SICKLE CELL RAPPER

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    

Sedona...

Sedona, 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 

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

   Normal 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
   

   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.  

   
   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