Deciding when to come to the clinic

The Williams Syndrome Clinic at Children's Hospital, Boston is available as a resource to your child throughout major developmental milestones. Most families choose to come to the visit soon after their child is diagnosed. After the initial visit, or if your child is diagnosed in infancy, you may follow the timeline below in deciding when to come to the clinic.

  Infancy       Toddler      Childhood    Pre-Teen      Adolescence
|------------|-------------|-------------|--------------|------------------|                                                                        

INFANCY: Given the recent availability of clinical testing, many children are diagnosed with Williams Syndrome in infancy. If your child is diagnosed within the first twelve months of life, there is not a pressing need to have a full clinical workup. However, it is important that your child has a medical examine.

TODDLER: It is recommended that your child come in for his or her initial clinic visit. This is an important time as your child begins to approach many early developmental milestones such as walking, talking, and toilet training. At this time, the team can assess an early intervention program your child may be involved with as well as make recommendations as you begin to consider schooling and daycare options for your child.

Childhood
In progress

Pre-Teen
In progress

Adolescence
In progress

Making an Appointment

Call the Clinic Coordinator:

First time and follow up evaluations begin with a call to the Clinic Coordinator.

During this initial call, the coordinator does a brief intake documenting the family’s address and contact information, the child’s PCP, and general insurance information. Once that is complete, a tentative date and schedule are arranged.

To schedule a visit to the clinic, contact: Katie Scarpelli 1-617-355-5429

Arranging a schedule:

In order to arrange an appropriate schedule, the coordinator consults the director of the William’s Syndrome Clinic to ensure all medical needs will be assessed. If a child is returning to the clinic, the prior William’s Syndrome Clinic evaluation is reviewed and an appointment is arranged according to prior evaluations as well as any new concerns.

Preparing for your visit

A packet of information is sent in the mail within a few weeks of the initial phone call.  This packet will include your child’s three day schedule, an introduction letter for families from the Director and Coordinator of the clinic, a letter to help you navigate arranging insurance, and a questionnaire from the Developmental Medicine Center.  The questionnaire from the Developmental Medicine Center will include components for parents and a separate component for teachers to complete.  Additionally, if your child is a teenager, there will be a section for him or her to complete.

Once you have received and reviewed the packet, it is important to return the necessary components for timely distribution to the clinicians and doctors involved in your child’s care.  In addition to the Developmental Medicine questionnaire, we would appreciate a copy of your child’s most recent IEP and recent consult notes from clinicians such as physical therapists, psychologist, etc involved in your child’s care. 

Insurance

Each individual clinician or doctor your child sees will need a separate insurance referral/authorization. Unfortunately, there is not one comprehensive way to bill for your visit, so each department must bill separately. To find out what services are covered for your child, you must call your insurance company directly. You will likely find a customer service 1-800-number on the back of your insurance card. For additional help in navigating insurance and referrals, please call the Children’s Hospital Patient Access Center at 1-617-355-7114.