Wednesday, November 26, 2014

Get the Family Moving After Thanksgiving

You and your family have eaten all of the turkey and the sides, watched hours of football, and now you feel like you can’t move a muscle.

Holidays are usually a time to indulge ourselves with delicious foods that we only have once a year, but it’s important to fight the tryptophan, an amino acid in turkeys often associated with sleepiness, and keep your family moving.

“The most important thing to do is plan your physical activity out,” said Children’s National Health System’s sports medicine pediatrician Nailah Coleman, MD.

Here are some tips on how to plan a family activity:
  • Have several options available based on energy level and age appropriateness. For example, a 7 or 8 year old cannot weight lift or participate in a 5-mile jog, but he could go for a hike or a 1-mile jog.
  • Set a time frame for the activity.
  • Follow everyone’s mood. If the family seems ready to go right after a heavy meal, it’s time to seize the day and play!
According the American Academy of Pediatrics (AAP), children spend an average of nearly three hours a day watching television and only half of children and teens get regular exercise. It’s recommended that kids get 60 minutes of moderate to vigorous activity a day, 30 minutes for adults, so working out as a family is beneficial for parents too.

“This time of year is a great time to play football with the kids before you watch the game together on TV,” said Dr. Coleman. “You can also make a game of watching TV by asking everyone to do their own ‘touchdown dance’ with each touchdown scored or dance for each first down, if it’s a low-scoring game.”

Family-Friendly Activities:

The AAP lists several suggestions for active family activities, including:

  • Walk around the block
  • Playing interactive video games
  • Mall walking
  • Play tag in the front yard
  • Buy a kite, put it together as a family activity, and fly it in the park. While you hold onto the kite string, let your child run with the kite until the wind catches it and sends it aloft.
  • Take a family bike ride
  • Wax the car as a family activity
  • Have a family dance party
  • During the holiday season, take a family walk in the evening and enjoy the holiday lights on the homes in the neighborhood
“The goal should be to have fun and then kids will be willing to do it. If they’re having fun, they’ll probably do it longer than the recommended amount of time,” Dr. Coleman said.

Prematurity Awareness: A Conversation with Our Neonatologist

Complications of premature birth outrank all other causes as the world’s number one cause of death in children under the age of 5, according to the United Nations.

In the United States, November is National Prematurity Awareness Month, a time to draw attention to premature birth and the importance of increasing healthy and safe pregnancies and deliveries.

What is Premature Birth?

A premature or preterm birth is a birth that is less than 37 weeks or is at least three weeks before a baby's due date, according to the Centers for Disease of Control and Prevention (CDC).

Worldwide, one in 10 births result in a premature infant or 15 million babies are born prematurely each year, said Billie Lou Short, MD, Chief of the Division of Neonatology at Children’s National Health System.

Nearly half a million babies in the United States alone are born prematurely each year, according to the March of Dimes, a nonprofit organization focused on pregnancy and infant health.

It is the “number one cause of death in the newborn period, birth to 1 year of age,” Dr. Short said.

“Although babies born very preterm are just a small percentage of all births, these very preterm infants account for a large proportion of all infant deaths. More infants die from preterm-related problems than from any other single cause,” according to the CDC.

Learn more about the departments at Children’s National  -  Neonatology, Critical Care Medicine, and Fetal Medicine -  that treat premature babies.

Born Too Early, Too Small

Throughout pregnancy, important development occurs, especially in the final months and weeks before birth. Low birth weight and retinopathy of prematurity are some of the health risks associated with babies born too soon.

“Over 1 million children die each year due to complications of preterm birth. Many survivors face a lifetime of disability, including learning disabilities and visual and hearing problems,” Dr. Short said.

