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Cystic Fibrosis Care Center


TWEENS & TEENS


Find helpful resources to help your child and family live with CF and issues relating to school and exercise.

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Latest News


Electronic Medical Records:
We're pleased to announce that Electronic Medical Records (EMR) went live in the Pediatric Center on November 24, 2013. We can now order your medications online, and all the doctors who see a patient within the health system can see important data on the patient, improving the quality of multidisciplinary care.

Parenting Children with Cystic Fibrosis
CF parents face a unique set of challenges - keeping up with treatments, clinic visits and daily activities can be frustrating, tiresome and isolating. Parenting Children with Health Issues is based on the Love and Logic parenting program developed by child psychologists and parents of children with CF. Click here for more information.

Cystic Fibrosis and Constipation in Children: An Underestimated Medical Condition
A recent investigation of 214 pediatric CF patients revealed that 47 percent of the CF children studied have constipation. Furthermore, 106 abdominal radiographs were independently assessed utilizing the Barr and Leech scores to determine the test's diagnostic value. The study concluded that constipation is a significant medical issue in CF and was associated with low total fat absorption and a history of meconium ileus; and that abdominal radiography seems of little value in the regular follow-up of CF patients.

Source: Constipation in pediatric cystic fibrosis patients: an underestimated medical condition. J Cyst Fibros 2010 Jan; 9(1):59-63.

Nutrition

The teen years are both fun and hard, especially for teens with cystic fibrosis. Teens with CF can do almost everything their peers do, like go to school, attend college, date and plan careers. However, it is crucial for a growing teen with CF to pay attention to high nutritional needs and take care of the lungs. How a teen with cystic fibrosis cares for his or her body now will affect future health.

For teens with CF who require digestive enzymes with all meals and snacks, getting enough calories each day to support the major physical growth that occurs during the teen years is challenging. Lung disease with infections and inflammation affects appetites and burns calories, making it even more challenging. For these reasons, many young men and women with CF who historically have had difficulty gaining weight can lag behind others their age in physical growth and development. They can be thinner, shorter, less developed and generally younger looking. Boys can be about 1-1/2 years behind in experiencing the physical changes of puberty. For girls, the onset of menstruation is generally two years later than for girls without CF.

Important nutrients for teens with CF include calories - 30%-50% more than other teens, or 3,000-5,000 calories a day. Fat in food is the best source of calories. About 15%-20% of their total calories - between 600 and 1,000 - should come from sources of protein like meat and meat products, milk and milk products, fish, seafood, soy products, beans, eggs and nuts. Teens need more iron during puberty, when muscle and blood volume increase. Plus, the body needs more calcium when bones are growing. CF malabsorption means less vitamin D, and therefore less calcium, is absorbed, so 1,300 mg/d of calcium daily may be required. Foods high in zinc, such as meats, seafood, beans and nuts, help immune function, growth and wound healing. The CF dietician or care provider will teach you how to add these nutrients into your (or your teen's) diet, and you can find more information here.

Calcium plays an important part in keeping bones strong, and it is important that people with CF ages 9 and up get 1,300 to 1,500 mg of calcium a day. It is best to get calcium from foods. More calcium may be required from a pill - your CF provider will be able to tell you.

Vitamin D helps the body absorb calcium so it can make bone, but people with CF don't easily absorb it from foods. They must take vitamins with water soluble vitamin D, which is easier to absorb.

Your nutrition plan
Teens with CF need to eat a balanced, high-calorie diet with plenty of fat and protein in order to grow and be active. A high-energy lunch might include a double cheeseburger with French fries, an apple and ice cream; fried chicken with potatoes, gravy and vegetables; or a deli sandwich with extra cheeses and meats. A typical high-energy snack might be apple pie with ice cream or a high-calorie sports snack bar. And don't forget milkshakes: either homemade, with ice cream, cream, powdered milk or instant breakfast powder, with fruit; or a store-bought calorie-rich shake mix. A well-balanced diet also includes lots of fruit and vegetables, grains, nuts, meat, fish, poultry and dairy.

Enzymes and vitamins
Teens should not forget to take their enzymes, if prescribed, as well as special multivitamins that have more easily absorbed forms of vitamins A, D, E and K. Take vitamins with enzymes and food to aid absorption. A CF care provider may also suggest adding high-calorie nutritional supplements to drink if a teen is having trouble gaining or keeping weight.

Tube feedings
Tube feedings may be prescribed for a teen who has low energy or can't gain weight and height on meals, snacks and supplement drinks alone. Tube feedings help a teen gain strength, energy, weight and lung health. There are many kinds of feeding tubes including gastrostomy tubes (buttons), nasogastric tubes (nose-to-stomach), and orogastric tubes (mouth-to-stomach). Many teens get calories through a feeding tube with a pump all night in private, and then have normal daytime meals and activities. A CF care provider can give the teen a video on the proper use of a feeding tube.

