MHE and Me
LINKS
Sites to help kids cope with chronic illness, teasing, depression, chronic pain and other issues; MHE organization links, and helpful products recommended by kids and parents.
The MHE Coalition: This group, formed in February 2000 by members of MHE and Me, MHE Yahoo Groups Support Group and the MHE Family Support Group, and the MHE Yahoo Club has been working to promote and encourage research, provide needed services and support to families living with MHE, has created a research section on their website to benefit patients and physicians alike, is creating a national directory of physicians treating MHE, and more...There are now over 1,000 families worldwide!
The MHE Yahoo Groups E-mail Support Group: This international e-mail support group offers communication with over 300  families affected by MHE.  Once on the egroups site, type M_H_E in the search field. For further info, contact CheleZ1@aol.com
The HME Yahoo Club and Webring
INTERNATIONAL MHE SUPPORT GROUPS
Hereditaire Multiple Exostosen Lotgenotencontactgroep - Netherlands
Multiple Kartilaginare Exostosen - German Support Group
Hereditary Multiple Exostoses Support Group: This U.K. based support group maintains a very informative web site and hosts an international notice board
AMEM - French support group for families affected by multiple hereditary exostoses.
AFAEM - Grupo de Apoyo a las Familias con Exostosis Multiples - new Spanish support group
Norway - www.mhesiden.comThis is a new group formed by families affected by MHE. These families traveled to the US to attend the 2009 Gathering and, at their request, a conference on creating a support and advocacy network.
Shriners Hospitals: In 19 hospitals throughout the US, Mexico, and Canada, this organization provides orthopedic care and rehabilitation services free of charge to children up to 18 years of age. Many children with MHE have been treated at these facilities.
Conditions & Diseases Health Directory (You'll find MHE links in the Musculoskeletal section, congenital disorders subcategory)
HELPING YOUR CHILD COPE WITH CHRONIC ILLNESS, TEASING, DEPRESSION
How Parents Can Help Their Child Cope with a Chronic Illness -and Helping Children Handle Teasing - from the Center for Effective Parenting - Follow link at bottom of page to Handouts
Depression in Children and Adolescents (National Institute of Mental Health)
Band-Aides and Blackboards This amazing site was the inspiration for MHE and Me over 7 years ago. It has information on all aspects of the effects of chronic illness on kids
and teens.
PEDIATRIC PAIN LINKS
The Mayday Pain Project -Pediatric Pain Resources
Pediatric Pain - Science Helping Children (Pediatric Pain Research Lab, IWK Health Centre and Psychology Dept of Dalhousie University, Halifax, Nova Scotia
PEDIATRIC DISABILITIES  LINKS
National Information Center for Children and Youth with Disabilities NICHCY
WHEN YOUR CHILD NEEDS SURGERY
Ask NOAH (New York Online Access to Health) About: Surgery
Preparing the Toddler for Surgery
Preparing the School-Aged Child for Surgery
KidsHealth
HELPFUL PRODUCTS RECOMMENDED BY PARENTS AND KIDS
AlphaSmart: Many children who have difficulty writing find the AlphaSmart a wonderful tool to help them take notes, write essays and reports, etc.
AquaShield Reusable Cast Cover: This waterproof cast cover was child-tested and received "rave reviews" for making bathing, swimming, and other water sports possible. It is available in adult and child sizes
Xerosox Waterproof Cast Cover: Highly recommended by a mom whose son had broken his leg. He used the Xerosox every day for showering and swimming, and the cast never got wet. Has a thick, non-skid sole.  Was recommended in an article in Good Housekeeping Magazine. The sales staff received rave reviews from this mom, too!
Comfort Bath: These rinse-free, disposable cloths with Aloe and Vitamin E can be heated in the microwave. They come in very handy in the days following surgery, when bathing may be difficult   Though we haven't tried these yet, just saw an ad for a rinse-free shampoo/conditioner cap by the makers of Comfort Bath...
Some New Recommendations...
BrokenBeauties.comThis company is "dedicated to taking the "ugly" out of orthopedics with our fashionable slings, cast covers, aromatheraphy heat packs and more...".  Check out the web site. They have all types of items including arm slings, cast covers, crutch covers, hot and cold therapy items, bathing and mobility aids, scar treatment, cast care - even gift baskets!
Advanced Comfort: My daughter, Nicole, has had difficulty sleeping for many years. We've tried everything from piling up the bed with comforters, pillows and featherbeds, to buying an inflatable mattress with pillow top.  Nothing really helped.  We happened on this mattress by accident. One day at the mall, Nicole couldn't walk any longer and we needed to find a place for her to sit. We happened to be near the Advanced Comfort store, so we wandered in and Nicole sat on one of the display beds. I started talking to the manager about Nicole's difficulties, and he suggested she lie down on one of the foam mattresses.  She did, and found it to be very comfortable.  These mattresses are expensive, so we considered this for some time, going back to the store a few times and having Nicole test it out.   We finally decided to go for it, and it was the best thing we could have done.  These mattresses are designed to eliminate pressure points - and that means less pressure on exostoses when lying down. Nicole has never slept better!   It doesn't relieve all nighttime discomfort, but it has made a tremendous difference in Nicole's life.  The model mattress we got from this particular company is the Versailles.  A more well-known brand is Tempur-Pedic, and there are now many other companies offering these Visco-Elastic foam memory mattresses.
The Therapy Shoppe: This catalog was recommended to us by the occupational therapist in our school district.  There are many items here that can benefit kids with MHE.  Among our favorites are the seat cushions, which are tremendous help to kids with hip and pelvic tumors.  These include the Move'n Sit and Move 'n Sit Junior Cushions, and the Fit-Sit Cushions.  Nicole has been bringing a cushion to school every day for the past four years. The catalog also has lots of writing aids, including pencil grips, special pens like the Evo pen and Writing Bird, and items like squeeze balls, fidget toys and other things that can benefit kids with hand and wrist problems.
Functional Solutions: This is another catalog that has many items that can help both kids and adults who have mobility problems.  Items range from sock aids for those who can't bend down to get their socks on and off to  long handled brushes and combs for those who can't  reach up to brush hair. There are accessories for wheelchairs and walkers, therapy putties (again, great for hand problems), and many  types of  items designed to help improve quality of life for physically- challenged people of all ages.
Assistive Technology News Link - wwwAxistive.com
This page was last updated on
November 17, 2009