SICKLE CELL RAPPER
Fall, 1998 The Children's Sickle Center, San Antonio, Texas Vol. 6 No. 2
South Texas Regional Children's Sickle Cell Program
The staff of the regional center would like to take this opportunity to introduce our program to our readers who may not know the services and scope of the program.
We serve the patient, the family and the community. Our aim is to provide and manage family oriented, integrated, quality care for infants and children identified with sickle cell anemia.
Listed below are the specific aims and goals of the program:
SPECIFIC AIMS OF THE PROGRAM
To implement the following services: newborn follow-up, home visits, parent education, scheduled clinic visits, education of medical professionals, education of school personnel, education of nursing students, community education and referral for developmental/psychosocial assessments and other needed services
To integrate primary preventive care and special hematological care according to medical management protocols for sickle cell anemia.
To maintain computer based database for tracking patients.
GOALS OF THE PROGRAM
- To increase the life expectancy and quality of life for infants and children in South Texas with sickle cell disease.
- To improve access and integration of medical services for infants and children in South Texas with sickle cell disease.
- To provide medical information regarding medical treatment of infants and children to medical students, resident, fellows, nurses and other professionals in South Texas.
- To promote utilization of existing systems to enhance comprehensive services for families and patients of sickle cell anemia in South Texas.
|SOUTH TEXAS COMPREHENSIVE
SICKLE CELL PROGRAM
|Community Agencies Network
||Other Medical Professionals Network
||Selected Services Provided to Network
|Sickle Cell Association
||Primary Care Providers and Clinics
|Head Start Day Care Centers
||Parent Support Group
||Adolescent Support Group
||Area Emergency Rooms
||Local Health Department
||Medical and Nursing Continuing Education
||Patient Care including:
||School of Nursing
||Adult Patient Coordination
Social Security Corner
There are two ways to qualify a child with Sickle Cell Disease for Social Security Disability. The first way is to meet or equal the Social Security listings for the disease. The listings reflect the most severe levels of the disease. You must show that the child has chronic and severe anemia. If the anemia is chronic but not severe, then you must show that the disease has caused other problems such as strokes or heart failure.
Even if the Sickle Cell Disease is not as severe as described above, disability can still be established based upon the developmental problems that it might have caused in the child. Social Security considers the effects upon motor development (the ability to walk and use hands), social development (the ability to get along with others), person care (age appropriate ability to dress and care for self), concentration, pace and persistence. If there is an extreme problem with any one of these areas, the child is disabled. If there is marked problems with any two of these areas, disability is also established for the child.
To evaluate the severity of the disease, Social Security considers evidence from physicians, psychologists, school teachers, social workers as well as parents. Social Security will ask the parents to help gather the evidence it needs to evaluate the condition, or if someone is representing the child, it is her responsibility to gather and present this evidence.
Dale Cowan, M.S.W.
Executive Director of Disability Analysis
South Texas Children's Sickle Cell Center
Before Our Children Are Out of Diapers, Let's Make Sure They're Out of Danger
Our children are precious and wonderful. They're also in danger. Unfortunately, some parents think diseases like measles, mumps and whooping cough aren't dangerous. Or they think our children don't need immunizations until they start school. As a sad result, children in Texas die or are permanently disabled every year from diseases that are completely preventable.
But you can help protect our children. Just make sure your child is properly immunized - all it takes is four office visits by the age of two.
OUR CHILDREN ARE IN TROUBLE
You may be shocked to know that fewer than half of our children in Texas receive the shots they need by age two. African American children are in the greatest need for getting their shots. With so many children unprotected, there could actually be an epidemic.
Keep immunizations up to date...
One of the easiest and most effective steps we parents can take to protect our children against serious disease is to make sure that our children receive all the recommended childhood immunizations. Vaccines work best when they are given at the recommended time and on a regular schedule.
Shots Accross Texas Boots Visit the Immunization Division Homepage or call 1-800-252-9152.
IMMUNIZATION SCHEDULE recommended by the Texas Department of Health.
Your doctor may recommend a different schedule.
||Every 10 Years
DTP/Hib=diphtheria, tetanus, pertussis, and Haemophilus influenza type b
DtaP=diptheria, tetanus and acellular pertussis
Td=tetanus and diphtheria
MMR=measules, mumps, and rubella
FLU SEASON IS HERE...
Flu shots are now available for children with chronic disease who are at high risk for influenza at your local health department, physician's office or the Sickle Cell Clinic.
Pneumococcal booster recommended... Infectious disease experts are now recommending a booster dose of pneumococcal vaccine three years after the first dose. The booster is available at your physician's office or Sickle Cell Clinic.
Yvonne Shannon, R.N., M.S.N.
Program Nurse Coordinator
South Texas Children's Sickle Cell Center
Camp for Kids with Sickle Cell Disease
Every child should have the opportunity to attend summer camp. Children with special health needs should not be excluded from attending a summer camp. Children in Texas who have sickle cell disease are very fortunate because there are two camps for children with sickle cell disease. These camps are about one week in length, offer a variety of activities and are limited to children with sickle cell disease. The camps have talent shows, fishing, swimming, a challenge course, horseback riding, arts and crafts, field sports, boating, canoeing and many other activities. Most important of all, the children meet other children who have the same problems they have. Many times the child with sickle cell disease may not know anyone else with the disease, and they are made to feel different from other children. At sickle cell camp, all the children have sickle disease. Many of them meet and make lifetime friends.
