Dr. Vellody, the Medical Director of the Down Syndrome Center at the Children’s Hospital of Pittsburgh

DSR Episode #23: Dr. Kishore Vellody!

Dr. Vellody is the Medical Director of the Down Syndrome Center at the Children’s Hospital of Pittsburgh. This guy REALLY understands the medical issues faced by our children!

Because the center that he directs is specialized, he sees an incredible amount of patients with Ds.  This centralized experience is invaluable in correctly diagnosing and treating our wonderful children.  To further brag about our guest, he is incredibly personable and easy to talk with.  He explains the medical science behind several issues during the episode in a very clear and concise manner.

Dr. Vellody has a brother with Ds and a wonderful family with four children!  If you ever wondered what was going on in the picture (at right), it is little Kishore and his brother.  I think the chair was later used for the set of the Brady Bunch.

During the episode we discuss the following medical issues:

• Heart Surgery – How to choose the right hospital/staff
• The common cold for those with smaller nasal passages
• Sleep Apnea – Sleep studies are important!  This can have chronic affects if left untreated.
• The neck instability thing (Atlantoaxial Instability) – We learned a lot about this
  • It is much rarer than I thought (a few in a thousand)
  • They do x-rays to diagnose it but an x-ray is a poor tool
  • There are symptoms to look for – Dr. Vellody can spot them
  • Don’t worry about it so much, but don’t drop your kid on his head if you can help it.
  • DS Medical Registry
  • Health Supervision for Children with DS – Apparently our kids did come withinstructions!

Dr. Vellody has also started his own podcast to share his medical knowledge (which is how we found him!).  Have you ever left a doctor’s appointment and said to yourself – ‘I just hope I could remember everything he said’?  Wouldn’t it be cool if you could just go to his podcast and hear it all again while you were at the gym or driving in your car?  Well that all possible now.  Here is the link to his podcast in iTunes.  And here is the link to his web page (Children’s Hospital of Pittsburgh).

Thanks for listening!  Remember to go to iTunes and give us a great review and subscribe.  You can also leave us comments on this site!  Have a wonderful DS Awareness Month and a great time at your local Buddy Walk/Step Up event!

~Down Right Awesome Dads

Download Down Syndrome Radio, Episode #23.
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Raising a Child with Down Syndrome: Advice and Resources

from Amy Julia Becker:

When our older daughter, Penny, was diagnosed with Down syndrome at birth, it felt daunting to consider the medical, social, educational, and behavioral challenges ahead. I had no idea how much support and encouragement we would receive from family, friends, and the larger community of other parents with kids with Down syndrome, as well as from dedicated and caring therapists, teachers, and medical professionals. Although we have many years to come, and many lessons to learn as we parent Penny and our other children, here are a few pieces of advice that I and other parents of children with Down syndrome can offer.

It then includes 8 sections with suggestions within each:

1. Learn the Facts First
2. Get In Touch with Other Parents
3. Organize Relevant Information
4. Find Good Doctors, Therapists, and Specialists
5. Put Together Your Village
6. Remember Your Child is a Child First
7. Prioritize Communication
8. Focus on Your Child’s Strengths

Click here to read the whole article on parents.com: How to Raise a Child with Down Syndrome: Advice and Resources.

Dr. George T. Capone featured at Down syndrome conference

from thedailystar.com:


Down Syndrome research scientist Dr. George T. Capone will be featured at a special full-day conference at The Kennedy-Willis Center at Pathfinder Village in Edmeston, NY on Friday, June 10. The conference, "Medical and Behavioral Issues in Down Syndrome" is open to parents, educators and professionals who work with people with developmental disabilities.

A printable registration form and more information on Capone's conference is available at www.pathfindervillage.org; a registration fee of $70 will be charged and includes conference materials, refreshments and lunch. For more information, contact Bonnie Laugen, director of the Kennedy-Willis Center, at 965-8377, ext. 154/112, or e-mail blaugen@pathfindervillage.org.

"For 15 years, people have turned to the Kennedy-Willis Center for the latest research information on Down syndrome," Laugen said in a media release. "It is very exciting to have this opportunity to share Dr. Capone's expertise with the community and learn about baseline research that will shape our understanding and methods of care for years to come."

Capone is one of the country's preeminent research scientists in Down syndrome, according to the release. Capone is the head of the Down syndrome clinic at the Kennedy Krieger Institute in Baltimore and has conducted research that explores the neurobiologic basis of cognitive impairment, behavioral and psychiatric disorders that may be associated with the chromosomal condition. He and his colleagues have been published in the Journal of Developmental & Behavioral Pediatrics, Journal of the Neurological Sciences and the American Journal of Medical Genetics.

Capone also is an attending physician at KKI and an associate professor of pediatrics at the Johns Hopkins University School of Medicine. He attended Wesleyan University and worked as a research assistant at the Dana Farber Cancer Institute, Boston, before obtaining his M.D. from the University of Connecticut in 1983.

The conference is part of the 15th anniversary celebration for the Kennedy-Willis Center on Down Syndrome, Pathfinder Village's outreach and education initiative. The center provides counseling and training for direct care staff, medical professionals and families who care for people who have Down syndrome and other disabilities.

Founded in 1980, Pathfinder Village is a privately funded, nonprofit, residential community for children and adults who have Down syndrome. For more information, visit www.pathfindervillage.org or www.pathfindervillagestories.org, or visit the Pathfinder Facebook page.