We work with your primary care doctor throughout the year so you or your child can receive care close to home. Typically, people come to Duke once to twice a year for follow-up with our specialists.
Preventive Disease Monitoring
Living with glycogen storage disease means closely monitoring lab test results, as well as regular tests and screening to diagnose complications when they arise. Severe forms of glycogen storage disease can damage the heart and lungs and cause infections. We work closely with your hometown doctors to follow our treatment plan and so that tests can be performed closer to home.
The effects of some forms of glycogen storage disease can be reversed by maintaining healthy levels of vitamins, minerals, and enzymes for proper growth and development. Depending on your or your child’s condition, special diets may include high-carbohydrate, high-starch meals; frequent meals to maintain blood sugar levels; cornstarch therapy to avoid low blood sugar; or limiting foods the body can’t break down. Sometimes a feeding tube is recommended for continuous feeding.
People with glycogen storage disorders often work with physical and occupational therapists to build strength and promote proper development. These therapies can help you or your child with motor skills for tasks of daily living.
Weakened muscles and developmental delays related to glycogen storage disorders can impact speech. Our speech pathologists use speech therapy to teach children how to make the correct mouth movements to improve their spoken words and language acquisition.
Surgery may be necessary if the liver, heart, or digestive tract is affected by the disease. If serious damage occurs, organ transplants may be recommended.