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Moyamoya Disease - Symptoms, Diagnosis and Treatment

  • When we hear that someone has had, or is at risk for, a stroke, we tend to immediately picture an older person. “After all,” we may think, “a stroke is something our parents and grandparents might face—not our children.” Unfortunately, pediatric stroke is a very real risk for many kids with certain cerebrovascular disorders, including Moyamoya disease.

    Moyamoya disease, which is also known as Moyamoya syndrome, is a rare but very serious condition in which the walls of the internal carotid arteries—the vessels that supply blood to important areas of the brain—become thickened and narrowed. This causes the flow of oxygen-rich blood to the child's brain to gradually slow down, and makes it more likely that a blood clot will form.

    This reduced blood and formation of blood clots are major risk factors for either a transient ischemic attack (TIA) also called a “mini-stroke,”or a full-fledged stroke. 

    • “Moyamoya” means “puff of smoke” in Japanese. The disease gets its name from the wispy, tangled appearance of the new blood vessels that emerge in the brain (as the body attempts to compensate for the inadequate blood supply).
       
    • Moyamoya disease is a progressive condition, meaning that symptoms worsen over time and the child's chances of suffering a stroke increases.
       
    • The only proven treatment for is surgery to create a healthy, adequate new supply of blood for the impacted areas of the brain.
       
    • Boston Children's Hospital is one of the only centers in the world with expertise in treating Moyamoya disease. Our doctors have invented a highly effective surgical procedure called pial synangiosis to introduce a sufficient new source of blood vessel growth. 

    The detailed information on the following pages will help you gain a better understanding of Moyamoya disease, and will provide a clearer picture of what lies ahead.

    How Children’s Hospital Boston approaches Moyamoya disease

    Children’s has a long and distinguished history of caring for children with complex diseases and disorders of the brain, spine and central nervous system. Experts in our Department of Neurosurgery are regarded as an international leaders in understanding and treating pediatric Moyamoya disease, and we have a specialized program devoted entirely to this rare but life-threatening disorder.

    The only treatment for Moyamoya disease that’s proven to be effective in the long term is surgery. Children's neurosurgeon R. Michael Scott, MD, has pioneered a surgical procedure called  pial synangiosis that directly affixes a healthy donor artery to the affected area of a patient’s brain. In 1985, Scott performed the first of these surgeries on a child with Moyamoya disease. Over the past 25 years, he and Edward Smith, MD, director of Pediatric Cerebrovascular Surgery at Children’s, have used the pial synangiosis procedure to treat more than 400 patients with Moyamoya.  

    Groundbreaking surgery for Moyamoya disease
    Watch a webcast of an actual pial synangiosis procedure here at Children’s.



    Moyamoya disease: Reviewed by Edward Smith, MD
    © Children’s Hospital Boston, 2011


  • While Moyamoya disease is quite rare—only a few hundred children worldwide are diagnosed with the disease each year—it is a life-threatening condition that calls for immediate attention by an experienced neurosurgical team. 

    Here in Children’s Hospital Boston’s Moyamoya Disease Program, we treat patients of various ages; while the average age at which a child is diagnosed with Moyamoya is 7, children of all ages can develop the disease, as can adults. Some children with Moyamoya have other medical conditions, like Down syndrome, sickle cell disease and neurofibromatosis, and our clinicians work closely with specialists throughout the hospital to deliver comprehensive, multidisciplinary care. 

    Moyamoya disease: The basics

    • The disease process begins when the internal carotid arteries—the major vessels that provide nourishing blood to important areas of the child's brain—become thickened and narrowed.
       
    • When the carotid arteries are compromised, blood flow becomes dangerously slowed and clots may form—significantly increasing the chances of a transient ischemic attack (TIA), also known as a “mini-stroke,” or a full-fledged stroke.
       
    • The child's brain attempts to compensate for the reduction in blood flow by gradually generating “detours”—the growth of thin, small blood vessels throughout the affected areas.
       
    • These vessels look like a tangled wisp of smoke on an angiogram—a map of the arteries or veins in a certain area of the body—giving the disease its name: “Moyamoya” translates to “puff of smoke” in Japanese.
       
    • Because Moyamoya disease becomes progressively more severe over time, children with the condition will eventually need surgery to restore normal and healthy blood flow to their brains and reduce the likelihood of a stroke.
       
