Teenage years can be both fun and challenging for anyone, but this is especially so for teens with CF. During the teen years many changes take place.This is the time when puberty happens and growth really takes off. There appears to be a connection between higher body weights and lung function. Maintaining a healthy body weight is important in order to grow and maintain good lung function. This is true even after growth has stopped. Teens with CF can do almost anything their peers can do. So remember to focus on nutrition in order to stay healthy and active!

Important Nutrients for Teens

Calories

Most teens need about 2000 to 2500 calories. Teens with CF may need as many as 3000 to 5000 calories per day in order to grow well and stay healthy. Increasing fat in the diet is a good way to get more calories. You can add healthy fats like oil to pasta, avocado, nuts and salmon to salads, and nut butters to bread.

Iron

Teens need more iron during puberty and for muscle building during growth and development. Foods high in iron include meat, fish, seafood, fortified breakfast cereals, green leafy vegetables, beans, and raisins.

Calcium

Calcium is important for teenagers to help build strong bones.People with CF in general are at risk for bone disease. Maximize your bone building capacity by including three servings from the dairy group each day.Foods high in calcium include milk, yogurt, and cheese.In addition, it is common for people with CF to malabsorb fat soluble vitamins, such as Vitamin D, that helps aid in the absorption of calcium. So remember to take your CF vitamins!

Zinc

Zinc is an important nutrient for the immune system, wound healing , and growth. Zinc is found in meats, fish, seafood, beans, seeds, nuts and fortified breakfast cereals.

How can I get the nutrition I need when I have a busy lifestyle?

Teens are busy people. In addition, teens with CF need to have time to do all of their respiratory treatments and still have time to lead an active lifestyle.Getting enough calories during the day can be a challenge, but it can be done with some planning.

Breakfast on the go can be a breakfast sandwich made with extra cheese, smoothies, muffins, full-fat yogurt with granola, or a bagel with cream cheese

Stock your backpack or locker at school with high calorie options like sports bars, trail mix, pre-prepared supplements (Ensure plus©, Boost plus©), peanut butter or cheese crackers.

Make your afternoon snack count: Try sandwiches with extra cheese, avocado, and bacon.   Make super milk with whole milk and half and half and drink with some oatmeal, raisin, and walnut cookies. Make a mini pizza with an english muffin and double the cheese.

Don’t forget the dessert. Having a bedtime snack or dessert can provide the extra calories you need. Make a sundae with high calorie ice cream, nuts, fruit, and other toppings.Have a bowl of cereal or granola with half and half. Make a homemade milkshake or smoothie with your favorite ingredients.

CF Related Diabetes

Some adults and teens with CF have cystic fibrosis related diabetes. This type of diabetes is different than the types of diabetes that occur in people without CF. In CF, the pancreas may be clogged with mucus.When this happens insulin is not secreted into the blood very efficiently.As a result, blood glucose may increase.This type of diabetes occurs often in individuals with CF, especially as they get older. For this reason, all people over the age of 6 are screened yearly with an oral glucose tolerance test. If blood sugars remain high, people with CF are referred to a diabetes specialist that will determine the best way to treat them.

Teens with CF can lead active healthy lives.Paying attention to nutrition and eating a high calorie diet, taking prescribed vitamins and enzymes, and monitoring for diabetes can help teens stay healthy and reach their goals!

“No, you need to do it now.”

Does any of this sound familiar? If so, you are not alone. And here’s the good news: you live in a perfectly normal household.

The teen years are a challenge for you the teen, as well as for your parents. This would be true even if you didn’t have CF. You are starting to assert yourself and test your independence, and this may be seen as rebellion by many parents. As a teen, you may want to take more control over your treatments, and want them to be a lower priority than your other activities – parties, sports, schoolwork or time with your friends. This is totally normal to you the teen, but may be completely frustrating to your parents.

So, how do you find a common ground so that both you and your parents get what you want?

First of all, having CF stinks. We all know that, and wish no one had it, but unfortunately that cannot change. And with CF comes all sorts of things that need to be done in the day. Treatments, medications, a high calorie diet and exercise are just a few of the things your doctor wants you to adhere to.

Teens often feel awkward and insecure, and may lose confidence in their abilities and skills. You probably feel frustrated because of all the drugs you need to take and the time you spend having to do the treatments. You may even want to pretend you are healthy when you are out with your friends. Because of this, you may not eat healthy foods, not take your enzymes, and some of you may even start smoking. Rebellion is a perfectly normal part of going through puberty. Unfortunately, teenagers with CF whose behaviors are rebellious can potentially lead to serious problems with their health.

Talk with your parents about when it is possible to be flexible on treatment times. If you try to figure out strategies together, then they may have an easier time respecting your increasing independence. But for this to succeed, you need to be responsible too. Your parents can be a tremendous help to you by allowing you the freedom to make decisions. Even if you fall down and get hurt, you can learn from your mistakes. However, parents do have the right to - and should - step in if you are neglecting your health to a point where it worsens.

All of the things you need to do every day to stay healthy may not seem like a huge list to your doctor, but to you it may feel like having to climb Half Dome in Yosemite. All of the things that we, your CF Care team, ask you to do are things that will help you live and maintain a healthy life with a chronic lung disease (CF).

Reproductive health may be hard to talk about, but it is important that you get answers to your questions, safe from embarrassment. Ideally, your care team will ask you questions and provide information to draw you out. If not, it is important that you choose the person on your care team that you feel most comfortable with, and that you have time to share concerns or ask questions in private.

For teens with CF, puberty is often delayed. This may be due to nutritional challenges, as lower body weight is directly linked to delayed puberty. Boys with CF may find that their friends are growing taller and developing pubic and facial hair before them. It is very common for girls with CF to have their first period later than their peers without CF. Often, girls’ menstrual cycles are irregular.

