In this section
We understand your family faces many complex issues every day in caring for a family member with Down syndrome. We address each patient’s unique health and wellness concerns at every age. We are connected to local and nationwide networks and resources that can benefit your whole family. We also offer support and information for your primary care physician.
Appointments are available monthly, usually the first or second Friday of the month. We customize your visits to meet your child’s and family's needs and concerns. We simply request that you schedule an appointment in advance.
Your visit to Children's can help, even if your child or family member already has a doctor.
We are specialists in treating patients with Down syndrome. Our clinic focuses on providing medical care, information and support to meet the needs of people with Down syndrome. Our patients are children and adult family members with Down syndrome.
Families who have children with Down syndrome often visit Children's because:
- They may have a specific issue or concerns about their child's or family member's health and well-being. These concerns may relate to a recurring issue that remains unresolved or a new problem that has recently surfaced.
- They want to be sure they're on track with their child’s healthcare. For many families, this is the first time their family member has been examined by a specialist with expertise in caring for people with Down syndrome.
- The patient with Down syndrome or the family is entering a developmental or transitional stage that may require extra support, information or guidance. For example, new parents may be transitioning from birth to an early childhood program. Or, a child may be entering school for the first time, going through puberty or moving from home into the community. These are especially challenging times in the lives of people with Down syndrome.
Our patients still benefit from having a primary care doctor to provide services such as well-child checks, physicals or care for your child if he or she is sick.
- National COVID Vaccination Statement for People with Down syndrome
- COVID-19 & Down Syndrome resources
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Patients with Down syndrome often have complex issues. Your family may need a second opinion, which we are happy to provide. A second opinion often helps you prioritize your concerns and sort through problems you and your child encounter.
Information and referrals
People with Down syndrome commonly receive care from multiple specialists. No referral is needed to schedule an appointment. Patients and families may refer themselves to Children's. A primary care physician or other healthcare specialist also may refer patient sand families. Staff at Children's can provide families with specialist referrals as well as updated information on health and wellness topics.
Training, education, and resources
Our care extends beyond the needs of your child. We provide training and education for parents, siblings, your child's primary care physician, and healthcare providers on a variety of health issues.
Social stories for healthcare
Many of our patients experience anxiety related to health care procedures and physician visits. A social story is one tool or strategy for giving your son or daughter information about what to expect. Preparing them for what will happen can reduce anxiety and illustrate socially appropriate behavior. Many of our parents have reported success with the social stories below.
- Here we go... to the Dentist
- Here we go... for an EEG
- Here we go... to Imaging
- Going for a sleep study
- Going to get my sleep mask
Healthcare guidelines for people with Down syndrome
Adult healthcare information
- Healthcare management of adults with down syndrome 2001 by David S. Smith MD
- Managing the care of adults with down's syndrome 2014 (British Medical Journal)
- Aging and Down Syndrome: A health and well-being guidebook
Preparing for your visit
Before your first visit, we will send you a packet of information that includes:
- A brochure of services we offer
- A letter with your appointment time(s) and location(s)
- A Down syndrome health history form
- Medical release forms.
Please be sure to complete and return the forms to us before your scheduled appointment.
What will happen during a visit
All new patients visiting Children's Wisconsin will meet with our specialists and, if needed, receive a full physical examination including:
- A hearing test
- Lab work
We also spend time talking with your family members to understand their level of involvement with care, their interactions with and concerns for the patient such as nutrition, feeding, speech, or physical or occupational therapy issues. We also offer genetic counseling.
After your child’s first visit
After your appointment, we will send you a report with recommendations and a copy of Healthcare Guidelines for People with Down Syndrome to you and your primary care physician or other healthcare providers. If we performed tests, such as lab work or X-rays, we will call you with the results and discuss any necessary follow-up care. At this time, we also may refer you and your child to other specialists.