    • Pial synangiosis, a surgical procedure developed by Children's neurosurgeon R. Michael Scott, MD, more than 25 years ago, has proven to be highly effective treatment for Moyamoya disease. Children’s research has shown that, in all patients treated with pial synangiosis here in our Moyamoya Disease Program, the incidence of strokes has dropped from more than 67 percent to less than 7 percent.
    One patient's story
    Get to know a Children's patient who refuses to let Moyamoya disease slow him down.

    Causes 

    What causes Moyamoya disease in children?
    Because Moyamoya disease is so rare, and information about the progression the disease is limited, its causes are still not fully understood. Experts believe that a variety of factors—ranging from genetic defects to traumatic injury—may trigger the narrowing process in the brain's carotid arteries. However, investigation to pinpoint an exact cause is still ongoing, and in at least half of all known cases of Moyamoya, the disease have no identifiable cause.

    Gender and ethnicity factors
    Moyamoya disease is slightly more common in girls than in boys, and somewhat more common in children of Asian descent than in other ethnic backgrounds.

    Genetic factors
    About 7 percent of children with Moyamoya disease are believed to have an inherited gene defect. 

    Associated disorders
    Some children with Moyamoya disease also have another condition, such as:

    This suggests that an inherited, defective blood vessel structure may be linked to Moyamoya.

    Stay up to date on Children’s continuing research into the causes of Moyamoya disease.

    Signs and symptoms 

    What are the symptoms of Moyamoya disease?
    Children with Moyamoya disease usually show symptoms consistent with a stroke, such as:

    • weakness on one side of the body
    • blurry or otherwise affected vision
    • slurred speech
    • headaches
    • seizures, especially when they occur in a child with no prior history of a seizure disorder

    These symptoms can either emerge gradually and subside over time, or develop suddenly and persist. 

    Rarely, a child with Moyamoya may have a brain hemorrhage—bleeding in the brain—but hemorrhaging is much more likely to occur in adults with Moyamoya disease. Warning signs of a brain hemorrhage can include:

    • nausea
    • vomiting
    • fatigue and lethargy
    • changes in vision
    • severe headache
    • numbness in part of the body

    You should seek immediate medical treatment if your child exhibits any of the above warning signs.
     

    FAQ 

    Q: At what age do Moyamoya symptoms typically emerge?
    A:
    Though 7 years is the average age of diagnosis, Moyamoya disease can affect people of any age. 

    Q: Are there different types of Moyamoya disease?
    A: Yes. The childhood form of the disease causes stroke symptoms, such as slurred speech, headaches and seizures

    Young adults and older people with Moyamoya may also have the hemorrhagic form of the disease, in which a brain hemorrhage—bleeding in the brain—is a symptom. 

    Here at Children’s Hospital Boston, we’ve compiled data suggesting that it’s very rare for someone with childhood Moyamoya disease to develop the hemorrhagic form later in life. 

    Q: Will my child be OK?
    A: 
    The long-term outlook for a child with Moyamoya disease depends very much on his individual circumstances, including:

    • his symptoms at the time he is diagnosed
    • whether one or both sides of his brain are affected
    • whether he has already suffered a transient ischemic attack (TIA) or stroke
    • his overall health
    • how soon he receives surgical treatment after diagnosis 

    Your child’s treatment team can give you detailed information on his particular situation, and can recommend the best course of action. 

    Q: Is it possible that my child’s Moyamoya disease will go away on its own?
    A:
    No. It’s important for families to understand that Moyamoya disease is a progressive condition: the dangerous narrowing in the brain’s blood vessels continue to worsen. Some children’s symptoms become gradually more severe over months, or even years, but others suffer multiple transient ischemic attacks (TIAs) or strokes in a relatively short period of time. Surgery to provide a new, healthy source of blood flow to the brain is a must to reduce the likelihood of a potentially life-threatening stroke. 

    The good news is that the children and adults we have treated surgically have had an excellent rate of recovery. Learn more about how Children’s treats Moyamoya. 

