Search Results: MCHLine

Annotation: This toolkit provides practical advice and guidance to families, educators and caregivers working to engage families in the process of improving systems of care for children and youth with epilepsy and other special health care needs, to improve community-based access to specialized medical services, and to improve the quality of care coordination in school settings. [Funded by the Maternal and Child Health Bureau]

Contact: John Snow, Inc., 44 Farnsworth Street, Boston, MA 02210-1211, Telephone: (617) 482-9485 Fax: (617) 482-0617 E-mail: [email protected] Web Site: http://www.jsi.com Available from the website.

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Keywords: Adolescents with special health care needs, Children with special health care needs, Community based services, Epilepsy, Families, Health care systems, Manuals, Parent participation, Schools, Service coordination

Annotation: This report examines the public health dimensions of the epilepsies with a focus on four areas: public health surveillance and data collection and integration; population and public health research; health policy, health care, and human services; and education for people with epilepsy and their families, health professionals, and the public. Recommendations are included.

Contact: National Academies Press, 500 Fifth Street, N.W., Keck 360, Washington, DC 20001, Telephone: (202) 334-3313 Secondary Telephone: (888) 624-8373 Fax: (202) 334-2451 E-mail: [email protected] Web Site: http://www.nap.edu $88.00 plus shipping and handling; also available from the website. Document Number: ISBN 978-0-309-25953-8.

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• Report Brief

Keywords: Data collection, Epilepsy, Health policy, Integrated information systems, Population surveillance, Professional education, Public education, Research

Annotation: This report summarizes joint work undertaken by Title V, clinical teams, and families to improve state systems of care for children with epilepsy and for infants needing follow-up after newborn hearing screening using a quality improvement approach. The report describes the approach; aims, changes, and measures; lessons learned; change strategies; data collection; and the role of families in quality improvement. [Funded by the Maternal and Child Health Bureau]

Contact: National Institute for Children's Health Quality, 30 Winter Street, Sixth Floor, Boston, MA 02108, Telephone: (617) 391-2700 Secondary Telephone: (866) 787-0832 Fax: (617) 391-2701 E-mail: [email protected] Web Site: http://www.nichq.org Available from the website.

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Keywords: Adolescents, Children, Community based services, Early intervention services, Education, Epilepsy, Families, Health care systems, National initiatives, Newborn hearing screening, Organizational change, Program improvement, Public health infrastructure, Quality assurance, Special health care needs, Statewide planning, Title V programs, Training, Young adults

Annotation: This guide is designed to assist parents and caregivers of children with epilepsy and seizure disorder in keeping health information and their child's health records in a central location. The guide provides answers to questions to help parents better understand epilepsy and seizure disorder; learn about access to care and services; reach out to other parents; and learn about additional resources. The appendixes include forms to help parents keep a log of their child's diagnosis, seizures, visits to the doctor and medications taken, and communication with health professionals and organizations. The guide is available in English, Spanish, and Farsi. [Funded in part by the Maternal and Child Health Bureau]

Contact: University of Southern California University Center for Excellence in Developmental Disabilities at Children's Hospital Los Angeles, 46550 Sunset Boulevard, Mailstop #53, Los Angeles, CA 90027-0980, Telephone: (323) 361-2300 Secondary Telephone: (323) 480-4192 Fax: (323) 361-8305 E-mail: [email protected] Web Site: http://www.uscucedd.org/ Available from the website.

• Resource Page For English, Spanish, And Farsi Versions

Keywords: Children with special health care needs, Consumer education materials, Epilepsy, Forms, Medical records, Non English language materials, Parents, Seizures, Spanish language materials, child care workers

Annotation: This toolkit is designed to be a resource guide and information referral source for parents or caregivers whose child has recently been diagnosed with epilepsy. Contents include information and tips with links to downloadable tools. The toolkit is organized into the following six sections: About Epilepsy, Managing Epilepsy, Daily Life with Epilepsy, Life Stages with Epilepsy, Resources, and Forms. A DVD that chronicles the experiences of three families raising a child with epilepsy is also available. [Funded by the Maternal and Child Health Bureau]

Contact: National Center for Project Access, Epilepsy Foundation, 8301 Professional Place, Landover, MD 20785, Telephone: (301) 332-1000 Web Site: http://epilepsyfoundation.ning.com/group/accesstohealthcareisnotanoptiontest Available from the website.

