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Duane Syndrome

  • Overview

    The Boston Children's Hospital team approaches each case of Duane syndrome with a patient-focused, family-centered approach, drawing from the extensive multidisciplinary expertise within our Department of Ophthalmology and across the hospital.

    If you or your child have been diagnosed with an eye disorder like Duane syndrome, you may have dozens of questions: What does this condition entail? How will it affect the future? Will surgery be required? Does the condition affect vision? What do we do next?

    Here at Children’s Hospital Boston, our experts in strabismus and pediatric ophthalmology have decades of experience treating Duane syndrome (and the full spectrum of related vision disorders). The information on the following pages is designed to give you a helpful overview of the condition, as well as a sense of the available treatment options.

    Rest assured that our compassionate, knowledgeable clinicians are here to support you and your family at every step of the way. 

    What is Duane syndrome, exactly?
    Duane syndrome—which is also known as Duane’s syndrome or Duane retraction syndrome—is a rare form of strabismus, or misalignment of the eye. Where most forms of strabismus leave side-to-side eye movements intact, in Duane syndrome the “wiring” of the eye muscles gets jumbled, and movement of eye(s) is limited in certain directions. There are three types of Duane syndrome, but the most common is Type I, which interferes with the eye’s ability to move outward (away from the nose). Duane syndrome can usually affects just one eye, but it can sometimes involve both.  The left eye is more likely to be affected than the right, although doctors still don’t know exactly why.

    Learn more about the other types.

    To better understand Duane syndrome, it’s helpful to understand the basic anatomy of the eye

    • Three of the nerves extending from the brain to the eye muscles, called cranial nerves, control the movements of the eye by transmitting electrical signals.
    • The sixth cranial nerve is in charge of the lateral rectus muscle, the muscle that moves the eye outward.
    • The third cranial nerve controls the medial rectus muscle, the muscle that pulls the eye inward, as well as other muscles.

     When a person has Type I Duane syndrome:

    • The lateral rectus muscle does not receive a signal from the sixth cranial nerve.
    • The eye is unable to move fully outward (away from the nose).
    • Instead, the lateral rectus muscle receives a signal from the third cranial nerve.
    • When the eye moves inward, the lateral rectus muscle activates, and the eye appears to shrink in size (retract) as both the medial and lateral rectus muscles pull at the same time. This is why Duane syndrome is sometimes called “Duane retraction syndrome.” 

    Sometimes, Duane syndrome occurs because the sixth cranial nerve does not develop at all; in other cases, the nerve develops improperly or doesn’t function correctly. The image at left, courtesy of the research webpage of Elizabeth Engle, MD, shows the missing pathway of the sixth cranial nerve and its relation to the third cranial nerve. Click for a larger version of the image.

    How Children’s Hospital Boston approaches Duane syndrome
    Children's doctors are known nationwide for handling the most complex cases of Duane syndrome and related disorders. Our ophthalmologic surgeons specialize in the delicate eye muscle operations that are required to treat the syndrome, including adjustable suture surgery and vertical transposition surgery

    Children’s ophthalmologists are actively involved in research that is shaping the way eye disorders like Duane syndrome are detected and treated around the world. And, since Children’s is Harvard Medical School’s primary teaching hospital for pediatrics and pediatric ophthalmology, our doctors are also training the next generation of clinicians and clinical scientists. 

    Our team treats each person with Duane syndrome with a patient-focused, family-centered approach, drawing from the extensive multidisciplinary expertise within our Department of Ophthalmology and across the hospital.

    Although we are known for our science-driven approach to medicine at Children’s, we always remember that every patient is, first and foremost, an individual. Our team of professionals will create a customized treatment plan for specific symptoms and circumstances—and we’ll include you and your family at every step of the way. 

    Spotlight on: Children's Pediatric and Adult Strabismus Services
    The Pediatric and Adult Strabismus Services at Children's offer comprehensive evaluation and correction of strabismus in babies, children and adults. Adults with strabismus are referred to Children’s because our ophthalmologists, who are specially trained in childhood eye conditions, have years of expertise in the delicate eye muscle surgery typically required to straighten the eyes.