    Q: What do I need to look out for once my child has been diagnosed with Moyamoya disease?
    A:
    Parents of children with Moyamoya disease should be watchful of any symptoms that suggest a possible stroke. These include:

    • blurry or otherwise abnormal vision
    • weakness or paralysis on one side of the body
    • loss of sense of smell or taste (often in just one side of the nose or mouth)
    • difficulty speaking or inability to speak
    • inability to stand upright
    • inability to walk
    • seizures, especially if the child has no prior history of seizure activity

    Though the hemorrhagic form of Moyamoya disease is much more common in adults than in children, you should also keep an eye out for possible warning signs of a brain hemorrhage (bleeding in the brain) in your child. Symptoms can include:

    • severe headache
    • sudden loss of consciousness
    • loss of coordination or balance
    • fatigue or lethargy
    • nausea or vomiting
    • changes in vision
    • weakness, tingling or numbness, especially in an arm or leg
    • difficulty understanding speech
    • difficulty speaking
    • complaints of a “strange” taste in the mouth
    • seizures, especially if the child has no prior history of seizure activity

    You should always seek immediate medical help if your child experiences any of these symptoms.

    Q: Should my child’s physical activity be restricted?
    A:
    Symptoms of Moyamoya disease are often brought on, or made worse, by activities that can lead to hyperventilation (over-breathing), a drop in blood pressure or dehydration—all risk factors for a stroke.

    To lessen the risk of stroke, activities should be restricted—especially strenuous play or sports than can cause overexertion. Your clinician can make more detailed recommendations for your child.

    Q: Can adults develop Moyamoya disease? How is the condition different than in kids?
    A:
    Though the average age of a person with Moyamoya disease when they are first diagnosed is 7, the disease can also develop in older children, adolescents and adults.

    Adults may have the hemorrhagic form of Moyamoya. Based on the evidence we have collected here at Children’s, it appears very unlikely that a child with Moyamoya disease will develop the hemorrhagic form later in life.

    Our Moyamoya Disease Program treats adults as well as children. Contact us to request an appointment, second opinion or consultation. 

    Q: How long has Children's been treating Moyamoya disease?
    A:
    In 1985, Children’s neurosurgeon R. Michael Scott, MD, performed the first pial synangiosis procedure—which he developed—for a child with Moyamoya disease. Since that time, he and colleague Edward Smith, MD, director of Pediatric Cerebrovascular Surgery at Children’s, have treated more than 400 patients with the condition. Pial synangiosis surgery remains the mainstay of treatment for Moyamoya disease at Children’s. 

    Q: Why is surgery the recommended treatment for Moyamoya disease?
    A:
    Moyamoya disease is a progressive condition: The degree of narrowing in the brain’s blood vessels only grows more pronounced over time, as will the associated symptoms and the risk of a potentially fatal stroke.

    To combat this dangerous process, a new source of nourishing blood vessels must be found. Surgery is necessary to introduce new vessels and restore healthy blood flow to the brain. 

    Q: Why does Children’s recommend the pial synangiosis procedure, in particular?
    A:
    Since the pial synangiosis procedure was first developed at Children’s more than 25 years ago, we have used the operation to successfully treat more than 400 children and adults with Moyamoya disease. 

    Pial synangiosis is particularly effective because it:

    • uses a wide opening of all of the membranes covering the brain
    • directly attaches the donor artery to the brain surface, promoting more rapid development of arterial ingrowth to nourish the child’s brain
    • takes advantage of the tendency of the brains of children with Moyamoya disease to attract new blood vessels from any source that is made available by the surgeon

    Most children who have pial synangiosis are released from the hospital within a few days, and usually need only regular exams and monitoring as follow-up. 

    Q: How likely is it that my child will suffer a stroke during surgery?
    A: Based on more than 400 patients with Moyamoya disease who have undergone pial synangiosis surgery at Children’s, it’s estimated that four to seven percent will suffer a new stroke either at the time of surgery or within the first month after the operation. These strokes can range from mild transient ischemic attacks (TIAs) (“mini-strokes”) to more severe episodes.

    It’s important to note that most of the Children’s patients who suffered strokes during or after the procedure were already experiencing serious neurological symptoms—including frequent TIAs or strokes—in the weeks or months leading up to their surgery. We believe that patients with this type of history are at greater risk, and as a result, we will typically wait four to six weeks after any stroke episode before proceeding with surgery.

    Nearly all of the Children’s patients who suffered a stroke at the time of, or just after, surgery have gone on to make excellent recoveries. 

