Thyroid Eye Disease | DEVITA Eye Hospital- Best Eye Hospital

What is Thyroid Eye Disease in children?

Thyroid eye disease is a disorder of the immune system. It causes muscles and tissues around the eye to puff up.

What causes thyroid eye disease?

Usually it occurs in people with too much thyroid hormone. But it can also occur if you have too little thyroid hormome or, rarely, if you have normal thyroid hormone.

A condition called Graves’ disease causes your body to attack the thyroid gland. Many people with Graves’ disease also have thyroid eye disease. People with Graves’ disease are at higher risk of developing thyroid eye disease if they smoke, are female, have certain genetic factors, or get radioiodine treatment.

What are the symptoms of thyroid eye disease?

Symptoms include:

Redness of the eye/eyelid
Irritation of the eye
Pain and pressure of the eye
Eyes that are dry or watery
Double vision
Sensitivity to light
Bulging of eyes
Blurry vision or double vision
Difficulty closing the eyes

How is thyroid eye disease diagnosed?

An ophthalmologist (doctor who specializes in treatment of the eyes) will perform an eye exam. If you are diagnosed with the condition, they will check to see how it is changing over time and develop a treatment plan for you.

How is thyroid eye disease treated?

Treatment options include:

lubricating medicine
anti-inflammatory medicine
IV (intravenous) medicine
prism glasses
radiation
surgery

What are the stages of thyroid eye disease?

There are 2 phases:

Acute. This is where symptoms appear and often get worse quickly.
Chronic. Some symptoms may get better, but others may not go away. If left untreated, symptoms may continue to return.

Next steps:

Refractive error

How is Thyroid Eye Disease diagnosed in a child?

Your child's healthcare provider will ask about your child's health history and symptoms. They will examine your child and pay close attention to the eyes. The healthcare provider will likely advise that your child see an eye specialist (ophthalmologist).

The ophthalmologist will check your child's eyes with special tools. Your child may need a dilated indirect ophthalmoscopic exam. Your child may be given anesthesia medicine to sleep through the exam.

Your child may need other tests such as:

Ocular ultrasound. This test uses sound waves to create images of the eyes.
CT scan. A series of X-rays and a computer are used to make detailed images.
MRI Large magnets, radio waves, and a computer are used to make detailed images.
Blood tests. Your child’s blood may be tested for signs of disease, and for genetic changes.

A child may be diagnosed with no symptoms. This may be the case if you have a family history of Thyroid Eye Disease. Your child may have eye exams often to check for signs of the cancer.

After a diagnosis of Thyroid Eye Disease, these tests will help your child's healthcare provider know if the cancer is inside the eye, how much of the eye is involved, and if it has spread beyond the eye. This process is called staging. The stage of a cancer is one of the most important things to know when deciding how to treat it. Doctors use 2 standard staging systems for Thyroid Eye Disease.

The newer system is called the International Classification for Intraocular Thyroid Eye Disease. It divides these tumors into 5 groups lettered A through E. The groups are based on how likely it is that the eye can be saved. Group A means the tumor is small and not near important structures that allow your child to see. These tumors can likely be removed and vision can be saved. The higher the group, the more advanced the tumor is. A tumor in Group E means that healthcare providers have little to no chance of saving the eye. The other groups then fall between these extremes.

The Reese-Ellsworth system is older and less commonly used. It groups Thyroid Eye Diseases much like the International Classification system, based on whether the eye and vision can be saved. The system uses groups numbered 1 through 5. Group 1 means a good chance of saving the eye, and Group 5 means it's not likely. The other groups fall between this.

Doctors may use other staging systems. The staging process for Thyroid Eye Disease can be very complex. Be sure to ask your child's healthcare provider to explain the stage of your child's cancer

How is Thyroid Eye Disease treated in a child?

Most children in the U.S. with Thyroid Eye Disease have a good chance of recovery.

