THE MHE AND ME SITE MAP

Last Updated 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 Pain Diary 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.

STORIES    Nicole (Updated 4/21/03)    Conor    Joe    Nic    Bobby    Amanda    Avery (Updated 12/2/00)    Jake    Reanna    Brittni    Tamra    Briana    Mikey   Jessica (Updated 2/18/03)   Frances (Updated 4/17/03)    Mandy (Updated 3/03)    Aimee (New Story)    Victoria (New Story) POEMS Nicole, Age 11 Chris, Age 12 Jessi,Age 14 Theresa, Age 14   Jessica, Age 13    Frances, Age 10 New Page! ESSAYS/STORIES 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) WORD GAMES 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

LINKS

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 ART GALLERY

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 POEMS   Andrea  (In a new poem, Andrea shares what it feels like when her sister undergoes surgery...)   Ally    Audrey & Gerry    Tabetha    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

Kim Sven-Erik Mike Roger Paula Jennifer Elizabeth Joel Ian - Mikey's Dad John

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 mheandme@yahoo.com.  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...