    Q: Is the rest of my family at risk for Moyamoya disease? Should my child’s siblings be screened?
    A:  Inherited Moyamoya disease appears to be quite rare in the Western hemisphere. If your family doesn’t have a history of strokes, we don’t usually recommend screening siblings of children with Moyamoya disease for the condition. (However, if one of your children is experiencing either warning signs of a stroke—like severe headaches or seizures—or an actual TIA or stroke, you should seek immediate medical treatment, including screening for Moyamoya.)

    We do recommend screening in these cases:

    • identical twins of children with Moyamoya disease
    • siblings of children with Moyamoya disease, in families with a history of early stroke

    Q: Does Children’s recommend/offer genetic testing for Moyamoya disease?
    A:
    There is no current method of determining before birth whether a baby is likely to have Moyamoya disease.

    Even if a reliable prenatal test for Moyamoya existed, no one knows exactly when the process of blood vessel narrowing begins in the brain. It’s possible that any test administered during pregnancy or in the first year of the baby’s life would not be able to detect the potential presence of Moyamoya disease.

    Q: Can my child go on to live a normal adult life, including having a family?
    A: While the rarity of Moyamoya disease—and the relative newness of surgical advances like pial synangiosis—means data on long-term outcomes is somewhat limited, the results we have seen here at Children’s are very encouraging.

    In our Moyamoya Disease Program, we continue to track the progress of all of our patients, dating back to the first pial synangiosis procedure in 1985. The vast majority of the 400-plus patients treated for Moyamoya disease at Children’s have done exceedingly well: More than two-thirds are leading normal, active adult lives today, with no noticeable neurological problems.

    In addition, several of the children we treated in the 1980s and 1990s now have families of their own. This includes many women who have experienced uncomplicated pregnancies and deliveries.

    Questions to ask your doctor

    You and your family play an essential role in your child’s treatment for Moyamoya disease. It’s important that you share your observations and ideas with your child’s treating physician, and that you have all the information you need to fully understand the treatment team’s explanations and recommendations.

    You’ve probably thought of many questions to ask about your child’s symptoms and prognosis. 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 child’s appointment. That way, you will have all of your questions in front of you when you meet with your child’s treating clinician and can make notes to take home with you. (If your child is old enough, you can encourage him or her 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 my child might have instead?
    • Does my child require further testing or procedures?
    • How extensive is the blood vessel narrowing in my child’s brain? Are both sides of the brain affected?
    • Should my other children be screened for Moyamoya?
    • What medications will you prescribe and what are the possible side effects?
    • Should my child's physical activities be restricted?
    • Will my child need surgery immediately?
    • Do you recommend pial synangiosis or another procedure, and why?
    • What role should I play in my child’s treatment?
    • How should I talk to my child about Moyamoya disease and the long-term outlook?
    • How should I explain my child’s condition to others?
    • Do I need to make any other changes to my child’s home and school routines?
    • What other resources can you point me to for more information?

    Helpful links

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

    Information about associated conditions

    Did you know?
    You can keep family and friends up to date during your child’s treatment by creating a free Children’s Carepage.
  • How is Moyamoya disease diagnosed?
    Here at Children’s Hospital Boston, our clinicians may use the following imaging technologies to help diagnose, or confirm a diagnosis of, Moyamoya disease:

    • Magnetic Resonance Imaging (MRI), which uses large magnets to take detailed pictures of organs, bones and tissues
    • Magnetic Resonance Angiogram (MRA), which uses MRI technology to “map” the child’s blood vessels
    • Computed Tomography (CT) scans, which use x-rays to generate three-dimensional images of bones, tissues and blood vessels

    However, the standard test for both diagnosing Moyamoya disease and planning for surgery is a cerebral angiogram, a minimally invasive procedure that produces a “map” of your child’s carotid arteries. During an angiogram, a special dye that shows up on x-rays is injected into the artery. The dye creates a contrast effect in the images, which allows clinicians to see both the extent of narrowing in the brain’s blood vessels and the tangle of thin, new vessels generated by Moyamoya disease.

    Did you know? The practice of pediatric neurosurgery has roots at Children's
    In 1929, Children’s physicians Harvey Cushing, MD, and Franc Ingraham, MD, established the Department of Neurosurgery at the hospital—marking the introduction of pediatric neurosurgery as a formally recognized field. Today, Children’s is one of the only pediatric hospitals in the world with full clinical programs devoted to rare illnesses like Moyamoya disease.
  • Medication

    While surgery is the only viable treatment for Moyamoya disease in the long term, your doctor may also recommend medication to manage some of your child's symptoms. 