Your child will be treated by a team of different types of healthcare providers, such as:

Ophthalmologist
Pediatrician
Pediatric Surgeon
Children’s cancer specialist (pediatric oncologist)
Retina specialist
Specialist in using radiation to treat cancer (radiation oncologist)
Rehabilitation specialist
Pediatric nurse specialist

Treatment will depend on your child’s symptoms, age, and general health. It will also depend on how severe the condition is. It also depends on whether the Thyroid Eye Disease is hereditary.

Many of the treatment methods require sleep medicine (anesthesia). Treatment may include the following:

Laser therapy or photocoagulation. A laser is used to destroy the blood supply to the tumor. This is used on some smaller tumors.
Surgery. In some cases, surgery may be done to remove the eye. This is called enucleation. This is not needed for all Thyroid Eye Diseases. They eye socket and eye are replaced with an implant and artificial eye.
Chemotherapy. Anti-cancer medicines may be given into a vein (IV), by mouth (systemic), or directly into an artery that feeds the eye. The medicines may reduce the size of the tumor so that other treatments can work better.
Radiation therapy. Radiation may be used when another treatment doesn’t work well enough. Internal radiation (brachytherapy) may be done.
Thermotherapy. Laser light is used to destroy cancer cells. This may be used for some small tumors. Or, it may be used with chemotherapy or radiation for larger tumors.
Cryotherapy. A tool is used to freeze and kill the cancer cells.
Supportive care. Treatment can cause side effects. Medicines and other treatments can be used for pain, fever, infection, and nausea and vomiting.
Clinical trials. Ask your child's healthcare provider if there are any treatments being tested that may work well for your child.

With any cancer, how well a child is expected to recover (prognosis) varies. Keep in mind:

Getting medical treatment right away is important for the best prognosis. Cancer that has spread may involve much more treatment.
Ongoing follow-up care during and after treatment is needed.
New treatments are being tested to improve outcome and to lessen side effects.

What are possible complications of Thyroid Eye Disease in a child?

A child may have complications from the cancer or from treatment, such as:

Detached retina
Spreading of the cancer (metastasis)
Loss of eyesight
Side effects of chemotherapy such as tiredness, bruising and bleeding, mouth sores, infections, vomiting, and diarrhea
Bleeding or infection from surgery
Growth of other cancers

How can I help my child live with Thyroid Eye Disease?

You can help your child manage their treatment in many ways. For example:

Your child may have trouble eating. A dietitian may be able to help.
Your child may be very tired. They will need to balance rest and activity. Encourage your child to get some exercise. This is good for overall health. And it may help to lessen tiredness.
Get emotional support for your child. Find a counselor or child support group.
Make sure your child attends all follow-up appointments.

A child with Thyroid Eye Disease needs ongoing care. Your child will be cared for by a team of healthcare providers. They will treat any late effects of treatment and to watch for signs or symptoms of the tumor growing back. The healthcare providers will also monitor your child with imaging and other types of tests.

Note: If your child has an implant and artificial eye, they should wear protective eyewear during activities that may harm the eye.

Family members may want to see a genetic counselor to learn more about the risk for Thyroid Eye Disease.

When should I call my child’s healthcare provider?

Call the healthcare provider or get medical help right away if your child has:

Symptoms that get worse
New symptoms
Side effects from treatment

Key points about Thyroid Eye Disease in children

Thyroid Eye Disease is a rare cancer of the retina of the eye. The retina is a specialized group of nerve cells located in the back of the eye.
The cancer may be passed on from parents (inherited) or it may occur by chance (sporadic).
The most common symptoms are an abnormal white reflection from the retina (leukocoria) and misaligned eyes (strabismus).
It’s diagnosed by a dilated indirect ophthalmoscopic exam.
In the U.S., the prognosis for most children with Thyroid Eye Disease is very good.
There are many treatments for Thyroid Eye Disease including surgery, chemotherapy, radiation therapy, laser therapy, and cryotherapy.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

Know the reason for the visit and what you want to happen.
Before your visit, write down questions you want answered.
At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.
Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.
Ask if your child’s condition can be treated in other ways.
Know why a test or procedure is recommended and what the results could mean.
Know what to expect if your child does not take the medicine or have the test or procedure.
If your child has a follow-up appointment, write down the date, time, and purpose for that visit.
Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.

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