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Tips for parents of teen or preteen kids

Setting up a routine that works

How do you find a GH therapy routine that you can live with—and stick to—day by day? Some thoughts:

• With your doctor, pick a time that works for you every day. Many people choose bedtime, but if work schedules or tiredness makes bedtime touch and go, find another time of day that works better. Consistency is what counts!
• Hitch your injection routine to another routine that is well-established—something you never forget to do, such as brushing your teeth (morning or night), washing the dishes after dinner, or reading before bed
• Give injections at a certain set time and in the same room
• If your child isn’t ready to handle the injections alone, have him or her do as much as possible (open the alcohol wipes, for instance, or set up the injection) to create involvement in the routine. An older child could help more—and even give the injection
• Keep in mind that your child has a limited window for growth, and that missed doses have consequences and may never be “made up” (your healthcare professional can explain why)
• Measure the child at home on a wall, marking when they started GH therapy
• Stay on therapy when you travel.
• Consider a “cooler” bag for the trip, and call ahead to make sure the hotel can help with refrigeration during your stay.
• To avoid creating a gap in your child’s therapy, use the online prescription refill reminder. After all your hard work getting a routine down cold, you don’t want to be at the mercy of a missed shipment!

Becoming familiar with daily injections

You might want to add to your list of short-term goals becoming very comfortable administering your child’s therapy. This is both an important goal and one that is achievable for most people with proper training and support.

If injection training is still ahead of you…

• You will get a call to schedule your training session
• Prepare a list of questions—and don’t be afraid to ask them!
• Make sure everyone who will be responsible for giving injections gets trained

If injection training is behind you…

• Don’t worry if you’re still feeling a little nervous—sooner or later, giving your child injections may become part of your routine
• If you aren’t sure you’re doing it right, call your nurse and ask! Just keep asking until you feel comfortable
• Remember that you can get your therapy questions answered live by calling the Nurse Hotline at 1-866-NUTROPIN (1-866-688-7674)
• Finally, always follow your doctor’s directions and only give your child the dose he or she has been prescribed

Checking the roadmap

While every child’s therapy journey is a little different, it may help to know some of the common steps, so you’ll know what you might expect.

The fact is, you and your child have already taken some of the most challenging steps—getting diagnosed and put on therapy. So take a moment to note how far you’ve come and to see what may be ahead:

Find Your Path

Step 1: Okay: what’s going on?
Step 2: What does the doctor think?
Step 3: Seeing a specialist and getting tested

Start Your Journey

Step 4: Getting your prescription
Step 5: Getting your insurance company on board
Step 6: Learning to deal with the dose

Aim for Growth

Step 7: Doing it day by day
Step 8: Keeping up with your insurance company
Step 9: Tracking and moving ahead
Step 10: Your journey ends

Growth Expectations: Keep it real

You and your child have already taken some of the most challenging steps—getting diagnosed and put on therapy by your doctor. So take a moment to note how far you’ve come and to see what may be ahead:

Here are more ways you can help:

• Remind your teen that it’s important to take Nutropin as your doctor has prescribed
• Gently offer to help your child with treatment reminders or injections if he seems to need (or want) it
• Talk to your physician to determine realistic expectations for therapy, then share them with your child. Remind your child that being short can have its advantages, and being tall is no guarantee of future happiness or success

Focus on your teen’s inner stature, too. The ultimate goal, after all, is to raise kids who feel good about themselves regardless of what the media tells them...who may realize their full potential regardless of their final height...who know—in their bones—that the true measure of a person has nothing to do with size.

Talking to your teen about GOALS

With GH therapy, you’re in for the long haul. You both know where you’re going, of course—your teen is aiming to reach his or her full growth potential, and you’re there to help. But that could take years. So how do you both get to that BIG goal?

