Moyamoya Disease Program
Resources for patients and families
Learn more about treatment for Moyamoya Disease
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. To learn more about Moyamoya Disease and its treatment at Boston Children's Hospital, watch our video from the operating room.
Resources and support for Moyamoya disease
When your child is diagnosed with Moyamoya disease, the tests, terms and questions can seem endless—and sometimes overwhelming. Browse through the sections below for some helpful information that can give you the answers, advice and support you're looking for.
Your child’s Moyamoya Disease Program appointment
Frequently Asked Questions
What if I have to reschedule my child’s appointment?
My child’s health problems can be overwhelming. Does Boston Children’s offer a service to help me find the information and additional support I may need?
Q: How can I schedule an initial appointment with the Boston Children’s Moyamoya Disease Program?
A: You can make your first appointment by calling us at 617-355-6011 or by using our online "Request an appointment" form.
Please be sure you have the following information on hand:
- your child’s full name, address, and date of birth
- your (or, if you are not the child’s parent/legal guardian, the official guardian’s) full name, address, phone number and relationship to the child
- your insurance provider’s name(for example, Blue Cross Blue Shield of Massachusetts), the name of the specific plan covering the child (for example, HMO Blue), and your subscriber identification number
- the name, address, and phone number of your child’s primary care physician
- the name, address, and phone number of your child’s referring physician (if different from the primary care provider)
a basic summary of your child’s symptoms and medical history, including any prior surgeries or treatment procedures
Q: What if I don’t have a referral for my child’s appointment?
A: If you don’t have a referral from your child’s primary physician, you may be asked to reschedule your initial Moyamoya Disease Program appointment until the referral comes through.
Or, you will have the option to sign a waiver and pay a $250 waiver fee. (We recommend that you pay the waiver fee by check or credit card, as this will make stopping payment easier should you get a referral by the next business day after your child’s appointment. We are able to refund your waiver fee if you call us at 617-355-6015 with the necessary referral information by noon the next business day).
If you get a referral more than 24 hours after your child’s appointment, you will have to wait for your insurance company to pay for the claim. This may take up to 90 days. Your waiver fee will be automatically returned to you once the insurance company pays the claim. (Unfortunately, since this process is fully automated, we are unable to expedite the return of the fee.) If, after 90 days, you still have not received your refund, please call our billing company at 1-800-853-8110.
Q: What should I tell my child before his appointment?
A: Your child’s age and individual circumstances may determine which information (and the amount of information) you choose to share before the initial -appointment. Guidelines for a beneficial conversation might include:
- explaining that the doctor you will be meeting is going to help find the best treatment so your child can feel better
- visiting the Children’s web site and taking a "virtual tour" of the hospital with your child
- reassuring your child that you will be there throughout the appointment
encouraging your child to ask any questions that come to mind, both before and during the appointment
Q: What should I bring to my child’s appointment?
A: When you make your initial appointment, a member of the Moyamoya Disease Program staff will go over everything you’ll need on the day of your visit. A good checklist of take-along items should include:
- the name of the doctor you will be seeing
- the name and floor of the Children’s building you will be visiting
- the name and telephone number of your referring physician
- your insurance card(s)
- co-payment for your insurance, if applicable
- referrals or authorizations from your child's primary care doctor's office, if applicable
- all medical or personal records, such as x-rays or lab tests, pertaining to your child’s condition
- a list of your child's medications
- a list of questions you have for the doctor and staff (if appropriate for your child's situation and maturity, you may want to have him or her come up with questions that he or she is curious about)
- your child's and your Social Security numbers (for insurance purposes)
- any forms mailed to you by the Moyamoya Disease Program
books, games, snacks, formula, diapers, a change of baby clothes or other necessities (please do not bring food if your child must fast for testing)
Q: I would like copies of my child’s x-rays, MRIs or CT scans taken at Boston Children’s. How can I request these?
A: All requests for films taken at Boston Children’s need to go through the hospital’s film library. You may be charged a fee, depending on the number of copies you need. Please call the film library at 617-355-6283 to place an order.
Q: I received a bill for my child’s Moyamoya Disease Program appointment. Who should I call with questions?
A: Please call 617-355-3397 with questions about billing.
Q: What if I have to reschedule my child’s appointment?
A: If you need to reschedule an appointment, please use the list below to call the designated number for your child’s neurosurgeon. (Please give at least 24 hours’ advance notice whenever possible.)
- Dr. R. Michael Scott: 617-355-6011
Dr. Edward Smith: 617-355-8414
Q: My child’s health problems can be overwhelming. Does Boston Children’s offer a service to help me find the information and additional support I may need?
A: Our Center for Families is dedicated to helping families find the information and resources they need to better understand their child’s medical condition and take part in their care. All patients, families and 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.
Information and support for parents and families
Please note that neither Boston Children’s Hospital nor the Moyamoya Disease Program at Boston Children’s unreservedly endorses all of the information found at the sites listed below. These links are provided as a resource.
- Children’s Hemiplegia & Stroke Association
- Genetic and Rare Diseases Information Center
- Madison’s Foundation
- MUMS: National Parent-to-Parent Network
- National Institute of Neurological Disorders and Stroke
- National Organization of Vascular Anomalies
Pediatric Stroke Network
For patients and families outside the United States
Boston Children's International Center is a dedicated resource for patients and families from countries outside the United States. The center:
- facilitates the medical review of patient records
- assists with scheduling appointments
- provides assistance with customs and immigration
- helps coordinate transportation
- assists with arranging hotel lodging and other housing accommodations
You may contact the International Center by phone at 01-617-355-5209 or via e-mail at firstname.lastname@example.org.
Patient resources at Boston Children's
Boston Children’s Clinical Genetics Program provides diagnostic services and genetic counseling for patients and families with birth defects and other developmental problems. Call 857-218-4637 to learn more.
The hospital’s Complex Care Services deliver essential medical care to children with birth defects, genetic disorders and other multifaceted health care needs. Call 617-355-6162 for more information.
Boston 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
grief and loss
The Experience Journal was designed by Boston 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 going through many types of medical experiences.
Boston Children’s Psychiatry Consultation Service is comprised of expert and compassionate pediatric psychologists, psychiatrists, social workers and other mental health professionals who understand the unique circumstances of hospitalized children and their families. The team provides several services, including:
- short-term therapy for children admitted to one of our 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
- Boston Children’s Department of Psychiatry offers a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide”. (Adobe Acrobat 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
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 Boston 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.
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.
- Boston 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 email@example.com.
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