    Anti-clotting drugs (aspirin)
    Since the slowing of blood flow within the brain's narrowed arteries can cause transient ischemic attacks (TIAs) (“mini-strokes”) and strokes in children with Moyamoya disease, medicines that prevent the formation of blood clots are vital. Aspirin is the most commonly prescribed anti-clotting drug, and Children's Moyamoya Disease Program clinicians recommend that all children with Moyamoya take aspirin throughout their lives.

    Calcium channel blockers
    Calcium channel blockers, such as verapamil, are also often prescribed for children with Moyamoya disease. These drugs stop calcium from entering the cells of the heart and blood vessel walls, lowering blood pressure. The decrease in blood pressure can help reduce the severe headaches and TIAs experienced by many children with Moyamoya. 

    However, these medications should be used with caution, as too low of a blood pressure can be dangerous. Always speak to your treating clinician for guidelines and precautions involved in taking medication.

    Medication manages symptoms, but is not a cure
    Parents often ask whether steroids or other anti-inflammatory medications can be helpful in treating Moyamoya disease. However, Children's Moyamoya Disease Program does not recommend these drugs: There is no evidence to suggest that any inflammation process occurs in the blood, arteries or cerebrospinal fluid of children with Moyamoya.

    Again, it's important to emphasize that no medication can stop either the progression of narrowing in the brain's blood vessels or the development of the thin, fragile vessels that characterize Moyamoya disease. Surgery is the mainstay of treatment for Moyamoya.

    Surgery

    Several surgical treatments for Moyamoya disease have been very effective at bypassing narrowed arteries and creating a new blood supply for the affected areas of the brain, decreasing the likelihood of a stroke.

    Every potential surgery involves many technical considerations, as well as possible advantages and disadvantages. You should always discuss your questions and concerns about surgery with your child's treating clinician. Ask the neurosurgeon why a particular procedure is recommended, and what the results have been for patients who have undergone that type of operation. 

    Indirect procedures

    Some procedures for Moyamoya disease are considered indirect surgeries, meaning that they encourage and introduce new blood vessel growth to the brain over time.

    Examples of these procedures are:

    • EDAS (encephaloduroarteriosynangiosis), in which the superficial temporal arteryin the child's brain is laid over an opening in the cortex. The artery is then sewed to the dura (the firm layer of tissue that covers the brain). Over time, small new arterial vessels begin to develop.
    • EMS (encephalomyosynangiosis), in which small portions of temporalis musclea major muscle in the jaw that allows it to closeare attached in a parallel direction to the surface of the child's brain. The transplanted muscle gradually generates new blood vessels, forming a supplementary source of blood flow to the brain.
    • omental transposition/transfer, in which the child's omentum—the blood-rich lining that surrounds the organs in the abdomen—is laid over the surface of the brain. New vessels eventually develop and grow into the brain.
    • dural inversion, in which neurosurgeons invert (reverse the position of) the flaps of fibrous dural tissue on the child's meningeal vessel, a large artery within the skull. This places the outer dural surface, which has plentiful blood vessels, in direct contact with the parts of the brain that were previously deprived of essential blood flow. 

    Direct arterial bypass

    The direct arterial bypass surgery is also known as superficial temporal to middle cerebral artery anastomosis or STA-MCA bypass. During this procedure, neurosurgeons join a blood vessel from the child's scalp directly to a vessel in the brain. Blood flow throughout the brain should improve over the next several months.

     

    Pial synangiosis

    Pial synangiosis is the mainstay of surgical treatment in Children's Moyamoya Disease Program. Our neurosurgeon, R. Michael Scott, MD, developed the procedure, and both Dr. Scott and Edward Smith, MD, have been performing this surgery—with excellent results—for years. 

