Juvenile osteoporosis

We understand that you may have a lot of questions when your child is diagnosed with juvenile osteoporosis:

• What is it? 
• Will my child need to be hospitalized?
• How will it affect my child?
• Will it hurt?

We’ve provided some answers to those questions here, and your child’s doctor explain your child’s condition in more detail when you meet.

Who’s at risk

Children at the greatest risk for juvenile osteoporosis include those with an underlying medical condition, like anorexia nervosa, kidney disease, or osteogenesis imperfecta, a genetic disorder that causes fragile bones. Children who don’t get enough calcium, vitamin D, or protein in their diets either as babies or during later years also face a greater risk, as do children who experience sudden and extreme growth spurts.

Will my child be okay?

Juvenile osteoporosis is highly treatable, and may include physical therapy and/or medications to manage the symptoms and potentially increase bone density. The long-term outlook is usually very good. During puberty, children with low bone density usually make up most, if not all, of early childhood bone loss.

Long-term outlook

The long-term outlook for children with juvenile osteoporosis is usually very good. During puberty, children with low bone density usually make up most, if not all, of early childhood bone loss.

While we don’t have long-term data to support our theory that juvenile osteoporosis has no direct link to adult-onset osteoporosis, we do know that most children accrue dramatic levels of bone density during puberty. Post-puberty, bone density levels aren’t exactly normal, but they’re much closer to normal than pre-puberty. Chances are, at least one place on your child’s body will remain abnormal throughout your child’s life—it’s usually the hip or the spine.

Will my other children have juvenile osteoporosis?

It’s possible but rare. IJO appears to be spontaneous—which means it is not genetically linked, and we do not know the cause—but we have identified some genes that are prone to IJO. That said, the siblings of most children we treat are not affected.

I see a lot of medications for osteoporosis advertised on TV. How do I know what’s best for my child?

There are a lot of advertised medications, it’s true. However, most of these medications are not appropriate for children. The safety testing has not been done, so we don’t recommend them.

Will my child be able to play sports?

Even if your child has low bone density, it doesn’t mean he shouldn’t move or participate in sports. In fact, we know that weight-bearing exercise is important in building strong, healthy bones. At Children’s Hospital Boston, your pediatrician will work with an orthopedist and a physical therapist to design a good, safe routine.

That said, there are certain sports that are associated with falls and fractures that are risky for children with low bone density. We’ll talk with you about what your child likes to do, the associated risks and the risk-benefit ratio of participating versus not. Your child will most definitely be able to engage in some physical activity. In the end, it’s your decision.

Will my child need a special diet?

You’ll want to make sure your child is getting enough calcium, vitamin D and protein. Adolescent girls trying to control their weight are often at the highest risk of getting inadequate protein, which can hinder the body’s ability to rebuild bone that has been lost.

Osteoporosis runs in our family. Can I test my child preemptively?

If osteoporosis runs in your family or you have reason to suspect your child might have IJO, you may ask your pediatrician to screen your child. At Children’s, we don’t believe that every child needs a DXA scan unless there’s a reason to believe a child is at risk.

How often should my child receive a DXA scan?

If your child has tested positive for low bone density, she should have a scan at least once every other year. This is enough, since the skeleton changes relatively slowly.

Causes

What causes juvenile osteoporosis?

Most often, juvenile osteoporosis is caused by an underlying medical condition, such as anorexia nervosa or kidney disease. In these cases, we refer to the disease as secondary osteoporosis.

Juvenile osteoporosis can also be related to a genetic disorder, such as osteogenesis imperfecta, a condition present at birth that causes extremely fragile bones.

Sometimes it can be traced to infancy, when many babies don't get enough calcium or vitamin D, a critical vitamin that helps bones absorb calcium. Forty percent of the children we see for juvenile osteoporosis have vitamin D deficiency.

However, sometimes no cause can be found and the disease is categorized as a very rare form of osteoporosis, called idiopathic juvenile osteoporosis (IJO). We don’t know the cause of idiopathic juvenile osteoporosis.

In children, the following causes are thought to play a role in the different forms of osteoporosis:

• underlying medical conditions, including:
  • juvenile arthritis
  • diabetes mellitus
  • osteogenesis imperfecta
  • homocystinuria (a metabolic disorder)
  • hyperthyroidism or overtreatment of hypothyroidism
  • hyperparathyroidism
  • Cushing’s syndrome (a hormonal disorder)
  • malabsorption syndromes (not getting enough nutrition)
  • anorexia nervosa
  • kidney disease

• medications, including:
  • anticonvulsants (used to prevent seizures)
  • corticosteroids
  • immunosuppressive medications

• lifestyle factors, including:
  • excessive inactivity/immobility
  • dietary calcium and vitamin D deficiency
  • excessive exercising leading to amenorrhea (absence of menstrual period)

Symptoms

What are the symptoms of juvenile osteoporosis?

