Family Matters: Psychosocial Factors on Neuropsychological Outcome
Jamie was a typically developing, healthy, and active teenaged girl who enjoyed life. She did well in school, especially in math and science, and dreamed of becoming a science teacher. Jamie and her family were not initially alarmed when she seemed to come down with the flu after returning from a family vacation in Maine. However, when the usual medicines just did not seem to work and Jamie 's health instead began declining rapidly, her mother decided it was time to see the doctor. A blood test led to other tests, and soon, without warning, Jamie was diagnosed with leukemia, aform of cancer in the blood (Box 12.1). Jamie 's world was immediately turned upside down. She barely had time to even think about her new diagnosis before having to start an aggressive chemotherapy treatment. Her parents were devastated and scared as they tried to sort through the impact of this diagnosis on their daughter 's future. Over the next few weeks, Jamie 's health problems multiplied as she suffered a left-sided stroke that resulted in right-sided hemiparesis (weakness) and aphasia (language problems). Jamie was rushed to the hospital and underwent multiple surgeries to address complications related to the stroke. After her surgeries, Jamie was transferred to an inpatient rehabilitation unit to learn to function independently again. At that point, the right side of Jamie 's body was paralyzed, and she could not speak, control her bladder, or eat independently and thus required a feeding tube.
During inpatient rehabilitation, Jamie received speech and language and occupational therapies. By the time she was discharged, she had made significant progress in her ability to walk, speak single words, and eat independently. Arrangements had been made for her to continue to receive speech and language, occupational, and physical therapies in addition to special education placement through her local public school. Unfortunately, when Jamie was transferred to a different school later that school year, she was discharged from all of her therapies, although she retained her special education placement at her new school.
KeywordsAcute Lymphocytic Leukemia Down Syndrome Executive Functioning Family Matter Neuropsychological Outcome
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Resources for Clinicians
- American Psychiatric Association, & Task Force on DSM-IV. (1994). Diagnostic and statistical manual of mental disorders: DSM-IV (4th ed.). Washington, DC: American Psychiatric Association.Google Scholar
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- National Cancer Institute. Leukemia home page. Retrieved November 27, 2007, from http://www.cancer.gov/cancertopics/types/leukemia (provides information on treatment, clinical trials, research, and statistics related to leukemia)
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Resources for Families
- The Leukemia & Lymphoma Society, http://www.leukemia.org. Provides information on leukemia and its treatment. The “Disease Information” section can be particularly informative for both clinicians and families. Families may also wish to view the “Patient Services” section to learn more about available support. Relevant publications available at the Web site include “Acute lymphocytic leukemia” and “Coping with childhood leukemia and lymphoma.”
- The PACER Center, http://www.pacer.org. In St. Paul, Minnesota, a regional, Midwest center for providing information, advocacy, and training for parents and professionals, about individual 's rights, particularly in relation to education.
- Parent to Parent-USA, http://www.p2pusa.org. A national non-profit organization whose programs provide emotional and informational support to families of children who have special needs, most notably by matching parents seeking support with an experienced, trained “Supporting Parent.”
- NICHCY State Resources List, http://www.nichcy.org. Includes names, addresses, phone numbers, and e-mail addresses for developmental disabilities, special education, vocational rehabilitation, and parent advocacy programs for every state.