Spina bifida information for teens and young adults
The information about spina bifida throughout this section is designed for parents of children of all ages with this condition. This page, however, is especially relevant for teens and young adults.
Mobility (walking and wheelchair)
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 and 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 30's, 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.
Obesity (overweight)
Obesity 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 percent 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
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 orthotist (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.
Bowel issues
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.
Bladder management
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 cath 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, visit www.adolescentservices.net and talk to your urologist.
Latex allergy
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 and 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.