Learning About Cerebral Palsy in Teens

Cerebral palsy (CP) is the name for a group of nerve problems that make it hard for a person to control movement. It's caused by injury to the brain. In most cases, this injury happens before birth.

CP is a lifelong condition that needs to be managed. The brain injury that caused CP does not get worse over time. But problems from CP can appear, change, or increase as your child ages.

How your teen is affected as they age depends on the type of CP they have. It also depends on how severe it is. Some teens with CP will be able to live on their own as adults. Others may need lifelong care from their parents or other caregivers.

The symptoms of CP may change or get worse as your child gets older. Symptoms can range from mild to severe. And they may be different for each teen.

A teen may have:

• Problems with body movement and posture.
• Weak muscles in their face, tongue, arms, legs, hands, or feet.
• A limp or a hard time walking.
• Little or no control over their arms and legs or other parts of their body, such as the mouth and tongue. This may cause problems with eating and speaking.

CP can put extra stress and strain on your teen’s body. You may need to watch for some problems. These can include:

• Worsening issues with your teen’s muscles, bones, joints, tendons, and ligaments.
• Early muscle loss.
• More trouble moving around and doing daily activities.
• Problems with sensations. Some teens with CP feel pain even when lightly touched. Even everyday activities may hurt, like brushing teeth. This can lead to dental problems.
• Skin problems caused by moisture. Weakness in the face and throat muscles can cause drooling, which can bother the skin around the mouth, chin, and chest.
• Tiredness (fatigue) and pain that get worse over time. This may include hip pain, muscle pain, and joint pain.
• A higher risk of falls and of being injured from falls and other accidents.

Teens with CP may be more likely to develop other health problems as they get older. They might have bladder and bowel issues, like constipation. They may have a harder time eating and swallowing. This can cause choking, changes in their appetite, and problems getting the nutrients they need to stay healthy.

Teens with CP may have problems with their vision or hearing. And they may have trouble sleeping. Some teens with CP have spinal curves (scoliosis). If this curve is severe, it can cause pain and make it hard to breathe. Teens with CP may also have problems with how their bones develop. Other problems include seizures and intellectual disabilities. But these are more likely in teens who have severe forms of CP.

Teens with CP may also be at a higher risk for certain health conditions, such as:

• Mental health conditions, like anxiety and depression.
• Lung disease, such as pneumonia and asthma.
• Autism spectrum disorder.

Treatment for CP depends on your teen’s symptoms, goals, and other health conditions. Work with your teen's doctor to find the treatment options that are best for your teen.

Treatment for CP may include:

• Physical therapy.
• Regular doctor visits to check for changes in your teen’s health.
• Referrals to medical specialists. These could include an orthopedic surgeon, a urologist, a gastroenterologist, and a physical medicine and rehabilitation doctor (physiatrist).
• Pain management. This can help with short- and long-term pain.
• Medicines. These can help with symptoms of CP and problems caused by CP. Medicines can also treat other health conditions related to CP.
• Assistive devices. These are tools that can help make daily activities easier for your teen. You may also hear them called adaptive equipment. For example, some teens with CP use walkers or wheelchairs. Electronic assistive technology may also be useful, like speech boards, hearing aids, and tablets.
• Treatment for other health conditions, like pneumonia.
• Referrals for other types of treatment. This may include occupational therapy, speech and language therapy, and massage therapy. Your teen may also benefit from mental health services, learning disability services, and nutritional counseling from a registered dietitian.
• Surgery. For example, your teen may have orthopedic surgery to treat tight muscles.
• Screening tests to look for a certain disease or condition. These might include screenings for bone health, mental health conditions, problems with eating, and pain.

Here are some ways to help care for your teen who has CP.

• Take your teen to regular doctor visits. If you can, find a doctor who knows a lot about CP. Be sure your teen gets any tests the doctor recommends, like a bone scan.
• Contact the doctor if you think your teen is having a problem with a medicine. You will get more details on the specific medicines your doctor prescribes.
• Ask the doctor about treatments that can help with symptoms of CP, like physical therapy. Physical therapy can help keep your teen moving the best they can.
• Work with your teen’s doctor to build a care team.
• Help your teen get regular movement. Your teen’s doctor can help create an activity plan. Talk to the doctor before your teen starts a new exercise program. Your teen could:
  • Take part in sports. Look for school or community sports that are accessible to your teen.
  • Exercise at home. Try using online programs and videos, like the ones from the National Center on Health, Physical Activity and Disability. Go online to www.nchpad.org to learn more.
• Have your teen brush their teeth 2 times a day and floss once a day. Ask their dentist about special toothbrushes, if needed. Take your teen to regular dental checkups. You may want to find a dentist who works with people with CP.
• Encourage your teen to choose healthy foods, including fruits, vegetables, whole grains, lean protein, and dairy. If your teen has trouble eating, drinking, or swallowing, tell the doctor. The doctor may refer your teen to a speech therapist or a dietitian.
• Make your home as safe as possible to prevent falls. Store items within easy reach. Keep walking paths clear by removing throw rugs. Install handrails on stairways and grab bars on the shower or tub, if needed. Ask your teen’s doctor for more tips.
• Talk to your teen’s doctor about assistive devices. Your teen may outgrow some devices or need new devices, like special crutches, walkers, or wheelchairs.
• Help your teen take care of their mental health:
  • Find a counselor who has a background in working with teens with CP. Your teen’s doctor can give you referrals.
  • Help your teen find ways to be active and do things they enjoy.
  • Encourage your teen to spend time with close friends and family.
  • Give your teen plenty of emotional support and understanding.
• Help your teen get good sleep. Teens need about 7 to 9 hours of sleep each night. Remind your teen to go to bed at the same time every night and wake up at the same time every morning. And have them turn off screens, like their smartphone, before bed.
• Talk to your teen about intimate relationships. Teens and young adults with CP may need special guidance in developing these relationships.
• Make sure your teen has the support they need at school. Work with their teachers. Learn about your teen's educational rights. They may have access to free public school services, including vocational training for teens.
• Gradually prepare your teen for independent living:
  • Start talking to your teen about their plans and goals as young adults. Some teens may move out after they turn 18. Others may continue to live at home.
  • Teach your teen skills such as preparing meals, managing money, and using public transportation.
  • Help your teen with changes in medical care when they turn 18. They may need help finding a new primary care doctor and changing their insurance. Some teens may need help finding a caregiver.
  • Talk to other parents of young adults with CP who are living independently. They may have tips that can help.
  • Find out about local programs that help young adults with CP live independently. You could look online or ask your teen’s doctor.
  • Visit group homes in your community that are for young adults with disabilities.