    Duane syndrome: Reviewed by David G. Hunter, MD, PhD
    © Children’s Hospital Boston; posted in 2011

    Contact Us

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    Boston MA 02115

     617-355-6401

  • In-Depth

    Duane syndrome—which is also known as Duane’s syndrome or Duane retraction syndrome— is a rare form of strabismus, or misalignment of the eye. Where most forms of strabismus leave side-to-side eye movements intact, in Duane syndrome the “wiring” of the eye muscles gets jumbled, and movement of eye(s) is limited in certain directions.. The disorder is named after Alexander Duane, an early-20th-century ophthalmologist who devoted his career to helping children with the condition. 

    What goes wrong in the eye of a person who has Duane syndrome?
    The problem in Duane syndrome is actually the nerve controlling the eye muscle—not the muscles themselves.

    To better understand Duane syndrome, it’s helpful to understand the basic anatomy of the eye. 

    • Three of the nerves extending from the brain to the eye muscles, called cranial nerves, control the movements of the eye by transmitting electrical signals.
    • The sixth cranial nerve is in charge of the lateral rectus muscle, the muscle that moves the eye outward.
    • The third cranial nerve controls the medial rectus muscle, the muscle that pulls the eye inward, as well as other muscles. 

    When a person has Type I Duane syndrome:

    • The lateral rectus muscle does not receive a signal from the sixth cranial nerve.
    • The eye is unable to move fully outward (away from the nose).
    • Instead, the lateral rectus muscle receives a signal from the third cranial nerve.
    • When the eye moves inward, the lateral rectus muscle activates, and the eye appears to shrink in size (retract) as both the medial and lateral rectus muscles pull at the same time. This is why Duane syndrome is sometimes called “Duane retraction syndrome.” 

    What are the different types of Duane syndrome?
    There are three types of Duane syndrome. In all three types, the opening of the eye narrows and the eyeball retracts when the eye moves inward

    By far the most common is Type I, in which, in addition to the retraction of the eye:

    • there is limited or no ability to move the eye outward
    • the eye has little to no difficulty moving inward
    • the opening of the eye and widens when the person tries to move the eye outward

     In Type II Duane syndrome:

    • there is limited or no ability to move the eye inward
    • the eye has little to no difficulty moving outward

    In Type III Duane syndrome:

    • there limited or no ability to move the eye either inward or outward

    Because the majority of patients with Duane syndrome have Type I, we will focus on that form of the condition throughout these pages. Your doctor can give you more information about Type II or Type III Duane syndrome.

    Who is more likely to develop Duane syndrome?
    The disorder affects people from all races and ethnic backgrounds. For reasons we don’t yet understand, girls are more likely to develop Duane syndrome than boys.

    Is Duane syndrome linked to any other conditions?
    The majority of people with Duane syndrome do not have any other health problems. However, in rare cases, patients with the disorder also have complex conditions such as:

    • skeletal malformations
    • kidney problems
    • hearing loss
    • nervous system disorders
    • Goldenhar syndrome, a birth defect involving deformities on one side of the face
    • Holt-Oram syndrome, also known as hand-heart syndrome, an inherited disorder that causes malformations in the heart and upper limbs
    • Morning Glory syndrome, also known as optic nerve coloboma, a birth defect that causes a separation in the optic nerve and severe loss of vision
    • Okihiro syndrome, a rare, inherited disorder combining Duane syndrome with hearing loss and arm malformation
    • Wildervanck syndrome, an inherited disorder—almost always affecting girls—that involves Duane syndrome, hearing loss and fused neck vertebrae 

    Is there a cure for Duane syndrome?
    Because the affected sixth cranial nerve cannot be repaired or replaced, there is no cure for Duane syndrome. However, for people whose lives are significantly disrupted by the condition, surgery can be very helpful in:

    • reducing or stopping the abnormal head posture many develop in an attempt to see better
    • reducing the angle of strabismus (misalignment of the eyes) 

    Read more about surgical treatments for Duane syndrome.

    Watch a Duane syndrome patient’s surgery in action

    Watch as ophthalmologist-in-chief, David G. Hunter, MD, PhD, and the Ophthalmology team at Children’s Hospital Boston address the issues of Duane syndrome in this surgical webcast.

    Causes

    What causes Duane syndrome?
    Duane syndrome occurs when the sixth cranial nerve—the nerve originating in the brainstem that controls the movements of the lateral rectus muscle—either doesn’t develop at all, or doesn’t work properly. We are working to uncover an exact reason for this faulty development, and the laboratory of Children's researcher Elizabeth Engle, MD, has discovered genes that cause some of the more rare forms of the condition.

