Child Life Council : Diagnosis Specific

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Diagnosis Specific

AIDS/HIV

Adolescent Aids Program: www.adolescentaids.org

Books/Journals

Come Sit By Me By Margaret Merrifield, MD. ISBN: 0773759581

Submitted Resources

Child Life and HIV Education (PPT Presentation): Created by Katherine Cejda, MS, CCLS, St. Jude Children's Research Hospital, Memphis, TN

Allergies (see Asthma/Allergy)

Alzheimer's Disease

Books/Journals

What's Happening to Grandpa? By Maria Shriver. ISBN: 0316001015

Amputation

Ability Online: www.ablelink.org
Amputation Coalition of America: www.amputee-coalition.org
International Child Amputee Network: www.child-amputee.net
Limb Differences: www.limbdifferences.org

Books/Journals

Little Tree: A Story for Children with Serious Medical Problems By Joyce C. Mills. ISBN: 1591470412

Anorexia

Books/Journals

Your Dieting Daughter: Is She Dying for Attention? By Carolyn Costin (1996). ISBN: 0876308361
Preventing Eating Disorders Among Pre-Teen Girls: A Step by Step Guide By Beverly Neu Menassa (2004). ISBN: 0865693323

Arthrogryposis

Arthrogryposis Multiplex Congenita Support, Inc.: www.amcsupport.org

Asthma/Allergy

American Academy of Allergy, Asthma and Immunology: www.aaaai.org - The American Academy of Allergy, Asthma & Immunology is the largest professional medical organization in the United States devoted to the allergy/immunology specialty.
American Lung Association: www.lungusa.org - The mission of the American Lung Association is to save lives by improving lung health and preventing lung disease. In a special section devoted to the topic of asthma, you will find in-depth information including asthma and older people, teens and asthma, asthma medicines and attacks, peak flow meters, and home control of allergies and asthma. Additionally, they have an interactive game site for kids ages 5-10 called Lungtropolis.
The Consortium on Children’s Asthma Camps: www.asthmacamps.org - Plays an important role in coordinating the activities of asthma camps nationwide, promoting the quality of medical care and asthma education, and advancing the positive impact of the camps on the lives of children with asthma.
KidsHealth (Web site section on asthma):www.kidshealth.org/kid/health_problems/allergy/asthma.html - KidsHealth is the largest and most-visited site on the Web providing doctor-approved health information about children from before birth through adolescence. Created by The Nemours Foundation's Center for Children's Health Media, the award-winning KidsHealth provides families with accurate, up-to-date, and jargon-free health information they can use. The site has separate sections for kids, teens, and parents.

Autism

Books/Journals

A Parent’s Guide to Autism By Charles A. Hart. ISBN: 0671750992
Andy and his Yellow Frisbee By Mary Thompson. ISBN: 0933149832 .
Siblings of Children with Autism By Sandra L Harris and Beth A Goldberg. ISBN: 9781606130742

Brain Injury (see Neurological Impairments/Brain Injury)

Burns

Phoenix Society for Burn Survivors: www.phoenix-society.org - The Phoenix Society for Burn Survivors strives to empower anyone affected by a burn injury through peer support, education, and advocacy. The website includes a helpful section providing resources to assist with school reentry after a burn injury: www.phoenix-society.org/programs/schoolreentry/.
Alisa Ann Ruch Burn Foundation: www.aarbf.org - The Alisa Ann Ruch Burn Foundation (AARBF) is a California-based nonprofit organization dedicated to preventing burns and fires and providing services to those who have been affected by a burn injury.
International Association of Burn Camps - Member Camps: www.iaburncamps.org/membership/member-camps

Reference Articles

Foley, K. Hurlin OTR, BCP; Kaulkin, C. CCLS, MA; Palmieri, T. L. MD; Greenhalgh, D. G. MD. Inverted Television and Video Games To Maintain Neck Extension: Journal of Burn Care & Rehabilitation. 22(5):366-368, September/October 2001. Review Abstract.

