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  1. 1. Spring 2006 Taming Tantrums........2 Help for Eating Problems.........4 Baby Walker Warning........6 Volume 12, Number 1 Meet Keith and Steven of Newville, Pa. K eith and Steven Martin, ages 5 and 3, are two contented, joyful little boys. It’s a sunny Tuesday morning when their father, Loran, brings them to Penn State Children’s Hospital for their regular checkups at the Stem Cell Outpatient Clinic on the seventh floor. To watch them play in the children’s playroom, just across a toy-filled lobby, you’d never know that both of them suffered from the same life-threatening genetic disease. Not so long ago, they had a delicate procedure performed to save their lives. The brothers from Newville, Pa., were born with Wiskott- Aldrich syndrome (WAS), an immuno- deficiency disorder. Normally, the immune system uses white blood cells and antibodies to attack potentially harmful substances. Immunodeficiency means that the Steven and Keith Martin play in the Children’s Hospital playroom. immune system fails to protect the body. The disorder causes increased infection, Concerned, the Martins took him to What is stem cell transplantation? more severe reactions, and delayed recov- their family physician. They were told to In addition to immunodeficiency disor- ery from sickness. Those suffering from take Keith to the local emergency depart- ders, stem cell transplants are used to treat immunodeficiency are also more prone ment if he didn’t improve. The bruise patients with cancer, leukemia, aplastic to developing cancer. faded, but other sicknesses such as con- anemia, and disorders of hemoglobin pro- tinual ear infections, asthma, skin rashes, duction. “The sources of stem cells for Diagnosis pneumonia, and bloody diarrhea plagued transplant include bone marrow, umbili- The road from diagnosis to recovery Keith. At 8 months, while Keith was in cal cord blood, or stem cells collected from has been a rough one for Loran and his the hospital to have tubes placed in his the blood,” explains Kenneth G. Lucas, wife, Selesti. When the Martins’ second ears, blood work revealed the source of M.D., director of the transplant child and oldest son Keith was 4 weeks this young baby’s ailments: WAS. Keith’s program, Penn State Children’s old, Selesti noticed a large bruise on his doctors immediately referred the Martins Hospital. Here, stem cells are produced body as she was changing him. to Penn State Children’s Hospital. His and mature to become red blood doctors prescribed a stem cell transplant. cells, white blood cells, and platelets. continued on page 2
  2. 2. Keith and Steven, continued from page 1 As they grow, they are released into the through the same line, eliminating the A different child blood to perform their specific functions. need for multiple intravenous sticks. In November 2000, 1-year-old Keith In the process of stem cell transplanta- For patients with immune deficiency received an allogeneic stem cell transplant, tion, the patient receives high doses of like Keith, transplant provides healthy with his 21/2-year-old sister, Grace, serving chemotherapy and/or radiation to destroy cells capable of fighting infection. Those as donor. After the transplant, Keith unhealthy bone marrow cells. Stem cells with leukemia receive cells free of disease. remained in the hospital for a few weeks that have been collected from a donor’s In cancer patients, stem cell transplants to allow the cells to engraft. At first, the bone marrow are then given back to allow patients to receive higher levels of Martins didn’t notice much difference. restore the body’s production. The cells chemotherapy or radiation therapy than But suddenly in January 2001, the Martins are transplanted through a broviac line, would otherwise be possible. Transplant noticed a dramatic, positive change. “He inserted surgically in a central vein before is used most often in cancer patients was just a different child,” says Selesti. transplant. The central line allows all when conventional treatments have fluids and medications to be administered been unsuccessful in destroying all of Déjà vu the cancer cells, or when patients experi- One year later, the Martin family ence a return of their cancer, known as a welcomed their third child, Steven. relapse. The higher doses of chemother- Physicians performed tests immediately to apy kill all of their bone marrow cells, see whether he also had the gene for WAS. but a transplant replaces the cells with The tests were