Risk Factors for Premature Birth

According to Dr. Short and the CDC, some known factors that contribute to premature birth are:
  • Carrying more than one baby such as twins, triplets, or more
  • Problems with the uterus or cervix
  • Stress
  • Poor nutrition
  • Chronic health problems in the mother such as diabetes, high blood pressure, and clotting disorders
  • Certain infections during pregnancy
  • Cigarette smoking, alcohol use, or illicit drug use during pregnancy
  • Having a previous preterm birth
  • Mother's age (women younger than age 18 and older than 35 are more likely to have a preterm delivery)
  • Exposure to environmental pollutants
Read more about factors contributing to a premature birth.

What Can Be Done to Reduce the Risk of Preterm Birth?

A mother could do everything correctly and still have a preterm baby, but some of the following tips may help reduce the risk, according to Dr. Short:
  • Visiting a healthcare provider regularly before pregnancy and throughout the pregnancy
  • Managing the mother’s health, i.e., controlling blood pressure, no smoking or excessive alcohol use
  • Maintaining good maternal nutrition and no illicit drug use
  • Asking the obstetrician about prescription medications to find out about potential effects on the baby
  • Since a Caesarean section (C-section) or Caesarean delivery may increase the risk of a baby being delivered too early, this surgery “should only be done when there are clinical reasons to do so,” Dr. Short said, such as fetal distress, uterine rupture, and other critical situations

Monday, November 24, 2014

Calling Children’s National “Home” for the Holidays

Child Life Specialists play Santa's helpers for the day.
The popular Christmas carol, “(There’s No Place Like) Home for the Holidays,” is not a reality for some patients at Children’s National Health System, but our teams and volunteers work hard to make our families’ experiences as close to home as possible.

For Thanksgiving, the Ronald McDonald House Charities of Greater Washington, DC, is providing a turkey dinner through Boston Market to families in the Hematology and Oncology floor unit. The charity’s board members plan on serving about 80 people, according to Ronald McDonald Family Room Coordinator, Volunteer Services Michelle Kong.

“There are several Hematology and Oncology families that generously give back to the unit during the holiday season with gifts, toys, and meals,” added Robin Stone, who helps to coordinate these gifts for the holidays.

Spending Christmas at Children’s National

Last December, this was a reality for Sierra Wilson and her sons, when she arrived at the hospital because 5-month-old Zion wasn’t gaining weight. He was diagnosed with ventricular septal defect and soon discovered he needed surgery and may be here through Christmas.

“I thought my kids wouldn’t have any gifts because I had no time to shop or wrap,” said Wilson. “But our time at the hospital was made so easy for us. I cried the whole week of the 20th because I just didn’t understand people were so nice.”

Wilson said she had expected that the staff and volunteers would go home, to their own families, and was surprised when they stayed with her and her sons.

“It was like Christmas morning with your family, even though we were at the hospital,” said Wilson.
Wilson said volunteers and staff helped her and her oldest son decorate Zion’s room, and they got to see First Lady Michelle Obama when she visited children to read “Twas the Night Before Christmas.”

“Santa even came around Christmas day, now, what child gets to actually see Santa on Christmas?” said Wilson. “My oldest son still thinks he’s in Disney World every time we come back to Children’s.”

How Santa and Mrs. Claus Raise Spirits One Room At a Time

 “I’ve been a child life specialist for over 30 years and I have worked every one of those Christmases,” said Judy Ross.

Ross’ husband, Milton Shinberg, has been Santa at Children’s National for 10 years, and her daughters also volunteer as Santa’s helpers. In 2009, when the East Tower was built, Ross and Shinberg  decided to move to two Santas so they could divide and conquer the units. They wanted every child here on Christmas day to get a visit from Santa and a photo if they want it. If the patient is in isolation, they take photos of Santa ahead of time and leave the photos with the children.

“We go to every unit on ever y floor. Santa holds the NICU babies, and he visits the inpatient psychiatry unit to deliver messages of hope and good cheer,” said Ross.  “The families are so touched by the visit. I remember one little boy saying ‘He found me!’ Even though he was in the hospital, Santa found him.”