Cardiac

Kids With Heart NACHD - www.kidswithheart.org

Craniofacial

About Face International: www.aboutfaceinternational.org
Foundation for Faces of Children: www.facesofchildren.org
Children's Craniofacial Association: www.ccakids.com

Cystic Fibrosis

Cystic Fibrosis Foundation: www.cff.org

Books/Journals

Taking Cystic Fibrosis to School by Cynthia S. Henry. ISBN:1891383094
Grab 'N Go. Cystic Fibrosis Foundation.
Day to Day- Know Your Health Insurance Coverage. Cystic Fibrosis Foundation
Day to Day- School and CF. Cystic Fibrosis Foundation
Cystic Fibrosis in the Classroom. In English. In Spanish. Hard copies available. Cystic Fibrosis Research, Inc.

Videos & Other Media

Jerry Cahill's Cystic Fibrosis Podcast
"An Introduction to CF and Your Healthcare Team" DVD for Caregivers by The Children's Hospital-Denver
"Expanding the Horizon of Hope" - Video available through the Cystic Fibrosis Foundation
"Looking Ahead - Transitioning from Pediatric to Adult CF Care" DVD for Patients by Digestive Care, Inc.

Dermatology

Kids Skin Health by The American Academy of Dermatology: www.kidsskinhealth.org

An interactive website by the American Academy of Dermatology where kids can learn and play games about skin, hair, and nails. Topics include general information about taking care of your skin, hair, and nails, as well as eczema, skin cancer, pimples, tattoos and piercings, and tanning beds.

Diabetes

Australian Diabetes Council: Kids and Teens: http://www.diabeteskidsandteens.com.au/index.asp
Diabetes Education Resource for Kids: www.childrenwithdiabetes.com
American Diabetes Association: www.diabetes.org/living-with-diabetes/parents-and-kids/
Grandma Sandy: www.grandmasandy.com
Juvenile Diabetes Foundation: www.jdf.org
Juvenile Diabetes Research Foundation: http://kids.jdrf.org/
Kids Health Diabetes Center: http://kidshealth.org/kid/diabetes

Books/Journals

Cooper has Diabetes By Karen Olson. ISBN: 0939838826
Even Little Kids Get Diabetes By Connie White Pirner. ISBN: 0807521582
The Diabetes Adventure Book by NovoLog
My Sister Rose has Diabetes By Monica Driscoll Beatty, Health Press/ISBN:0929173279
Taking Diabetes To School By Kim Gosselin. ISBN: 1891383000
Your Child has Diabetes By Pritchett and Hull Associates. ISBN: 0939838842

Down Syndrome

Books/Journals

Babies With Down Syndrome (The Special-Needs Collection) By Karen Stray-Gunderson. ISBN: 1890627550

Drug Abuse

Books/Journals

Cocktails: Facts for youth about mixing medicine, booze and street drugs, Youth Health Program, 2002

Designed by youth for youth, this book outlines actions and risks of alcohol, smoking and street drugs on their bodies and minds. Also, 105 medications and their interactions with alcohol, caffeine, street drugs and oral/injectable contraceptives have been researched and outlined in a youth friendly format. Available through the C&W Bookstore, which distributes clinical and patient education resources created at BC Children's Hospital and BC Women's Hospital and Health Centre. Purchase Price: $40.00

Epilepsy (see Seizure Disorders)

Genetics

Genetic/Rare Conditions Support Groups and Info: www.kumc.edu/gec/support

Ichthyosis

FIRST Foundation: www.scalyskin.org

Liver

American Liver Foundation: www.liverfoundation.org

Mitochondrial Disease

CureMito!: http://curemito.org - CureMito's mission is to "provide funding for clinical and laboratory research of mitochondrial disease and its related functional disorders and to increase awareness and understanding of mitochondrial disases in both the medical and general communities it serves.
Mito Action: www.mitoaction.org - A nonprofit organization whose mission is to "improve quality of life for all who are affected by mitochondiral disorders through support, education and advocasy intitiatves."
United Mitochondrial Disease Foundation: www.umdf.org - An organiation that promotes "research and education for the diagnosis, treatment, and cure of mitochondrial disorders" and provides additional support to affected individuals and their families or support systems.

