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

More documents

Recommendations

Info

chapter 19 Infants and Children with Primary Immunodeficiency Diseases Most children with primary immunodeficiency diseases continue to play, go to school and socialize normally.
Infants and Children with Primary Immunodeficiency Diseases 105 Introduction If your child has received the diagnosis of a primary immunodeficiency disorder, it is important to understand the role you will play in the child’s future. It would be nice to think you could adjust to this new role slowly, however, unless there is a family history, you are presented with a number of new challenges with little preparation. One of your first challenges is to minimize the impact of chronic illness upon the child’s life without compromising their care. Once the diagnosis of a primary immunodeficiency has been made, children must learn how to live with this diagnosis on a daily basis. Although having a primary immunodeficiency disease is a chronic disorder, the symptoms and their impact on the child will vary considerably. The diagnosis of a primary immunodeficiency does not mean that the child will be sick every day. Most diagnosed children will continue to play, go to school and socialize normally. Understanding the diagnosis, using preventive measures, and communicating with medical professionals will help you, your child, and your family live with this chronic health condition. The family as a whole is affected by any chronic illness and should be encouraged to participate in decision-making events that affect the family unit. Family stresses on top of those encountered while managing chronic illnesses can be minimized if recognized early and addressed immediately. Communication with all parties is essential. Dealing with a chronic illness in an infant or child can be very emotional. Fear of the unknown can be one of the most prevalent emotions, but can be easily controlled with education. If you want your child to grow up and be able to handle their own care, lead by example. Don’t feel ashamed to seek help from medical professionals or others in your situation, and look for credible information sources. Coordinating Your Child’s Care When your child is diagnosed with a primary immunodeficiency disease, you become part of your child’s health management team and his or her primary advocate. Your role in monitoring your child’s symptoms and responses to treatments and communicating your observations and concerns is vital to the medical team’s assessment and treatment of your child. In many cases, more than one physician will be involved in caring for your child; therefore, coordinating communication and keeping comprehensive and accurate records of your child’s medical course is essential. Many parents suggest that a diary is an invaluable tool to document events affecting your child’s medical care. Recommendations for items to be kept in the diary include: • A brief history leading to the diagnosis that can be written by the parent or a physician • Copies of laboratory evaluations confirming the diagnosis • A current list of physicians caring for the child with up-to-date addresses and phone numbers • A chronology of important events, specifically noting types of treatment and therapy, changes in therapy and subsequent responses to that therapy • A current up to date list of the child’s medications • Allergies to medications • An immunization record or lack of immunization • Current insurance information • Explanation of benefits records can be kept in the diary or separately, but should be periodically reviewed for accuracy Insurance concerns that arise are more easily resolved through the use of the diary. The diary may be especially useful if the child should need to see a new physician, especially in an emergency. This form of accurate information shortens the lengthy, often repeated history-taking sessions by new physicians, allowing for more time to focus on the immediate issue at hand. It is wise for more than one person in the family to be aware of the child’s medical routine. A well-documented diary can be extremely helpful for those times when the child is in the care of caregivers other than parents.
Page 1 and 2:
Patient & Family Handbook For Prima
Page 3 and 4:
Patient & Family Handbook For Prima
Page 5 and 6:
Patient and Family Handbook i Prefa
Page 7 and 8:
Patient and Family Handbook iii Abo
Page 9 and 10:
The Immune System and Primary Immun
Page 11 and 12:
The Immune System And Primary Immun
Page 13 and 14:
Page 15 and 16:
Page 17 and 18:
Page 19 and 20:
Common Variable Immune Deficiency c
Page 21 and 22:
Common Variable Immune Deficiency 1
Page 23 and 24:
X-Linked Agammaglobulinemia chapter
Page 25 and 26:
X-Linked Agammaglobulinemia 17 Clin
Page 27 and 28:
Selective IgA Deficiency chapter 4
Page 29 and 30:
Selective IgA Deficiency 21 Clinica
Page 31 and 32:
Severe Combined Immunodeficiency ch
Page 33 and 34:
Severe Combined Immunodeficiency 25
Page 35 and 36:
Page 37 and 38:
Page 39 and 40:
Chronic Granulomatous Disease 31 De
Page 41 and 42:
Chronic Granulomatous Disease 33 Di
Page 43 and 44:
Chronic Granulomatous Disease 35 Tr
Page 45 and 46:
Wiskott-Aldrich Syndrome 37 Definit
Page 47 and 48:
Wiskott-Aldrich Syndrome 39 Maligna
Page 49 and 50:
Wiskott-Aldrich Syndrome 41 Treatme
Page 51 and 52:
Hyper IgM Syndrome 43 Definition of
Page 53 and 54:
Hyper IgM Syndrome 45 Treatment of
Page 55 and 56:
DiGeorge Syndrome 47 Definition of
Page 57 and 58:
DiGeorge Syndrome 49 Therapy for Di
Page 59 and 60:
IgG Subclass Deficiency and Specifi
Page 61 and 62: IgG Subclass Deficiency and Specifi
Page 63 and 64: Ataxia Telangiectasia 55 Definition
Page 65 and 66: 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
Page 95 and 96: General Care 87 Exercise Participat
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
Page 111: Specific Medical Therapy 103 Gene T
Page 115 and 116: Infants and Children with Primary I
Page 117 and 118: Infants and Children with Primary I
Page 119 and 120: Adolescents with Primary Immunodefi
Page 127 and 128: Adults with Primary Immunodeficienc
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
Page 156: This publication has been made poss
show all

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

You also want an ePaper? Increase the reach of your titles

Delete template?

Save as template?