The trick is to focus on the little goals along the way. Step by step, inch by inch, you move ahead—and that’s not just a well-worn truth. Successful GH therapy really does depend on the things you do each day: sticking to a routine. Staying current with your prescription and getting your refill on time, so there’s never a gap in therapy. Checking in with the doctor as planned. Keep on keeping on, day after day.

Some practical suggestions for staying motivated, setting goals, and celebrating successes, small and large:

“What’s my motivation?”

When you need to take an injection every day over many years, motivation is the one thing you can’t do without. Because GH therapy happens day by day, that’s when the motivation has to be there—not just on special occasions!

You know how it works: on a good day, it’s easy. Your teen wants to grow; it makes perfect sense to stick to the routine. But the next day might be a little more difficult: one of those days with too much going on.

So how do you help your teen get through the challenging days—or weeks—and keep GH therapy on track and moving ahead?

• Set a positive tone
• Day after day, you’re making progress—sometimes it’s obvious, sometimes it isn’t, but it’s always there
• Every inch you gain on GH therapy is something you’ve earned and get to keep!
• Come up with an incentive program! It might be as ambitious as saving toward a coveted item or a big trip, or as simple as a “rewards program” that puts gold stars on a calendar
• Set little and big goals that make daily treatment feel worthwhile—and make progress feel real
• Do what you can to reward the steady effort
• Once in a while, it doesn’t hurt to remind yourself and your teen why you’re doing it—and how close you already are to the next goal
• Pick some immediate personal goals—and celebrate the milestones along the way!

Setting (and resetting) goals

Different things motivate different people. For some teens, thinking about how tall they may become is all the motivation they need. For others, it’s all about the next thing they want to do—the snowboarding trip, starting a band, getting a summer job.

Build on that excitement. Sometimes the best way to get to the big goal is to set a few smaller goals. Some highly inspiring goals may already be within reach:

Over the Horizon:

Reaching your adult height

A Lot Closer:

Being comfortable with who you are TODAY

Over the Horizon:

Having your height become less of an issue

A Lot Closer:

Not being treated as if you’re younger than you are

Over the Horizon:

Moving up to an adult clothing size

A Lot Closer:

Shopping OUTSIDE of the kids’ section

Over the Horizon:

Leading your group

A Lot Closer:

Keeping up with your friends

Over the Horizon:

Finishing GH therapy

A Lot Closer:

Taking control of your GH therapy and giving your own injections

Results of GH therapy are individual. If you or your teen have questions about his or her treatment with Nutropin, ask your doctor.

Brainstorming goals together can be fun

• Start small, with a goal you’ve already almost reached
• Don’t let the process get you down! Turn challenges into solutions—and solutions into goals
• Don’t set yourself up for disappointment—when you brainstorm, cast your net wide, but then ask your nurse or doctor to do a “reality check” on your goals

Results of GH therapy are individual. If you or your teen have questions about his or her treatment with Nutropin, ask your doctor.

Celebrating success

Be sure to recognize—and celebrate—success!

• When you make it, celebrate!—then set a new goal
• Reward, or at least acknowledge, progress
• A growth chart can give you a good general idea of how well your teen is doing, especially over time—but it’s no substitute for the measuring and weighing at the doctor’s office
  • If you use a growth chart at home, measure once a month—it’s easier to see progress month-by-month than minute-by-minute!

Finally...remind your teen that, with GH therapy, the success will be his or hers to keep!

Growth & healthy living

Talking to any “tween” about the importance of a healthy lifestyle can be an exercise in frustration. As the parent of a child taking growth hormone (GH), though, it’s a conversation you don’t want to skip.

A balanced diet with adequate amounts of calories and protein is an essential component of growth, according to the Human Growth Foundation. And as important as good nutrition, regular exercise, and enough sleep are to people in general, they are especially important to preteens entering their fast-growth years.