Exercise
Exercise is important for teens with CF when done safely and correctly. Exercise strengthens lungs and helps to clear lung mucus, builds muscles and strong bones, and lowers emotional stress. Brisk walking, running, swimming, biking and jump roping are aerobic activities than can help teens feel better and build strong lungs. Thirty minutes of exercise a day, 3 times a week is optimal. Teens should listen to their bodies and rest when they're tired. In addition, because people with CF lose more salt when they sweat, teens should drink plenty of liquids before, during or after exercise; as well as eat salty snacks like chips and pretzels. A CF care provider will be glad to help teens factor a daily exercise program into their busy schedules.

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Bone Disease

Teens with CF are at risk for poor bone health, which increases their risk for osteoporosis, osteopenia and broken bones later in life. Getting enough calcium and vitamin D in their diet builds bone mass in children and teens and helps keep adult bones healthy. That's why weight-bearing exercise (walking, jogging, jumping rope, dancing, weight lifting, etc.) is so important at this age. The right amount of pancreatic enzymes and food are also necessary for a good diet, good body weight and healthy bones. Low body weight can lead to low bone density and fractures.

Poor nutrition and lung disease can also slow puberty. A lot of bone is made during puberty, so slowed puberty could mean less bone being made, setting the stage for future bone disease.

The CF care team will screen for osteoporosis or osteopenia by checking height and weight. They will track pubertal development. Some yearly lab tests screen for bone disease. If a teen takes extra vitamin D because of low levels, lab tests will be done more often to check for vitamin D levels. A painless dual-energy x-ray absorptiometry (or DEXA) scan may be ordered to check for bone density and diagnose osteoporosis. All people with CF should have a DEXA scan by age 18, and it is done every one to five years.

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College, University and Vocational Training

After finishing high school, some students with CF may decide to get a college and/or university degree or learn a vocation. Colleges, universities and other places of higher education that get federal funds are covered by Section 504 (click here to learn more) and cannot refuse to admit a student solely because he or she has CF. Most colleges and universities have an Office for Students with Disabilities that can help students get accommodations that are needed. If there is no such office, there should be someone in the school's administration who helps students obtain accommodations because of disability. You do not need to tell the school that you or your child has CF. But you will need to tell them about CF if you request accommodations that you or your child needs because of CF. If your child goes away to school, contact the CF care center nearest to the school at the beginning of the school year so that they can help you with any treatment for health problems during the year. If you cannot get changes from a college, university or vocational school, you can file a complaint with the school. Your CF care team can help with this process.

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Forming Identity and Independence

An important part of adolescence is developing a sense of who you are and how you relate to others. For teens with CF, these feelings are more intense as you see the differences that come with the disease. You have control over how you see yourself and who you become. If you see yourself as weak and sickly, that is what you will become. However, if you see yourself as someone who is strong, creative and can rise above some limitations, that is what will happen.

The teen years are often characterized by risk-taking and rebellion. For teens with CF, this behavior can often be directed at things that can significantly hurt them and even have life-threatening consequences. Refusing medications and digestive enzymes or airway clearance techniques are common. Some even question whether they really have CF. Smoking and abusing alcohol or drugs will have a negative impact on your health. If someone offers you alcohol or drugs, you can use your CF as a convenient excuse and say, "My CF doctor told me I could get really sick if I did that!"

The struggle for independence and control is another big issue during the teen years. Parents of teens with CF can become overprotective, which can lead teens to believe they can't take care of their own needs, when the opposite is true. You will need to sit down with your parents and decide how they can help you with your CF as you get older. Taking on more responsibility for your CF self-care will help get nagging parents off your back.

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Telling Friends about CF

Some teens with CF find it difficult to tell friends they have CF. Friends will need to understand and accommodate how much time and effort must be spent taking care of yourself. They will also need to understand the physical complications. And they will need to know that CF is generally life limiting. Not everyone needs to know everything at once, but the longer one goes without mentioning CF, the harder it can become. The best approach for many is not to make a big deal and simply be factual: "By the way, I have a health condition called CF, I have to spend time each day doing lung treatments and take some medicine each time I eat so I can use my food better." Not much more needs to be said and you can decide if you want to answer questions or share more. For most people you tell, it won't make a difference. For those that might, it's good to know that early in the friendship and may be better not to have them as a friend after all.

