SICKLE CELL RAPPER
Fall 2001, The Children's Sickle Center, San Antonio, Texas
From the Editor
Fall has arrived, and with it comes increased pollen counts, changes in the weather, and symptoms resulting from allergies. Your child may be coughing, sneezing and congested. Sickle cell centers can expect to see an increase in clinic visits and hospital admissions. Children who are admitted to the hospital may also have a fever and an infection. Children who have sickle cell anemia may also have asthma. This combination can become life threatening if respiratory distress develops.
If your child has asthma and sickle cell anemia, it is important that you learn the difference between normal, and abnormal respirations.
Normal respirations are spontaneous and are accomplished with minimal effort. Normal breathing is quiet. Abnormal respirations can be classified as too fast (tachepnea), too slow (bradypnea), absent (apnea), or associated with increased effort (work) of breathing, and may be noisy.
If your child has any of these abnormal breathing patterns, your child is in distress. Respiratory distress is very serious and may lead to respiratory failure. If you observe any abnormal breathing, call your sickle cell center, clinic, or doctor's office immediately and report your observations. A rapid response by parents will help to avoid a life threatening situation.
If you need more information about respiratory distress, ask your doctor and/or nurse how to count your child's respirations, and learn what is normal for your child's age.
Yvonne Shannon, R.N., M.S.N.
South Texas Children's Regional Sickle Cell Center
San Antonio, Texas
What's that racket? It may be your child with sickle cell snoring. Snoring is due to sleeping on your back, but may be further accentuated by enlarged tonsils and adenoids which is more common in sickle cell patients although, may occur in anyone. The snoring is what bothers the listener and not the patient however, when accompanied by apnea it may be detrimental to the patient with sickle cell disease. Apnea is the temporary stopping of breathing. The snoring momentarily stops and then breathing is automatically resumed again. During periods of apnea, the concentration of oxygen may briefly be reduced. Now remember, one of the important things that causes the red cells to sickle is the reduction of oxygen concentration; so repeated apnea spells may promote sickling. What to do? If patients have repeated apnea spells then the most permanent solution is to remove the tonsils and adenoids, and away goes the snoring and apnea. Cortisone type drugs may temporarily shrink the tonsils and adenoids, but when discontinued they usually swell up again. Although tonsil and adenoidectomy are safe procedures this should best be done in a hospital that is very familiar with the special care of sickle cell disorders.
Howard A . Britton, M.D.
Children's Regional Sickle Cell Center
Astha is an illness that affects approximately 10% of children in the United States. The cause of asthma is not known. Children who have allergies or who have other family members with asthma or allergies are at increased risk for asthma. Asthma is a disease that affects the breathing tubes (bronchioles) in the lungs. When asthma is not under control, the breathing tubes are swollen and narrowed. When the air tubes are narrow, less air can move in and out of the lungs. The most common symptoms of asthma are cough, wheezing (a high-pitched whistling noise made when air passes through the narrowed breathing tubes), and shortness of breath.
Many things can cause an asthma attack. Causes of asthma attacks are called asthma "triggers." Most children with asthma also have allergies to things in the home or in the air outside the home. The most common allergic "triggers" are dust mite (a tiny insect that lives in house dust), molds, pets, cockroach and pollen. Special testing is the best way to find out about allergies. When a child with allergies is close to something that he is allergic to, the breathing tubes become swollen.
Parents can make changes at home to decrease allergic "triggers." Dust mites like to live in carpet, mattresses, stuffed animals, and pillows. A zippered, dust-proof cover can be put on the mattress and pillow. Sheets and blankets should be washed in hot water to kill the dust mites. If a child is allergic to dust, remove stuffed animals and fluffy comforters from his bed. Remove the carpet from the bedroom to decrease dust and mold. Pets should be kept outside and not allowed to sleep in the same room as the child. Keep the indoor air dry (by using an air conditioner) to decrease dust mite and mold. Do not use vaporizers or humidifiers.
