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Pediatric Palliative Care Key Elements in an Emerging Discipline. Moderator: Russell K. Portenoy, MD Panelists: John M. Saroyan, MD Debra F. Fox, APRN, FNP-BC, CHPN Katherine Leonard, MD Erica Rosenbaum, LMSW. Case #1. 11 month old female Epidermolysis bullosa, junctional type

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Pediatric Palliative Care Key Elements in an Emerging Discipline


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    1. Pediatric Palliative Care Key Elements in an Emerging Discipline Moderator: Russell K. Portenoy, MD Panelists: John M. Saroyan, MD Debra F. Fox, APRN, FNP-BC, CHPN Katherine Leonard, MD Erica Rosenbaum, LMSW

    2. Case #1 • 11 month old female • Epidermolysis bullosa, junctional type • Extensive skin & gastrointestinal lesions • Failure to thrive • Significant developmental delay • PE: Extensive desquamation to arms, legs; scapulae and sacrum • Comfort care; DNR

    3. EpidermolysisBullosa

    4. Management Epidermolysisbullosa • Pain management • Methadone 0.1 mg po tid +Morphine prn • Parental concern over “addiction” • Principle of double effect • Dressing changes • Management of other symptoms • Pruritis, irritability, dyspnea • Feedings • Medications • Formulations with and without feeding tube

    5. Management Epidermolysisbullosa • Psychosocial support in • Recessive autosomal inheritance • Well, “unaffected” sibling • Multiple loss bereavement • Home health nursing + palliative care • Opportunities for collaboration with industry and national organizations

    6. Case#2 • 10 y/o girl • ALL • s/p standard chemotherapy, not a BMT candidate, Phase I and II trials exhausted • Transfusion dependent • Referred to hospice on discharge from hospital

    7. Management of Advanced Cancer in children • Symptom control • pain, nausea, dyspnea, fear and anxiety, insomnia • Goals of care • transfusion, feeding, antibiotics, code status • Transition to Home • Family, Patient and Community Support at end-of-life and through bereavement

    8. Concurrent Care for pediatric hospice patients • Brief overview • ~. State and Federal guidelines • ~. Incorporating Pediatric hospice and palliative care within the guidelines of concurrent care

    9. Case #3 • 6 y/o boy • temperature and blood pressure abnormalities • dystonic posturing • diaphoresis and erythroderma • severe neurologic impairment following meningitis/encephalitis • generalized tonic-clonic seizures • Multiple ED visits • ICU admissions over three years with multiple prolonged intubations, sepsis work-up (including spinal taps), many pneumonia

    10. Case #3 • Diagnosis • Neuroirritability • Treatment • Clonidine • Clonazepam • Diazepam PR • Goals of Care and Home Services