positive. “This time, we sort healthy ones. of knew what was coming,” says Selesti. Two different sources for stem cell trans- “It was easier and it wasn’t—because we plants exist. Allogeneic transplant stem knew what was coming.” Even though the cells are collected from either a matched same ailments that plagued Keith haunted related donor, a matched unrelated donor, Steven as well, as a whole, he was a or from cord blood. Autologous transplant healthier child than Keith. stem cells are collected from the patient Steven received his stem cell transplant prior to transplant. This type of transplant when he was 2 years old. The stem cells Trishia Layden, R.N., takes Steven’s blood is used most commonly with patients who were harvested from the Martins’ fourth pressure. “They’re our most well-behaved have relapsed solid tumors including neu- child—a newborn sister whose umbilical patients,” she says. roblastoma, brain tumors, and lymphomas. cord provided the cells. Selesti says the Techniques for Taming Tantrums Take steps to avoid them, but if that fails, know what calms your child Y our little one is having a kick- less likely to notice shifts in their child’s ing, screaming mega-meltdown mood. This means they may miss the in the frozen-food aisle. And chance to defuse matters before a full- you’re sure everyone in the blown tantrum breaks out. market is thinking, “Why is that child carrying on, and how come the parent Preventing a tantrum is much isn’t doing something to stop it?” easier than stopping one. So before The period from 14 to 30 months you step out with your child: is a peak time for tantrums, says Lynn ■ Try to plan your outing for a time Wegner, M.D., F.A.A.P., a developmental when crowds are few. That helps you and behavioral pediatrician and adjunct avoid long lines and reduces embar- professor at the University of North rassment if it all falls apart anyway. Carolina in Chapel Hill. Toddlers ■ Ensure you and your child are well-fed, Even with preparation and plan- that age are learning to verbalize comfortably dressed and rested before ning, tantrums are bound to their feelings. you leave. happen at times. When they do: Young children whose “wants” are ■ Offer some run-around time before you ■ Make sure the environment is safe if being blocked are apt to lose control, confine your child to a shopping cart your child is kicking, flailing, or throw- especially when hungry, tired or over- or stroller. ing things. Remove the child if sharp stimulated. Parents in a chaotic public ■ Bring toys, snacks or books to entertain corners, breakables or other objects setting, focusing on the task at hand, are and distract if need be. pose injury risks. 2 Penn State Children’s Hospital,
  3. 3. [ health bits ] Kids’ Shots Are Often Late Nearly two out of five U.S. children are “under- vaccinated” for more than six months during their first two years of life, a study found. “It’s really important that kids get vaccinated on time, especially during the Steven with his brother Keith first two years, because that’s when they are at highest risk for many of the vaccine-preventable diseases,” improvement was more gradual in Steven. Today, both he and his big brother are says study author Elizabeth Luman, Ph.D., a National doing fine. Steven returns to Penn State Immunization Program disease expert. Children need Children’s Hospital every three months about 15 to 20 shots to head off measles, mumps, for checkups, while Keith visits every six chickenpox, and the like before their second birthday. months. By the smiles on their faces, they While 73 percent of children get all the shots they need, just 9 percent get them don’t seem to mind. ❖ all on time, researchers wrote in the Journal of the American Medical Association. To check the vaccination schedule, ask your doctor or visit To Learn More For more information about Spacers on Inhalers Curb Asthma Attacks Stem Cell Transplantation at Fighting a child’s asthma attack could be as simple as sliding a plastic tube onto the end Penn State Children’s Hospital, visit of an inhaler, University of Florida researchers say. Yet a lot of doctors don’t give parents this option, they add. The plastic tube is a holding chamber, or spacer. Using a metered- dose albuterol inhaler with a spacer and increasing the number of puffs to treat breath- ing trouble works as well as a nebulizer, studies show. It also causes fewer side effects. “Most doctors and patients misbelieve that a nebulizer is more effective than an inhaler,” says Florida professor