Moyamoya Disease Program

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?

 

Answers

• 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.