What is Down syndrome?
Down syndrome is a genetic condition that appears in one of every 691 live births. It is the most common chromosomal disorder and can cause delays in physical and intellectual development. Individuals with DS have 47 chromosomes instead of the typical 46. This unusual cell division happens immediately at conception. Neither race, nationality, religion nor socioeconomic status influences the rate of occurrence of DS.
What are the three types of Down syndrome?
The most common form of DS is known as Trisomy 21 (T21), which accounts for 95% of cases. The remaining 5% are due to conditions called mosaicism and Robertsonian translocation. Mosaic DS results when some cells in the body are typical while others have T21. Translocation occurs when part of chromosome 21 breaks off during cell division and attaches to another chromosome. The presence of this extra part of chromosome 21 causes some characteristics of DS. Although a person with a translocation may appear physically typical, he or she has a greater chance of having a child with DS.
What options do people with T21 have?
Through medical strategies, neurodevelopmental exercises and biomedical intervention, the options for people with T21 is growing and evolving every day. Exciting new research helps us understand and uncover different ways to address the symptoms people with T21 have. And, since these individuals have similarities to those with Alzheimer's Disease, scientists have taken a renewed interest in finding treatment for dementia in both populations. Researchers are working to improve, correct or prevent many of the problems associated with the diagnosis.
According to the National Down Syndrome Society's website, "Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future."
Some people believe that the effects of T21 are just a fate that you accept. But, according to an article in the spring issue of the Journal of American Physicians and Surgeons, "Genetic diseases [such as Down syndrome] are generally thought to be untreatable, but the underlying mechanisms are biochemical and thus can possibly be modified." And this study states that "Learning disabilities and mental retardations that were considered permanent are treatable." Either way you look at it, there are a wide variety of options which can be very helpful, depending on each individual. Some options may lead to great improvement and others may have little or no effect on your child. How can you figure out what works for your child? Participation in Autism360 may help.
Autism360 is free database that was created to allow parents of children with Autism share information with each other on what is working or not working for their child. Parents have found this tool so valuable, that families with children with T21 are using it as well. You simply share information about your child in a secure, anonymous way and then you can compare your information with other families. The information includes your child's surgeries, therapies, symptoms, strengths, supplement/medicine list. The more people who use this database, the better. Please consider investing a small amount of time to participate. It's very interesting what you may learn about your child! Let us know if you have any questions on how to use it.
Where can I connect with other families who are searching for answers?
- On Facebook, there is the Trisomy 21 Nutrition and Supplementation group and the Unlimited Potential group (that focuses on alternative therapies like neurodevelopmental therapy). If you would like to be invited to these groups, please email us or Join Our Community and request to join.
- For parents with babies and young children with Down syndrome, join the online Unlimited Potential Parent Group.
- Enjoy a vast amount of information sharing for parents of children of all ages at the Einstein Syndrome Forum.
- For parents with family members with the dual diagnosis of Down syndrome and autism spectrum disorder, join the DSA of Louisville to learn about IEPs, etc. For putting together a plan of action including biomedical intervention, join the yahoo group called DS-Aut Recovery.
- Down Syndrome: A Day to Day Guide
- Got Down Syndrome
- Naturally Better Kids
- Down Syndrome: Up! Up! & Away!
- The Down Syndrome Action Plan
- Can nutritional supplements help mentally retarded children? An exploratory study. by Harrell RF, Capp RH,Davis DR, Peerless J, and Ravitz LR. Proceedings of the National Academy of Sciences USA, 1981. 78: 574–8.
- The Pioneering Work of Ruth Flinn Harrell: Champion of Children by Andrew W. Saul from the Journal of Orthomolecular Medicine, 2004. Vol 19, No 1, p. 21-26.
- A Metabolic Overview of Down Syndrome by Dr Robyn Cosford. Article starts on page 3 with the conclusion on page 6.
- New Research for Treating Down Syndrome by Erica Peirson, ND. 2012 NDNR Naturopathic Doctor News & Review
- Rebuttal to Dr. Leshin’s & Quackwatch’s Article: “Nutritional Supplements for Down Syndrome: A Highly Questionable Approach,“ by Qadoshyah Fish, 2008
- Supplements and T21 a list of resources by Andi Durkin.