Leslie Hendeles, Pharm.D., lead author of a report in the American Journal of Health-System Pharmacy. A nebulizer turns albuterol into a fine mist that patients breathe in through tubes. An inhaler uses albuterol at a lower dose. The spacer makes the inhaler more effective. Air Bags Can Harm Kids 14 and Under ■ Remove your child if you want to avoid Children 14 and younger shouldn’t sit in the front seat of cars with air bags, says a study disturbing others or ease your own in Pediatrics. Federal rules say carmakers must warn of a risk for air bag injuries for chil- stress. It may be easier to calm the child dren 12 and younger. But researchers looked at an eight-year sample of 3,790 children in a quiet place. ages 1 month to 18 years who were seated in the right front seat during crashes. The ■ Don’t worry about other people’s study found kids 14 and younger were at high risk for serious injury from air bags. Air reactions. Focus on your child, Wegner bags tended to protect children ages 15 and up. “When my 13-year-old nephew wants says. Pick actions based on your child’s to sit in the front seat now, I won’t let him,” says study lead author Craig Newgard, M.D., unique needs and temperament. Some an emergency medicine researcher at Oregon Health & Science University. youngsters respond to being held or to a parent’s calm, repetitive words. Inactive Girls Gain Weight Others do best Inactive teen girls gained an average of 10 to 15 pounds more than active girls with watchful during a 10-year study, The Lancet reports. At ages 9 and 10, there were slight waiting. differences in body mass index—about 4 to 5 pounds—between active and ■ Stay centered, inactive girls. But the gap grew by the time the 2,379 girls in the study turned take deep breaths 19. The girls’ calorie intake rose just a bit and did not seem to be tied to the and remember: weight gains. “Just preventing the decline in physical activity that currently This too shall occurs among adolescent girls may be enough to prevent obesity,” says research pass. Hopefully, nutritionist Eva Obarzanek, Ph.D., of the National Heart, Lung, and Blood Institute. soon! ❖ Penn State Children’s Hospital, 3
  4. 4. Feeding Program Helping children with feeding and nutrition D oes your child throw traumatized by food, associating it with tantrums at the dinner table? pain, and her mouth muscles weren’t Eat chocolate pudding and strong enough to form words. only chocolate pudding? Children are enrolled in the Feeding Maybe your child is physically inca- Program for a variety of reasons. Some pable of chewing and swallowing. If regularly refuse food or exhibit signifi- any of these scenarios sound familiar, cant behavioral problems, such as the Feeding Program at Penn State throwing food or hitting, during meals. Children’s Hospital may be the answer. Others eat extremely limited varieties of Keith Williams, foods or textures that are not develop- Ph.D., director mentally appropriate, such as baby food of the Feeding when they should be eating solids. Program at Penn Some children, like Tinalee, have more State Children’s obvious feeding problems, such as vom- Hospital, and his iting after or during meals, or relying staff are committed to on a feeding tube for nourishment. helping children with But how do parents know if their last-ditch effort. Williams asked Cahill a range of feeding and child has a serious feeding problem that to send Tinalee’s medical records and a Keith Williams, nutritional problems. needs professional intervention or if it’s video of her trying to feed her daughter. Ph.D. The program at something they can handle themselves? He called the Cahills within two weeks Children’s Hospital is Williams says that when children are and said that Children’s Hospital would one of only about a dozen comprehen- failing to thrive, welcome Tinalee into the program. sive programs in the country, having it can affect In June 2004, Ann and Tinalee flew cared for children from 21 states and height, weight, stateside while John stayed home with four countries outside the United States. and brain devel- their two other children. After a week of One of those countries is Ireland, opment, and it’s intensive therapy, Tinalee was taking which doesn’t have a feeding program definitely time to her first bites of solid foods, requiring like the one at Penn State Children’s get help. Parents only water through her feeding tube. Hospital. Ann and John Cahill of Ashler Tinalee with mother shouldn’t blame In one month, Tinalee was completely