Osteoporosis is often referred to as a "silent" disease, which means that if your child has it, he may not develop any visible signs or symptoms.

However, if your child has idiopathic juvenile osteoporosis, he may develop lower back, hip and foot pain. IJO is also sometimes coupled with physical deformities, including kyphosis (abnormal curvature of the middle part of the spine), sunken chest or a limp. It’s also associated with frequent fractures, because the bones are so weak.

FAQ

Q: What exactly is juvenile osteoporosis?

A: Juvenile osteoporosis is a progressive condition marked my loss of bone density or insufficient bone formation. Bones become weak and more susceptible to fractures.

Q: Is it curable?

A: Juvenile osteoporosis is not curable, though it is highly treatable. Treatments may include physical therapy and/or medications to manage the symptoms and potentially increase bone density.

Q: How will it affect my child’s health?

A: Juvenile osteoporosis occurs during your child’s main bone-building years, and can therefore increase his chances for developing osteoporosis as an adult. If untreated, juvenile osteoporosis may result in more fractures or bone breaks than other kids, but with treatment we hope that your child will not experience any long-term consequences.

Q: Will my child need to be hospitalized?

A: Likely not.  Many of the management option for bone health issues are available in the outpatient setting.  However, children who sustain complex fractures, that require surgical intervention, or who have severe scoliosis requiring orthopaedic rod placement may need to be admitted to a hospital. 

Q: What does bone mineral density mean?

A: Bone mineral density (BMD) refers to the amount of matter per square centimeter of bones. Bone mineral density relates to the bones’ ability to bear weight. Poor bone density can lead to fractures.

Q: How is it evaluated?

A: We evaluate BMD using an imaging test called the DXA (dual energy x-ray absorptiometry) scan. By measuring BMD, it is possible to predict fracture risk.

Q: Does a DXA scan hurt?

A: Getting a DXA scan is a painless, non-invasive procedure. DXA is an open machine—your child will not be enclosed at any time. There are no injections or medications involved, and the procedure takes place in a private, child-friendly room.

Q: How much radiation will I be exposed to when I get my DXA scan?

A: The dose of radiation used in a DXA scan depends on the type and number of scans you are having. However, for all scan types, the dose is very low. Even for multiple scans, the dose is minimal when compared to the amount of natural background radiation the average person living in the United States is exposed to every day.

Q: Will my other children have juvenile osteoporosis?

A: It’s possible but rare. IJO appears to be spontaneous—which means it is not genetically linked, and we do not know the cause—but we have indentified some genes that are prone to IJO. That said, the siblings of most children we treat are not affected.

Q: I see a lot of medications for osteoporosis advertised on TV. How do I know what’s best for my child?

A: There are a lot of medications now advertised on TV. However, most of the medications you see advertised are not appropriate for children. The safety testing has not been done.

Q: Will my child be able to play sports?

A: Even if your child has low bone density, it doesn’t mean he shouldn’t move or participate in sports. In fact, we know that weight-bearing exercise is important in building strong, healthy bones. At Children’s, your pediatrician will work with an orthopedist and a physical therapist to design a good, safe routine.

That said, there are certain sports that are associated with falls and fractures that are risky for children with low bone density. We’ll talk with you about what your child likes to do, the associated risks and the risk-benefit ratio of participating versus not. Your child will most definitely be able to engage in some physical activity. In the end, it’s your decision.

Q: Will my child need a special diet?

A: You’ll want to make sure your child is getting enough calcium, vitamin D and protein. Adolescent girls trying to control their weight are often at the highest risk of getting inadequate protein, which can hinder the body’s ability to rebuild bone that has been lost.

Q: Osteoporosis runs in our family. Can I test my child preemptively?

A: If osteoporosis runs in your family or you have reason to suspect your child might have IJO, you may ask your pediatrician to screen your child. At Children’s, we don’t believe that every child needs a DXA scan unless there’s a reason to believe a child is at risk.

Q: How often should my child receive a DXA scan?

A: If your child has tested positive for low bone density, she should have a scan at least once every other year. This is enough, since the skeleton changes relatively slowly.

Q: Will my child with develop adult osteoporosis?

A: While we don’t have long-term data to support our theory that juvenile osteoporosis has no direct link to adult-onset osteoporosis, we do know that most children accrue dramatic levels of bone density during puberty. Post-puberty, bone density levels aren’t exactly normal, but they’re much closer to normal than pre-puberty. Chances are, at least one place on your child’s body will remain abnormal throughout your child’s life—it’s usually the hip or the spine.

Questions to ask your doctor

You and your family play an essential role in your child’s treatment. It’s important that you share your observations and ideas with your child’s treating physician, and that you have all the information you need to fully understand the treatment team’s explanations and recommendations.