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• Additional Information

Keywords: Children with special health care needs, Consumer education materials, DVDs, Epilepsy, Parents, Resource materials

Annotation: This pamphlet provides information about maintaining oral health in people who take antiepileptic medications. Topics include seeking medical attention for oral injuries such as those resulting from a fall during a seizure, drugs associated with oral health problems, and the role of routine oral hygiene and dental visits in preventing tooth decay. Tips for eating right and limiting snacks, brushing and flossing, using a disclosing agent, visiting the dentist regularly, and getting more information are included.

Contact: Epilepsy Foundation , 8301 Professional Place, Landover, MD 20785-7223, Telephone: (800) 332-1000 Secondary Telephone: (866) 748-8008 Fax: (301) 577-2684 E-mail: [email protected] Web Site: http://www.epilepsyfoundation.org Available from the website.

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Keywords: Adults, Dental care, Dental hygiene, Educational materials, Epilepsy, Medications, Oral health

Annotation: This report focuses on needed changes in Washington, DC's health services delivery system for children and adolescents with epilepsy and provides information relevant to strategic planning and development of activities. The report, which includes an executive summary, discusses findings from the literature and presents estimates of the number of children and adolescents with epilepsy in DC who are enrolled in Medicaid. The report then uses a key informant interview report, a report of the school nurses survey, and focus group findings to assess the services available to children and adolescents with epilepsy in DC, from the points of view of both health professionals and families who use the services. Next, the report presents a comparison of hospitalization rates for children and adolescents with epilepsy across insurance types as one measure of the effectiveness of services for this population. The report's final section discusses characteristics of an effective system of care for children and youth with epilepsy and provides recommendations. Endnotes are included.

Contact: Urban Institute, 2100 M Street, N.W., Washington, DC 20037, Telephone: (202) 833-7200 Fax: (202) 467-5775 E-mail: http://www.urban.org/about/contact.cfm Web Site: http://www.urban.org Available from the website.

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Keywords: Access to health care, Adolescents with special health care needs, Children with special health care needs, District of Columbia, Epilepsy, Families, Health care systems, Health services, Health services delivery, Low income groups, Medicaid

Annotation: This book explores the culture clash between a refuge family from Laos and a small county hospital in California over the care of a Hmong child diagnosed with severe epilepsy. The lack of understanding between the doctors and the child's parents and their differences in ideas about the causes of the illness and its treatment eventually result in a tragic outcome. The book explores issues of culture, medicine, immigration, and the war in Laos. The book is a winner of the National Book Critics Circle Award for nonfiction.

Contact: Farrar, Straus, and Giroux, Macmillan, 18 West 18th Street, New York, NY 10011, Telephone: (212) 741-6900 E-mail: [email protected] Web Site: http://us.macmillan.com/fsg.aspx $10.20, plus shipping and handling via Amazon.com.

Keywords: Child health, Communication, Cultural barriers, Cultural beliefs, Epilepsy, Medicine, Sociocultural factors, Treatment outcome

Annotation: This manual, a product of an interagency project between the Virginia Departments of Health and Education, is a guide for parents and professionals on the management of nutrition problems of school children with special needs. It helps school personnel plan nutrition services for students who have special health needs or are chronically ill. The information included facilitates the management of special diets and the expansion of nutrition education in the school curriculum. It includes information on these topics: common nutrition problems and interventions during the school day; dietary considerations of specific conditions and related factors; and nutrition goals and objectives for the individualized education program. Dietary considerations and sources of information and/or nutrition education materials for the following conditions are discussed: cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, juvenile rheumatoid arthritis, phenylketonuria, seizure disorders, spina bifida, constipation, feeding abnormalities, and tube feeding. Nine case studies are presented. The appendix includes information on lunch menu ideas for special diets, nutritious snacks, textural modifications, arthritis diet and drugs, complications of tube feeding, and PKU diet free foods. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHI113.