Child Life Specialists Replace Elves in Dr. Bear’s Toy Shoppe

Child Life at Children’s National set ups Dr. Bear’s Holiday Shoppe with all of the toy donations collected throughout the year through Volunteer Services’ Dr. Bear’s Toy Closet. The Board of Visitors volunteers are there to wrap the gifts, and volunteers also prepare bags of toys for various age groups to have on hand for children who get admitted the night before Christmas. Santa then delivers those on Christmas day. These gifts also go to patients who celebrate Hanukah.

“So every child who is here (admitted) on Christmas will have a present,” said Volunteer Services team leader Katherine Watts.

“We started a new tradition last year in our department called ‘Dr. Bear Gives Back’ where donors and volunteers donate money or gift cards to local grocery stores, and we then adopted one inpatient unit and gave out handmade Thanksgiving cards and $25 grocery store gift cards to each family on that unit the week of the holiday, to make their day a little brighter.”

Last year, thanks to a large stuffed animal donation around Thanksgiving, volunteers were able to give patients and siblings a stuffed animal, too.

Advice for Families Spending the Holidays with Children’s

“If you decorate the room and get your child involved and fill the holiday spirit in the room, it’s not that bad,” said Wilson. “So many children had to spend major holidays at Children’s National and a lot of staff and volunteers have to take care of these kids. Treat them like your family because they’re going to treat you like you’re family.”

How You Can Help

There are many ways you can help children who are in the hospital this holiday season – and make the holidays a little brighter for them and their families.

  • Help Fill Dr. Bear’s Closet. You can donate new toys to Dr. Bear’s Closet, or make a cash donation to help keep the closet stocked with games and toys year-round. Dr. Bear’s Closet accepts non-medical items for patients and families such as toys, games books, clothing, toiletries, and art supplies.  Please call 202-476-2062 to arrange a drop-off of toys or other items. View the wishlist.
  • Donate Online. You can make an online gift, honor a friend or relative, become a monthly donor, or give in other ways.
  • Give Blood. The holidays are a particularly important time to donate blood for our young patients, since many surgeries are scheduled over the school break and many of our regular donors are out of town.  

Friday, November 21, 2014

Get Psyched Friday: How Diabetes Impacts a Child’s Self-Esteem

In observance of American Diabetes Month, psychologist Eleanor Mackey, PhD, discusses how diabetes can impact children’s self-esteem or their sense of worth in her latest Get Psyched Friday post.

Type 1 diabetes is one of the most common chronic illnesses in childhood, affecting one in every 400 - 600 children. Managing diabetes requires a substantial amount of mental and physical effort and has to be attended to several times a day. The stress that this can cause is significant – for both parents and their children.

Common Feelings Among Children with Diabetes

The remarkable thing I have seen over and over again is that these children and their families are incredibly resilient and work very hard to manage their illness and continue to have normal, healthy, and happy lives. However, diabetes can have a significant impact on these youngsters, including aspects of their well-being that aren’t easily seen or measured. For example, diabetes can affect children’s self-esteem, or their sense of their own worth.

Feeling Different Because of Diabetes

Despite families’ best efforts, diabetes can feel very defining to kids. Often, teachers and peers may treat them as different, even if well-meaning.  For example, a teacher may set aside a different snack for a diabetic child than the rest of the class. Rightfully concerned parents often ask, “Did you check your blood sugar?” before asking how their child’s day went.

Sleepovers, school trips, and birthday parties all require more thought and parental involvement for children with diabetes than for their peers. Therefore, children may begin to feel defined by their illness and this can cause some children to feel bad about themselves.

Feelings of Failure to Control Blood Sugar

Also, it is important to understand that diabetes is very difficult to manage. It can be hard to achieve the target blood sugar levels and a lot of factors outside a child and family’s control can make this more difficult. Children who are struggling to manage their diabetes might feel a profound sense of failure, which is often accompanied by concern and frustration by their families and medical teams.

What Can Parents Do to Help?

