Glycogen storage disease type III

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I have glycogen storage disease type III. Can I have children?

Yes. Having glycogen storage disease type III (GSD III) does not impact a persons ability to have children, but women with GSD III should have extra monitoring and examinations throughout the pregnancy. People with GSD III can have children who also have GSD III and children who do not have GSD III but who are carriers for the condition. Carriers are typically healthy and do not have the signs and symptoms of GSD III. If you have GSD III and are considering having children, speak with your doctor or genetic counselor about your chances of having a child with GSD III. Some people with GSD III may consider testing before or during a pregnancy for GSD III.

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What type of diet will my child with glycogen storage disease type 3 need?

How often will my child with glycogen storage disease type 3 need to eat?

My child has glycogen storage disease type 3. Is it safe for them to take medications?

Does my insurance cover diagnostic testing for glycogen storage disease type 3?

Will my child grow out of glycogen storage disease type 3?

What type of diet will my child with glycogen storage disease type 3 need?

Your child will need to follow a strict diet high in protein and low in sugars. Your child may also need nutritional supplements such as uncooked cornstarch or feeding tube. A dietician or nutritionist will help you and your child develop a personalized diet to make sure your child is getting all the nutrients they need. It is important to follow the diet that is provided so that you child can grow healthy and strong.

How often will my child with glycogen storage disease type 3 need to eat?

It is important that children with glycogen storage disease type 3 (GSD 3) have frequent feedings. They should eat every 3-4 hours throughout the day and night. Your doctor and dietician can help devise a feeding plan for your child. Some children with feeding difficulties may get a feeding tube to help make sure they get regular, nutritional feedings. Uncooked cornstarch may also be used to help keep your child's blood sugar in the normal range after the first year of life. Discuss what feeding plan is right for your child with your metabolic dietician.

My child has glycogen storage disease type 3. Is it safe for them to take medications?

Children with glycogen storage disease type 3 (GSD III) need to carefully control what goes in to their body. There are certain medications that are usually avoided in people with GSD III such as steroids and certain hormones to make a person grow (growth hormone). Other medications may be used only if truly necessary. Before taking any medication, check with your child’s doctor and/or their metabolic dietitian to make sure the medication is safe for them to take.

Does my insurance cover diagnostic testing for glycogen storage disease type 3?

While every insurance company's policy is different, almost all insurances have at least some coverage for diagnostic testing if you have a family history or if your child is showing signs of glycogen storage disease type III. Sometimes a doctor must write a 'letter of medical necessity' that explains to the insurance company the importance of the testing. If you have questions about your coverage, check with your insurance provider.

References
  • https://ghr.nlm.nih.gov/primer/testing/insurancecoverage
Will my child grow out of glycogen storage disease type 3?

Glycogen storage disease type 3 (GSDIII) is a lifelong condition. Your child will not grow out of GSDIII, so it is important to teach them how to manage their diet and stay healthy. The health problems associated with GSD III can change over time. As a child grows, the liver problems can get better. However, in adulthood a person with GSD III may experience issues with the muscles including the heart. It is important that people with GSD III continue to be followed throughout life by a doctor to make sure the condition is being managed correctly.

References

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