This document provides an overview of the Feeding Program at Penn State Children's Hospital. It describes the program's goal of helping children with feeding and nutritional problems. It then highlights the story of Tinalee Cahill, an Irish girl who was unable to eat solid foods or speak and was dependent on a feeding tube. Through the Feeding Program, Tinalee was able to begin eating solid foods again and come off her feeding tube within a month of intensive treatment. The program offers inpatient, outpatient, and home-based services to help children with a variety of feeding issues and get the nutrition they need.

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. 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, www.pennstatechildrens.com

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 www.cdc.gov/nip.
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
www.pennstatepediatricstemcell.com. 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, www.pennstatechildrens.com 3

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, www.pennstatechildrens.com

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- www.hmc.psu.edu/childrens/feeding.
For more information, ask you child’s
sions are videotaped with the therapist E-mail: feedingprogram@hmc.psu.edu
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, www.pennstatechildrens.com 5

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, www.pennstatechildrens.com

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, www.pennstatechildrens.com 7

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 www.childrenshospitals.net. www.childrenshospitals.net
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.
www.pennstatechildrens.com
A. Craig Hillemeier, M.D.
Medical Director and Chairman
CHI-3227-06