    How does the surgery work? What happens during the operation?
    Pial synangiosis is designed to take advantage of the tendency of the brains of children with Moyamoya disease to attract new blood vessels from any source that is made available by the surgeon. During the procedure, the neurosurgeon:

    • makes an incision in the child's scalp, exposing a healthy blood vessel in the scalp
    • separates the scalp vessel from the surrounding tissue while ensuring that blood continues to flow through it
    • opens a window of bone beneath the artery
    • uses a microscope to carefully open each of the brain's coverings, eventually exposing the surface of the brain
    • places the scalp artery directly onto the brain
    • sews the tissues surrounding the artery's walls to the surface of the brain, using tiny sutures; this keeps the transplanted artery in direct contact with the brain
    • replaces the window of bone and closes the incision in the skin

    How long does the surgery take?
    The procedure usually takes three to four hours (longer if both sides of the brain require surgery). 

    Why does pial synangiosis work?
    Pial synangiosis works because:

    • It stimulates the development of new blood vessels that grow from the donor scalp artery, providing a vital source of blood to the brain beneath.
    • The new blood vessels emerge not only from the transplanted scalp artery, but also from blood vessels sprouting from the coverings of the brain around the opening in the skull.

    It's still not fully understood why these new blood vessels emerge and flourish. Children's researchers have discovered that the cerebrospinal fluid that flows over the brains of children with Moyamoya disease may have certain growth factors that prompt new blood vessel development.

    Learn more about our ongoing research, and watch an actual pial synangiosis procedure at Children's.

    Preparing for pial synangiosis surgery

    Most children undergoing pial synangiosis are admitted to Children's the night before surgery. They receive intravenous (IV) fluids to ensure that the volume of fluid within their body's blood vessels remains sufficient. 

    Care and follow-up after surgery 

    The night after pial synangiosis surgery, a child stays in the Intensive Care Unit (ICU) at Children's. She is then be transferred to a patient floor for three to four days.

    There are no restrictions on airplane travel after pial synangiosis, so children and their families can usually return home a week after surgery. The sutures in the child's skin will dissolve on their own, and don't require removal.

    Long-term care and follow-up

    If distance permits, patients are asked to come back to Children's four to six weeks after undergoing surgery. Many families, however, live too far away for an office visit in Boston to be practical, so a visit to the child's local neurologist can serve as a substitute.

    We ask all of our patients to have a follow-up cerebral angiogram a year after surgery—ideally, here at Children's. This evaluates how well the surgery has been working and establish a baseline for the child's treatment going forward. Your child will also likely have another MRI and MRA, and your neurosurgeon will discuss next steps with you.

    Restrictions on activities

    Once your child has had surgery for Moyamoya disease, her exercise should be restricted until new blood vessels have begun to grow in the brain. Your treatment team will carefully explain this to you, but as a basic guideline:

    • Kids can usually return to school and regular activities within two to four weeks after surgery, but cannot participate in gym class, sports or other strenuous activities for three months.
    • Under careful medical supervision, kids can gradually return to physical activities over a three- to six-month period.
    • The area of the surgical incision on the head must always be protected against trauma during any activity—for example, by wearing a helmet for bike riding and baseball. “Heading” the ball in soccer is not permitted until six months after surgery and clearance by the medical team. 

    Even after returning to normal activities, a child's fluid intake should always be monitored to prevent dehydration. Read more about keeping your child properly hydrated (Adobe Acrobat required). 

    Help for kids dealing with the stress of an illness
    The Behavioral Medicine Clinic at Children's helps kids and families deal with anxiety, sadness and fears about their illness, medical and surgical procedures and long-term care. Call 617-355-6688 to learn more.

    Coping and support 

    When your child has a serious condition like Moyamoya disease, your family is dealing with many different concerns and worries. Not only are you focused on meeting all of your child's medical needs; you are also grappling with a significant emotional and psychological toll that affects every member of your family.

    In addition to the clinical information offered on this page, Children's has several other resources designed to give your family comfort, support and guidance. 

    Resources at Children's Hospital Boston

    • 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 for Families 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 hospital's Complex Care Services provides care for children with complex medical conditions in both inpatient and outpatient settings. CCS partners with the child's family, primary care physician and treatment team specialists to ensure comprehensive, coordinated and centralized medical care. Please call 617-355-6162 for more information.
       
    • Children's Behavioral Medicine Clinic helps children 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
       
    • For children and families affected by life-threatening illness, our Pediatric Advanced Care Team (PACT) is available to provide supportive treatments intended to optimize the quality of life and promote healing and comfort. In addition, PACT can provide emotional support and help arrange end-of-life care when necessary. Please call 617-632-5042 for more information.
       