Cockroaches are an important asthma "trigger" for children living in cities. Keep food covered and containers clean. Keep trash covered. Repair water leaks (cockroaches need water). If necessary, use child-safe chemicals or an exterminator to kill roaches.
Cigarette smoke is very harmful to children with asthma. Keep your home smoke-free. Do not allow friends and members to smoke around your child or in the car. Smoke from the grill or fireplace can also cause asthma problems. Sometimes odors or strong smells cause problems with asthma. Keep your child away from paint, strong smells, perfumes, and carpet freshner.
Infections often cause problems with asthma. People with asthma should get a flu shot every year. These shots are usually given in the fall or early winter. Many children with asthma have trouble when they exercise (run or play hard). Asthma medicine before exercise will help prevent symptoms. Children with asthma should be able to run and play, just like other children.
Two kinds of medicines are used to treat asthma. Every child with asthma needs a "rescue" medicine like albuterol. "Rescue" medicine (quick-relief medicine) is given to stop asthma symptoms. Any child who has trouble with asthma more than twice a week during the day or more than twice a month at night needs a "prevention" or "controller" medicine. Prevention medicines must be taken every day to control asthma. There are many different kinds of prevention medicines. Some prevention medicines are cromolyn (Intel), inhaled steroids (e.g. Beclovent, Vanceril, Flovent, Azmacort, and leukotriene modifiers (e.g. Accolate, Zyflo, Singulair). Older children usually take these medicines from an inhaler. Every child who uses a metered-dose inhaler ("puffer") for asthma needs a spacer or holding chamber. The spacer helps medicines get into the lungs. Very young children can use a spacer with a facemask.
Every person with asthma needs a written plan for how to take care of asthma. Your doctor can give you a written plan. Children who are older than five years can use a peak flow meter ("breathing meter") to check their breathing at home. If an asthma attack starts, follow the written plan. Give the "rescue" medicine and check to see if breathing gets better. If breathing does not get better after the medicine, or if you can see any danger signs, get emergency help from a doctor. The asthma danger signs are: trouble walking or talking, breathing is fast and hard, ribs show with breathing (retractions), or fingernails turn blue.
Asthma can be controlled. You can work with the doctor to help your child with asthma lead an active, healthy life.
Christus Santa Rosa Children's Hospital asthma classes Monday-Friday. For information about asthma classes, 704-2465.
For information about asthma, contact: American Lung Association (308-8978).
National Asthma Education and Prevention Program (301/251-1222) PO Box 30105 Bethesda, MD 20824-0105.
Global Initiative for Asthma (Internet: http://www.ginasthma.com)
Pamela Woods, M.D.
Medical Director Asthma Education Program
Christus Santa Rosa Children's Hospital
Notes From a Camper
Dear friends, I am very grateful and impressed with the Camp Sky organization. The professionalism and personal caring by the volunteers was expressed to all on a daily basis. It was hard to believe that the staff weren't receiving payment for such a fun event. Their dedication was proven throughout the week. The activities were fun and gave us a different perspective of Sickle Cell. They also taught different ways to deal with the disease. The activities proved to me that I can do anything and everything in life I put my mind to, but most of all that I can succeed in making new friends. The food was good and fresh daily. We had breakfast, lunch, and dinner on a buffet bar. There was also drinks at every activity. Although, we had a lack of male volunteers, everyone participated and helped out. Camp Sky also has family day, which encourages a family visit to check things out. Last, but not least, I would like to thank counselor Lisa McConnell for supporting the Comets (the name of our group), when a friend went to the hospital in a pain crisis. Thanks to the doctor and nurse on duty, Dr. McClain and nurse Nicki. The director and organizer who managed everything was Adrian LeBlanc. I want to thank her and her whole staff for their caring hearts.