Tulla, Ireland, had given up hope after Ann Cahill themselves, he off the tube. “It was a huge, unreal taking their tube-dependent daughter adds. Most feed- change,” says Ann. Tinalee to doctors and feeding programs ing problems are a result of illness or Tinalee was enrolled in the intensive in Ireland. At the age of 6, Tinalee had other problems. treatment program, an all-day alternative never eaten solid foods or spoken a Children can be referred by their doc- to inpatient therapy used for children single word. She was also still in dia- tors, therapists, parents, nurses, and who are dependent on supplemental pers. Yet even after surgeries to correct teachers. Ann Cahill found the Feeding feedings or at severe nutritional risk. her physical problems, Tinalee still Program at Children’s Hospital online Intensive treatment entails between five couldn’t eat or speak. She had become and decided to call Williams in a and 10 feeding sessions per day. 4 Penn State Children’s Hospital,
  5. 5. Partnership Helps With Patient Care Bailey Ann Schwartz of Beach Lake, Pa. (in Wayne County), needed specialized care for her systemic scleroderma. She and her family found assistance close to home thanks to the partnership between Penn State Children’s Hospital and Wyoming Valley Health Care System in Kingston. Specialists from Children’s Hospital regularly travel to Wyoming Valley to offer the care that area children need. Services include the following: ■ Cardiology ■ Gastroenterology ■ Hematology/oncology ■ Nephrology/hypertension ■ Pulmonology ■ Rheumatology Bailey Ann Schwartz The feeding program also offers three burned to DVD and sent home with other treatment plans: outpatient feed- the parent or caregiver. ing therapy, the oral motor clinic, and For the Cahills, the experience has an evaluation clinic. Outpatient feeding been life-changing. Tinalee has become therapy is the most common treatment independent and vibrant, feeding her- and includes a single appointment self, using the bathroom, and speaking where therapists work with children to “loads of words,” says Ann. “She came to tackle specific problems. The oral life.” In addition, Ann has gone back to motor clinic cares for children who are work part-time, and she and John can go physically unable to eat. out together again. “Before, everywhere The multidisciplinary clinic features we went, Tinalee came.” Now other care- specialists from pediatric gastroenterol- givers are comfortable taking care of ogy, behavioral psychology, and many Tinalee. “We owe them so, so much.” ❖ other specialties. No matter the treat- ment plan, the goal is the same: teaching To Learn More the parents and caregivers how to main- tain their child’s healthy eating habits at For more information about how the home. Parents are able to watch feeding Feeding Program at Penn State Children’s Hospital can help your family, visit To Learn More sessions in observation rooms attached to each treatment room. In addition, ses- For more information, ask you child’s sions are videotaped with the therapist E-mail: pediatrician or call Penn State Children’s narrating each technique. The session is Telephone (717) 531-7117 Hospital at (800) 243-1455. Penn State Children’s Hospital, 5
  6. 6. For Obese Teens, Surgery Is the Last Resort While such operations are up, they’re not for all youths E xtreme obesity plagues more than ■ Have tried but failed at organized weight- a million teens and young adults, loss attempts of six months or longer. experts estimate. The youths tend ■ Have a body mass index (body weight to be at least 100 pounds or 100 adjusted for height) of at least 40. percent above their ideal body weight. ■ Have finished most of their skeletal So far, the toll for that extra weight growth. That generally means girls must includes a sharp rise in type 2 diabetes be at least 13 years old and boys 15. among the young. And the future may ■ Have obesity side effects that weight not be any healthier for these teens, who loss would help fix. aren’t likely to grow out of their obesity. What’s a parent to do? More and more are looking at the same last resort as “If the child does not change adults—bariatric surgery. Such surgery, in behaviors, then the expected effect, reduces the stomach’s size. You feel full sooner, so you eat less. weight loss may not occur or, with time, could be regained.” —Ronald Williams, M.D., director of Penn State Children’s Hospital Multidisciplinary Weight Loss Program High chairs are great for older children, “If we sense a child