These thoughts may help you and your preteen have a good talk about healthy living and GH therapy:

Good nutrition: Resisting the fast-food trap

As parents, it sometimes seems that our kids are attracted to sugar and fatty foods like moths to a flame. And as preteens test out their independence, it’s tempting to let their food choices go unchallenged. Yet if tweens are to make good choices for themselves in the future, they need to understand the connection between what they put in their bodies and their health and growth...now.

Make a difference where you can. Each time your kid flings open the refrigerator to stare deeply at its contents, make sure that lots of low-fat dairy products, whole grains, and fresh fruit and vegetables stare back.

Regular exercise: One (important) part of a healthy lifestyle

Would your kid rather belly up to a computer keyboard than take the skateboard for a spin? Team up with your tween and pediatrician to find physical activities that are both appropriate for your child and enjoyable to her or him.

Talk up exercise’s hidden benefits. Exercise is critical to bone health, say the experts at the National Institutes of Health. It also releases endorphins, brain compounds that enhance feelings of well-being. And exercise can boost energy, reduce stress, and help improve your child’s body image. Finally, regular exercise may help your tween get a better night’s sleep.

Enough sleep: Many kids aren’t getting it

Is your once early-rising kid suddenly sleeping in on weekends? He or she may be trying to make up for lost sleep. Unfortunately, as little as 5 days of losing 1 to 2 hours of sleep a night can reset the body’s clock, making chronic sleep deprivation more likely. A problem, given that sleep is essential to the body’s repair and to good health in general.

Reduce stimulation right before bed. Caffeinated drinks and electronics (computer, TV, DVD, you name it) can rob kids of sleep. Consider banning these sleep-stealers near bedtime, or at least make your child aware of their effects. You may sleep better either way, knowing you made the effort.

More ways you can help:

• Remind your child that GH therapy is no substitute for healthy living—the two go hand in hand
• Tell your kid that each good lifestyle choice makes other good choices easier: regular exercise promotes sensible eating, which promotes better sleep habits in turn
• Let your child know that—just like GH therapy itself—exercise is an investment that can pay off for many years to come

Dealing with setbacks

Rule #1: Expect them!

Progress rarely proceeds in an unbroken line, and your teen’s handling of therapy will be no exception. Resist the temptation to criticize your child for any lapses, and expect him or her to be eager and motivated at the beginning, less motivated as the novelty wears off. Fortunately, as former track star Jim Ryun once said, “Motivation is what gets you started. Habit is what keeps you going.”

Good habits take on a life of their own. Encourage your child to administer therapy at the same time every day (bedtime often works) along with something he never fails to do (such as brushing his teeth). Urge your kid to record each dose. Suggest he use his cell phone or an alarm clock to program therapy reminders.

Here are more ways you can help:

• Watch for signals that your teen needs (or wants) your help with therapy and act on them, making it clear that he or she hasn’t failed and can always try again. And be sure to acknowledge, if not celebrate, success!
• Print out the instructions for use and tack them up where your teen can refer to them easily. Post the Nurse Hotline number—1-866-NUTROPIN (1-866-688-7674)—for your own easy reference and use
• Make sure your child understands the relationship between taking Nutropin therapy exactly as directed and progress toward his or her growth goals

Finally...RELAX! The more confident you are about your child’s new responsibilities, the more successful he or she is apt to be.

Talking to your teen about taking responsibility for therapy

“Is he ready? Am I?”

The way we approach any new responsibility—with confidence, with dread, or with something in between—can affect our chances of success. That applies equally to growth hormone (GH) therapy, for both you and your teen.

How do you confidently prepare your child to take over more—or all—of the responsibility for Nutropin therapy? Below are some practical suggestions for easing the transition, gauging your kid’s readiness, and dealing with any setbacks.

Easing the transition: Preparation equals relaxation (for both of you)

If you’ve gradually increased your child’s therapy responsibilities over time—bravo! Many parents find it helps to reduce daily therapy to a series of manageable steps (washing hands, setting out materials, checking the solution, cleaning the cartridge seal or stopper, and so on) and to have kids master one or two steps before they move on to the next.