Mental Health Disorders

American Psychological Association’s Book Division: www.apa.org/books
American Academy of Child & Adolescent Psychiatry: www.aacap.org
Canadian Institute for Health Information: www.cihi.ca
Suicide Information & Education Centre: www.suicideinfo.ca
Children’s Mental Health Ontario: www.cmho.org

Books/Journals

Helping a Child with Nonverbal Learning Disorder or Asperger's Syndrome: A Parent's Guide By Kathryn Stewart, Ph.D. ISBN: 1572245263
Helping Your Teen Overcome Depression: A Guide for Parents By Dr. Miriam Kaufman, BsCN, MD, FRCP. ISBN: 1552095207
The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction By Carol Stock Kranowitz, MA. ISBN: 0399531653
The Bipolar Child: The Definitive and Reassuring Guide to Childhood's Most Misunderstood Disorder By Demitri Papolos, MD & Janice Papolos. ISBN: 0767928601

Neurological Impairments/Brain Injury

The Brain Injury Association of America: www.biausa.org - The Brain Injury Association is a national organization serving families and professionals who are touched by traumatic brain injury (TBI). Its network includes chartered state affiliates and hundreds of local chapters and support groups across the country. The BIAA provides information, education and support to assist families living with traumatic brain injury.
The National Spinal Cord Injury Association: www.spinalcord.org - The National Spinal Cord Injury Association is dedicated to improving the quality of life for individuals and families living with spinal cord injury and disease. Their goal is to educate and empower survivors to achieve and maintain the highest levels of independence, health and personal fulfillment.
Brain Map: An online resource about brain injuries for children, from Gillette Children's Specialty Healthcare website - www.gillettechildrens.org
Kids Video EEG Guide: www.kidsvideoeeg.com. Website created by a child life specialist to help prepare kids for EEGs. Includes photos and tips for caregivers. Available in English and Spanish.
Facing Disabilites: Spinal Chord Injury Resource, Videos and Research: http://www.facingdisability.com. Facing Disability was specifically created to connect families dealing with spinal cord injuries. The website has more than 1000 videos of family members answering real-life questions about coping with spinal cord injuries. It’s a first-of-its-kind Internet-based effort to collect and share life experiences surrounding spinal cord injuries.
Journey Toward Recovery: A Brain Injury Guide for Families: http://sdbif.org/PDFs/SDBIF_Guide_Eng.pdf (English), https://www.sdbif.org/PDFs/SDBIF_Guide_Spa.pdf (Spanish). This guide has been written for anyone who has been touched by brain injury, whether mild or severe, family or friend. It is the goal of this guide to provide survivors, caregivers and loved ones with step-by-step tools they need to travel the incredible journey of recovery.

Oncology

American Cancer Society: www.cancer.org
Cancer Source Kids: www.cancersourcekids.com
Cancer Support Community: www.cancersupportcommunity.org
Candlelighters Childhood Cancer Foundation: www.candlelighters.org
Captain Chemo and the Chemo Command: www.royalmarsden.org/captchemo (Video Game)
Children’s Cancer Association: www.childrenscancerassociation.org
Kids Helping Kids Cancer Support: www.kidskonnected.org
The Leukemia and Lymphoma Society: www.lls.org
National Bone Marrow Donor Program: http://marrow.org - Patient & family resources.
National Cancer Institute: www.cancer.gov/cancerinfo
The National Children’s Cancer Society: www.children-cancer.org
The National Coalition for Cancer Survivorship: www.cancer.gov/cancertopics
The Neuroblastoma Children’s Cancer Society: www.neuroblastomacancer.org
Pediatric Brain Tumor Foundation: www.pbtfus.org
Thyroid Cancer Survivor’s Association, Inc.: www.thyca.org
Wonders and Worries: www.wondersandworries.org - Tips for parents in talking to children about cancer.

Books/Journals

The following is an abbreviated list of publications, with summaries provided by the Professional Resources Committee. To review a more extensive list of resources, download a complete, printer-friendly list of Oncology Books and Journals suggested by child life specialists. Before recommending any book listed here, the Professional Resources Committee strongly encourages you to preview the publication and determine whether it is appropriate for your specific program and patient population.

