ahf helping schools brochure

HELPING SCHOOLS HELP OUR CHILDREN

A guide to help children with hemophilia thrive in school.

Is your son or daughter

starting in a new school?

Perhaps starting school for

the first time? Do they have a

new teacher? Or have several

throughout the day? This

guide is aimed at assuaging

your fears and giving you

steps and tools you can use.

We’re here to help.

Helping Schools Help Our Children3

TABLE OF CONTENTS

INTRODUCTION 4

KNOWLEDGE IS EVERYTHING 7

THE MEETING WITH YOUR SCHOOL 10

TALKING POINTS 13

CARE NOTES 23


INTRODUCTION

MOST FAMILIES are a little nervous as September comes near or the year brings a change to a new school. But this nervousness becomes anxiety when you are the parent or caregiver to a child with hemophilia. School means that our children are away from home for more than seven hours a day with “strangers.”

We want children to live their student lives as much like other children as they can. We want them to build their abilities and not be stopped by their hemophilia. And we don’t want others to act as if our children were different or sick. We want to protect our children from other people who may not be aware or may be afraid, and we also want others to understand that our children have special strengths along with some limitations. So, we need teachers, school administrators and school nurses to know about hemophilia and to help our children be safe and happy while at school.

HOW CAN WE HELP OUR SCHOOLS, teachers and school nurses help our children be safe and happy? We need to teach them how. This requires your active support and management.

1. Hold a meeting with your child’s teacher(s) and the school nurse.

2. Try to have this meeting before school begins.

3. You won’t need a doctor. You are the best person to give the schools the information they need.


KNOWLEDGE IS EVERYTHING.

HEMOPHILIA IS A LIFE-LONG DISORDER that occurs in three levels of severity. You will need to help them understand which kind of hemophilia your child has. Your child may be mild, moderate or severe. Knowing which your child has will help others understand how often to expect your child to have a bleed that will need clotting factor. It will also help them understand how often your child may need to visit the school nurse, how often you may need to be called to get him from school, and how often to expect absences due to hemophilia treatment. If your child uses factor on a regular schedule, before bleeds start, you will need to let the school know that your child will rarely need to leave school to treat a bleed. If your child uses factor on demand, only when bleeds have already started, you will need to let the school know that your child will have to be released from school whenever it seems that a bleed has started.


TEACHERS AND SCHOOL NURSES need to know that their students with hemophilia are very much like their other students. Like other children, our kids play, learn, enjoy friends, get upset, are wonderful and sometimes a challenge. But they are also different. Our children are missing some or all of a protein that helps blood clot. These proteins are called clotting factors. These factors, which are missing or not working correctly, mean our children need to be watched closer and more carefully than other children. Sometimes bruises or cuts are on the outside. Sometimes bruises, strains or sprains happen and can cause bleeding inside the body. Your child will need more attention than other children to check for bleeding on both the inside and outside of the body. Your child will also bleed longer, not faster, than does a child who is not missing clotting factors.

“Information is the greatest step toward a positive, safe school experience.”

—MARK ZATYRKA, DIRECTOR OF MARKETING, AHF


THE MEETING WITH YOUR SCHOOL.

IT’S IMPORTANT TO VISIT YOUR SCHOOL to provide both reassurance and information about your child. But you don’t have to do this alone. In fact, it is very important to speak with the nurse at your Hemophilia Treatment Center (HTC) or clinic or the staff at your hemophilia chapter. You can also speak with your AHF pharmacist representative to help. You might ask for one of them to join you at this school meeting if at all possible. A nurse or social worker from the HTC, the clinic or the staff at your hemophilia chapter can often help to calm the fear that teachers or school nurses might feel about having a student with hemophilia. Let the HTC nurse coordinator, the social worker or health educator know that you plan to visit your child’s school to speak about your child’s hemophilia with the teacher, assistant teacher, teacher’s aide, school nurse and even the bus driver.


WORKING WITH one of these health professionals will also make it possible for you to give more detailed medical information. Across the country, hemophilia nurses, social workers and health educators join parents and family members as they go into the schools, helping teachers and school nurses help our children stay well and safe so they can learn and grow.


TALKING POINTS.

WHAT IS HEMOPHILIA? Hemophilia is a bleeding disorder that results in prolonged bleeding, primarily into muscles and joints. People with hemophilia do not bleed faster than people whose blood clots normally but they bleed longer (until they receive treatment). Extra attention may be necessary to avoid blood exposures involving young children.


WHAT DO THEY LOOK FOR? They will need to watch to see if your child is limping or not using his arm or hand, if an area is swollen or hot to the touch, or if he complains of tingling, bubbling, stiffness or pain. Any of these signs may mean a bleed inside the child’s body and may call for factor treatment right away. They will need to know that without clotting factor or with delays in getting factor, your child may suffer pain, swelling and joint damage. Injuries to the head are very dangerous and can be a matter of life or death. Injuries to the neck and throat are very serious, since blood and swelling in those areas may block your child’s airway. Complaints of stomach pain may indicate an abdominal bleed. In these and in all cases, teachers and school nurses need to know what to do to keep your child safe.

DOES CLOTTING FACTOR HELP? With clotting factor, our children can usually stop bleeding just as other children can. There are some serious exceptions to this rule. Bumps or injury to the head or neck always need to be treated as life-threatening. In other cases bleeding is usually not life-threatening. Teachers and school nurses need to know that factor needs to be used as quickly as possible to stop the bleeding, limit the pain and stop physical damage. They need to know that clotting factor is to be used as soon as a bleed begins and again until the bleeding is stopped (refer to the individual prescription to determine the length of time between doses). They also need to know that clotting factor medicines do not put the missing factor back forever and will be needed each time a bleed starts and until it stops.


