Thyroid Eye Disease in Children

Thyroid eye disease (TED) is an autoimmune disease. In TED, the immune system mistakenly attacks tissues near the eye. This results in inflammation and damage to the muscles, tissues, and fat around the eyes.^1-4

Other names for TED are:^1-4

• Graves’ eye disease
• Graves’ ophthalmopathy
• Graves’ orbitopathy
• Thyroid-associated ophthalmopathy

While not common, children can have TED. The risk of TED is greater for females. The risk also increases for those who have other autoimmune conditions or a family member with TED.^1-5

Symptoms of TED in children

Children with TED can have the same symptoms as adults with TED. But the symptoms tend to be milder in children.^2,4,5

In most people with TED, the eyelids retract, with the top eyelid raising up and the bottom eyelid dropping. This leaves the eye more open and at risk of injury and infection.^1,3

Other common symptoms of TED include:^1,3

• Bulging eyes (proptosis)
• Discomfort in the eyes
• Double vision
• Dry eyes
• Inflamed tissue around the eyes
• Limited eye movement
• Pain in the eyes
• Pressure in the eye sockets
• Redness in the eyes
• Scarring of eye tissue
• Sensitivity to bright lights
• Swelling
• Watery eyes

In severe cases of TED, the optic nerve and outer layer of the eye can become damaged. This can result in loss of vision. Such damage and loss of vision occurs less often in children than in adults.^1,3-5

Symptoms appear in what is known as the active phase of TED. In some people, this phase can last up to 3 years. A few signs of TED may still exist in the inactive phase that follows. TED can become active again over time, with symptoms arising once more.^1,3

A 2018 study of 67 children at Children’s Hospital of Philadelphia showed most had minor symptoms of TED. Every child had bulging eyes. Nearly 70 percent had retracted eyelids. None suffered harm to the optic nerve. But some had surgery to address the effects TED had on their appearance or damage to their cornea.⁵

A 2021 study found that TED was mild in 80 percent of 115 children with the disease. Less than 2 percent had severe TED. About 80 percent had bulging eyes, while roughly 66 percent had retracted eyelids.²

Diagnosis

A doctor can diagnose thyroid eye disease (TED) in children like they do in adults. The doctor will assess a child’s symptoms during an exam. They will also review the child’s health history.^1,3

The doctor may order special tests to confirm a diagnosis and assess the degree or progress of TED. Blood tests can measure thyroid function, and imaging tests can show how inflamed tissue is. Eye tests can reveal any damage to the eyes.^1,3

Managing thyroid eye disease in children

Keeping symptoms of TED controlled helps with managing the condition in children. Watching for any changes in symptoms is key. So is seeking care for any symptoms and other health conditions.¹

The following steps can help lessen symptoms of TED:^1,3

• Applying ointments to the eyes
• Gently pressing a cool cloth on top of closed eyelids
• Limiting salt intake
• Sleeping with the head raised
• Using aids, such as an eye patch for double vision
• Wearing sunglasses when light bothers the eyes
• Wetting dry eyes with artificial tears

Some find that taking certain drugs and supplements like selenium helps ease symptoms of TED. Steroids decrease inflammation and swelling. The monoclonal antibody drug Tepezza® (teprotumumab) helps with bulging of the eyes and double vision. This drug was approved by the US Food and Drug Administration (FDA) in 2020 to treat TED.^1,3,4

Tepezza has been used to treat advancing TED in adults. In 2022, a group of doctors gave injections of Tepezza to a child with TED that quickly got worse. The girl was 9 at the time and had overactive thyroid (hyperthyroidism). The bulging, pain, and redness in her eyes lessened after using this treatment for 4 months.⁴

The most serious cases of TED may call for surgery. Surgery can move eye muscles, relieve pressure on the optic nerve, and shift placement of the eyelids. Some children do need surgery because of TED. Five out of the 67 children in the 2018 study at CHOP underwent orbital decompression surgery.^1,5

Providing emotional and mental support is also important in the management of TED, especially in children. TED can affect how a child looks. This in turn can impact how they feel about themselves and their quality of life.³

What to do if you see the signs in your child

If you see the signs of TED in your child, take note of them and seek care. Schedule an appointment for your child with their doctor. Share your notes and talk to the doctor about your concerns.

Your child’s doctor can order tests to help diagnose the problem. They can advise you on treatment options. The doctor may suggest that your child see other doctors with special training in eye and hormone disorders. Together, they can help you and your child with managing TED.