    If there is no nerve to carry the signal from the brain to the muscle:

    • It is like having no wire between the light switch and the light bulb – nothing happens.
    • Instead, the nerve that is supposed to control the opposite muscle, the medial rectus muscle, sends an extra branch to activate the lateral rectus muscle.

    But with this jumbled wiring:

    • The lateral rectus muscle tries to pull the eye outward when the brain is telling the medial rectus muscle pull the eye inward.
    • As a result, the two muscles end up in a tug of war that causes the eye to retract partially into the eye socket as the medial rectus muscle overcomes the lateral rectus muscle to pull the eye inward.
    • This is why some people call the condition “Duane retraction syndrome,” and retraction of the eye during attempted inward movement is the hallmark of the diagnosis.

    In some people, the lateral rectus muscle overcomes the medial rectus muscle in the tug of war, and the eye can move outward but not inward (Duane syndrome Type II). In other cases, neither the lateral nor the medial rectus muscle dominates, and the eye does not move well either inward or outward (Duane syndrome Type III.) 

    Is Duane syndrome congenital (present at birth)?
    Yes. Children with Duane syndrome are born with the disorder. However, it might not become readily apparent until the child grows older and starts demonstrating difficulty with vision or an abnormal head turn to the side (see the Symptoms section below to learn more). Most cases of Duane syndrome are diagnosed by age 10. 

    Is Duane syndrome inherited?
    In most cases, no. Ninety percent of children with Duane syndrome have no family history of the disorder. About 5 percent of people with Duane syndrome have a parent with Duane syndrome (dominant inheritance). Here at Children's, our research team has discovered the CHN1 mutation in patients with dominantly inherited Duane syndrome.

    Is there a genetic test to screen for Duane syndrome?
    No. There is currently no test available that can detect a genetic marker for the disorder, except for the CHN1 genetic test when Duane syndrome affects more than one generation in a family. 

    Could I have done anything to prevent Duane syndrome?
    No. There is no scientific evidence that suggests Duane syndrome is caused by anything a parent or patient did, or didn’t, do.

    Signs and symptoms

    What are the symptoms of Duane syndrome?
    Although Duane syndrome is congenital (present at birth), it may take as long as several years for it to become noticeable: very young children cannot vocalize the fact that they are having trouble with their vision, while older children may have learned to compensate very well for their visual difficulties. In both cases, the symptoms children show can be quite subtle. Most people with Duane syndrome are diagnosed by age 10. 

    When symptoms are noticeable, they usually include:

    • holding the head in an abnormal posture, turned to the right or left
    • crossing or misalignment of the eyes
    • closing one eye to see better 

    Older children may be able to describe the problems they are experiencing, such as:

    • double vision
    • neck pain
    • headaches
    • difficulty seeing things on the side of the affected eye 

    Since these symptoms can also be caused by other eye disorders, it’s important to obtain an evaluation from a qualified eye doctor as soon as possible.

    A patient’s gratitude

    Read one patient’s message of thanks for the Children’s Ophthalmology team.


    FAQ

    Q: Is Duane syndrome common?
    A:
    No; it is a rare disorder, affecting fewer than 200,000 people in the United States according to the Office of Rare Diseases of the National Institutes of Health. 

    Q: What’s the difference between strabismus and Duane syndrome?
    A:
    Strabismus is any eye disorder that involves misalignment of the two eyes. Duane syndrome is one type of strabismus that is distinct because of the retraction of the eye.

    Q: Does Duane syndrome cause blindness?
    A:
    No. While one eye can lose vision (see next question), the condition does not cause blindness.

    Q: If a person has Duane syndrome, will there be other eye problems, too?
    A: Most likely, no. Some children with Duane syndrome will also develop amblyopia, or “lazy eye,” in which a normal eye loses vision because the brain is not paying attention to the input. This can develop in Duane syndrome if the head position that usually develops is not sufficient to compensate for the weak muscle and the eyes becomes constantly misaligned.

    There are many clinical reports of patients with Duane syndrome who have other eye conditions. However there is no proof that these other eye conditions occur any more commonly in Duane syndrome than they do in other people.