is not ready to make who can safely play with toys on a tray. a major change in his or her diet, or if they haven’t made a very valiant effort with some sort of supervised weight-loss program for at least half a year, that’s a real red flag,” says Inge. Babies Need “If the child does not change behaviors, then the expected weight loss may not “Tummy Time” occur or, with time, could be regained,” says Ronald Williams, M.D., director Put infants to sleep on their of Penn State Children’s Hospital backs, but act to avoid flat Multidisciplinary Weight Loss heads while they’re awake Program. Parents and children must also understand the risk for complications, A simple piece of advice in 1992 cut including the very slight risk for death. the death rate from sudden infant Are you looking at such surgery for a death syndrome (SIDS) by more than U.S. doctors did about 150 such pro- child? Experts suggest you seek a center half. That was the year the American cedures on teens from 1991 to 2000, says experienced in the procedure. The center Academy of Pediatrics (AAP) told Thomas H. Inge, M.D., Ph.D., surgical should have a weight-management team parents to put babies to sleep on director of the Comprehensive Weight with experts in different fields—dieti- their backs. Management Center at Cincinnati tians, psychologists or psychiatrists, and Now, the experts have some new Children’s Hospital Medical Center. No surgeons—who can evaluate your child. advice to reduce the odds of flattened one’s sure how many have been done Long-term follow-up is a must. So is a heads, a possible result of babies since. Still, they’re clearly on the rise. strong commitment from you and your spending so much time on their backs. About 60 teens have had the surgery just child. “The operation is a tool, not a cure No one’s sure how common flat at Cincinnati Children’s since 2001. or quick fix,” says Inge. “It takes lifelong heads are. Statistics vary a great deal, But such surgery isn’t right for all obese compliance with a dietary regimen, vita- “from one in five cases for a mild form teens. In a recent Pediatrics article, Inge min and mineral supplements, and exer- to one in 500 to 600 cases,” says AAP wrote that bariatric surgery is warranted cise to maintain a healthy weight and spokesman John Persing, M.D., a pro- in most cases only when adolescents: avoid regaining the excess pounds.” ❖ fessor and chief of plastic surgery at 6 Penn State Children’s Hospital,
  7. 7. Toss Your Baby Walker, Pediatricians Say Children can roll themselves into danger Safety is your top concern for your child. be able to reach a hot cup of coffee wheels; instead, they have seats that Just as you put your infant in a car seat, on a table or a pot on the stove. rotate and bounce. you may think that putting your child in ■ Drown. A child can roll into a pool or Playpens are safe for children learning a baby walker is safe, too. fall into a bathtub or toilet. to sit, crawl, and walk. High chairs are “Safety is a misperception,” says ■ Be poisoned. A child may be able to great for older children, who can safely pediatric emergency physician Joseph reach poisonous items you thought play with toys on a tray. ❖ Wright, M.D., a member of the American were out of reach. Academy of Pediatrics (AAP) Committee ■ Pinch fingers or toes. A child’s tiny on Injury, Poison and Violence digits can get caught between the Prevention. The AAP terms baby walkers walker and furniture. dangerous and says you should throw “Parents should avoid all mobile them out. “Even when parents are super- walkers,” Wright says. For safety’s sake, vising a child, he or she can move a also make sure there are no baby walkers walker at 3 feet per second,” he warns. anywhere your child spends time. An estimated 4,360 children were Walkers also slow development, injured due to baby walkers in 2004, Wright says. “Motor development is according to the U.S. Consumer Product delayed compared with infants who Safety Commission. Walkers can cause are not placed in walkers.” children to: The AAP suggests you use a stationary ■ Roll down stairs, causing head injuries jumping device instead. “Nonmobile and even death. This is the most jumping devices are safer and can pro- common way kids get hurt in walkers. vide a level of freedom for parents,” Playpens are safe for children learning to ■ Get burned. Children in a walker may Wright says. Such devices don’t have sit, crawl, and walk. their tummies for a while. This eases pressure on the back of the head and helps babies build