SICKLE CELL RAPPER
Spring 2001, The Children's Sickle Center, San Antonio, Texas
From the Editor
All of the Sickle Cell program staff, families and patients would like to welcome Nkechi Eke, RN, BSN. Nkechi began her new job as Nurse Consultant of the Hemoglobinopathy and Sickle Cell program for the Texas Department of Health on November 20, 2000.
Nkechi is a graduate of UT-Austin School of Nursing. She has worked as a nurse for seventeen years. Nkechi brings to her job a wealth of life experience and nursing practice. She will do her best to help children and their families because she says, "This is not just a job, but it is a special concern for families of children with sickle cell anemia."
We hope that you, Nkechi, will find this job rewarding both personally and professionally.
Yvonne Shannon, R.N., M.S.N.
Sickle Cell Nurse Coordinator & South Texas Sickle Cell Program Staff
State of the Art Therapy Erythrocytopheresis
Approximately 1500 infants were diagnosed with Sickle Cell disease according to the Texas Department of Health between 1984 - 1995. Approximately 10% of all children with Sickle Cell disease suffer a stroke during childhood. This occurs for a number of complicated reasons relating to ongoing damage occurring in blood vessels supplying the brain. Transcranial Doppler ultrasound is now a recommended test that should be done periodically to help identify children at risk for strokes.
Monthly blood transfusions with red blood cells can prevent the first stroke in patients identified at risk, and can prevent the second stroke once one has been diagnosed. Lifelong transfusions for stroke prevention are cumbersome. Not only because of the exposure to blood products and the frequent clinic visits, but because the body rapidly accumulates a large amount of iron. Children who are transfused monthly eventually require what is called chelation therapy. This is an intravenous medication that is given at home almost daily to remove excess iron from the blood.
We have a new procedure available at The South Texas Regional Sickle Cell Center that has been available across the country for some time now. This procedure is called Erythrocytopheresis or Automated Red Cell Exchange. This is a rapid way of performaing a simultaneous transfusion of blood while old blood is removed and discarded.
The procedure itself is not new, but in the past when performed by manual means can take 3-4 hours. The automated procedure can complete a transfusion within 90 minutes. A recent journal article, in the Journal of Clinical Apheresis by Dr. Vichinsky in California, reported their series of patients. As was expected, this new procedure allowed most of their patients to decrease body iron content while on chelation therapy. Patients not on chelation maintained stable iron levels. We are encouraging all patients in our region that are requiring transfusions and chelation therapy to consider this alternative means of transfusions. We are available to discuss the advantages and drawbacks for each individual patient.
Linda G. Shaffer, M.D.
Assistant Professor of Pediatrics
Division of Hematology/Oncology, UTHSCSA
CIDC has become CSHCN
Not only has the CIDC (Chronically Ill and Disabled Children's Services Program) changed its name; but also there are going to be great changes in the program. CSHCN (Children with Special Health Care Needs) services will officially start up on July 1, 2001 but we are already seeing the impact of Senate Bill 374 which passed in 1999 by the Texas Legislature.
CSHCN uses state and federal funds to pay for medical care and related services when the family income is too high to qualify for Medicaid but not suffucient to cover extraordinary medical costs.
Children with sickle cell disease will be covered for any medical problem, not just a sickle cell related illness. Before I describe more changes, I want to ask: "Does your child have CIDC/CSHCN?" If the answer is "NO", then get that child signed up as soon as possible!
Clients will have to apply to CHIP (Children's Health Insurance Program), unless you already have Medicaid, before being eligible for CSHCN. Clients must have both CHIP and Medicaid denials/approvals with their CSHCN application to apply for CSHCN. CSHCN Program will provide clients with access to health care benefit equivalent to those offered through CHIP. The law requires that CSHCN funds be used for payment only after using a client's third party resource, so if there is a problem with a commercial insurance payment, CSHCN may be able to assist.
The new rules remove the diagnosis-specific eligibility. CSHCN will look at functional ability and other criteria such as chronic or long-term condition. The new program will provide many family support services including respite, specialized day care, van lifts, special equipment, special needs, and many other programs. CSHCN will also provide eyeglass and dental benefits, pharmaceutical needs, supplement insurance services, assist with meals, lodging, travel, and even pay for private insurance under certain conditions.
For more information on CSHCN program changes, please contact your sickle cell case manager at your clinic.
