Related Disorders
Fitting and Adjusting Mobility Equipment
From the SOFT 2021 Virtual Conference Fitting, Adjusting and Modifying Mobility Equipment – Strategies for Adults and Children with Trisomies Michael J. Workman PT C/NDT
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Aquatic Therapy
From the SOFT 2021 Virtual Conference. Aquatic Therapy – Briana Demars OTA
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Video – Update 2020 on Seizures, Light Sensitivity and Headaches
Dr. Steven Cantrell – Seizures, Light Sensitivity and Headaches From the SOFT 2020 Virtual Conference Dr. Cantrell’s workshop, Seizures, Light Sensitivity and Headaches will review the many triggers causing seizures and how to protect your child. Nutrition, Eye Protection, and removing triggers around the house will decrease seizure activity. About Dr. Steven Cantrell:Dr. Steven Cantrell…
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Video – Trisomy 13 and 18: The Basics
Dr. John Carey – Trisomy 13/18 The Basics Dr Carey explains the basics of how a trisomy occurs and the differences between full, partial and mosaic. From the SOFT 2020 Virtual Conference. Dr. John C. Carey Throughout his career, Dr. Carey has been interested in birth defect syndromes and the care of children with these…
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Video – Shining moments from the TRIS project
The first of a series of videos from the SOFT 2020 Virtual Conference. Deborah A. Bruns, Ph.D. shares shining moments from the TRIS project: An overview and review of activities with Deborah A. Bruns, Ph.D. About Deborah A. Bruns Ph.D:Deborah A. Bruns is Professor and Off-campus program coordinator for the Special Education program in the…
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Video – Constipation 101
If you get any two or more parents of children with Trisomy together the conversation will inevitably turn to the subject of constipation. Constipation is one of the most common health issues that families of a child with a diagnosis of Trisomy 18, 13 or other related disorder face. Managing your child’s bowels becomes a…
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Video – Cardiac Surgery in Infants with Trisomy 18 and Trisomy 13
A new day is dawning for our kids with heart issues. For years many of our families have had life saving surgeries denied simply because of their child’s diagnosis. Dr. James Hammel at Children’s Hospital in Omaha is looking beyond the label, giving our families hope and our children a chance at survival with life…
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Perspectives on the Medical and Genetic Aspects of the Trisomy 18 & 13 Syndromes
Presented at the 2012 SOFT Conference, St. Louis Dr. Carey began by saying questions were welcomed. He also noted most participants were familiar with the basics of trisomy, so he would emphasize new information. The result was he completed about 10% of his forty prepared slides. The order of information that follows reflects the questions…
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Growth Charts & Surgeries
Bonnie Baty, PhD, Genetic Counselor at the University of Utah, in collaboration with SOFT, created the first, and still only, charts with growth curves for infants and children with trisomy 18 and 13. Children’s standardized growth charts are separate for boys and girls. The SOFT charts are a combination of both male and female growth.…
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