If you have a child with Down syndrome, you know that this condition impacts all aspects of your child’s development. The Down syndrome programs at Children’s believes in providing the best care to help your child reach their full potential. We ensure families are supported by a multidisciplinary pediatric team specialized in meeting your child’s medical needs at every age. Our specific-age appropriate care complies with American Academy of Pediatrics (AAP) guidelines and works with you to improve quality of life at each stage of your child’s development.
By streamlining appointments, our program helps to ease the burden of scheduling for parents. A single appointment could consist of meeting with pediatric specialists from nutrition and feeding support to speech and physical therapy. Patients can even meet with behavioral health providers.
There are many resources available for children and families living with this condition. Children’s pediatric Down syndrome program aims to provide education and clinical services that improve the quality of life for children living with this condition, working together towards a goal of thriving into adulthood and living a meaningful life.
What is the Down Syndrome Program?
Our mission is to increase the quality of life for children with Down syndrome — and their families — by offering individualized comprehensive medical and professional services. Our specialists are here to provide up-to-date information on Down syndrome and help educate families about this condition. We will also provide access to community resources and programs and referrals to specialists.
Make An Appointment
Who Will I See At The Down Syndrome Program?
The Down syndrome program is comprised of medical experts with specific pediatric expertise:
- Occupational and physical therapists
- Behavioral health specialists
- Social workers
- Speech/feeding therapists
After your first visit with a pediatrician, you may be referred to other providers with a special interest in caring for children diagnosed with Down syndrome. These providers may include:
- Otolaryngology – a specialist in ear, nose and throat conditions
- Ophthalmology – an eye doctor
- Hematology/Oncology – a specialist in blood diseases and cancer
- Orthopedics – a specialist in bones and joints
- Cardiology – a specialist in heart and cardiac care
- Endocrinology – a specialist in glands and hormones
- Gastroenterology – a specialist in digestive diseases
- Neurology – a specialist in brain and spinal conditions
- Pulmonology – a specialist in respiratory conditions
- Audiology – a specialist in hearing disorders
What You Can Expect During Your Visit
Whether you have a newborn, toddler, preschooler or a young adult living with Down syndrome, this program seeks to provide support and answer any questions you may have along the way.
Here is a breakdown of the types of common age-specific issues we will address during your visit:
Infant/Toddler (6 months to 2.5 years)
- Education about Down syndrome — Down syndrome management recommendations per the American Academy of Pediatrics guidelines, advocacy, resources available
- Physical therapy — assessing and providing support for early motor skills
- Feeding therapy — ensuring adequate intake and appropriate oral motor skills
- Speech therapy — evaluating early language development
- Sleep — identifying sleep issues
- IEP/preschool — assisting with resources to prepare for the transition to school
- Speech therapy — evaluation and treatment
- Nutrition — evaluating growth, eating behaviors, and making diet recommendations
- Behavioral health — support for behavior concerns and ideas for intervention
- Behavioral health — identification and support for issues, such as ADHD, non-compliance, and anxiety
- Evaluation for medical issues that can lead to behavioral problems — celiac disease, obstructive sleep apnea, hypothyroidism, GERD and constipation
- Individualized Education Program (IEP)/school assistance — assistance with resources to make the transition to school easier
- Nutrition — addressing weight gain, dietary needs, exercise patterns
- Community resources — providing access to community programs
- Sleep issues — identification and treatment of sleep issues
- Education — support and transition planning
- Guidance — offering support through puberty
- Future goals — tips on post-high school educational programs, work, independent living
Depending on your child’s needs, they will come to the clinic once every 1-2 years. Our goal is to help ensure you have a happy and healthy child. Our Down syndrome program isn’t meant to replace a child’s primary care facility, but it is meant to help parents with their questions and give them the time they need to make the right decisions for their child as they grow up with this condition.
“I love being involved in providing optimal care for these children. All families want to ensure their children have the best possible life and reach their full potential.”
Laura Nielsen, M.D.
“When my daughter Sophie was born with Down syndrome, I had many questions and concerns. Yet over time I came to realize that there are many great resources out there to help myself as a parent and individuals with Down syndrome live a full and happy life. I believe that there is a lot of potential for children with Down syndrome, but the first step is ensuring that we are doing everything we can to optimize their health.”
Marcellene Franzen, M.D.
Down Syndrome Alliance of the MidlandsThe DSA is committed to connecting families with Down syndrome through education, advocacy and support.
Down Syndrome Association for Families of NebraskaThe Down Syndrome Association for Families of Nebraska is a local resource in Lincoln to support individuals with down syndrome, and their families and friends.
Down Syndrome Diagnosis NetworkThe mission of the DSDN is to connect, support, and provide accurate information for families with a Down syndrome diagnosis
National Down Syndrome CongressThe NDSC is the leading human rights organization for all individuals with Down syndrome
Global Down Syndrome FoundationThe Global Down syndrome Foundation is dedicated to significantly improving the lives of people with Down syndrome through research, medical care, education and advocacy.
DS-Connect: The Down Syndrome RegistryThe Down syndrome registry is hosted by the National Institutes of Health (NIH) and the Down syndrome Consortium and has been established to gain a better understanding of Down syndrome.
What To Do Next
Make An Appointment
To make an appointment, call 402-955-6100.
For Referring Providers
The Physicians’ Priority Line is your 24-hour link to pediatric specialists at Children’s for referrals, emergency and urgent consults, physician-to-physician consults, admissions, and transport services. Call 855-850-KIDS (5437).