Down Syndrome | What to Expect

What to Expect

Your initial visit allows us to gain an understanding of the strengths and challenges of your child with Down syndrome. Our care coordinator may communicate with you prior to your visit to assess your expectations and needs.

Infants and Toddlers

At your first visit, you will meet with a nurse or medical assistant. The medical assistant or nurse will find out your concerns and weigh and measure your child. You will then see a developmental-behavioral pediatrician, occupational therapist and speech-language pathologist together during the visit. This allows us to examine early feeding, movement, and speech skills while asking for background information once. The team takes time to listen and develop a plan for your child with you. Our goal is to help you understand your child’s health needs and next steps in development, and access any supports your child needs.

For children 6 months to 4 years, children will have two visits which are back to back. One appointment will include a medical visit with a developmental-behavioral pediatrician. Another longer appointment will include a team visit in a larger play area. During this appointment, a dietitian, occupational therapist, physical therapist and speech-language pathologist will meet with you and evaluate your child. This type of visit allows for maximal information to be assessed taking into account the needs of the child. Prior to the visit, we take time to review what is in your child’s medical record within Cincinnati Children's. The team assessment begins with finding out your main priorities. The developmental-pediatrician will focus on a medical history. The therapists will assess your child’s development across various domains. Early milestones including feeding, moving, and talking are addressed.

We will discuss with you additional testing we recommend, if any, then review with you our recommendations for a treatment plan. This may include education about Down syndrome, recommendations to support feeding, motor skills and speech, medical treatment, or referral to other specialists if necessary.

Recommendations are provided at the end of the visit with formal reports mailed to you following the visit. While the list of providers may look overwhelming, most families have been pleased with the ease and coordination of this visit. We do understand that one-size does not fit every family and for that reason separate appointments with providers may be recommended. If all of our team is not available on a specific day, we make efforts to meet the individual needs of your family in subsequent visits. If you have an area of developmental priority, be sure to indicate this when you schedule the visit.

Individual appointments can be scheduled with our medical doctors or advanced practitioner nurse specializing in developmental and behavioral pediatrics. Referrals for additional individual evaluations (academic, cognitive, occupational, physical, speech) or treatment programs (behavior, education supports, occupational, physical, speech) are then scheduled as necessary.
Transition planning to adult medical care and services are facilitated as appropriate for the age of the child. Information regarding SSI, guardianship, Developmental Disability Services, and the waiver system is provided. Referrals for supporting evaluations are made as necessary.

Four Years and Older

Your child and family will first meet a developmental-behavioral pediatrician. If you have school concerns, we recommend bringing a copies of your child’s prior school evaluations and/or individualized education program to the appointment. Depending on your priorities and the needs of your child, we coordinate subsequent visits or evaluations. These evaluations can include occupational therapy, physical therapy, speech-language pathology, psychology, special education, and/or nutrition.

We can coordinate these evaluations to occur on the same day or have the visits schedules across various days. If your child needs many different evaluations, the visits may need to span over more than one day. Referrals for cognitive or academic testing, or other treatment programs can be scheduled as needed based on your needs. Cognitive and educational testing results require time to score and interpret. For these visits, typically families will return within about 4 weeks to review the reports and recommendations.

This approach allows each specialist to provide a more in-depth look at skills specific to those early school years. You will receive copies of the evaluation reports with recommendations within the reports. These may include recommendations to support motor skills, language development, medical treatment, behavioral therapy or other treatment options (for example augmentative and alternative communication).

Adolescents and Adults

Adolescents and adults with Down syndrome can be seen within the transition program through the Division of Developmental and Behavioral Pediatrics. If appropriate, your adolescent will have the opportunity to talk to the physician or advance practice nurse on their own as well as with you.

This clinical program will work with you to map out transition needs including aspects of care such as adult medical care, social supports, vocational planning, and financial planning. Information regarding SSI, guardianship, Developmental Disability Services, and the waiver system is provided. Referrals for supporting evaluations are made as needed.

Follow-Up Visits

Follow-up care by providers within the Thomas Center varies depending on the needs and age of the child. Follow-up can include team visits or visits with specific providers (medical, therapists, etc). Young children (infants and toddlers) tend to have more frequent follow-up intervals. Follow-up intervals are determined with your input and based on natural transition points when families have found guidance or re-evaluations helpful. Families can return for a follow-up visit sooner than the anticipated interval, particularly if there are questions or concerns.

Should you decide to pursue speech, occupational, physical, or behavioral treatment at the Thomas Center, visits will be scheduled to support the treatment needs of you and your child.

Down Syndrome | What to Expect

What to Expect

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