|THE MHE AND ME
July 30, 2003
|The Bumpy Bone Club
Stories, poems, questions and answers, and word games by kids with MHE...
|The Bumpy Bone Club: Tools to Help Your Family and Your Doctor Help You!
The Bumpy Bone Tracker Kris Davidson in California shared this idea with us a few years ago. It has now been upated.
The Bumpy Bone Pain Tracker: Sarah Ziegler, National Director and Coordinator of Research for The MHE Coalition came up with this great idea as a way to help her son communicate his pain.
Pain Tracker for Little Kids
There are some excellent pediatric pain links below! Be sure to check them out
Print out these pages, keep them in a looseleaf notebook. They are good tools for keeping track of your child's condition and for communicating with your child's doctor.
Nicole (Updated 4/21/03)
Avery (Updated 12/2/00)
Jessica (Updated 2/18/03)
Frances (Updated 4/17/03)
Mandy (Updated 3/03)
Aimee (New Story)
Victoria (New Story)
Nicole, Age 11
Chris, Age 12
Theresa, Age 14
Jessica, Age 13
Frances, Age 10 New Page!
An Angel Taught Me A Lesson
by Jessica, Age 13
QUESTIONS FOR BUMPY
BONE CLUB MEMBERS
Read what Conor, Nicole, Nic, and Jake and new teen member, Rochelle, and Jessica have to say... (Updated 1/28/02)
Rachel's MHE Word Games
|MHE KIDS & SCHOOL|
|The MHE and Me Handbook - A Guide for Family, Friends, Teachers, and Classmates
The MHE and Me Handbook is available in a Spanish Translation...
La Osteocondromatosis Múltiple Congénita; guía para familiares, amigos, maestros y compañeros de clase.
and an Italian Translation...
Manuale: MHE E Me - Una guida per famiglia, amici, Insegnanti e compagni di scuola
We are pleased to announce that the Handbook is available in Japanese and German through those support groups (links below...)
Translations of the Handbook in French and Norwegian will soon be available, and we are trying to obtain a translation in Russian...
MHE Kids School Needs Checklist
Issues to Address with your Child's Teacher and Other School Staff
Common School Concerns for Students with MHE
|The MHE Coalition: This group, formed in February 2000 by members of MHE and Me, MHE Yahoo GroupsSupport 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 800 families worldwide!|
|The MHE and Me Teen Scene
A Section for kids entering or in Middle, Junior, or High Schools
|Advice for kids and teens from others going through the same problems, and links to sites aimed at helping kids deal with teasing depression, and other issues. Read what Emmon, Jessica, Nicole, Amy, Tina, Joshua, Kenney and Jessica have to say.|
|The MHE Yahoo Groups E-mail Support Group: This international e-mail support group offers communication with over 200 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 MHE Family Support Group: This is the original MHE support group, whose informative web site has been a first link for many with MHE|
|THE BUMPY BONE CLUB
|The HME Yahoo Club and Webring:|
|Hereditaire Multiple Exostosen Lotgenotencontactgroep - Netherlands|
|Drawings by children and teens affected by MHE...Come visit the Gallery - New Drawings & New Artists|
|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
|The "We Care Corner"
For parents, sisters, brothers, families, and friends of kids with MHE
|HME YahooGroups Japan - Click Subscribe|
|WELCOME from Susan and Cassie
"Conor's Spirit Bead" by Cassie
|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.|
|A letter to the members of the Bumpy Bone Club from a friend of Nicole
Andrea (In a new poem, Andrea shares what it feels like when her sister undergoes surgery...)
Audrey & Gerry
Joan Fleitas - The creator of The Band-Aides & Blackboards Web Site
|HELPING YOUR CHILD COPE WITH CHRONIC ILLNESS, TEASING, DEPRESSION|
|Band-Aides & Blackboards: When Chronic Illness...or Some Other Medical Problem...Goes to School. This wonderful site was the inspiration for MHE and Me and will interest both you and your children. Take some time to read the stories of children who are courageously dealing with a variety of medical problems and disabilities - including some of our own MHE kids! Joan Fleitas, founder of this site, was invaluable in helping us create this site in July of 1999|
|GROWN-UPS SHARE THEIR
BUMPY BONE STORIES WITH KIDS
|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|
Ian - Mikey's Dad
|Depression in Children and Adolescents (National Institute of Mental Health)|
|PEDIATRIC PAIN LINKS|
|Apples and Oranges - Sorting out Pain with Kids (University of Iowa)
Pain, Pain, Go Away: Helping Children with Pain (from Izaak Walton Killam Children's Hospital and Dalhousie University, Halifax, Nova Scotia, Canada)
The Mayday Pain Project -Pediatric Pain Resources
|WHAT IS MHE?
Students who either have MHE or have family members with it have been researching and writing about the disorder that affects their lives, and share their efforts with us here.
|PEDIATRIC DISABILITIES LINKS|
|National Information Center for Children and Youth with Disabilities NICHCY|
|MHE (Multiple Hereditary Exostoses)
by Lisa, 6th Grade
|HELPFUL PRODUCTS RECOMMENDED BY PARENTS AND KIDS|
|Multiple Hereditary Exostoses
by Jake, 7th Grade
|AlphaSmart: Many children who have difficulty writing find the AlphaSmart a wonderful tool to help them take notes, write essays and reports, etc.|
|Multiple Hereditary Exostoses
by Nicole, 7th Grade
|Multiple Hereditary Exostoses
by Jessica, 9th Grade
|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|
|Hereditary Multiple Exostoses
by Shannan, College Freshman Anatomy Paper
|NOTE: If you or your child would like to have a web page on our site, please send your stories or poems to Susan at firstname.lastname@example.org. The Children's Online Privacy Protection Act became effective on April 21, 2000. In order to publish web pages for children under 13 we will need to have a Parental Consent Form mailed to us. For details, please see MHE and Me Privacy Notice and MHE and Me Parental Consent Form|
|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...|