Child Life Council : Diagnosis Specific

CLC LOGIN:

Diagnosis Specific

AIDS/HIV

Adolescent Aids Program: www.adolescentaids.org

Books/Journals

"Caring for the Child and Family with HIV Disease" By Mary G. Boland, MSN, RN, Pediatric Clinics of North America Vol 47, number 1, February 2000
Come Sit By Me By Margaret Merrifield, MD. ISBN: 0773759581
Does AIDS Hurt?: Educating Young Children about AIDS By Marcia Quackenbush, MS, and Sylvia Villarreal, MD. ISBN: 0941816524
You Can Call Me Willy: A Story for Children About AIDS By Joan C. Verniero. ISBN: 0945354606

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
Wilfred Gordon McDonald Partridge By Mem Fox and Julie Vivas. ISBN: 0140505865

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
Super Kids: www.super-kids.org

Books/Journals

Annie Loses Her Leg but Finds Her Way By Sandra J. Philipson and Robert Takatch. ISBN: 192982100X
Little Tree: A Story for Children with Serious Medical Problems By Joyce C. Mills. ISBN: 0945354525

Anorexia

Books/Journals

Breiner, S. An evidence-based eating disorder program. Journal of Pediatric Nursing, 2003 (Feb), 18, 75
Your Dieting Daughter: Is She Dying for Attention? By Carolyn Costin (1994). ISBN: 0876308361
Preventing Eating Disorders Among Pre-Teen Girls: A Step by Step Guide By Beverly Neu Menassa (2004). ISBN: 0865693323

Arthrogryposis

About Arthrogryposis: www.avenuesforamc.com

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.
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

How To Support A Child With Autism In The Hospital (PDF): http://opssa.org.za/pdf/Autism.pdf

Books/Journals

A Parent’s Guide to Autism By Charles A. Hart. ISBN: 0671750992
Andy and his Yellow Frisbee By Mary Thompson. ISBN: 0933149832
Fragile Success: Nine Autistic Children, Childhood to Adulthood By Virginia Walker Sperry. ISBN: 0208024131
Ian’s Walk: A Story About Autism By Laurie Lears, Karen Ritz (Illustrator), Judith Mathews (Editor). ISBN: 0807534803
Let Me Hear Your Voice: A Family’s Triumph over Autism By Catherine Maurice. ISBN: 0449906647
Like Color to the Blind: Soul Searching and Soul Finding. By Donna Williams. ISBN: 0812926404
Nordahl, C.W., Simon, T. J., Zierhut, C., Solomon, M., Rogers, S. J., & Amard, D.G. (2008). Brief report: Methods for acquiring structured MRI data in very young children with autism without the use of sedation. Journal of Autism and Developmental Disorders, 38, 1581-1590.
An article providing information related to a study to help young children with autism complete an MRI without sedation.
Siblings of Children with Autism By Sandra L Harris and Beth A Goldberg. ISBN: 1890627291
Talking to Angels By Esther Watson. ISBN: 0152010777

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 Web site 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/member_camps.html

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

Cystic Fibrosis

Cystic Fibrosis Foundation: www.cff.org

Books/Journals

Growing Older with CF. Solvay Pharmaceuticals. B0006QRCRM
Mallory's 65 Roses by Diane Shader Smith. ISBN:0970035306
The Spirit of Lo by Terry and Don Detrich. ISBN:0-9701934-0-8 (For Caregivers)
Stevie's Secret by Diane Shader Smith. ISBN:0-9700353-1-4
Taking Cystic Fibrosis to School by Cynthia S. Henry. Solvay Pharmaceuticals. ISBN:1891383094
Grab 'N Go. CF Services
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. Cystic Fibrosis Research, Inc.
A Day of Choices. Genentech, Inc.
Going to David's Party/Uncle Jack's Coming to Dinner. Genentech, Inc.
My Best Friend, Jason. Genentech, Inc.
The Tree House. Genentech, Inc.
Big Pats or Little Pats by Susan Tumiel Smith. McNeil Pharmaceuticals
Super Cystic and Fabulous Fran Fibrosis. Organon Canada Ltd
Can We Talk? My Sibling Has CF by Deirdre Ann Croal, Kendra Croal & Andrea Croal. Solvay Pharmaceuticals
Cystic Fibrosis: A Handbook for Teachers and Day Care Providers. Solvay Pharmaceuticals
Understanding Cystic Fibrosis. Solvay Pharmaceuticals

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/wizdom
Diabetes Station: www.diabetesstation.com
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_basics/index.html
Kids Learn About Diabetes: www.kidslearnaboutdiabetes.org
Support Group for Parents of Diabetics: www.podsquad.com