The Jester Has Lost His Jingle. By David Saltzman. Published in 1995. ISBN: 0964456303. (Ages 4 - 8)
Colorful illustrations and rhyming words tell a story about how laughter can be healing, and humor can help us deal with difficult situations. The Jester and his friend, Pharley, live in a kingdom that has lost its sense of humor. Jester and Pharley set off on a quest in search of laughter only to find that humor is missing in the places they visit. They visit with a young girl in the hospital who is being treated for a tumor. When entertaining the young girl she begins to laugh. The laughter is contagious and soon brightens the day of all who hear it.
My Name is Buddy, A Story for Children About Brain Tumors. By Dave Bauer and the National Brain Tumor Foundation. Published in 2002. ISBN: B0006RYLR0. (Ages 5 – 10)
The story of Buddy, a golden retriever, who undergoes treatment for a brain tumor. Real photos depict Buddy having a CAT scan, radiation therapy and recovering from surgery. Additional photos show a healthy Buddy interacting with children being treated for brain tumors. Available through the National Brain Tumor Foundation to be viewed online at http://landofpuregold.com/buddybook/.
Chemo Craziness & Comfort. By Nancy Keens & Candlelighters. Published in 2002. ISBN: 0972404309. (Ages 6-12)
Comprehensive information about childhood cancer including sections on healthy body function, types of cancer, the hospital, tests and treatments, side effects, psychosocial concerns and life after cancer. Space is provided at the end of each chapter to record thoughts and questions. Available through the American Childhood Cancer Organization (ACCO).
Me and My Marrow: A Kid's Guide to Bone Marrow Transplants. By Karen Crowe. Published in 1999. ISBN: 0970244606. (Ages 8 - 15)
Short explanations and colorful illustrations give information about bone marrow transplant. The book is divided into three sections: Before Transplant, During Transplant and After Your Transplant. Specific topics include coping, chemo, radiation, protective isolation, communication, finding a donor, possible complications, physical changes, keeping busy, leaving the hospital, food-handling tips, returning to school, and possible future health concerns.
When Your Brother or Sister has Cancer. By L. Rudolph. ASIN: B0006YPVBI. (Teens and Young Adults)
Free from the National Cancer Institute. Information for siblings of cancer patients. Sections include: learning about cancer; treatment; bone marrow transplant; being a bone marrow donor; changes in your family; how to help a sibling with cancer; self-care; finding support; and after treatment (includes information on grief/bereavement). Appendix includes a list of cancer-related tests and definitions, and a list of cancer team members and their roles. Throughout the booklet, siblings of cancer patients share their personal stories and insights.
Cancer in the Family: Helping Children Cope With a Parent’s Illness. By Sue Heiney, Joan Hemann, Katherine Bruss and Joy Fincannon. New Edition to be published January 2013. ISBN: 0944235956. (Adult)
Developmentally-based information on helping children understand and cope with a parent’s illness. Sections include: understanding diagnosis and treatment; using psychosocial support services; self-care; time following treatment; and dealing with recurrence, progressive and terminal illness. Includes a thorough chart of developmental age and children’s understanding and response to illness with suggestions for age appropriate interventions. A removable workbook with a variety of activities for children is provided at the end of the book. Available through the American Cancer Society.
Childhood Cancer: A Parent’s Guide to Solid Tumor Cancers. By Honna Janes-Hodder, Nancy Keene. 2nd Edition published in 2002. ISBN: 0596500149. (Adults)
Comprehensive information about all types of solid tumors and medical treatments. Additional information about coping with procedures, nutrition, school, siblings, feelings, relapse, and death and bereavement. Patient and family personal stories are interspersed throughout the book. Appendix includes an extensive list of resources, bibliographies for specific age groups and a glossary of common terms.
Childhood Leukemia: A Guide for Families, Friends & Caregivers. By Nancy Keene, Linda Lamb. 3rd Edition published in 2010. ISBN: 1449380433. (Adults)
Detailed information about the diagnosis and treatment of leukemia, including: finding an oncologist; side effects of treatment; clinical trials; chemotherapy; venous catheters; radiation therapy; and stem cell transplantation. Includes practical information about pain management, partnering with the medical team, family and friends, hospitalization, sources of support, nutrition, school, siblings, feelings and communication, end of treatment, relapse, and grief and bereavement. Patient and family personal stories are interspersed throughout the book. Also included is a detachable treatment record to keep track of medical history.
Stevie's New Blood. By Kathryn Ulberg and Chad Chronick (Illustrator).
Oncology Nursing Press, 2000. ISBN 1890501473
With charming cartoon characters, colorful illustrations, and a story that describes bone marrow transplantation (BMT) from a child's point of view, Stevie's New Blood tells the story of Stevie, who is undergoing BMT in the hopes it will cure his leukemia. It helps children know what to expect--before, during, and after transplantation--through colorful pictures and simple text. Includes detailed explanations of BMT for older children and adults.

