SICKLE CELL RAPPER
Fall, 2000 The Children's Sickle Center, San Antonio, Texas
Retirement is something we all will eventually face. It is often a time of relief, and an anticipation of relaxing and fun activities after a lifetime of hard work and accomplishments. However, for colleagues and friends it can be a little difficult to let go. This is how many of us feel about Mae Wilborn.
Mae Wiborn, RN, MAH, retired on September 29, 2000, after 17 years with the Texas Department of Health - Newborn Screening Program. We will miss her because of the major role she played in coordinating newborn screening and newborn screening follow-up. She was there and involved when at last sickle cell disease was added to the mandatory screening of all newborns in Texas. This was indeed a historical event that became a reality in November 1983.
Newborn Screening in Texas has been noted as a model program across the nation. Mae took her job seriously, because she knew this potentially life-threatening disease would require basic education. Mae and others at the Texas Department of Health took the time to develop excellent teaching materials for health care providers and families in English and Spanish. The annual hemoglobinopathy education course for health care providers and community lay people, and the annual consultants and case management meetings are some of the activities we will fondly remember about Mae Wilborn. Space and time will not permit all the contributions she made, so we will keep it short, but we won't forget. Mae, we will miss you, have a good retirement, and have a good time on the cruise, you deserve it!
Yvonne Shannon, M.S.N.
Sickle Cell Nurse Coordinator
San ANtonio, Texas
Changes, Changes, Changes...
Progress in program development oftentimes means changes and these are awfully difficult, but time marches on. We are sorry to announce the retirement of Clementina Geiser, a longtime friend to many sickle cell patients and their families. Dr. Geiser has been with our program for 21 years and is more than desrving of a "rest." We will miss her. The good news is that Dr. Linda Shaffer has joined our faculty. Dr. Shaffer will be involved in the management of Sickle Cell patients and will be the Director of the Erythrocytopheresis program to be set up at Children's Hospital. She is a well-trained, certified Pediatric Hematologist/Oncologist who was raised in San Antonio, went to college here at Trinity, Medical School at Johns Hopkins and did her fellowship at University of Texas at Houston and MD Anderson Hospital. She is coming to us from Wilford Hall USAF Hospital. I know you will want to welcome her.
Our program of performing annual evaluations is going well and provides us with the opportunity of seeing your child and discussing problems when the child is not sick. Annuals are very important to the ultimate well-being of your child. Try not to miss them.
On certain visits we will ask you to fill out a psycho-social inventory, the purpose of which is to uncover any non-medical problems that the staff may help you with. It takes less than 2 minutes to complete. Look for it!
That's all for now. Keep tuned.
Howard A. Britton, M.D.
School-Related Issues for Children with Sickle Cell Disease
Children with sickle cell disease often experience more struggles than other children during the school year. At this time of year, it is especially important for parents to serve as an advocate for their children and educate school personnel about sickle cell disease. This will help the teachers, counselors, and school nurses provide the best services to address the special needs of your child. There are three main areas to be addressed with school personnel: academic concerns, limitations on physical activity, and special needs/considerations.
Academic concerns: It is imporant to explain to the school that your child may experience frequent, painful episodes as a result of the child's disease. These painful episodes may require at-home care or hospital management and are a common cause for children missing school. Explain that even when the child is healthy, he/she will have appointments to see the doctor for checkups which will require absences from school. We encourage all children with sickle cell disease to stay in school if at all possible. Homebound schooling should be considered only as a last resort and only if your child is unable to attend school for an extended period of time (for example, more than one month). Talk with the teachers about helping your child to make up any work that he/she misses due to pain crises or appointments with the doctor.
Physical activity: Children with sickle cell disease should be allowed to participate as much as possible in activities in P.E. classes and at recess. However, if they are unable to participate, they should be involved in the activity by being the scorekeeper, referee, timekeeper, etc. so that they don't feel left out. There are also some issues that you should discuss with these teachers. (1) It is important to prevent dehydration by allowing the child to carry water with him/her. (2) These children are sensitive to extreme temperatures, both hot and cold. They should avoid becoming overheated or fatigued, and they may need frequent rest breaks. (3) Excessive exercise, running, and strenuous sports are not recommended for children with sickle cell disease. Encourage teachers to listen to your child about which activities he/she can safely participate in.
Other special needs: Educate school personnel about these special considerations for children with sickle cell disease. (1) Your child may need to take medications such as Tylenol or Motrin during the day to help relieve pain. It is not always necessary to send the child home when he/she is experiencing pain. (2) Your child needs extra fluids throughout the day. Ask teachers to allow the child to carry a water bottle to class or leave class frequently to get water. (3) Your child may need special bathroom privileges because of the extra fluid intake and because sickle cell disease can effect the kidneys. Ask the teacher to allow your child to go to the bathroom whenever necessary, even in the middle of class. (4) Discuss ways to educate your child's classmates about sickle cell. This will help to eliminate questions and teasing about your child's school absences, small stature, special privileges, etc.