It’s never too late to start. But what if your child has been a passive observer all this time? Don’t worry; chances are, he knows a lot more about his daily therapy than you realize. Still, review the entire process with him—from hand washing to storage of unused solution—as if it were the first time, and as often as necessary. (And be prepared for the inevitable “No, duh, Mom!”)

Assessing your child’s readiness: Age is only one gauge

Age is a good, if imperfect, gauge of kids’ maturity. Likewise, how your teen handles one situation (say, homework or household chores) is a good, if partial, indicator of her readiness to take responsibility for therapy. The good news: you know your child better than anyone, so don’t be afraid to trust your gut.

In addition, “yes” answers to the following “preflight” checklist may help you decide if your kid is ready to fly solo:

• Does your child do well with routines?
• Was she involved in the decision to start treatment? Is she on board with, and does she understand, the importance of GH therapy?
• Is your child generally careful with valuables, from library books to cell phones to other medications he may be taking?
• Do you have a generally open and positive relationship with your child? Would she tell you if she were missing doses of Nutropin?
• Is your teenager asking to take on more, or all, of the responsibility for therapy?

How and when to talk about therapy

“Should GH therapy be a ‘secret’?”

This is the information age, but it’s also the “too-much-information” age. On the one hand, we live in a “tell-all” society where it can seem like no detail is too personal to share. On the other, we struggle to hold onto our privacy—and keep things off of Facebook that we might later regret!

Below are some practical suggestions to help you and your child sort out “the things that everyone should know” from what’s really personal and private. You’ll find ideas on talking about therapy and about telling your friends. You’ll also find checklists that can help you decide what’s “TMI” (Too Much Information) and when it’s “TTS” (Time to Share).

Talking about therapy

Privacy isn’t about being secretive. It’s about drawing a line between the things you keep to yourself and the things you tell other people. Some people—doctors, nurses, teachers, and, of course, parents—have a “need to know” about your therapy. Beyond that, it’s all about you. You get to decide how much information you want to share. Here are a few ideas that may help you decide.

Some people need to know, some people only want to know. Ask yourself whether someone just wants to know about your therapy, or really needs to know. People who may need to know include:

• Your doctors, nurses, and teachers
• Parents or other family members

Anyone not in this group may want to know more about you, but if they don’t need to know, you don’t have to tell them. (If you have any doubts, ask a parent! And remember: there are polite ways to say “No.”)

What you tell your friends is up to you. Being open, having great friendships, and taking care to protect your privacy don’t have to be at odds. Friendships are built on sharing—but how much sharing you do about any medical treatment is always up to you. We all know the feeling of getting or giving out “TMI”—Too Much Information—and that isn’t a good feeling!

Everyone has a different comfort zone. Sometimes people may want to know more about you than you are comfortable giving out. Trust that uncomfortable feeling. You are the best judge of what you want to keep private! Remember: once you “put it out there,” you can’t take it back.

Checklist: How You Know It’s TMI (Too Much Information)

Here are some ways to tell:

• Is the information on the “private” side of the line?
• Do you feel uncomfortable giving the information out? Would your parents feel uncomfortable about it?
• Does the person asking have a right to ask or a need to know?
• Is the person who is asking a good friend, or just an acquaintance?
• Are you sure the person asking is reliable, someone you can trust, and “on your side”?
• Are you feeling pressured into giving out information you aren’t ready to give out (or don’t want to give out, ever)?
• Did you start out in your “comfort zone” but find yourself beginning to “overshare”?

If you aren’t sure about what your “boundaries” should be, ask a parent or an adult you trust for advice.

“What if I want to tell my friends?”

If you’re ready to talk about your therapy with a close friend, or even your friends as a group, that’s great! It means you’re comfortable with yourself, and see talking about your treatment as no big deal.

