INTRODUCTION
At the Barth Syndrome Foundation we share the American Academy of Pediatric's belief that family members are the primary caregivers and support in for the child who has a chronic illness. Our primary focus is on Barth syndrome. Physicians and health care organizations that are truly family-centered provide care in equal partnership with families, caregivers, and children. The Care Management Toolbox is now an electronic version of the Barth Syndrome Care Bag that was developed for our families in 2001.
The Care Management Toolbox provides you with a variety of tools, resources, and links to assist you with managing the complicated care for the person diagnosed with Barth syndrome. These tools should be maintained and kept in a personalized care notebook which is useful for families and caregivers to maintain a record of their child's...
- Medications
- Care recommendations
- Health history
- Contacts, services and providers
- Test results
Families and caregivers should bring their child's care notebook to all medical appointments, therapies, conferences, and vacations. The care notebook can be used to ensure that care is comprehensive, coordinated, and family-centered.
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Barth syndrome is an unpredictable health condition and during an intercurrent illness rapid decompensation is not uncommon. It is rare and complex. These resources are intended to improve outcomes for the individual with Barth syndrome during a emergency healthcare situation.
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Educational resources developed to address a variety of frequently asked questions.
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Barth syndrome is a complicated disease that affects numerous body systems. The patient often needs to see numerous sub-specialists for care. It is important for care to be managed by a physician with certain expertise.
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Notices to inform families and care providers about issues that could impact the health of a person diagnosed with Barth syndrome.
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Each of these Excel forms can be filtered by date, marker and value. The age of the individual should be entered cell (B1) in tab one in each spreadsheet. The individual's age will be calculated in column (B), after entering the date when the test was done in column (A). A graph of key test results are plotted in tab two of each form.
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This section contains a variety of forms to organize a hard copy medical binder. With robust electronic health records many people discount the value of having a hard copy medical binder. Both have their benefits, but we prefer good old paper records in a 3-ring binder will be there for you when technology fails. It's always a good idea to have a separate medical binder for each family member. The person with Barth syndrome may have several volumes.
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Sources and suggestions for organizing the medical binder.
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MedicAlert provides 24/7 services to facilitate communication of critical medical information to first-responders. As part of our partnership with MedicAlert, US-based affected individuals with a genetically or clinically confirmed diagnosis of Barth syndrome (or those who are enrolled in https://barthsydromeregistry.org) are eligible to receive a medical ID and initial 1-year Advantage Protection Plan. To enroll, please reach out to Melissa Huang (melissa.huang@barthsyndrome.org).
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Links to mobile apps, websites and other reference tools.
