Tips for Teens
The information about spina bifida throughout this section is designed for parents of children of all ages with this condition. This practical information is especially relevant for teens and young adults.
Below are a few guides that provide about transitioning to adulthood and adult care:
- Part A: Taking Care of Your Health
- Part B: Leading the Life You Want
- Timeline of Services for Spina Bifida: English | Spanish
If your leg muscles are affected, it may be harder to walk, or it may take more energy. This may mean you can’t walk as far or as fast as someone whose leg muscles all work. As you grow taller, or put on weight, it may be harder to keep up with others or have enough energy to do so. Some people choose to use a wheelchair or scooter for longer distances for this reason.
Maintaining strong arm and leg muscles with a fitness program and keeping weight under control can help maintain walking ability. If you use a wheelchair or other aid, it is important to learn how to keep it in good working order, like a car or bike. Ask your wheelchair vendor to teach you how to maintain it.
Osteoporosis & Fractures
Osteoporosis means the bones are more breakable. People who don’t stand and walk much and have weak leg muscles develop bones that are thinner than normal. This may mean that a very light injury results in a broken bone. The most common place to break the bone is in the thigh above the knee. Fractures may not cause pain for people with spina bifida, and the signs of a broken bone can be just redness or swelling of the leg.
Bones thicken until the mid 30s, then they tend to get thinner over time. Especially while you are young, it’s important to get enough calcium and vitamin D to help maximize bone strength. Talk to a doctor or dietician about whether you need extra calcium and vitamin D. If you can stand or walk, exercise can help you maintain bone strength.
Being overweight is a common health issue for young people with spina bifida. If you have small muscles in your legs, you may need many fewer calories, and have to eat less than someone else your age or size to maintain your weight. Cut back on high-calorie, low- nutrition foods (junk foods); instead eat plenty of fresh fruits and vegetables. It may be helpful to meet with a dietician to find out how many calories you take in, and how to choose healthier, lower calorie foods that still keep you feeling satisfied. With a low-calorie diet, you may want to add a multi-vitamin to stay healthy.
Dining out results in 50% more calories, salt and fat than when making food at home. Learning to cook and eat healthily is a valuable life-long skill. Try planning and making some meals at home on your own, even if there are people at home who usually do this for you. There are several recipe Web sites that focus on low-calorie, low-fat, easy-to-make meals. With regular exercise, you will burn more calories, even at rest, since your muscles will be bigger.
Pressure sores occur when the skin gets pinched between two hard surfaces (like bone and a hard seat) and loses blood supply for too long. You are more prone to get pressure sores if you have other illnesses or infections, or fevers. This occurs in areas of skin where you don’t have normal feeling, so your body doesn’t tell you there is a problem (it doesn’t hurt). Too much wetness and friction on the skin can also cause pressure sores.
Doing regular pressure reliefs every 15 to 20 minutes while sitting is important if you can’t feel your skin. This is especially crucial if you use a wheelchair. Sometimes sores develop where your braces press on your skin. It is important to do a visual scan of your skin and have your braces adjusted by your orthodontist, or brace maker, if you think they are causing pressure. Make it a habit to look at your skin at night and while you are bathing. It is easier to heal a small sore than one that has become deep. If you do have a pressure sore, you may need extra vitamins and protein in your diet to assist healing.
Many people with spina bifida have problems controlling their bowels. With discipline, you can regulate your bowels to move more regularly, which can lessen the chance of “accidents” or incontinence. Certain foods may cause diarrhea. Learn to identify what foods cause this for you, and avoid them. Common culprits include corn, coffee and chocolate.
Having the right amount of fiber in your diet can help. Fiber is in tasty foods such as whole grains, nuts, vegetables and fruit, and popcorn.
Be sure to choose a low-fat version of popcorn (microwave popcorn often has hydrogenated oil) or use an air popper. Drink lots of fluids when you are taking extra fiber.
Another option is the MACE procedure, which creates an opening in the upper colon, allowing an enema to be given from the top of the colon. Many people find this gives them more independence with their bowel routine, and they have less incontinence. Please talk to your urologist for more information on this.
Clean intermittent catheterization is a good way to empty the bladder if the bladder does not empty completely on its own. If you have frequent infections, you may want to review your catheterizing technique with a nurse. Your urologist will suggest regular tests to monitor the health of your kidneys.
If bladder volumes are high, you may need to catheterize more often. When the bladder wall is overstretched, it cannot protect itself from infections as well. If morning catheterization volumes are high or if you have bladder leakage overnight, drink less liquids an hour or two before your nighttime cath.
If you have difficulty catheterizing, the Mitrofanoff procedure can help you become more independent. This procedure creates an opening from the bladder to the belly button (umbilicus or navel), through which you can catheterize. If you want more information, talk to your urologist.
All people with spina bifida are considered latex allergic. Latex allergy can begin at any age, even if you have not had problems with it before. Symptoms may include a rash, sneezing, watery eyes and runny nose, or even severe breathing difficulty. Know what medical supplies, clothing and everyday items contain latex and avoid them.
An Epi Pen may be a good idea to keep with you, especially if you have severe allergic reactions. Talk to your doctor or a nurse about this if you have questions.