You’ve probably thought of many questions to ask about your child’s juvenile osteoporosis. It’s often very helpful to jot down your thoughts and questions ahead of time and bring them with you, along with a notebook, to your child’s appointment. That way, you will have all of your questions in front of you when you meet with your child’s treating clinician and can make notes to take home with you. (If your child is old enough, you can encourage him or her to write down questions, too.)
 
Initial questions to ask your doctor might include:

• How did you arrive at this diagnosis?
• Are there any other conditions my child might have instead?
• Does my child require further testing or procedures?
• How advanced is it?
• What activities should/shouldn’t my child participate in?
• Should my child’s diet change?
• How should I talk to my child about this condition?
• Does my child have an eating disorder?
• Will my child risk breaking bones if she plays sports?
• How can I tell if my child’s osteoporosis is getting better or worse?
• How much Vitamin D and calcium should my child have per day?
• Will my child develop adult osteoporosis?

Glossary of terms

Terms that you may encounter when coping with your child’s juvenile osteoporosis include:

Body composition: When you get on a scale, your weight in pounds represents your total body mass. Body composition, on the other hand, divides your weight into lean mass, fat mass, and water. It’s a more accurate determinate of how healthy and fit you are.

Bone density: The ratio of bone mass to volume, indicating bone compactness. Bone density increases rapidly through adolescence, more slowly until age 35, and then plateaus and declines. Bone density is measured most frequently in the spine, hip, wrist, forearm and/or heel for the detection and diagnosis of osteoporosis.

Bone mass: The amount of mineral in a bone. Although this is different from bone density, the terms are often used interchangeably.

Bone mineral density (BMD): The quantity calculated by dividing the measured bone mineral content by the measured bone area in a densitometry study. Bone mineral density relates to the bones’ ability to bear weight. Poor bone density can lead to fractures.

DXA: We evaluate bone mineral density using an imaging test called the DXA (dual energy x-ray absorptiometry) scan, which uses x-rays to measure bone density. It’s a painless, non-invasive procedure (no injections or medications) that takes place in a non-enclosed machine. DXA uses two different photon energies, or x-ray beams, to measure soft tissue and bone. By measuring BMD, it is possible to predict fracture risk.

Osteopenia: This term refers to a decrease in bone density that, although too low to be called normal, is not low enough to be considered osteoporotic.

Osteoporosis: A condition that weakens bones and makes them more susceptible to break. This may be due to loss of bone density from increased bone resorption (or breakdown) or insufficient bone formation. The disease is much more common in older adults, especially women in menopause and after, but can also affect children and teenagers.

Peak bone mass: A concept that bone mass has a maximal level given optimal conditions. Peak bone mass is believed to be controlled by genetic factors (age, sex and body size) and significantly impacted by environmental factors (nutrition, exercise and general health). The concept of peak bone mass is important to the study of bone disease in that if an individual achieves maximal (peak) bone mass, she may reduce the risk of serious bone loss.

For teens

Having juvenile osteoporosis as a teenager can seem especially tough. You’re heading into a very important time at school, with decisions to be made about college and your future. Your body is already going through a lot of changes. You may be dealing with dating, peer pressure, learning how to drive -- add the day-to-day challenges of a chronic illness like juvenile osteoporosis, and it can be a lot to handle!

It helps to remember that most teens with juvenile osteoporosis do the same stuff as other teens, like going to school, doing chores and hanging out with their friends. Plus, you’ll have a lot of backup: Doctors, counselors, physical therapists and other members of your treatment team are all there to support you.

Take charge of your health: As you get older, you’ll be taking on more responsibility for managing your juvenile osteoporosis -- keeping up with medications, sticking to an exercise routine, eating a healthy diet. Though it may seem overwhelming at first, you may find that you feel more in control of your disease, not the other way around.

Find smart strategies for school: Having juvenile osteoporosis may make it difficult to get up and around, so give yourself extra time to get to school and to change classes. Be sure to wear the appropriate protective gear when you play team sports. And no matter how busy you are, be sure to eat three balanced meals a day. These and other coping tricks can take some of the stress out of juggling your illness and your education. Plus, you may be eligible for something called a 504 plan, which lays out what kinds of support you need from teachers and school administrators -- like providing an extra set of textbooks, so you don’t have to lug a heavy backpack between home and school.

Don’t hide how you feel: Some days you’re just going to feel angry or depressed about having juvenile osteoporosis. That’s normal, and being able to talk to your friends or family can help you through the rough patches. But – especially if these feelings don’t go away -- you may also want to talk with a counselor or therapist. A positive mental outlook is just as important as exercise and a healthy diet in managing juvenile osteoporosis.

Talk to someone who’s been there: Connecting with other teens with juvenile osteoporosis is a great way to not only make new friends, but also to pick up tips and strategies for dealing with your condition. Ask your doctor if you might be able to meet up with another patient your age.