IDF Patient & Family Handbook for Primary Immunodeficiency ... - IDFA

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110 Infants and Children with Primary Immunodeficiency Diseases How to Ask Questions That Get Children Talking Open-ended Questions “What kind of questions do you have?” is very different than “Do you have any questions?” “What do you think will happen?” “What do you think is the best (or worst) thing that could happen?” “What are you wondering about?” Multiple Choice “I’ve read (or heard) that lots of kids whose brother or sister is in the hospital worry that...” then offer several likely possibilities (such as, it could happen to them, they won’t be able to do things their friends are doing like the school trip). Ask “What has this been like for you?” When You’re Concerned About A Specific Behavior “I’ve noticed that you’re not eating much lately, and that’s not like you. I think there’s something on your mind.” “Lately, you’ve been getting angry about things that don’t usually bother you. Why do you think that is?” Playing and Learning from Your Children Pretend Play/Dramatic Play By using dolls, animals, action figures, even cars and trucks, children play out their experiences. Adults can learn what is on children’s minds by watching and by participating. Play with cars can become play about the mommy car, the daddy car, the baby car, the big brother car. To learn the most from your children, guide the play gently— perhaps setting the characters (“You be the mommy and daddy dolls, and I’ll be the baby and sister dolls”) and setting the scene (“The mommy and baby dolls are at the hospital. What do you think is happening there?”). Using questions such as “What does he say?” or “What is she thinking/ feeling now?” can further extend the play. Usually children take over the play and begin to direct all of the characters. If you sense that your child is reluctant or wants to do different play, give him or her the freedom and control to move on. Drawing Children often use drawing and other forms of art for emotional expression. Encouraging children to talk about their drawings or artwork can be eye-opening for adults. Open-ended questions such as, “What is happening in this picture?; What is this person thinking or feeling?” or “Tell me the story of this picture.” can help you learn about your child’s inner world. Learn from your children by observing their behaviors and playing and talking with them. These connections will help you identify and change potentially problematic stress reactions before they interfere with your child’s normal activities.
Adolescents with Primary Immunodeficiency Diseases chapter 20 Differences in the coping styles of family members and variations in maturity through the adolescent years can all influence how well adolescents and their families will deal with a primary immunodeficiency disease.
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Patient & Family Handbook For Prima
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Patient & Family Handbook For Prima
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Patient and Family Handbook i Prefa
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Patient and Family Handbook iii Abo
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The Immune System and Primary Immun
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The Immune System And Primary Immun
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Common Variable Immune Deficiency c
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Common Variable Immune Deficiency 1
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X-Linked Agammaglobulinemia chapter
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X-Linked Agammaglobulinemia 17 Clin
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Selective IgA Deficiency chapter 4
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Selective IgA Deficiency 21 Clinica
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Severe Combined Immunodeficiency ch
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Severe Combined Immunodeficiency 25
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Chronic Granulomatous Disease 31 De
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Chronic Granulomatous Disease 33 Di
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Chronic Granulomatous Disease 35 Tr
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Wiskott-Aldrich Syndrome 37 Definit
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Wiskott-Aldrich Syndrome 39 Maligna
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Wiskott-Aldrich Syndrome 41 Treatme
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Hyper IgM Syndrome 43 Definition of
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Hyper IgM Syndrome 45 Treatment of
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DiGeorge Syndrome 47 Definition of
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DiGeorge Syndrome 49 Therapy for Di
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IgG Subclass Deficiency and Specifi
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IgG Subclass Deficiency and Specifi
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Ataxia Telangiectasia 55 Definition
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Ataxia Telangiectasia 57 General Tr
Page 67 and 68: Hyper IgE Syndrome 59 Definition of
Page 69 and 70: Hyper IgE Syndrome 61 Inheritance o
Page 71 and 72: Complement Deficiencies 63 Definiti
Page 73 and 74: Complement Deficiencies 65 Treatmen
Page 75 and 76: Other Important Primary Immunodefic
Page 77 and 78: Other Important Primary Immunodefic
Page 79 and 80: Inheritance chapter 15 Many disease
Page 81 and 82: Inheritance 73 Types of Inheritance
Page 83 and 84: Inheritance 75 Types of Inheritance
Page 85 and 86: Inheritance 77 Reproductive Options
Page 87 and 88: Laboratory Tests chapter 16 Laborat
Page 89 and 90: Laboratory Tests 81 Major Categorie
Page 91 and 92: Laboratory Tests 83 Summary Laborat
Page 93 and 94: General Care 85 General Health Meas
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Page 97 and 98: General Care 89 General Care During
Page 99 and 100: General Care 91 General Care During
Page 101 and 102: Specific Medical Therapy 93 Introdu
Page 103 and 104: Specific Medical Therapy 95 General
Page 105 and 106: Specific Medical Therapy 97 Hematop
Page 107 and 108: Specific Medical Therapy 99 Granulo
Page 109 and 110: Specific Medical Therapy 101 PEG-AD
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Page 133 and 134: Health Insurance chapter 22 Having
Page 135 and 136: Health Insurance 127 Who Are the
Page 141 and 142: Health Insurance 133 LIFETIME MAXIM
Page 143 and 144: Glossary 135 Gamma globulins: The p
Page 145 and 146: Glossary 137 Sepsis: An infection o
Page 147 and 148: Reference 139 NIH Clinical Trials w
Page 149 and 150: Reference 141 International Patient
Page 151 and 152: Reference 143 Manufacturing Compani
Page 153 and 154: Reference 145 Books For Youth Balkw
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