All of these factors can contribute to low self-esteem, which is in turn linked with other difficulties, such as depression, anxiety, and even more difficulty controlling diabetes. Parents should try to keep the diabetes from defining the child, while still being careful to meet their healthcare needs. Two easy ways to do this include:
  • Serve a snack that is low in carbohydrates and sugar to all of the children in a group instead of serving a “special” snack to a diabetic child.
  • Don’t ask a child, “Are you sure you should have that?” Children with diabetes can eat the same foods as other kids with proper planning.
If you are a parent of a child with diabetes, make sure to find plenty of other things to define your child and be aware of subtle changes in your child’s mood or functioning. If you have reasons for concern, seek a consult with your child’s endocrinologist or a psychologist.

Children’s Comprehensive Approach to Treating Diabetes

Your child's visit doesn't end with the endocrinologist's diagnosis and recommendation. The Childhood and Adolescent Diabetes Program at Children’s National focuses on education and teaching patients and families how to cope with all aspects of diabetes and its management.

Program participants have access to a multidisciplinary team of pediatric physicians, certified diabetes educators (CDE), registered nurses, dietitians, a psychologist, and a dedicated social worker.

If you would like to receive occasional information on diabetes management, sign up for our Diabetes Team E-Newsletter.

Related Resources:

Tuesday, November 18, 2014

How to Help Kids Cope with Surgery

Every year, thousands of surgeries take place at Children’s National Health System. Children can feel anxious about getting surgery, which can involve several teams of healthcare providers and other personal.

Children’s National has information both in print and online, titled “Having Surgery,” that highlights many questions parents may have regarding surgery. There is also a section that identifies how to speak with your child about surgery and some examples of language to use depending on the age of the child.

To help families understand how to prepare for surgery, we spoke with two of our certified Child Life Specialists Liz Anderson and Lourdes Rocha, who work in the operating room. Child life Specialists help make families feel comfortable and knowledgeable about the services Children’s National provides.

How can parents help kids feel less anxious about anesthesia and surgery? 

Information about surgery we provide identifies how to prepare a child based on their age. It would also be important to explain anesthesia as a medicine that helps the patient fall asleep for the surgery/procedure, but that this sleep is temporary and that the patient will wake up after their surgery/procedure. Be careful to not explain anesthesia as being “put to sleep” as many children associate this with the death of a pet.

Another resource to lessen anxiety would be for families to attend the pre-surgical tour in person or to watch a virtual tour online if they are unable to attend.

What are some common fears children have about surgery?

Some common fears of younger children are separating from their parents, strangers, and things that go on their body (such as the blood pressure cuff, pulse ox, and IV). Children are also fearful of shots. It is important to note that at our hospital, anesthesia is generally done via mask, and the IV is usually, but not always as this depends on the patient, placed after the patient is asleep with anesthesia.

Older children express fears of not waking up and/or dying, waking up during surgery, pain, and body changes, specifically if surgery will change their appearance in some way.

What tips would you offer to help parents explain the reason for the surgery? How detailed should parents be?

We recommend being honest and appropriate. Parents know their child best and know how much information would be overwhelming for his/her child. It is, however, important to prepare before surgery, and let their child know they are going to come to the doctor to fix or help their current condition.

With young children especially, focus on giving simple, concrete explanations about surgery.  We also prepare children for what they will see, hear, and feel when awake; we do not talk about what surgery entails unless specifically requested by the child.  In these cases, we still use simple, concrete explanations to give information.

Older children or adolescents may be more interested in how things are done and may want more information about the surgery and process.

Related Resources:

Thursday, November 13, 2014

Parent Navigators Help Families Cope, Share Their Own Experiences

When you think of navigators, you may think of someone traveling or exploring new worlds. At Children’s National, we have parent navigators who help other parents figure out the best path of care for their children, especially those with rare or serious illnesses.

Children’s National’s Parent Navigator Program founded by pediatrician Cara Biddle, MD, MPH, provides peer-to-peer support to parents of children with special healthcare needs. The program is located at the main hospital, but offers services at other primary care sites including the Community Health Centers at Adams Morgan, Shaw, Martin Luther King, Jr. Avenue, and Good Hope Road.