Keywords: Cerebral palsy, Children with special health care needs, Constipation, Cystic fibrosis, Diabetes mellitus, Down syndrome, Enteral nutrition, Epilepsy, Feeding disorders, Individualized education programs, Juvenile rheumatoid arthritis, Nutrition, Phenylketonuria, School food services, Spina bifida

Annotation: This project studied the effects of epilepsy on pregnancy outcomes. The purpose of the study was to: (1) Examine the outcome of infants exposed in utero to antiepileptic drugs and/or to maternal seizures, and compare their outcome to that of a group of infants without such exposure; and (2) look for correlates in pregnancy (i.e., seizure type and frequency, and antiepileptic drug use) that may predict adverse outcome. A group of pregnant women with epilepsy, a group of nonepileptic pregnant women, and the case and control infants were followed for a period of three years. Case children had a statistically significant higher mean number of minor anomalies per child (5.05) than the control children (3.65). Given the results of the study, with similar rates of malformations with exposure to the common antiepileptic drugs, it was suggested that maternal antiepileptic drugs be chosen for the most effective maternal seizure control. Further research is needed to address the neurodevelopmental effects of these medications. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB92-135870.

Keywords: Bayley Scales, Birth Defects, Breastfeeding, Child Development, Epilepsy, High risk infants, High risk mothers, High risk pregnancy, Neuromotor Status, Parent-Child Interaction, Pregnant Women, Seizures, Stanford-Binet IV

Annotation: This book was written for school professionals: teachers, principals, administrators, school nurses, aides, assistants, other health professionals, and for parents or guardians. It contains information on a wide range of health conditions and physical disabilities and how these conditions affect students while in school. The book is divided into six parts: (1) planning school health services, (2) selected chronic health conditions, (3) basic care guidelines, (4) mobility and the student with physical limitations, (5) guidelines for orthopedic care, and (6) guidelines for emergency situations. Very specific instructions for a wide variety of situations are included, along with diagrams and a glossary.

Keywords: AIDS, Asthma, Child health, Children with special health care needs, Chronic illnesses and disabilities, Diabetes mellitus, Epilepsy, School health services, Special education

Annotation: This manual is intended for school personnel who work with students with chronic health conditions or physical disabilities. The manual has six main sections. Part one describes the role the school plays in planning services for students with chronic health conditions or physical disabilities. Part two provides information about asthma, diabetes, and epilepsy. Part three contains instructions for daily care procedures, focusing on hand washing, medication, and feeding through a gastrostomy tube. Part four provides a framework for dealing with mobility problems and students with physical limitations. Part five includes instructions on how to use orthoses and prostheses. Part six offers guidelines for school personnel in health-related emergencies. [Funded by the Maternal and Child Health Bureau]

Keywords: Accessible facilities, Adolescents with special health care needs, Asthma, Children with special health care needs, Chronic illnesses and disabilities, Diabetes insipidus, Diabetes mellitus, Emergencies, Epilepsy, Gastrostomy, Manuals, Orthopedic devices, Planning, Prostheses, School health services, School personnel, Self care, Students

Annotation: This self-management program for people with epilepsy comprises three modules: medication taking, stress, and sleep management. Each module lets an individual read information, respond to questions, receive feedback, and watch and listen to testimonials. Strategies to improve epilepsy self-management and set goals that are personalized to meet specific needs and concerns are included. The program also includes MyLog, a personal journal for tracking seizures, medication, stress and sleep patterns, and receive personalized feedback about how medication taking, stress, and sleep may affect or improve epilepsy.

Contact: Emory University Rollins School of Public Health, Grace Crum Rollins Building, 1518 Clifton Road, Atlanta, GA 30322, Web Site: http://www.sph.emory.edu Available from the website.

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Keywords: Chronic illnesses and disabilities, Disease management, Epilepsy, Self care