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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
How can I schedule an initial appointment with the Boston Children's Moyamoya Disease Program?
What if I don't have a referral for my child's appointment?
What should I tell my child before his appointment?
What should I bring to my child's appointment?
I would like copies of my child's x-rays, MRIs or CT scans taken at Boston Children's. How can I request these?
I received a bill for my child's Moyamoya Disease Program appointment. Who should I call with 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:
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
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
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.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”