Latex-free condoms are available from pharmacists, but you have to ask for them. They are made of polyurethane and do protect against sexually transmitted diseases (STDs). Lambskin condoms do not protect against STDs.
Primary & Preventive Care
Find a primary care doctor that you are comfortable with — someone who can help you with routine issues such as a urinary tract infection or general health concerns. Make sure staff members in the spina bifida program have your primary care doctor’s information so they can receive copies of medical reports.
Regular health check-ups are important for everyone. Women who are sexually active or over 21 years old should have regular gynecological exams. Men and women should have regular exams for preventive health care.
High blood pressure and high cholesterol are common now since many people often eat fast food and processed food. These conditions can lead to heart disease if not treated early. Choose a healthy diet and regular exercise for the best health results.
Regular exercise is important for everyone. For success in sticking to it, find an activity that is affordable, that you can do easily and that you enjoy doing. Decide if you like to work out with a buddy, a group or on your own. Try out different activities in high school like tennis, weightlifting, swimming, aerobics or wheelchair aerobics, basketball, adaptive cycling, skiing, sailing, rock-climbing, yoga and tai chi. Going for a walk or a wheel around your neighborhood or park is also a great way to stay fit. Visit the National Center on Physical Activity and Disability for more information on ways to stay fit and have fun. Or join the Wirtz Sports Center through the Rehabilitation Institute of Chicago by calling 312.238.5002. Your local park districts will have adaptive sports as well.
The benefits of exercise include better strength and endurance, improved mood and coping, less constipation, and an improved immune system. You also decrease the risk of heart disease, cancer and other health problems. You can get your friends and family involved, too.
Depending on what activity you choose, you may have to keep a closer eye on your skin, especially if you wear leg braces (AFOs) or use a wheelchair. Discuss what exercise you’re doing with your doctors.
Education & Work
If you are in high school, you should attend your individual education plan (IEP) meetings. Know what accommodations you need to succeed and ask for them. Discuss your future plans with your teacher, guidance counselor and family.
Summer and part-time jobs, as well as volunteer work, can give you great work experiences that are valuable for your future and add to your resume.
You can grow a lot as a person by meeting various people and spending time with them. Make an effort to make plans to meet with friends and do things you all enjoy. Take the initiative to plan an outing for you and your friends.
One of the best ways to meet people is by pursuing a favorite interest, like a sports club or class, art class, cooking class or joining a special interest group, like a charity. Try to find people who are positive and do positive things. We all can benefit from having a supportive group of friends to lean on and grow with.
Depression is common for people with spina bifida. If you find you feel sad most of the time, have difficulty sleeping, do not have an appetite or an interest in the activities you enjoyed before, talk to your doctor.
Sexuality, Contraception & Fertility
Anyone who is sexually active with a partner must be responsible about pregnancy and sexually transmitted disease. You can talk to your doctor about what contraceptive options are available for protection and are safe for you to use.
Men and women with spina bifida can be parents. Men may need medical assistance to obtain sperm. Pregnancy for women with spina bifida requires some adjustment of catheterizing times and monitoring for pressure sores and shunt function. You should discuss issues around medication usage during pregnancy with your doctors before becoming pregnant.
Folic acid is a vitamin that can reduce the chance of having a baby with spina bifida. If you have spina bifida, you should take 4 mg of folic acid a day. Other women should take 0.4 mg (400 micrograms) of folic acid daily if they are planning to become pregnant. This is most important in the first month after conception, which may be before a period is missed.
Getting older means taking on more responsibility. This means being active in your own care. As you get older, you may not need to come as often for regular check-ups with some of your doctors, but you should contact the staff if you are having problems.
Be prepared for doctors appointments, make a list of questions or problems if any, and take notes if you need to. You should know what surgeries you have had and medication you are taking (names, dose and frequency).
Try talking to the doctors and clinical staff on your own, with your parents watching, and later completely on your own, as you get comfortable doing that.
Be aware of which symptoms you should seek help for, and know who to call for help. You should know what needs to be treated as an emergency (like a shunt problem) and what can be treated by your primary care doctor (like a cold).
Financial Aid & Insurance
If you are covered under a parent’s health insurance plan, find out how long the plan will cover you. Many plans will cover children until age 24 or 25 if they are still full-time students or if they are financially dependent. Your mom or dad’s human resources office can tell you how the health plan works. Talk to a social worker for information about social security benefits, government health insurance plans and plans for people who are working.
Driving & Transportation Resources
There are specialized driver training programs that use hand controls and other adaptations. If you need equipment, a vendor may help. Funding sources are available if you need to drive in order to work. If you need to learn to drive in order to graduate, the school will pay for the specialized training, but you may have to pay for the equipment, such as hand controls.
Local area training programs are available at the Rehabilitation Institute of Chicago, 312.238.1000, and at Marianjoy in Wheaton, 1.800.462.2366.
Other options include local wheelchair accessible city bus and taxi services. Your social worker can give you more information on how to access these services.
Independent Life Skills
To plan independent living, make sure you have learned how to do things like manage money, pay bills, use a bank machine, shop for groceries and household items, make meals, do housekeeping and laundry, and make appointments (doctor or transportation).
Organization is difficult for many people with spina bifida. Using a calendar, appointment book or electronic scheduler can make a big difference.