4

The Bumpy Bone Club Survi

Tools for kids to use with theirdoctors and schools

Created and published by:

MHE and Me - A Support Group for

with Multiple Hereditary Exostoses and Th14 Stony Brook Drive, Pine Island, NY 1

845-258-6058, mheandme@yahoo.com, www.m

The MHE Coalition, 8838 Holly Lane, Olmsted F440-235-6325, CheleZ1@aol.com, www.mhec

Revised October 2005

We are happy to share these tools with other groupMHE and Me and The MHE Coalition when adapting

use by your group.

Chapter Five 1

Nicole Wynn, 1

val Guide

families,

Kids eir Families 0969, heandme.com

alls, OH 44138 oalition.com

s. Please credit the enclosed for

Section One

The Bumpy Bone Tracker

Appointment Date:________________________ Time:_______________________ Doctor:______________________________________________________________ Concerns to Discuss:___________________________________________________ ___________________________________________________________________ Examination Notes:____________________________________________________ X-rays Taken:________________________________________________________ Recommended Treatment:______________________________________________ ___________________________________________________________________ Next Appointment:____________________________________________________

To keep track of bumps, it can be helpful to use a color-coded system using tiny stickers or markers, with one color for bumps that you’ve known about, one color for areas that have been operated on, and one color for new bumps that you’ve become aware of since the last examination, bumps that have been

causing pain, or other problems that you’ve noticed. This will help you and your child keep track, and will give the physician an instant overview of things to look for.

Chapter Five Section One 2

Chapter Five Section One 3

The Bumpy Bone Pain Tracker

There are many ways to use the Pain Tracker. Using colored markers, draw a line from the picture to a line below and write down all the words that describe the at part of your body.

se a different color for each part that is hurting you. Older children nd teens may want to simply list the name of each bone and pain escriptions below. Use your creativity and find the way that best uits your child. For younger children, please see the following page. or all ages, see the pain diary.

_______________________________________________________

_______________________________________________________

_______________________________________________________

Here are some words that can help describe how it feels when you hurt. Use these or your own words.

ching Bad Spreading Sore hrobbing Pounding Horrible Punishing hooting Pins and Biting Lonely tabbing Needles Cold Sickening harp Deep Warm Pinching urning Stinging Miserable Lonely

pain you are feeling in thUadsF _ _ _

ATSSSB

Chapter Five Section One 4

Chapter Five Section One 5

The Bumpy Bone Pain Tracker For Little Kids!

www.mheandme.com

HOW DO YOU FEEL?

Put a mark on the line that shows how you feel. If you don’t have any pain, put a mark near the happy face. If you’re hurting, put a mark

near the sad face. If you hurt a little, put a mark in the middle.

Where Does it Hurt? Illustrated by Nicole Wynn, 14

Let your child color in each of the squares below in a different color. Explaining what each color means, let him or her then color in the

drawings to show how each part of the body feels.

Pain Diary

Chapter Five Section One 6

This diary can be kept by parents and/or child. Make additional copies as needed, or print from the MHE and Me website www.mheandme.com Where was the pain? ain Tracker and show where the pain is on the pictu , or describe the location here).

__ _______________________________________________________

Was any treatment tried? Describe: ________________ ______________ _ Did How long did the pain last? __________________________________ For young children, what was the child’s behavior like during this episode of pain (crying, withdrawn, cranky, etc.): ___________ ________________________________________________________ Additional comments or notes:________________________________ ________________________________________________________

(You can attach a copy of the Pre

_____________________________________________________

When did the pain start? ___________________________________ Activity when the pain started (Sleeping, running, walking, sitting, climbing stairs, playing a sport, etc.):_________________________ _______________________________________________________ How bad was the pain on a scale of 1 to 5, with 5 being the worst?___ Describe the pain (You might want to see if some of the words listed on the Pain Tracker describe your pain)_________________________ ________________________________________________________

(Medication, heat, ice, rest, etc)__________________________

_______________________________________________________

it help?_______________________________________________