    Q: Is Duane syndrome linked to any other health conditions (beyond vision problems)?
    A: The majority of children with Duane syndrome do not have any other health problems. However, in rare instances, children with the disorder may also have complex conditions, such as:

    • hearing loss
    • skeletal malformations
    • kidney problems
    • nervous system disorders
    • Goldenhar syndrome, a birth defect involving deformities on one side of the face
    • Holt-Oram syndrome, also known as hand-heart syndrome, an inherited disorder that causes malformations in the heart and upper limbs
    • Okihiro syndrome, a rare, inherited disorder combining Duane syndrome with hearing loss and malformation and one of the two long bones of the forearm
    • Wildervanck syndrome, an inherited disorder—almost always affecting girls—that involves Duane syndrome, hearing loss and fused neck vertebrae

    Q: Is it common for people with Duane syndrome to be shy or withdrawn around others?
    A: In cases where the eye alignment is significantly disrupted, yes. It’s important to remember that a big part of human communication is looking people in the eye. A person with moderate to severe Duane syndrome might be unable to make and sustain good eye contact. Understandably, this can make her feel self-conscious and less able to connect with others. 

    Q: Are there certain activities a person with Duane syndrome should avoid?
    A: This depends on how severely the eye alignment is affected by Duane syndrome. In general, a person who experiences double vision and/or poor depth perception should be extra careful when doing things like going up and down stairs, playing sports and crossing the street. Extra care may also be needed when looking toward the side of the affected eye. Your treating ophthalmologist can give you detailed recommendations.

    Q: Is eye surgery definitely required for Duane syndrome?
    A:
    Not necessarily. Many people with Duane syndrome don’t have any symptoms that interfere with their day-to-day lives. They are able to compensate for their lost or reduced eye movement with just a slight head turn. These people may need nothing more than long-term monitoring by their eye doctor.

    People whose symptoms are more severe—for example, people with a serious degree of eye misalignment or with a pronounced head turn—may need eye muscle surgery. Your treating clinician will work with you to determine the best next steps for your particular circumstances.

    Q: Can Duane syndrome be cured?
    A: No. There is no surgery or other treatment that can fix the missing or improperly developed cranial nerve responsible for the limited motion in the eye muscle. However, doctors can use surgery to reposition the other eye muscles—allowing them to balance better and keep the eyes in better alignment.

    Q: Are there any long-term health effects of having Duane syndrome?
    A:
    The vast majority of people with Duane syndrome do just fine—many don’t even need surgery.

    People whose Duane syndrome significantly impacts their daily lives—with symptoms like double vision, headaches and an abnormal head turn adopted in an attempt to see better—are at risk of long-term health issues without proper treatment. These problems can include:

    • ongoing headaches and double vision
    • neck soreness and stiffness (resulting from the turned head posture)
    • difficulty performing essential activities like reading and driving 

    In addition, because a more serious case of Duane syndrome can prevent initiation of normal eye contact, the right treatment is necessary to prevent problems in adolescence and adulthood, such as:

    • psychological stress
    • poor self-esteem
    • avoiding social interactions
    • challenges at school and at work
    Did you know?

    Ophthalmologists at Children’s have developed the Pediatric Vision Scanner (PVS), a device that, in a quick 2.5-second scan of the eyes, can detect strabismus, amblyopia and other serious eye conditions in children as young as 2. Read more.

    Questions to ask your doctor

    You and your family play an essential role in the treatment of Duane syndrome. It’s important that you share your observations with the treating ophthalmologist, and that you have all the information you need to fully understand the treatment team’s explanations and recommendations.

    It’s often very helpful to jot down your thoughts and questions ahead of time and bring them with you, along with a notebook, to your appointment. That way, you will have all of your questions in front of you when you meet with the treating clinician and can make notes to take home with you. Older children with Duane syndrome can be encouraged to write down questions, too.)
     
    Initial questions to ask your doctor might include: 

    • How did you arrive at this diagnosis?
    • Are there any other conditions to consider, instead of or in addition to Duane syndrome?
    • Is further testing required?
    • What type of Duane syndrome have you diagnosed?
    • What is the long-term prognosis?
    • Do you recommend surgery?
    • What are the goals of surgery – best case scenario?
    • What could go wrong with surgery?
    • What role should a parent play in the treatment of a child?
    • How should I explain the condition to others?
    • Are there certain activities to avoid?
    • Do I need to make any other changes to home and school/work routines?
    • What other resources can you point me to for more information?
    Spotlight on: Children's Neuro-Ophthalmology Service

    Children’s is one of just a handful of pediatric ophthalmology programs in the country with a service dedicated entirely to eye problems caused by neurological conditions. Learn more about our new Neuro-Ophthalmology Service.