WHAT ABOUT SELF-INFUSING? If your child self-infuses, teachers and school nurses will need to know that your child may ask to use the school nurse’s office to infuse clotting medication at school. In an emergency, the teacher or school nurse will need to contact you immediately. It will also be important to give the teachers and school nurses some idea of how often this may happen. You know your child’s history. Some teachers or school nurses might expect your child to have bleeds every day or every week. They might think that your child will be out of school many times a month. You can help them better understand what to expect and how best to help your child based upon your child’s history.


ARE THERE LIMITATIONS TO PLAYTIME? Teachers and school nurses need to know how your child plays and what playtime limitations you have set. Hearing that a child has hemophilia may make teachers or school nurses fearful. They may want to stop your child from playing games or sports. You need to let them know which games and sports are fine and which are not. Games and sports help build strong bodies. Strong muscles help joints stay safe and are very important for a child with hemophilia. Most of the sports in schools and most playground games are fine for most children with hemophilia.


HOW CAN THE CHILD HELP? The school needs to know you’ve taught your child to tell the teacher as soon as he feels that he is having a bleed. Your child’s words need to be trusted and acted upon right away. As young as four or five, our children have the words to say they are feeling a bleed. If your child says that he cannot play a certain sport or game because he is feeling tingling, warmth or bubbles, then the school staff will need to accept his words. If your child is very young, or might not ask for help quickly, then teachers and school nurses need to know how to tell when your child might be having an internal bleed.

SHOULD HIS/HER FRIENDS KNOW? If your child is at ease talking about hemophilia to classmates, then this may be the best way for classmates to ask questions and feel more at ease, too. How, when and with whom to share will be questions facing your child his whole life. This can be both a burden and a chance for growth. You may want to be a model for your child and have him join you in your meeting with school teachers and school nurses. In this way, your child remains the key part of his own care team. Some students do not want to talk with their classmates about their hemophilia. Some use their hemophilia to do a report or project. Some students may talk about factor treatment in health or science class. Some students might like to invite their family member or treatment center nurse to talk to their class about hemophilia. Whatever your decision, stress to the teacher and school nurse that it is yours to make. They do not have the right or the responsibility to share your child’s health information with anyone, unless they have your permission.

“In the mid-80s, we asked ourselves

how we might help the many

families who were living every day

with the same worries, fears and

challenges as we were. Our vision

was to bring families the very best

pharmacy homecare services

possible and to shoulder some of

their burden of living with bleeding

disorders. Our vision came to life

when we decided to create AHF.”

—DONALD COLBURN, AHF FOUNDER

WE ARE

DEDICATED

TO HELPING

CHILDREN

LIVE FULL,

NORMAL

LIVES.


CARING FOR A CHILD WITH HEMOPHILIA. NOTE: the following answers are merely a starting point. Each child is different and must be treated individually based on their unique condition.

IF A CHILD: Suffers a blow to the head, neck or stomach. YOU WILL NEED TO: Contact the parent/caregiver right away for instructions. If the parent/caregiver cannot be reached, contact the HTC or the child’s doctor. If neither the doctor, the nurse, nor the parent/caregiver can be reached, call an ambulance and contact the hospital emergency department.

IF A CHILD: Has any other complaints or injuries. YOU WILL NEED TO: Contact the parent/caregiver for instructions.

IF A CHILD: Has a typical nosebleed. YOU WILL NEED TO: Put on gloves. Position the child sitting up with nose forward. Apply firm ongoing pressure for 20 minutes. Call the parent/caregiver.

IF A CHILD: Has oozing from a cut in the mouth or around a tooth. YOU WILL NEED TO: Put on gloves. Apply ice with firm, ongoing pressure for 20 minutes. A wet tea bag can be applied around a tooth. Call parent/caregiver. Clean up all blood spills with a 10% solution of bleach and water.

Students may self-infuse in the school health room or school nurse’s office. Allow them to return to class when the infusion is done. In other cases, the parent or caregiver can be called to come to the school to infuse their child. Prompt treatment is urgent and helps an injury heal more quickly.

STUDENT:

PARENT/CAREGIVER:

HEMOPHILIA TREATMENT CENTER:

PHYSICIAN:

Need more information? Need assistance? We’re here to help. Just visit AHFinfo.com.

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31 Moody Road, P.O. Box 985Enfield, CT 06083

800.243.4621

FAX: 860.763.7022WEBSITE: www.ahfinfo.comEMAIL: [email protected]

SETTING THE STANDARD

OF HOMECARE FOR THE

BLEEDING DISORDERS

COMMUNITY

The information contained herein may not be construed as medical advice. It is for educational purposes only. AHF takes no responsibility for the accuracy or validity of the information contained herein, nor the claims or statements of any manufacturer. Please consult with your physician or the manufacturer regarding any health care questions you may have.

AHF does not engage in the practice of medicine. Under no circumstances does AHF recommend a particular treatment or medication for a particular individual. In all cases, AHF recommends that you consult a physician and/or your Hemophilia Treatment Center before beginning a specific treatment.

Copyright © 2014 by Diplomat Pharmacy Inc. and American Homecare Federation Inc. Diplomat and American Homecare Federation are either registered trademarks or trademarks of Diplomat Pharmacy Inc. All rights reserved. 001931-1114

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