Books/Journals

Cooper has Diabetes By Karen Olson. ISBN: 0939838826
Donnie Makes A Difference By Sandra Haines. ISBN: 1885101066
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
Rufus Comes Home By Kim Gosselin, JayJo Books, LLC/ISBN:1891383027
Sarah and Puffle: A Story for Children about Diabetes By Linnea Mulder, RN. ISBN: 0945354428
Taking Diabetes To School By Kim Gosselin. ISBN: 1891383000
Teddy Ryder Rides Again by American Diabetes Association
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: 0933149646
Becca and Sue Make Two By Sandra Haines. ISBN: 1885101155
Eric’s Gift: A Mother’s Discovery of Unconditional Love in the 47th Chromosome By Kimberly Thompson. ISBN: 0966525035
Count Us in: Growing Up With Down Syndrome By Jason Kingsley, Mitchell Levitz. ISBN: 015622660X
Life As We Know It: A Father, a Family, and an Exceptional Child By Michael Berube. ISBN: 0679442235
Our Brother Has Down’s Syndrome By Shelley Cairo, Jasmine Cairo, Tara Cairo. ISBN: 0920303315
Understanding Down Syndrome: An Introduction for Parents By Cliff Cunningham. Cunningham ISBN: 1571290095
We’ll Paint the Octopus Red By Stephanie Stuve-Bodeen. ISBN: 1890627062
Where’s Chimpy? By Berniece Rabe. ISBN: 0807589276

Drug Abuse

Teen Drug Abuse: www.teendrugabuse.us

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

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.secure.cihi.ca/cihiweb/splash.html
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: 1572242779
Helping Your Teen Overcome Depression: A Guide for Parents By Dr. Miriam Kaufman, BsCN, MD, FRCP. ISBN: 1552632784
The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction By Carol Stock Kranowitz, MA. ISBN: 0399523863
The Bipolar Child: The Definitive and Reassuring Guide to Childhood's Most Misunderstood Disorder By Demitri Papolos, MD & Janice Papolos. ISBN: 0767912853

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 Tool: An online resource about brain injuries for children, from Gillette Children's Specialty Healthcare Web site - www.gillettechildrens.org
Kids Video EEG Guide: www.kidsvideoeeg.com. Web site created by a child life specialist to help prepare kids for EEGs. Includes photos and tips for caregivers. Available in English and Spanish.

Oncology

American Cancer Society: www.cancer.org
School Reentry and Life after Cancer: www.cancervive.org
Cancer Source Kids: www.CancerSource.com
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
Gilda’s Club: www.gildasclub.org
Kids Helping Kids Cancer Support: www.kidskonnected.org
The Leukemia and Lymphoma Society: www.leukemia.org
National Cancer Institute: www.cancer.gov/cancerinfo
The National Children’s Cancer Society: www.children-cancer.org
The National Coalition for Cancer Survivorship: www.canceradvocacy.org
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 Amazing Hannah: Look at Everything I Can Do! By Amy Klett & Candlelighters. Published in 2002. ISBN: 0972404317. (Ages 2 - 5)
Real photos and short explanations about various aspects of treatment, including: taking vital signs; central line care; medical play; EKG; wearing a mask; and handwashing. The child featured in the book is a 3-year-old female. Available through Candlelighters Childhood Cancer Foundation. Also available in Spanish.
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.
You and Your Cancer: A Child's Guide. By Lynda Cranston, Chantal LeBlanc, Maria Restivo, and Ronald Barr. Published in 2001. ISBN: 1550091476. (Ages 4 - 8)
Simple, straightforward information about cancer and cancer treatment, including definitions and pronunciations of common terms. Book is interactive and provides a variety of activity pages. Information includes types of cancer, tests and treatments, feelings school, resources for help, death and bereavement, and after treatment. Colorful drawings and quotes from patients are included throughout the book.
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.
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 Candlelighters Childhood Cancer Foundation.
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. Available online at www.meandmymarrow.com.
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. Published in 2001. ISBN: 0944235344. (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 2002. ISBN: 0596500157. (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.

Videos & Other Media

“My Hair is Falling Out…Am I Still Pretty” – A Childhood Cancer Education Video
“Why, Charlie Brown, Why” - From the Leukemia & Lymphoma Society

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, 14449BN-06-99
Chronically Happy by Lori Hartwell, ISBN13:9780972278300
AAKP Nutrition Counter (Pamphlet), American Association of Kidney Patients
Kidneys for Kids by Christine R. Boylan, American Kidney Fund
Answering Your Questions about Living Donation, National Kidney Foundation
Coping Effectively, National Kidney Foundation
Nutrition and Peritoneal Dialysis (Pamphlet), National Kidney Foundation
Get the Most out of Life, Amgen
Justin's Journey by Justin Hill, Amgen
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
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" CD - Available through Starlight Starbright Children’s Foundation
"Enjoying Life! Living Well on Peritoneal Dialysis" Video (VHS) - Baxter Healthcare
"Choices- Options for Living with Kidney Failure" Video (VHS) - Baxter Healthcare

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

Books/Journals

Lee the Rabbit with Epilepsy By Deborah Moss. ISBN: 0933149328

Sickle Cell Disease

Sickle Cell Kids

Syringomyelia

American Syringomyelia and Chiari Alliance Project