Videos & Other Media

“Why, Charlie Brown, Why” - From the Leukemia & Lymphoma Society
Supersam and the Marrow Monsters - A guide to Bone Marrow Transplant for Children and their Families

Orthopedics

Submitted Resources

The ABCs of Having a Cast Put On and the ABCs of Taking off a Cast : Created by: Andrea Mangione Standish, CCLS, Child Friendly Healthcare, Austin, TX

Renal

American Association of Kidney Patients: www.aakp.org - The American Association of Kidney Patients (AAKP) is a nonprofit organization which strives to educate and improve the health and well-being of chronic kidney disease (CKD) patients, those on hemodialysis, peritoneal dialysis and transplant recipients.
American Kidney Fund: www.kidneyfund.org - The mission of the American Kidney Fund is to fight kidney disease through direct financial support to patients in need; health education; and prevention efforts.
DaVita, Inc.: www.davita.com - DaVita.com is a helpful resource for information on dialysis and chronic kidney disease. Includes informative articles and animated learning modules, recipes for the dialysis diet, and other tools, including a discussion forum, dialysis center locator, insurance consultation, and GFR calculator.
Kidney Kids Inc.: www.kidneykids.org - KIDNEY KIDS, Inc. is a non-profit 501(c)(3) organization devoted to supporting children with kidney diseases and illnesses as well as their families.
National Kidney Foundation: www.kidney.org - The National Kidney Foundation (NKF) is a nonprofit health organization dedicated to preventing kidney and urinary tract diseases, improving the health and well-being of individuals and families affected by kidney disease and increasing the availability of all organs for transplantation. Through its more than 50 local offices nationwide, the NKF provides vital patient and community services, conducts extensive public and professional education, advocates for patients through legislative action and supports kidney research to identify new treatments.

Books/Journals

About Organ and Tissue Donation, Channing Bete, Item # 14449
AAKP Nutrition Counter (Pamphlet), American Association of Kidney Patients
Answering Your Questions about Living Donation, National Kidney Foundation
Coping Effectively, National Kidney Foundation
Nutrition and Peritoneal Dialysis (Pamphlet), National Kidney Foundation
Peritoneal Dialysis- Is it the Right Choice for Me, Baxter Healthcare
When Kidneys Fail- Straight Talk About Your Options (2nd and 3rd Editions), Baxter Healthcare
What Everyone Should Know About Kidneys (Pamphlet), Channing Bete, Item #11593
Understanding Growth in Kidney Disease, Genentech, Inc.
Talking About Transplantation- What Every Patient Needs to Know, United Network for Organ Sharing

Videos & Other Media

"Living with Kidney Disease" - Starlight Children’s Foundation

Submitted Resources

Renal Web Sites Resource Brochure : Created by: Andrea Mangione Standish, CCLS, Chidren's Hospital Orange County (CHOC), CA

Seizure Disorders

Epilepsy Foundation: www.epilepsyfoundation.org
International League Against Epilepsy: www.epilepsy.org

Sickle Cell Disease

Sickle Cell Kids

Syringomyelia

American Syringomyelia and Chiari Alliance Project