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Transitioning

A key task of adolescence is looking to the future, and setting and achieving goals. The future holds great promise for further advances in the fight against CF. Teens with CF need to sit down with their CF health care provider and CF social worker to set realistic goals for their future. Planning for the future also involves transitioning from pediatric CF care to adult CF care. Most people with CF start making the transition from pediatric care to adult care between the ages of 17 and 21. The pediatric team you've been dealing with will coordinate with the adult care professionals at North Shore Long Island Jewish Hospital.

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Self-Care

By the time a time a child with CF is 12-14 years old, they should begin self-care. Self-care simply means taking GOOD care of yourself. It means putting some thought into how your body is working each and every day. If you do this well, you have a greater chance of feeling good, being healthy and doing the things you want to do in the future.

The first step in self-care is knowledge - having a solid understanding of CF and how it affects your body. Keeping up with medical advances through newsletters, Web sites, CF conferences, etc. will allow you to make good decisions for yourself.

The second step in self-care is performance capabilities. This means doing your CF cares the right way and correcting any bad habits - for instance, adjusting digestive enzymes according to the meal or snack or performing airway clearance techniques as prescribed by your CF doctor. It's a good idea to make an appointment with your CF care team and have them assess your performance capabilities.

The third step in self-care is having support people available. This means identifying individuals, both teens and adults, you can look to for strength and comfort in good times as well as challenging times - for some it might be family, for others it might be friends and teachers. Line up your support people in order of priority, starting with your most important and working down to the ones you might use for emergencies only.

The fourth step for successful self-care is setting up your CF self-care teams. Since we are talking about your body, YOU are the Team Leader. You need to perform a systematic "body check" every day, from head to toe, and determine if the way you feel differs from how you usually feel - your "baseline" - and then determine whether you need to make some changes in your treatment to prevent yourself from getting sick or preventing damage from happening to your body. You may want to keep a log to help you track your daily body checks.

As the Team Leader, you have four different jobs: assessment and decision-making for your health (above), making return appointments with your CF care team and scheduling any tests or procedures, managing your supply of home medications and medical supplies, and knowing and understand your (or your parents') insurance policy.

You will need to set up three CF self-care teams. The first is your CF clinic team, headed by your primary CF healthcare professional. The second is your personal CF self-care team, which includes you and your support people. The last team you need to set up is your PRN self-care team. "PRN" means "as needed" in Latin. This team will be needed only in unusual or emergency situations. The CF care professionals at North Shore Long Island Jewish Hospital also offer home health services to provide healthcare when needed.

If you don't already have a daily schedule, now is the time to start one, listing how all your CF cares fit into your daily routine and broken down into which cares you will perform and which ones family members will perform. It is encouraged that you create a contract with your family ensuring everyone understands who is responsible for what and when. You can use the contract for earning rewards for following through on your contract!

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The Future

If the adults in your life, including your parents, members of your CF teams, teachers, counselors and friends have done their jobs well, you have passed the stage of trying to convince everyone you are an adult and are beginning to prepare yourself for your future. There are several specific challenges of preparing for adulthood when you have CF. Most importantly, you need to have a positive attitude and a feeling that life is truly worth living, no matter how mild or severe your symptoms happen to be. There have been wonderful advances in the care and treatment of individuals with CF in the past few decades and the research taking place is incredibly exciting. More and more individuals with CF will reach adulthood and go on to have satisfying lives filled with careers, families and friends, and whatever else they dream about. How you go about this is key to being successful! At the same time, you need to balance reaching your dreams with taking the time and energy for your CF self-care. Start talking and asking questions if you want to be involved in medical decisions. Start being seen without your parents at clinic visits. Educate yourself about CF through publications on this website and through other sites, too. And don't give up! Eventually, you will find the right balance for you.

One of the most important decisions of your life right now has to do with school and preparing for a career that will provide you with the income and benefits needed when one has CF. If you are still in high school, it will mean working toward getting grades good enough for college or vocational school acceptance. Take advantage of scholarships, especially those available to students with CF. Your CF social worker can help with scholarships and almost every other issue facing young adults with CF.

If you are planning on attending college away from home, discuss this with your professional CF self-care team to discuss if this is a realistic option for you. If you decide to go, realize that it will take extra power and determination to work CF cares into your schedule along with classes, college social life and perhaps a part-time job. Your CF cares should always be your first priority!

If full-time education or work seems like more than your health will allow you to handle, there is always the possibility for Social Security Disability. Qualifying for Disability does not mean that you are totally disabled. You can use your Disability income to help you financially as you continue to plan for your future. Social Security Disability can also provide you with the medical insurance you need.

As you become an adult, you should realize there are many obstacles in many areas of life. However, help is always available to you during this transition, starting with the CF care professionals at North Shore Long Island Jewish Hospital.

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