The oldest camp for children with sickle cell disease is sponsored by the Sickle Cell Association of the Gulf Coast in Houston. This camp has been in existence since the summer of 1982. It is open to all children in Texas between 7 and 15 years of age with sickle cell disease. this sickle cell camp is named Camp SKY. It is located at Camp for All, a camp for children with special health care needs. It is a few miles outside of Burton, Texas. Although the cost is about $300 per child, the association has fund raising activities and seeks sponsors to defray the cost so that children can attend camp free of charge. Camp is usually the second week of August. However, since school is starting earlier, the association is considering trying to move the week of camp up by one week. This year there were approximately 60 children who attended Camp SKY.
Camp Jubilee, another camp for children with sickle cell disease, began in the summer of 1991. It is held at Camp John Marc, which is a camp dedicated to kids with special health care needs and is located outside of Meridian, Texas. This camp is held the first week of July. It is limited to children who are 6 to 14 years of age. They must also have sickle cell disease and attend the sickle cell clinics at Children's Medical Center in Dallas or Cook Children's Medical Center in Fort Worth. The camp is sponsored by the staff at the sickle cell clinic at Children's Medical Center in Dallas and UT Southwestern Medical Center. Because of the large number of campers served by these two centers, Camp Jubilee can just accommodate North Texas children who are actively involved in these two centers. The primary source of funding for the camp is the Junior League of Dallas, but support is also obtained from the community and numerous volunteers. All the children attend the camp free of charge. This year approximately 115 children attended sickle cell camp at Camp Jubilee.
The sickle cell camps are well organized and staffed. Both camps have an infirmary that is staffed with volunteer physicians, dedicated sickle cell nurse practitioners and nurses 24 hours a day for the week of camp. The camps also have numerous other volunteers including social workers, camp counselors, community volunteers, police and fire department members and various sorority and fraternity organizations. Anyone wishing to know more about the sickle camps should contact the Texas Department of Health Newborn Screening Program at (512) 458-7111, ext. 2071, and they will be put in contact with the correct person.
Mae Wilborn, BSN, MAHS
Texas Department of Health
Newborn Screening Program
Camp SKY '98 was a great success with 49 campers enjoying 6 days of peer-support and confidence building at a new camp especially designed for children with disabilities (near Brenham) called Camp for All. Twenty- seven boys and 22 girls attended camp, including 10 from outside Harris County.
Campers' evaluations were overwhelmingly positive, with 98% of the campers reporting an increase in sickle cell disease knowledge. Some additional activities requested: mountain bikes, exercise class, roller skating, pool table, Nintendo, hockey, football, pottery and a playground.
High and low elements ropes were provided at no extra cost. Some of the extras that the campers enjoyed were: magician (payed for by "'Dr. Gerson), wizard science experiments, soccer, tennis and cooking. Next year we hope to include mountain bikes, tent camping, dance class, field water games, astronomy and a nature study.
The Camp for All (CFA) staff of 18 received many compliments from the campers and others. Lifeguards went over pool rules every day. Safety standards at canoeing and paddleboats were also good. The children's indoor activities included arts and crafts, cooking, talent show practice and education.
Children's case manager Adrian Leblanc led education sessions informing campers about sickle cell disease. In age-appropriate sessions, Ms. Leblanc reinforced the need to keep up with school work, submit excused absences and request hospital day school whenever a child's stay in the hospital exceeds 3 days. Information packets are available again this year for school nurses, teachers and administrators.
Camp SKY welcomed 49 guests on Family Day, Thursday, Aug. 13, including 4 professionals from Austin. SCA provided transportation to and from camp for 11 family members. Thirty-eight more family members came to Brenham on their own. Board members Borris Miles and Isaiah Sanders provided a return van trip to Houston that evening, which left during the exciting talent show. After the talent show, the mini-olympic awards and camp awards were distributed. Camp SKY '98 returned to Houston on Friday afternoon around 3:30 p.m.
Camp thank you will be mailed by mid-September to all the generous sponsors who donated cash gifts or merchandise; donors will receive special thank you with pictures and/or t-shirts from camp. See ya' next year!
Molly Donahue, Case Manager
Gulf Coast Sickle Cell Association
In Memoriam Kermit B. Nash, Jr. PhD.
Kermit B. Nash, Jr., Ph.D., an internationally acclaimed authority on the psychosocial aspects of sickle cell disease, passed away January 21, 1998. Dr. Nash was a member of the SCDAA Board of Directors and served as Corporate Secretary and Chairman of the Annual Convention for several years. His final contribution to SCDAA was the conception and development of a program to seek out and honor adult patients who have triumphed over the limitations imposed by sickle cell disease.
Dr. Nash was a professor at the University of North Carolina at Chapel Hill, School of Social Work. When UNC students and faculty celebrated his life at a memorial service, they described the impact Dr. Nash had on their lives and his profession.
CHRISTUS SANTA ROSA
The Children's Sickle Cell Center
519 West Houston Street
San Antonio, Texas 78307-3198
(210) 704-2187 (800) 227-3618
(After hours, call 704-2011 and ask for Hematologist on call.)
Anne-Marie Langevin, MD
Chief, Division of Pediatric Hematology/Oncology-UTHSC-SA
Howard A Britton, MD, FAAP
Medical Director, Pediatric Hematologist/Oncologist
Reginald Moore, MD
Associate Medical Director, Pediatric Hematologist/Oncologist
Javier R. Kane, MD
Anthony Infante, MD, PhD
Pediatric Hematologist/Oncologist Immunologist
Paul J. Thomas, MD, FAAP
Director, Pediatric Oncology Clinical Services
Shafqat Shah, MD
Leanne Embry, PhD
Psychology Fellow/Assistant Professor
Elisa Ornelas, LSW
Sickle Cell Social Worker
Yvonne Shannon, RN, MSN
Sickle Cell Disease Nurse Coordinator
Editor of the Sickle Cell Rapper