shoulder and neck strength. “This time must be super- vised, 100 percent of the time,” Persing says. “Don’t even run to the bathroom and leave an infant on the tummy.” ■ Relieve pressure on the back of the head when you lay an infant down for sleep “by very gently turning their head 45 degrees to the left one night, then 45 degrees to the right the next night,” says Persing. ■ Change the crib’s position a few times a week. As your child looks around the room, the head will be in a new posi- tion because of that change. Yale University School of Medicine. But on SIDS and a pediatrics professor at the ■ Don’t overuse car seats when the child doctors have seen a “significant increase” University of Virginia School of Medicine. is not in a car. When in a car, move in flat heads in the past decade, says a the car seat often from one side to 2003 article Persing wrote in Pediatrics. To avoid a flat head, Persing and the other. “It’s very important for infants to get Kattwinkel offer these tips: ■ If your child develops a flat spot on some tummy time when they are awake ■ Parents should still place babies on the head, see your doctor. Such flat and supervised,” says John Kattwinkel, their backs for sleep. spots usually form on the back or M.D., chairman of the AAP Task Force ■ When babies are awake, put them on side of the head. ❖ Penn State Children’s Hospital, 7
  8. 8. Teaching the Next Generation of Healers T eaching future doctors how cystic fibrosis, or heart transplants, they funding each year. to provide child-friendly and must provide the most technologically Ask your chil- family-centered care is as much advanced care available. Doctors in dren’s hospital an art as it is a science. While training at children’s hospitals get how you can help few in number, children’s hospitals specialized education and unique experi- make sure chil- train almost one-third of our nation’s ence that no other hospital can provide. dren’s hospitals pediatricians and half of all pediatric But teaching great physicians takes get the money specialists, such as neurologists or cardi- time and money. While Medicare pays they need to train ologists. If you have children, they’ve for training physicians in adult hospi- the doctors who probably been cared for by a pediatri- tals, children’s hospitals don’t qualify care for children. cian or a family practice physician who for this funding because they don’t treat Children’s hospitals also train nurses, trained at a children’s hospital at some adult patients. That’s why, in 1999, occupational therapists, social workers, point in his or her career. the National Association of Children’s dentists, and other health care profes- Because children’s hospitals often take Hospitals (NACH) successfully lobbied sionals. By receiving professional train- care of children with very serious and Congress to create the Children’s ing in a children’s hospital, our nation’s complex conditions, such as cancer, Hospitals Graduate Medical Education future health care professionals gain an payment program. This program pro- appreciation for the specialized needs of vides federal funding to nearly 60 chil- children and develop the skills and com- To Learn More dren’s hospitals that train physicians passion needed to care for families. ❖ and ensures children’s hospitals can To learn more about the importance of continue to provide quality care while NACHRI graduate medical education to chil- they train the next generation of healers. National Association of Children’s dren’s health and children’s hospitals, However, NACH and children’s hos- Hospitals and Related Institutions visit pitals must appeal to Congress for this Articles in this newsletter are written by professional journalists or physicians who strive to present reliable, up-to-date information. But no publication can replace the care and advice of medical professionals, and readers are cautioned to seek such help for personal problems. ©2006 Health Ink Communications, 780 Township Line Road, Yardley, PA 19067, (267) 685-2800. Some images in this publication may be provided by ©2006 PhotoDisc, Inc. All models used for illustrative purposes only. Some illustrations in this publication may be provided by ©2006 The Staywell Company; all rights reserved. (106) Cub Chat is a complimentary quarterly newsletter produced by the Office of Strategic Services at Penn State Children’s Hospital. For questions or additional copies, please call (717) 531-8606. A. Craig Hillemeier, M.D. Medical Director and Chairman CHI-3227-06