SICKLE CELL RAPPER

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Spring, 2000 The Children's Sickle Center, San Antonio, Texas   

 Sickle Cell and Psycho-Social Support

Sickle cell is a chronic condition that affects the child and his/her family. Sickle cell disease may adversely affect the physical and psychosocial well being of the child. These adverse effects are intensified by the lack of adequate information, counseling, and social supports. Anticipatory guidance and support of the psychosocial issues that face the child and their family is of great importance. Compared to their healthy peers, children with sickle cell disease experience physical and emotional stressors. The impact of the illness is superimposed on the child/family's changing milestones of growth and development.

A child's primary occupation is school, some of the issues commonly faced are absenteeism and self esteem. Frequent absences may lead to social isolation and academic failure, making it more difficult for the child to keep up with peers and stay in the mainstream. Sickle cell programs can alleviate this problem by assisting the family with these issues. Education regarding the disease, counseling, testing and appropriate referrals may be needed to help improve the quality of life for the family/child with sickle cell disease.

- Yvonne Shannon R.N., M.S.N.
Nurse Coordinator
Children's Regional Sickle Cell Center    

Doctor's Corner  

Sedona...

caduceusSedona, Arizona is a beautiful place, north of Phoenix. The desert in all its glory. So, what has that got to do with Sickle Cell? Lots.

Three years ago the first meeting of sickle cell care givers from Colorado, New Mexico, Arizona and Texas, took place with the help of the Texas Department of Health. The purpose and final result was the development of Guidelines for the Care of Children with Sickle Cell Disease. The last Sedona meeting in November 1999 completed the 3rd revision of the Guidelines which represents the consensus of 30 caregivers who have gathered their knowledge and experience to share with others. The 3rd revision is available to all doctors, clinics, nurses, etc. at no cost. Copies are also available to parents at no cost. Some parents find these useful to share with emergency room personnel who may not see many children with sickle cell disease. If you want a copy, call Yvonne Shannon R.N. at (210) 704-3110.

-Howard A. Britton, M.D.
Medical Director
Children's Regional Sickle Cell Program 

Psychology 

Hints for Positive Parenting

  1. Take time to notice what your child is doing and what they are interested in. We know we are valued when people are really interested in us and show it.
  2. Praise a child for him/herself and for what they do.
  3. Show children how to solve problems, how to respond in difficult situations. Saying "don't do that, stop that, I hate it when you do that." doesn't teach many important lessons or skills children need.
  4. Respond specifically. Children need specific feedback. It gives them guidance and let's them know they are valuable and you are interested in them.
  5. "Rose colored glasses" that praise everything isn't positive parenting; its confusing and even misleading.
  6. Let your child overhear you telling someone how proud you are of them or how much you love them. Even kids know when you praise in order to get something from them. An overheard complement can touch the heart.

    Judith Grant, Ph.D.
    Psychologist 

    Training moms on infant cues
    make better maternal-child relationships

    By Jeanne Mitchell, M.S.N., R.N., I.B.C.L.C.
    Breastfeeding Promotion Nurse

    babyNormal growth and development is achieved faster and easier when parent and child interact well. When parent-child interactions are not good, the child may be at risk for developmental delays in speaking, social abilities, and cognitive functions. Poor parent-child relationships may also lead to child abuse, neglect, or failure to thrive.

    Experts tell us that, in order for an interaction between parent and child to be effective, the parent and infant must give clear signals to each other, and each must also learn to respond to each other's cues.

    Researchers wondered if teaching an expectant mother to recognize infant cues before giving birth would make a noticeable difference in that mother's interactions with her infant in the first 24 hours after birth. So, a 45-minute training on infant cues was given to first-time mothers two weeks before their baby's due date.

    It was found that these mothers were better able to recognize and respond appropriately to their infants' cues than those mothers who had received only routine training on infant bathing and cord care.

    Traditional prenatal education has focused on labor and delivery, or on standard care such as changing a baby's diaper or using a car seat. If we were to introduce topics that would teach mothers how to read their baby's behavior and how interact with their newborns, we may assist mothers in developing good relationships with their children.

    Source
    D.B. Leitch, "Mother-infant Interaction: Achieving Synchrony," Nursing Research, Vol. 48, pages 55-58, 1999.

    From WIC Newsletter, printed with permission  

    Pharmacist
    jar of pills

    Medications & Your Child

    Children with Sickle Cell Disease often take many medications during a day. Children need to be encouraged to understand what purpose the medications play and to take an interest in their own treatment. Parents of these children are challenged to make sure that all of the needed doses are taken during the day while at the same time fostering a sense of independence in the child. In addition to supervising the doses that are given, parents can make sure that the medication is used properly. For instance, liquid medications should be measured with a calibrated syringe or dropper. Also, some medications such as hydroxyurea should not come in contact with a caregiver.

    Precautions to take when giving hydroxyurea are mentioned in the PDR:

    Information for Patients - Patients who take the drug by emptying the contents of the capsule into water should be reminded that this is a potent medication that must be handled with care. Patients must be cautioned not to allow the powder to come in contact with the skin or mucous membranes, and must be told not to inhale the powder when opening the capsules. If the powder is spilled, it should be immediately wiped up with a damp towel and disposed of, as should the empty capsules. The medication, particularly open capsules, should be kept away from children and pets.

    If you have questions about Hydroxyurea or other medications that your child is taking be sure to ask your pharmacist.

    P. Morris, M.S., R.Ph.  


    united way logo CHRISTUS SANTA ROSA
    Children's Hospital

    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
    Pediatric Hematologist/Oncologist
    Anthony Infante, MD, PhD
    Pediatric Hematologist/Oncologist Immunologist
    Paul J. Thomas, MD, FAAP
    Director, Pediatric Oncology Clinical Services
    Shafqat Shah, MD
    Pediatric Hematologist/Oncologist
    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

    yvonne_shannon@srhc.iwhs.org
    (210) 704-3110

    Rosario Ocampo
    Administrative Assistant

Last updated December 07, 2010