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Medical Resources
Sie Center for Down Syndrome
“The Sie Center is a center of excellence with Down syndrome experts and subspecialists at Children's [Hospital] Colorado providing comprehensive medical and developmental specialty care as well as conducting clinical research. It is one of the largest comprehensive teams caring for children with Down syndrome, located at our nationally ranked children's hospital as rated by U.S. News & World Report.”
The Sie Center for Down Syndrome provides the highest quality comprehensive consultation by coordinating medical care, along with therapies including speech, physical and occupational therapy. Our team also includes feeding therapists, a psychologist and a child education specialist.
Before your first appointment, we will contact you to review your child’s and family’s needs. We will have a multidisciplinary team ready to meet you and your child during your first visit to address your child’s specific needs.
At the end of the visit, your family will receive appropriate and up-to-date information, as well as resources and recommendations to optimize your child’s health and development. We will also share this information with your child’s primary care doctor.”
I was fortunate to learn about the Sie Center because friends invited us to the “Be Beautiful, Be You Fashion Show” benefitting the Global Down Syndrome Foundation. When our family traveled to Denver for the fashion show in November 2022, we had the opportunity to visit the Crnic Institute of medical research to see the groundbreaking work they are doing. After researching Global and visiting the institute, we knew then we had to come back to take Annie to their affiliated pediatric clinic, Sie Center.
Our family took a trip to Colorado for Annie’s first appointment at the Sie Center in August 2023. When the appointment started, I could hardly believe we were there and that such a wonderful place really existed. The clinic was exactly what I had always dreamed of – it gives children with Down syndrome their deserved opportunity to receive care that is tailored to them. I will write an extensive blog detailing the 3-hour appointment because I know parents will want more in depth details. Our family felt so privileged to have seen Dr. Hickey and his staff. Annie is now an established patient, and we will take that annual trip to the mountains to be sure we are getting the best of the best for her as she grows.
The Sie Center for Down Syndrome was opened in 2010 and is in Colorado.
American Association of Pediatrics Guidelines for Down Syndrome
Many of the above organizations worked for years to see the following resource be published.
This is the 2022 updated medical guidelines for Down syndrome by the American Association of Pediatrics. It is intended for your pediatricians to follow for your child’s health care. One year in and I know many doctors do not have the updated version or are not following it based on feedback from mothers.
I urge you as your child’s advocate to print this off, study it, make notes and use this valuable resource. You are the expert; this is your greatest guide. Some of the greatest researchers and doctors in Down syndrome presented their findings from studies to update these recommendations.
Julia’s Way Breastfeeding Support
This is a new resource I have just come across.
Visit this website to: learn Julia’s story, download or order a hard copy ($15) of their guide book, find a printable brochure, watch a truly beautiful 5 minute video resource, or join a free monthly support group.