  • Tests

    How is Duane syndrome diagnosed?
    A pediatric eye specialist can diagnose Duane syndrome by:

    • obtaining a complete medical and family history
    • conducting a full medical exam and vision exam
    • measuring the degree of misalignment in the eyes
    • testing the range of movement of both eyes
    • determining whether an abnormal head turn is used in an attempt to see better 

    In addition, the doctor may recommend referral to a primary care doctor or specialist to check for possible disorders associated with Duane syndrome by examining these areas:

    • spine
    • neck
    • hands
    • hearing
    • palate (the roof of the mouth)
    Spotlight on: E-ADVISOR

    Check out E-ADVISOR, a special resource designed for the parents of visually impaired children.

  • Boston Children's Hospital's ophthalmologic professionals have many years of expertise treating Duane syndrome and related conditions. We use minimally invasive techniques—surgical procedures that involve small incisions and miniaturized hooks—whenever possible.

    The exact course of treatment will be determined by:

    • age
    • type of Duane syndrome
    • whether there are any related disorders
    • specific symptoms
    • family preferences

    Is treatment for Duane syndrome always necessary?
    No, not always.Many people with Duane syndrome don't have any symptoms that interfere with their day-to-day lives. There is no obvious misalignment of the eyes, and patients may be able to compensate for their lost or reduced eye movement with just a slight head turn. These people may need nothing more than long-term monitoring by their eye doctor.

    When might more involved treatment be required for Duane syndrome?
    Patients whose symptoms are more severe—for example, people with a serious degree of eye misalignment, or those who can't see normally without turning their heads to the side—may need eye muscle surgery. Though no surgery can fix the improperly developed cranial nerve that is causing the limited motion in the eye muscle, doctors can use surgery to reposition the other eye muscles—allowing them to work better and keep the eyes in better alignment.

    Your treating clinician will work with you to determine the best next steps for her particular circumstances. 

    Did you know?

    U.S. News & World Report ranks Boston Children's Hospital #1 in more specialties than any other pediatric hospital in the United States. Learn more.

     

    “Aligning the Eyes” webcast
    David Hunter, MD, PhD, ophthalmologist-in-chief, led a panel discussion about a new procedure to treat Duane syndrome. Boston Children's Hospital is one of the few pediatric institutions that perform a sedated adjustable suture procedure. Learn more about this procedure and the webcast in the Children's newsroom.


    Eye muscle surgery

    Eye muscle surgery can be a very helpful treatment option for people whose daily lives are significantly disrupted by Duane syndrome. Though surgery cannot cure Duane syndrome itself, since it can't repair or replace the cranial nerve that causes the limited eye movement, it can:

    • reduce or eliminate misalignment of the eyes
    • improve or fix the abnormal head posture the person may have developed in an attempt to see better 

    Will anesthesia be required for eye muscle surgery? What are the potential risks of going under anesthesia?
    Most likely, yes; strabismus surgery usually is performed under general anesthesia. Patients and parents sometimes worry about complications from anesthesia. However, it's important to know that anesthesiology techniques have advanced a lot over the last 10 to 15 years, and Children's is home to world-renowned anesthesia experts. It is extremely rare for a patient to have any complications related to anesthesia.

    What happens during eye muscle surgery?
    Once the patient is asleep:

    • an incision is made over the white part of the eye
    • the designated muscle is separated from the eye
    • surgeons use sutures to reattach the muscle back to the eye, but in a different position

    (Don't worry – despite what you may have been told, there is no need to remove the entire eye to perform this surgery!)

    You can watch Children's doctors performing eye muscle surgery for Duane syndrome in a special webcast.

    What are adjustable sutures, and how are they used during eye muscle surgery?
    When a patient is asleep during surgery, an ophthalmologist can't always tell that the eye has responded to the repositioning of the muscle in the precise way expected. Once the patient is fully awake, the doctor may discover that the eye muscle needs to be repositioned.

    Here at Children's, we address this problem by using adjustable sutures. An adjustable suture is a kind of “slipknot” that holds the muscle in place. Adjustable sutures allow our ophthalmologists to readjust the position of the eye in the recovery room after surgery—avoiding the need to schedule additional surgery. While many (though not all) centers offer adjustable sutures to adults, only a very few centers, including Children's, have worked out the procedures for using adjustable sutures in children. Watch the adjustable suture technique in action at Children's.