Laura Jean Worsham, RN, MSN, MA
Case Manager for Sickle Cell Program
San Antonio, Texas
What is Child Protective Services and What Do They Do?
Child Protective Services (CPS) is just one program administered by the Texas Department of Protective and Regulatory Services. Other programs under the umbrella of this state agency are Adult Protective Services (APS) and Child Care Licensing (CCL). The aim of CPS is to ensure the safety of children and provide services to promote the integrity and stability of the family. CPS helps parents and other family members solve the problems that lead to abuse and neglect.
A toll free 24 hour statewide intake system is administered by PRS for Reporting suspected abuse or neglect at 1-800-252-5400. CPS workers interview children, parents and others who have knowledge of the family determine if child abuse or neglect has occurred and to assess the continued risk to the child. If criminal conduct is involved, law enforcement may investigate at the same time to determine if criminal charges will be filed.
CPS also provides in-home services to reduce the risk of future abuse or neglect. Sometimes, children may continue to live at home while the agency works with families. When it isn't safe for children to live with their own families, PRS provides for their safety. They may be temporarily placed with relatives, a foster family, an emergency shelter or an assessment center. When it is not possible for a child to return home, the court may terminate the parents' rights and legally free the child for adoption.
Keeping children safe is the whole community's responsibility...not just CPS! April is Child Abuse Prevention Month and a great reminder to all of us that each of us has a role in making the world a safer place for children.
Public Service Educator
Child Protective Services
Transition - What Parents Can Do
Health Care providers for young people with chronic illness are being asked to give more attention to the question of "transition" of these young people into adulthood. Children with a chronic illness such as Sickle Cell Disease do live well into adulthood and can expect to live full, productive lives. We are being asked to think about promoting and supporting this "transition."
Health care providers, (nurses, doctors, social workers, psychologists, etc.) and families may ask what we do as a team to promote the transition of a young person into a healthy, productive adult? Several suggestions involve fairly simple, but far reaching changes in the way we involve young people in their health care. Consider the following for transitioning your soon to be adult.
- Discuss with your child why he/she is going to see the doctor or nurse. Each child, even as young as five or six, should know the name of his or her medical condition.
- As children approach adolescence, allow them to answer questions the nurse or doctor asks about how they are doing.
- Before a medical visit, plan ahead with your child, the questions he or she might want to ask the nurse or doctor. The child might write these on a piece of paper to organize their plan.
- Problem solve with your child when they have problems with medications or treatments. What would help them keep on the medical plan?
- Acknowledge (praise) your child when he or she acts responsibly with regard to their medical treatment including asking appropriate questions at the medical appointment.
Start these interventions early to prepare your child for becoming an adult. We want to do the best for our children, and this often involves turning some of the reins over to them.
Judith Grant, Ph.D.
Division of Hematology/Oncology, UTHSCSA
TEXAS STATE SICKLE CELL
Greetings from The Board of Directors and Executive Directors
In a world where there are so many things we do not agree on, we can agree that the chapter associations have historically committed to being a "beacon" of hope for families and individuals impacted with sickle cell disease condition. The year 2001 is no exception.
We are bold in our embracing of people with life challenges, aggressive in our pursuit to offer solutions, staunch in our advocacy for a stronger infrastructure with legislators and other providers addressing disparities in access and care maintenance, and visionary in knowing that consumers come with a multiplicity of needs as a result of sickle cell. We cannot be myopic, nor single thread in direction or mission.
We are busy touching the "whole" family to influence a quality of life for wellness.
Thank you for your support and continued committment to leadership and cooperation.
We are excited about hosting the Hemoglobinopathy Educator Training Program Workshop in San Antonio on May 16-18 at the scenic Marriott River Center (101 Bowie). Remember this is peak vacationing in San Antonio, so book your room ASAP by calling 1 800 648-4462. To get the $99 room rate (2 can share for 1 price or by yourself), agree to checkout on Saturday for the nice leisure extension. See you in San Antonio!
Pearl Jones, President
Texas State SCDAA Chapters
THE SICKLE CELL ASSOCIATION
San Antonio Chapter
Will Host The
Texas State Hemoglobinopathy Certification Educator Training Program, May 16 - 18, 2001. Theme: "Hemoglobinopathies - The Cultural Linkage". Marriott River Center, 101 Bowie, San Antonio, Texas. For information: Call Betty Tanner SCDAA 210 475-0443, or Pearl Jones, State President of SCDAA 1 888 886-9178. Course is approved for CEU's and CME's.
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