    • 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 living with a variety of medical conditions, the “befores” and “afters” of surgery and going through many other medical experiences.
       
    • Children's Psychiatry Consultation Service provides several services, including:
    • short-term therapy for children admitted to one of the hospital's inpatient units
    • parent and sibling consultations
    • teaching healthy coping skills for the whole family
    • educating members of the medical treatment team about the relationship between physical illness and psychological distress
       
    • Children's Department of Psychiatry offers a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide.” (Adobe Acrobat required to view and download) Topics in the booklet include:
    • talking to your child about her condition
    • preparing for surgery and hospitalization
    • supporting siblings
    • taking care of yourself during your child's illness
    • adjusting to life after treatment
        
    • 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 International Center is a 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
    General guide for patients and families
    Read our guide to essential information across the hospital.

     

    Did you know?
    Children's has an Integrative Therapies Team, offering services like therapeutic touch, massage therapy, Reiki and more.
  • At Children’s Hospital Boston, our care is informed by our research, and our discoveries in the laboratory strengthen the care we provide at each child's bedside. Children’s scientific research program is one of the largest and most active of any pediatric hospital in the world. In particular, our neurology and neurosurgery researchers are yielding crucial insights into the causes and development of brain disorders, paving they way for the promising new treatments.

    Learn more about ongoing research efforts in Children's Neurobiology Program. 

    Among our current research projects with promise for treating Moyamoya disease and pediatric stroke are: 

    • Evaluating possible growth factors in blood, cerebrospinal fluid
      Children’s neurosurgeon Edward Smith, MD, and his colleagues are studying molecular compounds and growth factors in blood and in cerebrospinal fluid. They believe that these growth factors may yield crucial insights into the causes and progression of Moyamoya disease, and may lead to new therapies not only for that disorder, but also for cancer and other conditions involving the proliferation of blood vessels.
       
    • Considering possible non-surgical treatments for Moyamoya
      Dr. Smith is also working to determine whether new drug therapies may provide a reasonable alternative to surgery for children with Moyamoya disease. Learn more about this work.
       
    • Identifying biological warning signs for Moyamoya disease
      Our researchers are working to identify telltale proteins in blood and urine that could serve as early “warning signals” for the presence of Moyamoya disease. Stay up to date on the team’s efforts.
       
    • Understanding the role of certain proteins in Moyamoya, other disorders
      Dr. Smith is investigating whether specific molecules may be culpable in the onset of several diseases of the central nervous system, including Moyamoya disease, brain tumors and vascular malformations of the brain.

    Learn how you can support Moyamoya disease research at Children’s.

    Clinical trials 

    Children’s is known for pioneering some of the most effective diagnostic tools, therapies and preventive approaches in neurosurgery. A significant part of our success comes from our commitment to research—and to advancing the frontiers of pediatric 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 

    Children’s is involved in several multi-site clinical trials and studies focusing on pediatric neurology and neurosurgery, in particular. 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 

    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. 

    Spotlight on: Stem cells
    Learn how Children’s is using stem cells in the fight against brain disorders.
  • David's story

    David Youngerman leads a happy, healthy life. According to his mom, Michelle Marengo, he likes everything from soccer to snow skiing, drawing to traveling. He's a busy young man, but he still finds time to participate in Boston Children's Hospital's annual pledge walk.

    David's commitment to the hospital is highly personal. Children's diagnosed him with Moyamoya—a rare cerebrovascular disease caused by blocked arteries at the base of the brain. It revealed itself one sunny September day in 2003, when he was just 5 years old. David's left arm suddenly went numb in the car after soccer practice.

    David Youngerman

    Michelle remembers: "I could see him slumping to one side. Then his speech began to slur, and I checked the rearview mirror again and his mouth was drooping on the left side." David was having a small stroke.

    A series of tests found nothing wrong, but David's pediatrician referred him to Children's, where his case fell into the capable hands of neurosurgeon Michael Scott, MD. Amazingly, Scott was one of only two doctors in the country who could perform the eight-hour brain surgery that saved David's life.

    David and his mom both know that innovative, life-saving care comes at a cost and that philanthropy can make miracles happen. "David sure understands what happens at hospitals and why kids need them so badly," says Michelle about her son's energy for fundraising.

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