or you can download it below:

Kids Get MS Too: A Guide for Parents (PDF document)

   

"Mighty Special Kids" is a booklet for children who have MS. It's a lively and entertaining publication which helps kids understand MS, treatments, suggests ways to talk to friends about having MS, family issues, and even includes some fun games. It is available online in an interactive version:

Mighty Special Kids Online

   

The National MS Society has brochures, booklets, and books about many aspects of MS. For example, they have booklets directed at children of parents with MS, teenagers who have a parent with MS, and another one about working together as a family. Many of their print resources are available on their web site, and are also available at your local chapter. You can phone their central number and be connected to your local chapter:

1-800-Fight-MS (1-800-344-4867)

   

Teens Inside MS is a publication for teens whose lives have been affected by MS. This means teens who have a parent with MS, and teens who have MS themselves. Kaley Zeitouni, a teen with MS, writes a column in every issue. One useful column is "Talking to your friends about MS". It is also available online:

"Talking to your friends about MS" Column

 

Books

 Curing MS - Dr. Howard Weiner, the Director of Partners MS Center in Boston, has written a book called Curing MS: How Science is Solving the Mysteries of Multiple Sclerosis. It is a very interesting book which takes you behind the scenes in the labs as scientists and doctors study and test treatments for MS. It can help you gain a solid understanding of MS without being a list of all the bad things which the illness might do to you.

 Books by Rosalind Kalb - Rosalind Kalb is a psychologist who has worked for many years with people with MS and their families. She has authored many books and articles. (Note that they have been writing with adults with MS in mind.) A suggested reading is Multiple Sclerosis: The Questions You Have, The Answers You Need.

 Another recommended book by Rosalind Kalb is Multiple Sclerosis: A Guide for Families.

On The Web

There are many sites on the World Wide Web which come up as results when you conduct a search. However, many sites do not provide accurate information about MS. The sites listed below are dependable and can be recommended.

The pharmaceutical companies which offer medications for MS also have websites. These sites often have useful information directed at patients who are using their medication. There are also commercial sites, which are used to market each company's medication. Patients find these sites useful, but remember to read the information in the light of the marketing efforts employed there.

 

Recommended Sites

The National Multiple Sclerosis Society site is full of useful information, and is fairly conservative about the information published, so it is very reliable.

National Multiple Sclerosis Society (nmss.org)

   

The Multiple Sclerosis International Federation site is a link to people with MS all over the world, and it is a good site to learn about current research. They send out an email newsletter which updates people about current published research.

Multiple Sclerosis International Federation (mfis.org)

   

The Partners MS Center site is a good source of information, particularly about current available treatments which are being used in multiple sclerosis. (It is our parent site, and also accessible from the navigation bar on the left.)

Partners MS Center

   

The National Institute of Neurological Disorders and Stroke, of the National Institutes of Health, is the government agency which funds research into MS, and the information on this website is reliable.

National Institute of Neurological Disorders and Stroke

   

The Pediatric MS Center at Stony Brook University (in New York state) was the first Pediatric MS Center in the US, and their site is a good resource.

Pediatric MS Center at Stony Brook University













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