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Babies and Glycogen Storage Disease (Video)

Notice symptoms of this little-known disease

This article is more than 2 years old.
There may be more recent information available.

Something with your baby just doesn’t seem right. Do you notice these signs?

  • Irritable in the morning, sweaty and shaky
  • Needing to be fed immediately and frequently
  • Not sleeping through the night
  • Enlarged abdomen
  • Odd, fruity odor on her breath, especially first thing in the morning

If you notice these symptoms, call your pediatrician. It’s possible your baby is unable to maintain correct blood sugar/glucose levels, a problem called glycogen storage disease (GSD).

How GSD affects children

People with GSD can’t properly break down glycogen (the storage form of glucose or simple sugars) between meals.

When glycogen builds up in the liver, it can affect the way the liver and/or muscles work, and over time, cause liver tumors, weak bones, poor growth and delays in puberty.

GSD more common than people realize

Pediatric endocrinologist Laurie Minarich-Tsilianidis, MD, who treats GSD, says the problem may be more common than people realize since it has been  underdiagnosed.

She says, “Some kids can grow up with milder forms that may not be caught until later in childhood or even adulthood.”

Even though it may not be diagnosed until later, Dr. Minarich-Tsilianidis says it usually affects kids at a very young age, while more severe forms are generally found in infancy.

But the good news is that doctors are getting better at finding GSD earlier, and they can work with you to make sure your child maintains normal blood sugar/glucose levels. She is currently developing a program specializing in treating GSD.

One surprising treatment can be found on the shelf of your local supermarket: corn starch. Because raw corn starch is digested very slowly, it helps keep blood sugars normal between meals.

Tags: child safety, glycogen storage disease GSD, puberty
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  • Danielle Zora

    There is more than one type of glycogen storage disease – this article is about Pompe’s Type 7. I have type 5 McArdle’s which is different.