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

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116 Adolescents with Primary Immunodeficiency Diseases Your Adolescent’s Healthcare Providers Some adolescents may experience few medical problems that are related to their primary immunodeficiency disease while others may have very complex medical concerns that involve a number of physicians and other healthcare providers. Maintaining good communication with, and among, these providers is important to effectively manage a primary immunodeficiency disease. Clear and accurate information about both the history and current status of your adolescent’s health condition is needed by all who will be providing care. Healthcare providers need to know exactly what your adolescent is experiencing and how each of the providers is contributing to your adolescent’s care. To maintain clear communication and good teamwork with healthcare providers, keep a diary or notebook outlining your adolescent’s symptoms and treatments. Prior to a visit or phone call with your healthcare provider), use these notes to summarize your adolescent’s current condition and plan any specific questions that you may have. Ask all healthcare providers to provide you with copies of all major treatment summaries, laboratory and diagnostic test results, and correspondence. When requested by healthcare providers, help make sure that they are also copied with reports from other providers. Keep these organized in your adolescent’s healthcare notebook as a reference for new providers. Including adolescents in helping with this communication process will help then be ready for their adult role of managing their own healthcare. Transitioning from late adolescence into young adulthood may involve changing healthcare providers. This may occur as they move away from home to attend college or begin a career. For others, the transition occurs as older adolescents are shifted from pediatric care providers to adult care providers. Discuss this with current physician and healthcare providers for the best way to manage these care transitions. There may be times that are particularly stressful in family life. This may be from significant changes in family life, such as a change in parent employment, financial changes, a move, divorce or death. Or, the stress may be more directly related to coping with a primary immunodeficiency disease. Whatever the source of these high levels of stress, it can impact any healthcare problem, so do not hesitate to address the sources of family stress. Your adolescent’s physician should be kept updated on these matters, so that general guidance can be offered or a referral can be made to a family counseling professional for more specific help.
Adolescents with Primary Immunodeficiency Diseases 117 Your Adolescent’s School Some adolescents with a primary immunodeficiency disease will not experience any difficulties at school due to their particular condition. Other adolescents, with more substantial health concerns will need significant assistance in the educational setting. For adolescents with a number of concerns, you will be wise to make advance contact with school personnel to discuss your adolescent’s healthcare condition and how it may impact school. School personnel should be included in advance of problems with adequate information. They can often develop plans that will work to address concerns of reducing exposure to infection, coordinating schoolwork during absences, and providing certain modifications of schoolwork when needed. Federal and state educational regulations include requirements and guidelines for how schools should respond to a student’s health and its impact on their learning. Parents, school personnel, and the adolescent’s physicians and other healthcare providers can coordinate specific plans through mandated programs such as the Section 504 Plan or Individualized Education Plan (IEP). Additional information about these regulations and guidelines for modifying your adolescent’s educational setting are available through your local school district, Web sites of your state education department, student advocacy Web sites and in the Immune Deficiency Foundation’s publication, A Guide for School Personnel. Include your adolescent as much as possible in these planning meetings and discussions with school personnel. Just as adolescents need to develop skills in managing healthcare decisions, they need to develop skills in managing education decisions that lay the foundation for their future with college or career plans. For your older adolescent with college plans, be aware that there are also federal guidelines for higher education institutions. Many student service departments of colleges include resources for health, career, counseling, and other campus-based services that can help. When your adolescent begins to explore college choices, it may be useful to include visits with these services when touring campus or examining literature or Web sites. Adolescent Insurance Concerns Most young adults in this country are covered under a group insurance plan offered by one of their parent’s employers. Many of these employer sponsored plans end dependent coverage when the dependent child turns 19, if not attending college, or to age 23 or 25, if enrolled in school full-time. When dependent children are no longer eligible for group insurance under a parent’s plan, they are entitled for up to 36 months of COBRA coverage (if the employer has 20 or more employees). Some plans continue to cover totally disabled dependents as “adult disabled children” beyond the usual end date for dependent children. To know how dependents are covered under the employer sponsored health plan, the parents should ask their human resources department for a copy of the Summary Plan Description (SPD). A SPD is a requirement of the law (ERISA) that sets the terms of each employee benefit plan in a written plan document. Medicaid, usually available through the state’s Children’s Health Insurance Plan (CHIP), is another form of insurance that usually ends when the dependent child turns 19. Medicaid for disabled Supplemental Security Income (SSI) can end if the young adult is no longer designated as disabled or if income or assets exceed the allowable limits. Some states offer incentive programs to Disabled Medicaid individuals who work and make over a certain amount of money.
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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
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Hyper IgE Syndrome 59 Definition of
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Hyper IgE Syndrome 61 Inheritance o
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Complement Deficiencies 63 Definiti
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Page 79 and 80: Inheritance chapter 15 Many disease
Page 81 and 82: Inheritance 73 Types of Inheritance
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Page 85 and 86: Inheritance 77 Reproductive Options
Page 87 and 88: Laboratory Tests chapter 16 Laborat
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Page 147 and 148: Reference 139 NIH Clinical Trials w
Page 149 and 150: Reference 141 International Patient
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