Notes From the Parents
Please extend our heart-felt gratitude to the Camp Sky staff. I am very grateful for and impressed with their professionalism. The volunteers went a step beyond their task, and catered not only to the medical needs, but the emotional needs of the children as well. Adrian LeBlanc had a busy and hard job, I thank her as a leader. She managed and organized the program very well. I encourage parents with children diagnosed with Sickle Cell Anemia to check out Camp Skyand see for yourself. This program is managed very well. There's a doctor and a nurse and the volunteer staff. The infirmary was equipped with oxygen and IV fluids. One factor that made me feel more at ease about this camp was that some of the volunteers also have Sickle Cell Anemia. I wish Christina had attended this camp in her earier years. When we picked my daughter up on the last day of camp, we knew she enjoyed this camp. One of the things that impressed me was when I saw the doctor jump in the pool with the children and offer to teach them how to swim. Adrian, the director, seemed to assist everyone in every capacity she could. She did a good job, but I know she was tired at the end of the week. One child did have a crisis and was transported to the hospital; a few others took a break in the infirmary.
Nourishing and Nurturing
Mayfield, M.S., R.D., is the author of the popular "Kids Club Curriculum." She described the feeding relationship between infant and parent as critical to the infant's development. In addition to proper nutrition, the interaction between parent and child during the feeding process is imperative. Ideally, this interaction will include breastfeeding. Mother Nature's perfect solution to baby's needs. If breastfeeding is not possible, the bonding and attachment that take place during feeding and other interaction is of the utmost importance to infants. Nourishing and nurturing, a perfect combination.
During the early months of life, the infant experiences the outside world through seeing, hearing, smelling, touching, and tasting. The relationships the child has with other people early in life help develop the emotional and social parts of the brain. Although there is still disagreement whether nature or nurture is the overriding influence on the development of the child, it can be said for sure that both are critical.
Brain development in early infancy occurs at a rapid pace. At birth, the parts of the brain that handle thinking and remembering, as well as emotional and social development, are under-developed. Rapid changes take place during the early months of life.
Secure attachments during the newborn period serve as a basis for future relationships. Children thrive when they feel safe and secure. On the other hand, children lacking secure attachments early in life may lack the ability to maintain healthy personal relationships later in childhood and even into adult life. This is why it is so imporant for parents to be warm, loving, and responsive. Breastfeeding facilitates this bonding experience, but formula-fed infants can certainly feel this loving, bonding experience with parents.
How can WIC educators and counselors help parents realize the importance of the relationship? First of all, you can communicate to the parents the importance of understanding their infant's feeding cues and being attentive to their infant's needs. Some tips:
- Crying is how babies communicate. By responding promptly when their baby cries, parents learn their infant's needs for food, diapering, or attention. Fussy periods, especially toward the end of the day, are expected baby behavior and usually go away after 12 weeks of age.
- Parents need to know their infants. By paying attention to their baby, parents will learn how their baby acts when he is hungry, tired, or just in need of being held. Acting promptly to satisfy these needs is important. Dispel the myth that babies will get spoiled if held. Actually, studies show that newborns whose caregivers respond quickly typically cry much less and sleep more at night than babies whose caregivers are slow to respond.
- Strict schedules are not appropriate for newborns. Most babies eventually develop eating routines, but in early infancy they should be fed whenever they show hunger cues.
- Don't force a baby to finish a bottle or continue when he is trying to show that he has had enough. Let the baby decide how much to suck or eat.
- As the baby grows and develops, be sensitive to signs that he is ready for solid foods or ready to progress to finger foods. Don't force solids on a baby before he shows signs of readiness. Although some babies may be ready for solid foods by the age of 4 months, others won't show signs of readiness until around 6 months of age.
Young parents may ask how to tell if their baby is hungry. Some common signals of hunger that a baby shows include:
- Sucking on hands, making small fussing sounds, grimacing, or looking as though he is about to cry, crying and exhibiting the rooting reflex. The rooting reflex occurs when the baby opens his mouth and turns his head toward an object.
You can communicate these imporant messages to your WIC participants through effective nutrition education.
Mary Van Eck, M.S.,R.D.
Nutrition Education Coordinator
Reprinted with permission from Texas WIC News
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