I headed for the workshop on Medical Issues in Children with Down Syndrome, and was very impressed with the presentation by Dr. Vellody, who is the Medical Director of the Down Syndrome Center of Western Pennsylvania, based at the Children's Hospital of Pittsburgh. Dr. Vellody has a 40 year old brother with Down syndrome, and has first-hand knowledge that adds a personal and real understanding of the challenges and concerns of caregivers.
One of the (many) topics he covered was the use of the out-dated "Down syndrome growth charts", which were developed in the 1950's using the medical knowledge and experiences of that time frame. The charts were developed before the age of providing quality medical care and heart surgery to patients with Down syndrome. The current recommendations are to use the standard growth charts, and plot height and weight relative to each child individually, and don't focus on that 'percentile' number. New charts are currently being developed with updated data.
Dr. Vellody also discussed the use of x-rays for diagnosis of neck instability and other muscular and skeletal issues. The use of trampolines is highly discouraged for children with Down syndrome, unless it is use of the small trampolines used with, and supervised by, physical therapists. Since kids with Ds tend to have lower muscle tone and strength, and neck instability sometimes does not present with obvious signs, it's not a good idea to send your kids out on a trampoline to play. Neck instability can either develop, or improve, over time. The best way to prevent spinal cord injuries is to avoid exercises and activities that have a higher risk of causing them.
Thyroid testing, bone growth and abnormalities, speech issues, dentition, gait, physical therapy, speech and communication issues as they relate to medical diagnoses, skin problems, blood differences.... so many great topics were covered in Dr. Vellody's session.
I think one of the best parts was when he highlighted the positive aspects of having a child with Down syndrome. Some good news is that continuing studies are finding that NOT all people with Ds develop dementia (Alzheimers). Some claims place the incidence of dementia in patients with Ds at 100%! That's a frightening thought for parents and caregivers.
The good news is, ongoing research is finding that often times, behavioral changes are being labeled as dementia, when they are really reactions to other changes in a person's life. Dr. Vellody's example was a 17 year old patient that started to act out. His regular doctors wanted to label him as early-onset dementia (because he has Ds). Dr. Vellody's clinic took a closer look at all factors of the patient's life, and found that his older sister had moved out. He was unable to process his grief, and began to act out. Once that issue was discovered and dealt with, he was fine. I think it is scary to think that our kids may be diagnosed and treated for dementia, simply because they have Down syndrome. I also think that it's wonderful that we have access to expert information and clinics so that we can help our kids, and be sure to provide appropriate help for any issues.
People with Ds don't develop solid mass tumors, rarely have hypertension or plaque buildup in their arteries, are more likely to have positive outcomes with leukemia and infantile spasms, tend to be great readers, have positive attitudes, and be organized. I can say from personal experience that Abigail loves to read, and certainly loves to clean and organize things. Following her open heart surgery, she recovered in a remarkably short time and was home just 4 days after surgery. Our kids really are amazing!!
If you have any questions about Dr. Vellody's presentation, please contact me with your email address, and I will send you more info. By the end of the session, I wanted to bring his Ds Medical Center to Rochester with us. Luckily, he's only a few hours' drive away!
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