    What about transposition surgery? I've read that the “vertical rectus transposition” is the best surgery for Duane syndrome. 
    Our doctors at Children's are well familiar with the potential benefits of transposition surgery for some patients with Duane syndrome. At many centers, this involves moving both the upper (superior rectus) and lower (inferior rectus) muscles over to the side of the weak muscle. In some patients this can improve the movement of the eye more effectively than surgery on only the horizontal muscles. We have recently published a technique in which only one muscle, the superior rectus muscle, needs to be moved in order to gain the benefit of the transposition. This procedure can be combined with an adjustable suture to fine tune the alignment after the patient recovers from anesthesia. 

    Will more than one eye muscle surgery be needed?
    Adjustable sutures allow us to send most patients home with their eye alignment where we want it to be. However, it's not always perfect. As the eye heals, the muscle may not reattach with the normal strength or location, allowing the eye to drift one way or another.

    About 10 to 20 percent of patients will need more surgery within three to six months of the first procedure, depending on how the eye heals. When surgery isn't completely effective the first time, we wait a few months, reassess the alignment and then go back and try again. It is very rare that we can't correct the eye misalignment in a subsequent operation. 

    Is eye muscle surgery to treat Duane syndrome considered a “cosmetic procedure”?
    Parents, other family members and friends should understand that Duane syndrome is a medical disorder—often involving serious double vision and a painful, cramped neck posture—that can and should be treated. Treatment is not a matter of vanity, but rather, a reconstructive medical intervention.

    Will insurance companies cover surgery for Duane syndrome?
    Most insurance companies do cover eye muscle surgery, because Duane syndrome is a medical condition that causes functional disability. Some programs require pre-authorization, and some programs may initially decline if they are not educated about the reasons for surgery. In these cases, Children's will contact the insurance company directly. Nowadays, it is very rare that an insurance company won't pay for this surgery. 

    What are the risks associated with eye muscle surgery?
    The risk of the eye being damaged during surgery is extremely low. Occasionally, scarring of the white part of the eye (resulting from surgery) creates a lingering problem—however, this is also rare. The main risk is that the procedure may be ineffective, or overly effective (causing the eye to go in the opposite direction.) 

    Overall, eye muscle surgery is safe and usually very effective. We always encourage our patients' family members to discuss possible risks associated with surgery directly with their treating doctors.

    What should we expect after eye muscle surgery?
    Following surgery, there will be some discomfort and blurred vision for at least a few days. The sutures, until they dissolve, might also create some irritation.

    Generally, our ophthalmologists ask patients to avoid immersing the eyes in water and to use some eye drops for a week following surgery. Some patients are back to school and normal activities a few days following surgery; others may need a week, or a little longer, if they have any lingering double vision or unusual discomfort.

    Redness in the eyes can take months to completely resolve, yet usually gets a little better every day.

    Read and download the Children's Department of Ophthalmology guide to eye surgery (.pdf file).

    Where can I learn more about Duane syndrome?
    Children's doctors have written a chapter full of technical detail about Duane syndrome and related disorders, with regularly updated information about genetic testing as well. This material is available for no charge at GeneReviews.

    You can also see a panel discussion and presentation of a Children's patient with Duane syndrome who was treated with adjustable suture surgery and a superior rectus transposition.

    Meet our patients

    Get to know some of the patients our Department of Ophthalmology has helped over the years.

    Coping and support for children and families

    When a child has a complex health condition, the family is faced with many concerns and questions. Not only must the family focus on meeting all of the child's medical needs; there is also a significant emotional and psychological challenge that can affect every member of the family.

    In addition to the clinical information offered on these pages, Children's has several other resources designed to give families comfort, support and guidance:

    • Children's Behavioral Medicine Clinic helps kids who are being treated on an outpatient basis at the hospital—as well as their families—understand and cope with their feelings about:
    • being sick
    • facing uncomfortable procedures
    • handling pain
    • taking medication
    • preparing for surgery
    • changes in friendships and family relationships
    • managing school while dealing with an illness
    • grief and loss
       
    • The Experience Journal was designed by Children's psychiatrist-in-chief David DeMaso, MD, and members of his team. This online collection features thoughts, reflections and advice from kids and caregivers about having a chronic medical condition, going through tests and procedures and many other experiences.
       