Here are few things you might want to think about:

• Don’t sound apologetic. Why should you? Your therapy is just another part of your life. Make it a strength that you don’t feel the need to make a big deal of and can shrug off if others try to
• If you tell one friend, you may be telling them all. There’s always a temptation to gossip. If you put your personal information out there, you can’t get it back, so always be sure you’re prepared to deal with it
• Sometimes friends move on. Friendships come and go; today’s “BFF” may be tomorrow’s “frenemy”
• It’s only a big deal if you let it be. Anyone who wants to tease you about anything is doing it to get a reaction. If you can keep your reaction low-key—easier said than done, sometimes—the teasing may fall flat

Checklist: How You Know It’s TTS (Time to Share)

Thinking about sharing? Ask yourself these questions first:

• Are you spending a lot of energy keeping your therapy to yourself?
• Have you been sensitive about your therapy in the past, but now feel like talking about it would be no big deal?
• Is the person you’re thinking of telling a friend?
• Would it bother you if a friend you told went and told another friend you don’t know as well? (This kind of thing does happen)
• Would it bother you if everyone knew? More than the effort it would take to keep your therapy private?
• Do you have a clear idea about how to talk about it? (If not, practice with a family member)
• If you aren’t comfortable, aren’t sure what to say, or just aren’t ready, don’t hesitate to get advice from a parent or an adult you trust. For questions about your therapy, you can always Call the Nurse Hotline at 1-866-NUTROPIN (1-866-688-7674)

Keep up with your insurance

While they may differ in timing, most insurance providers require regular doctor reports to keep your prescription coming. Some insurance companies require them at 3 months, others at 6, still others at different times.

What they all want to know:

• Is therapy working? The usual spurts and slow-downs in your child’s growth notwithstanding, is progress being made? Is it reasonable to think that further treatment may result in further, significant growth?
• Is therapy still needed? Are there factors, such as the “fusing” of the bone plates, which would dictate the end of therapy? On the flip side, are there other (rare) factors that make it advisable to continue past that point?

In most cases your healthcare professional or your specialty pharmacy will get in touch with you when it’s time to reauthorize. Please work with your doctor’s office to be sure you complete the necessary paperwork ahead of time to prevent any gaps in your child’s therapy.

For help with any questions, call 1-866-NUTROPIN (1-866-688-7674) and speak live with one of our case managers or visit NutropinGPS.com.

Keeping up with your insurance provider not only helps the GH therapy reauthorization process go smoothly, it may help you avoid gaps in treatment. Think of it as another way to make sure your child gets his or her dose on time-every time.

“How long can I expect therapy to last?”

The quick answer is that there is no single answer. The length of your child’s therapy may depend on a number of factors, including:

• Your child’s chronological age at the beginning of therapy
• His or her bone age
• How well therapy is progressing
• Your doctor’s determination of when your child’s therapy is complete

For most children and young adults, this will be when the epiphyses—the growing ends of the bones—fuse. (For more growth-related terms, see the glossary.) Some people may still need GH after their bones have stopped growing to help ensure healthy bodily function.

Physical factors aren’t the only ones driving length of therapy, though. As with any long-term therapy, the commitment of all key players is critical. There are a number of elements that may make commitment difficult, especially during the teen years. So as you and your child move forward, here are a couple of thoughts to tuck away for those times when continuing therapy may seem too challenging, or the long-term benefits of therapy too remote:

• While your child’s therapy may appear long, the actual window for growth is limited. Once it closes, your child cannot grow any taller
• Each inch gained on therapy is something your child has earned and gets to keep—long after growth charts, devices, and injection rotation have become just memories

Finally, remember: in therapy, as in life, it pays to keep reaching higher!

When it’s time to share

At some point, you may be comfortable enough with your routine and GH in general to consider sharing the news of your child’s therapy with some people outside your immediate circle.

Before you do, it may be a good idea to have a family sit-down to determine everyone’s comfort zone, especially that of your child on therapy. And be ready for possible misperceptions—including the belief that GH and steroids are the same. This is particularly true given the controversy over the abuse of these substances.