Many teens with CF have questions about fertility. It is estimated that over 95% of men with CF have CBAVD (Congenital Bilateral Absence of the Vas Deferens).   While sperm is produced, the vas deferens tubes are blocked or absent, and no sperm is ejaculated with the semen. If you are a young man with CF you should not assume that you are infertile (meaning that males are unable to father a child without medical assistance; sterile means: inability to produce children). Until you are tested, you won’t know if you are part of the small percentage of men that have normal vas deferens. If you are part of the majority who have CBAVD, you should know that advances in medical technology have made it possible for men with CF to father biological children.

Young women with CF may have thicker cervical mucus that can inhibit pregnancy, but this should not be assumed. For sexually active teens with CF, birth control should be discussed with your doctor. For both young men and women, protection must be used to prevent sexually transmitted diseases (STDs). For female teens, CF can impact birth control options. For example, certain antibiotics may interfere with the effectiveness of oral contraceptives. It is important that your doctor knows if you are using birth control to ensure there is no negative interaction with your CF medications. As part of the transition process, your care team should give you an opportunity to speak privately, without your parent present.

Beyond reproductive questions, there are other issues that impact teens with CF but which may feel embarrassing to talk about. Many teenage girls with CF suffer with uncomfortable vaginal yeast infections caused by the antibiotics they are taking. This is very common and easily treatable. If you are experiencing this, let your doctor know. Additionally, many teens with CF - primarily girls - experience stress incontinence (put more plainly – wetting one’s pants) due to increased pressure on the bladder from chronic coughing. Many girls use pantyliners when they have an increased cough. There are also exercises that can help reduce these symptoms. If you ask your nurse or doctor (or whoever you feel most comfortable with), they can talk about these with you.

As teenagers, you are transitioning to take more control of your care. Finding a member of your care team to talk about the issues discussed above is key to your personal health.

Sinus culture

Sinus culture obtained during nasal endoscopy is helpful to diagnose sinus infection.  It also serves to determine culture-directed antibiotic treatment, especially in suspicion of resistant organism.  Common organisms in CF sinusitis include Staphylococcus aureus, Pseudomonas aeruginosa, Haemophilus influenza, Burkholderia cepacia, Achromobacter xylosoxidans, and Strenotrophomonas maltophilia.

What are the medical treatments for sinusitis?

Treatment of CF related sinusitis takes on many forms, including antibiotics and anti-inflammatory agents.  Both can be taken either orally or delivered topically via nasal spray, nasal irrigation and a nebulizer.  Obviously, topical agents tend to be more effective in patients whose sinuses are unobstructed; these patients typically have had sinus surgery.  Topical agents may potentially avoid systemic side effects associated with oral medications, and can potentially treat resistant bacteria without intravenous antibiotic use.  Allergy therapy may also be considered simultaneously when appropriate. For treatment to be effective, patients need to develop and stick to a consistent regimen.

When to consider surgery for CF patients with sinusitis?

At the Stanford Sinus Center, maximal medical therapy for sinusitis includes three to six weeks of broad-spectrum culture-directed antibiotics, topical nasal steroid, saline nasal irrigation, allergy therapy if indicated, and two weeks of concurrent oral steroid use in some patients.  Sinus surgery is considered when a patient exhibits the following: persistent sinus and pulmonary symptoms despite maximal medical therapy; evidence of sinus disease on post-maximal medical therapy sinus CT; endoscopic evidence of persistent sinus disease, such as anatomical abnormalities, pus, extensive polyps, etc.  Goals of endoscopic sinus surgery are to enlarge sinus drainage pathways; remove polyps; break the cycle of obstruction leading to chronic sinusitis; and improve lung function [10, 11].  It’s important to understand that sinus surgery is an adjunct, but not a substitute for medical therapy.

The teen years can be tough – whether or not you have cystic fibrosis. Physical, intellectual and emotional changes are happening simultaneously. Your peer group is probably more important than ever, and it is normal to want to fit in, and not stand out as “different.” Having CF, with all its challenges and time-consuming treatments can be a huge burden. If you go through periods of depression, you are not alone. Teens with CF report being depressed for many reasons that you may be familiar with: feeling physically unwell, being frustrated by the challenges of endless daily treatments, experiencing negative side effects from medications, missing major life events (sports, parties, concerts, proms) due to hospitalizations, and feeling different from their peers.

Teens with CF are more prone to anxiety and depression, and a lack of sleep can worsen the situation. Few teenagers achieve the recommended nine hours of sleep each night, and because of the CF, your sleep may be regularly disrupted because of your medications and cough. In addition to putting you at greater risk of infection, the lack of sleep can lead to dramatic mood swings.

Adolescence is a time of experimentation, and this may include many things: new hair colors, body piercings, styles of dress, drug and alcohol use, and sexual activity. Just because you have CF doesn’t mean that you are immune to the pressures of the above experimentation. Unfortunately, the physical and emotional impact of this experimentation can sometimes be much harder for teens with CF.

Sometimes peer pressure is not the issue. Teens with CF have said they use alcohol or drugs to self medicate due to depression and anxiety, and to seek a temporary relief from the challenges of the disease. Depression also contributes to self-harm, namely “cutting,” as well as eating disorders. We know that the higher the level of depression and anxiety, the less likely it is that you’ll adhere to your treatments. It is very common for a negative spiral to begin.

Your parents CF care team and outside support system can help you to find support and develop coping mechanisms. These can include therapy, sports, artistic expression, spirituality and participation in CF-related or other social support networks. The social worker at your center wants you to feel comfortable talking with her. The most important thing is that you reach out to someone, so that you feel less alone and can get the support and resources you need.