The parent navigators have children with rare disorders or special needs, and they work with other parents to help them work through challenges that are common for families like theirs.

“Having this type of peer-to-peer support for the family shows that someone is there who understands what families of children with special needs are going through,” says Michelle Jiggetts, MD, MS, MBA, the program administrator for the Children’s National Complex Care Program and the Parent Navigator Program. “They have walked in their shoes and are sensitive to their needs.” The program employs six full-time parent navigators, two of whom are bilingual. Many families who seek assistance or coaching with their child’s ailments are referred from the Complex Care Program or by primary care physicians to the parent navigators.

Jiggetts also is the liaison for the Maryland Department of Health and Mental Hygiene Office of Genetics and People with Special Healthcare Needs.

Helping the Smallest Patients

Beginning on December 1, Children’s National will be evaluating how parent navigators can help families and infants with fragile medical conditions successfully manage the transition from the Neonatal Intensive Care Unit (NICU) to the home. 

The NICU review will be part of a $2 million grant from the Patient-Centered Outcomes Research Institute (PCORI), headed by Karen Fratantoni, MD, MPH

Stories of Hope

Children’s National parent navigators have moving stories themselves, and they tap into those personal experiences to help others.

Melissa Gaona has a 4 year old with a rare brain anomaly known as pontine tegmental cap dysplasia, a disorder characterized by delays in development, which includes hearing impairment. Gaona also had a parent navigator herself who helped “encourage me, (and) provided resources where I needed to go, and how to cope.”

Now, she is able to tell other families “I know how it feels.”

Yan Orellana is one of the bilingual navigators in the program and he has a son with autism. Because he is a father, he is able to identify with other dads who may be in a “state of denial” or are unable to express themselves freely. “Fathers find it easy to talk to me about their concerns each day,” Orellana said.

Darcel Jackson’s daughter, who has a rare chromosome anomaly, was initially given a life expectancy of at most, 30 days. Her daughter is now 8. 

“As a parent of a special needs child, the journey never ends,” Jackson said. “The goal of the program is to give families the ability to advocate for themselves, understand their child’s needs, and become an active member of their child’s health care team.”

Related Links:

Monday, November 10, 2014

Top 10 Questions Parents Should Ask Their Pediatrician at Well Visits

A well child visit is the best time to talk with your child’s doctor about normal growth, development, and behavior. We’ve put together the top 10 questions you should prepare for your visit.

“Write down your questions ahead of time. Especially if one parent is going and the other is not,” says Children’s Health Center pediatrician Daniel Felten, MD, MPH. “Because if you don’t, the doctor will drive the agenda and you may forget about the things you care about. Also, share your questions right at the beginning of the appointment to ensure they are answered.”

Most well visits last only about 15 to 20 minutes, so here are the 10 common questions to ask your child’s pediatrician and make the most of your time:
  1. Ask about a specific concern you have, like “Why is my child always tired?” or “How can I manage my child’s allergies?”
  2. Is my child’s development and growth appropriate for her age?
  3. What vaccine(s) does my child need during this visit? What does it protect against?
  4. Is everything up to date, and may I get a record of my shots?
  5. What infectious diseases are going around and how can I best keep my kids safe duringx y or z season?
  6. Is my child old enough to graduate from a car seat to booster seat? Is it time to get rid of a booster seat? Can I turn my child’s car seat forward?
  7. When should my kid start using regular toothpaste?
  8. Should my child be going to the dentist?
  9. Is bedwetting normal for older potty-trained kids? 
  10. When should I bring my child back?
“Parents with a child who has special needs should be asking about any additional community resources, especially if the doctor doesn’t bring it up,” says Dr. Felten.

It’s also important to ask questions about any sort of treatment that is being prescribed, according to Dr. Felten. He said that parents should understand the diagnosis, how long to give their child prescribed medicine, and what is the dosage. Do not hesitate to ask the pediatrician to clarify instructions.

Helpful resources:
•    Is my child getting a shot?