Remember, you are your child's best and most important advocate. By keeping your child's teachers and other school personnel informed about sickle cell disease, you are performing an important service for your child and allowing him/her to take full advantage of the educational opportunities available. Check with your clinic for handouts or information that may assist you in working with your child's school.
Leanne Embry, M.A.
Guide to Educating Children About Medicines
Teaching children good health practices included teaching them about medicines. The more they know about medicines, the more prepared they are for independent and responsible use as they get older. Children need medicine information on two levels. First, they want to have their questions answered about how medicines work and, that most often asked question, "How will it taste?" Second, they need to learn some key behaviors related to the use of medicines.
What do children want to know?
Children usually get their medicine information from family, friends, and advertisements (in stores and publications, and on television). When asked, children say they want to learn about medicines from trusted sources such as their physician, teachers, or parents. As a parent, caregiver, or teacher, you can encourage children to ask their health care practitioner about medicines and help children prepare appropriate questions. For example:
- What will my medicine taste like?
- When do I take it?
- How will it make me feel better?
- How long do I have to take it?
- Will it be pills, liquid, or shots?
- Does it have side effects?
- Why do I HAVE to take it?
What should you teach your children to do?
Take the right medicine, at the right time, in the right amount. READ THE DIRECTIONS with the child. Take all of the medicine prescribed even if the child feels better. This is especially important when taking antibiotics. Encourage the child to report any unexpected side effects or reactions to an adult who can call a health care professional. Participate in health education activities that teach the principles of responsible medicine use. Encourage the child to tell an adult if a medicine poisoning is suspected so the local poison center can be notified as soon as possible.
Parents, Caregivers, and Teachers
Most of all, as an adult, set an example of proper and safe medicine use by taking medicines only when necessary, by treating medicines seriously, and by storing medicines out of reach and sight of young children.
Presented by the American Pharmaceutical Association. Developed by the Division of Information Development, United States Pharmacopeia. Primary responsibility resided with the USP Pediatrics Advisory Panel and its Ad Hoc Advisory Panel on Children and Medicines.
White spots could be start of baby-bottle tooth decay
By Sandy Tesch, R.D.H., M.S.H.P. Dental Program Specialist
WIC staffers can pass along to their clients the following answers about saving babies from baby-bottle tooth decay.
What are "white spots" and baby-bottle tooth decay?
Baby-bottle tooth decay is a dental condition that can destroy the teeth of a baby or young child. Any tooth can be affected, but most likely this decay starts as white spots on the upper front teeth, when the spots can be most easily seen. These front teeth are the ones that aid in your child's speech, form the shape of the face, and make such a difference in your child's smile.
What causes baby-bottle tooth decay?
Plaque, the bacteria found in the mouth, is the cause of this dental condition. Plaque should be removed daily. Baby-bottle tooth decay occurs when liquids such as milk, formula, fruit juices, and sweetened drinks mix with plaque and are allowed to collect around a baby's teeth for long periods of time. That's why it is not a good idea to give your child a bottle of these liquids as a pacifier, which the infant sucks on all day, or to put your baby to sleep with a bottle of these liquids in the mouth.
In fact, many health professionals discourage the use of a baby bottle for any liquid other than breast milk, formula, or plain water.
How can I keep my baby safe from baby-bottle tooth decay?
- First, you and your family need to keep your own teeth and mouths clean. Have sealants and fillings done as needed to avoid spreading bacteria from your own mouth to the baby.
- Keep the baby's mouth clean by wiping the teeth and gums with a soft cloth and a tiny bit of fluoride toothpaste after feeding and before sleep time.
- Never allow your baby to fall asleep with a bottle containing milk, formula, fruit juices, or sweetened liquids.
- If baby must take a bottle to bed, fill it with cool water only.
- The bottle could be replaced by a clean pacifier or a comforting, soft blanket.
If my baby loves the bottle, how can I take it away?
- Use a plain-looking bottle for feeding, one that doesn't catch baby's eye.
- Trade a bright, pretty cup for the bottle as soon as baby can sit up. Babies should be off the bottle by their first birthday.
How can I work with my dentist to protect my baby from baby-bottle tooth decay?
- First, as a parent, you need to check your baby's mouth once a month by gently lifting the upper lip. Look at the teeth to be sure that white spots are not forming. If you see white spots, call your baby's dentist right away because they could be the beginning of baby-bottle tooth decay. The earlier these white spots are seen, the easier it is to reverse and treat the decay.
- Take your baby to the dentist at 1 year of age and every six months after that.
- If you need help finding a dentist for your baby, call the Hot Line at (800) 252-8023.
- If your baby receives Medicaid benefits, call (800) 252-8263 about information on dental checkups and treatment. If you have dental insurance for your baby, check with your insurance company.
Texas WIC News December 1996 - Reprinted with permission
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