Macroglossia

What is macroglossia?

Macroglossia (enlarged tongue) is a rare condition that typically affects more children than adults. People with macroglossia have tongues that are larger than typical, given the size of their mouths. Most people are born with macroglossia that can be linked to conditions such as Beckwith-Wiedemann syndrome or Down syndrome. People can also develop macroglossia from some forms of cancer or severe infections. Macroglossia treatment ranges from speech therapy to surgery.

How do I know if I have macroglossia?

If you have macroglossia, your tongue may stick out of your mouth. You may also have trouble eating, breathing or talking. You can develop macroglossia if you have infections or certain cancers. If your child has macroglossia, these symptoms may be one of several caused by an underlying inherited condition.

Is macroglossia a common medical condition?

It’s hard to say how many people have macroglossia. Usually, macroglossia is a symptom of many different medical conditions, and not everyone who has these conditions develops macroglossia.

What are macroglossia symptoms?

An oversized tongue that’s always sticking out may be the most obvious and common macroglossia symptom. Other symptoms are:

• Noisy, high-pitched breathing (stridor).
• Snoring or low-pitched breathing (stertor).
• Difficulty eating or drinking (dysphagia).
• Drooling.
• Difficulty speaking.

What are the causes of macroglossia?

Macroglossia has several causes. Very rarely, people are born with oversized tongues but no other medical problems. More frequently, macroglossia is a symptom of an underlying condition that people either inherit or acquire through illness. Some surgeries and medical treatments may cause macroglossia.

What inherited conditions might cause macroglossia?

Macroglossia is linked to several inherited conditions. Here’s information on a few of those conditions:

• Beckwith-Wiedemann syndrome: This is a growth disorder syndrome that causes large body size, large organs and can increase children’s risk for developing certain childhood cancers. Approximately 90% of children who have Beckwith-Wiedemann syndrome also have macroglossia.
• Hurler/Hunter syndrome (mucopolysaccharidosis): This is a group of diseases that affects your body’s ability to break down sugar molecules.
• Down syndrome: People with Down syndrome are born with an extra chromosome, which changes the way their brain and body develop, creating and physical and mental challenges.

What acquired conditions might cause macroglossia?

Acquired causes may include metabolic or endocrine conditions, like hypothyroidism or infections, such as diphtheria. Some acquired conditions that cause macroglossia include:

• Amyloidosis: This is a protein disorder that keeps tissues and organs from working as they should. Macroglossia is the most common oral symptom of amyloidosis.
• Hypothyroidism: This is a common condition where your thyroid doesn’t create and release enough thyroid hormone into your bloodstream. This makes your metabolism slow down. Hypothyroidism is a common cause of macroglossia in children.
• Acromegaly: This is a rare condition that causes your body to release too much growth hormone. People with acromegaly often have oversized tongues, jaws, hands and feet.
• Diphtheria: This is an infectious disease that may cause your tongue to swell.

What tumors might cause macroglossia?

Macroglossia can be a symptom of several benign and cancerous tumors, including:

• Lymphangioma: This is a benign tumor that develops in your lymphatic system, causing fluid-filled cysts on the mucous membranes in your mouth.
• Hemangioma: These are benign tumors that grow from blood vessels.
• Lymphoma: This cancer affects your lymph system.

How do healthcare providers diagnose macroglossia?

First, your healthcare provider will do a physical examination, checking your or your child’s tongue, head and neck. They may use a combination of tests to diagnose macroglossia and any underlying conditions. Those tests may include:

• Computed tomography (CT) scan. CT scans use a series of X-rays and a computer to create three-dimensional (3D) images of your or your child’s mouth, head and neck.
• Magnetic resonance imaging (MRI). This is a painless test that uses a large magnet, radio waves and a computer to produce very clear images of organs and structures within your or your child’s body.

How do you fix macroglossia?

In some instances, children who have macroglossia “outgrow” the condition as the bones in their face grow and their mouths have room for their tongues.

When healthcare providers treat macroglossia, they start with diagnosing and treating the underlying condition, then treating macroglossia. Macroglossia treatments may include:

• Medication such as corticosteroids for swelling.
• Orthodontic treatment.
• Surgery. About 10% of people treated for macroglossia have surgery to reduce the size of their tongues.

How can I reduce my child’s risk for developing macroglossia?

Most of the time, macroglossia is linked to inherited conditions you can’t prevent. Other times, macroglossia may be a symptom of an infectious disease. Protecting yourself against infectious diseases is one way you may be able to prevent macroglossia.

What can I expect if my child has macroglossia?

Macroglossia is usually a symptom of an underlying problem such as an inherited condition or an illness. Typically, diagnosis and treatment for the underlying condition are the first steps toward managing macroglossia symptoms.

When should my child see their healthcare provider?

If your child has macroglossia, they’re probably being treated for the underlying condition that caused them to develop macroglossia. Managing that underlying treatment is your top priority. Ask your healthcare provider about your child’s treatment plan. They’ll tell you what to expect and when you should contact them.

What questions should I ask my doctor?

If your child has macroglossia, you’ll likely want to know why they developed the condition and what you can expect from treatment. Some questions you might want to ask your healthcare provider include:

• What is macroglossia?
• How will it affect my child?
• Why did my child develop macroglossia?
• What treatment do you recommend?

A note from Cleveland Clinic

If your child has macroglossia, also known as enlarged tongue, the diagnosis may be an aspect of an inherited condition that’s already changing your child’s and your life. Your child’s healthcare is likely focused on treating your child’s underlying condition. But they’ll understand if you want to know more about this new symptom and what it means for your child’s quality of life. Ask their healthcare provider what can be done for your child and what to expect. They’ll be glad to share details and help you to put this new information into perspective.