    • Children's Department of Psychiatry offers a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide” (Adobe Acrobat is required). Topics in the booklet include:
    • talking to your child about his or her condition
    • preparing for surgery and hospitalization
    • supporting siblings
    • taking care of yourself during your child's illness
    • adjusting to life after treatment
       
    • Children's Center for Families is dedicated to helping families locate the information and resources they need to better understand their child's particular condition and take part in their care. All patients, families and health professionals are welcome to use the center's services at no extra cost. The center is open Monday through Friday from 8 a.m. to 7 p.m., and on Saturdays from 9 a.m. to 1 p.m. Please call 617-355-6279 for more information.
       
    • The Children's chaplaincy is a source of spiritual support for parents and family members. Our program includes nearly a dozen clergy members—representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions—who will listen to you, pray with you and help you observe your own faith practices during your child's treatment.
       
    • Children's Integrative Therapies Team offers a number of supplemental therapies for hospitalized children, their families and their caregivers, including:
    • massage therapy
    • acupuncture
    • yoga
    • therapeutic touch
       
    • Children's International Center is a dedicated resource for patients and families from countries outside the United States. The center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the center by phone at 01-617-355-5209 or via e-mail at international.center@childrens.harvard.edu.
    For Patients and Families

    View a general guide for Children's patients and their families.

    Helpful links

    Please note that neither Boston Children's Hospital nor the Department of Ophthalmology at Children's unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.

    Helpful links for parents and families

    Helpful links for teens

    Helpful links for younger children

  • Research & Innovation

    Children’s Hospital Boston’s ophthalmologists are actively involved in research that is shaping the way disorders like Duane syndrome are detected and treated in patients around the world. At the same time, our doctors are also training fellows and residents—preparing the next generation of pediatric eye specialists. 

    Here are just a few of our current research projects: 

    Tracing the genetics behind Duane syndrome with radial ray anomalies
    One type of inherited Duane syndrome that is associated with other birth defects is Duane syndrome with radial ray anomalies. Children’s neurology researcher Elizabeth Engle, MD, and members of her laboratory have described the mapping of this disorder to Chromosome 20 and identification of the gene, SALL4, as being causative for the disorder.. Learn more.

    Understanding the genetics of misaligned eyes
    Children’s has initiated a very large, ongoing study to determine the genetic basis for childhood strabismus. Because adult strabismus is often a condition that carries over from childhood, this research is highly pertinent to sufferers of adult strabismus, as well as childhood strabismus.

    Pioneering new eye surgery techniques
    Children’s is at the forefront of developing new surgery techniques. One particular area of study is how sophisticated imagery—namely how high resolution MRI (magnetic resonance imaging)—can be used to better reveal the orbit of the eye. Such high-resolution imagery enables our surgeons to be much more precise with preoperative planning. Learn more about advances in MRI technology at Children’s. 

    Learn more about ophthalmology research at Children’s.

    Clinical trials

    Children’s is known for pioneering some of the most effective diagnostic tools, therapies and preventive approaches in pediatric medicine. A significant part of our success comes from our commitment to research—and to advancing the frontiers of mental health care by conducting clinical trials.

    Children’s coordinates hundreds of clinical trials at any given time. Clinical trials are studies that may involve:

    • evaluating the effectiveness of a new drug therapy
    • testing a new diagnostic procedure or device
    • examining a new treatment method for a particular condition
    • taking a closer look at the causes and progression of specific diseases

    While children must meet strict criteria in order to be eligible for a clinical trial, your child may be eligible to take part in a study. Before considering this option, you should be sure to:

    • consult with your child’s treating physician and treatment team
    • gather as much information as possible about the specific course of action outlined in the trial
    • do your own research about the latest breakthroughs relating to your child’s condition

    If your physician recommends that your child participate in a clinical trial, you can feel confident that the plan detailed for that study represents the best and most innovative care available. Taking part in a clinical trial at Children’s is entirely voluntary. Our team will be sure to fully address any questions you may have, and you may remove your child from the medical study at any time.

     

    Current research projects in Ophthalmology

    Check out some of our researchers’ latest work.

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This department is currently not accepting appointment requests online. Please call us at: 617-355-6000. International +1-617-355-6000.

This department is currently not accepting appointment requests online. Please call us at: 617-355-6000. International +1-617-355-6000.

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The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
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