Glycogen storage disease type III
How do I find a center of excellence for glycogen storage disease type 3?
Your pediatrician can help you find a center with experience treating children with glycogen storage disease type 3 and other metabolic disorders. For care and support surrounding the dietary management of GSD, another option is to contact the Genetic Metabolic Dietitians International (GMDI).
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What specialist doctors should I see if my child has glycogen storage disease type 3?
If your child has glycogen storage disease type 3, they should get regular checkups with a pediatric metabolic specialist and a nutritionist or dietician. Children with glycogen storage disease type 3 should also have regular examinations of their liver and heart, as well as annual bloodwork. You may be referred to other specialists depending on your child’s symptoms. It is also important your child continues to be seen by a pediatrician or family doctor as well. If your child becomes ill, emergency care may be necessary.
If my child has glycogen storage disease type 3, what will happen at their doctor visits?
Your child will have regular visits to the pediatrician and metabolic specialist as well as regular liver and heart exams. The doctor will review your child’s diet with you and may take blood or urine samples to check blood sugar levels. The doctor will also conduct a physical and developmental exam, to make sure your child is growing healthy and well.
If my child has glycogen storage disease type 3, what should my doctor know about managing the disease?
Your pediatrician needs to work with a metabolic dietitian and a pediatric metabolic specialist to take care of your child. If there are no pediatric metabolic specialists in your area, you will need to work closely pediatrician to help them become informed about your child’s diagnosis and connect with a metabolic specialist for consultation. Your doctor should know about your child’s diet and any concerns you may have about their development. If your child has vomiting, lethargy, unexplained muscle weakness, sweating or shakiness for more than 12 hours, contact your pediatrician immediately as they will need careful management of their illness to avoid more serious health problems.
- Glycogen storage disease type III diagnosis and management guidelines. Kishnani PS, Austin SL, Arn P, Bali DS, Boney A, Case LE, Chung WK, Desai DM, El-Gharbawy A, Haller R, Smit GP, Smith AD, Hobson-Webb LD, Wechsler SB, Weinstein DA, Watson MS; ACMG.Genet Med. 2010 Jul;12(7):446-63