So how do you manage the downside risk of sharing this important part of your lives?

1. Start by educating your child first and foremost. Your healthcare professional can help you explain the difference between abuse and medical use in terms your child can understand. No one’s understanding is more important!
2. Be proactive. Make sure anyone you decide to tell about your child’s therapy gets the whole story: namely, that your doctor has determined that GH is medically necessary to help your child reach his or her growth potential.
3. Be selective. Does your great-aunt Betty really need to know that your child has been prescribed growth hormone? She may, if she has a role in your child’s care, lives with you, or is especially close to you or your child. If not, feel free simply to smile when she remarks about your child’s growth.

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Tips for adults

Keeping up with your treatment routine

Adults who take Nutropin may experience changes that are very gradual, occurring over a number of months. Some changes—such as changes in cholesterol levels—may not even be visible at all, but your doctor can measure them.

Remember that you’re taking Nutropin because you’re trying to achieve a certain outcome in the future. Regular daily injections may increase the likelihood of a positive outcome. It may be a lifelong commitment, but it’s worth it.

• Give injections at a certain set time
• Keep the benefits of therapy—which may vary—in mind, including possible changes in:
  • Lean body mass
  • Average total body fat
  • Cholesterol ratio
  • Spine bone mineral density (in childhood-onset adult GHD patients)
• Use a cell phone—many now have alarm functions and even built-in calendars that can provide injection reminders
• Ask your doctor what to do if an injection is missed
• Maintain regular appointments with your healthcare team so that they can monitor your response to therapy
• Stay on therapy when you travel
• Consider a “cooler” bag for the trip, and call ahead to make sure the hotel can help with refrigeration during your stay
• Call your airline and ask what is required by the current security protocols. At airport and other security checkpoints, you may need to carry a note from your doctor’s office

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IMPORTANT SAFETY INFORMATION

Nutropin and your safety:
Please read this important safety information carefully. Then, if you have any questions, talk with your doctor.

Nutropin is NOT for:

• Children and teenagers whose bones have finished growing
• Patients who have certain types of eye disease caused by diabetes
• Patients who have active cancer or any brain tumors
• Patients who are critically ill after open heart surgery or abdominal (stomach) surgery, are severely hurt, or have severe breathing problems
• Children and teenagers who have Prader-Willi syndrome and are very overweight or have trouble breathing
• Patients with a known sensitivity to benzyl alcohol, an ingredient in the liquid used to mix Nutropin Injection. Sterile water should be used when mixing Nutropin for newborns.

If any of these apply, talk to your doctor before you start taking Nutropin.

If you are about to start taking Nutropin, or are already taking it, be sure to tell the doctor who prescribed it:

• About ALL of the medications you are taking, including supplements
• If you have or develop a brain tumor
• If you are given any new medication, especially glucocorticoid steroids like hydrocortisone or prednisone
• If you are pregnant or if you become pregnant
• About ANY other condition or illness you have or develop

What are the possible side effects of Nutropin?
You may experience discomfort, soreness, or redness where Nutropin is injected.

Contact your doctor immediately if you experience:

• Ongoing injection site discomfort
• Curvature of the spine (scoliosis)
• Joint pain
• Puffy hands and/or feet (caused by fluid retention)
• Changes in vision, a bad headache, or nausea with or without vomiting
• Hip or knee pain
• A need to limp when you walk
• Pain in wrist (carpal tunnel)
• Allergic reaction

Be sure to inject Nutropin at a different recommended place on your body each time. Your doctor or nurse should supervise the first injection and provide training and instruction.

Your doctor is your primary source of information about your treatment.

Please see the full Prescribing Information for Nutropin and Nutropin AQ, available from your pharmacy and at www.nutropin.com, for more about Nutropin and safety.

Questions? Call the Nurse Hotline at 1-866-NUTROPIN (1-866-688-7674).

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