Down syndrome Medical Information Page
The links to these articles and sites are for information purposes only and are the property of the original authors and are copyrighted in most cases.
This page has been designed by the DSNetwork to assist families looking for medical information and resources. The site will be continually updated to provide the most current information.
As the DSNetwork Medical Director, I cannot provide specific medical advice or make treatment recommendations over the internet. Specific medical questions would be directed to your personal physician. However, if you need general information about Down syndrome that is not provided on this website then please contact me using our DSNetwork Yahoo! Board link below:
http://health.groups.yahoo.com/group/DSNetworkAZ/.
The DSNetwork does not officially endorse any one physician or specialty group. However, if you would like other parents’ recommendations on local physicians please use our Yahoo! Board to ask for a recommendation and you will likely get a lot of great advice.
Thank you.
Jason Turner, MD
DSNetwork Medical Director
Link to Reference Books Research Opportunities
COMPREHENSIVE MEDICAL INFORMATION SITES
DS-HEALTH BY DR. LEN LESHIN
RIVERBEND DOWN SYNDROME PARENT SUPPORT GROUP
NATIONAL DOWN SYNDROME SOCIETY
NATIONAL DOWN SYNDROME CONGRESS
GENERAL HEALTHCARE GUIDELINES
HEALTHCARE GUILDLINES DOWNLOADABLE PDFs BY AGE
DOWN SYNDROME GROWTH CHARTS
DOWNLOADABLE PDF GROWTH CHARTS
HEALTHCARE GUIDELINES
FLOW SHEET BIRTH TO 12
FLOW SHEET 12 TO ADULT
MOTOR DEVELOPMENT MILESTONES
GROSS MOTOR MILESTONES
HEALTHCARE PROFESSIONAL VIDEO
General Articles about Down syndrome
What is Down Syndrome by Sigfried Peuschel, MD
Down Syndrome Myths by NDSS
What Causes Down Syndrome by NDSS
FAQs by Len Leshin, MD
Down syndrome Q & A
General Semantics and Language
Preferred Language Guide
Why Down Syndrome Occurs
Incidences and Maternal Age
Common Associated Conditions
HYPOTHYROIDISM
The Thyroid and Down Syndrome by Len Leshin, MD
Endocrine issues in Down Syndrome
Thyroid Dysfunction Management
GASTROESOPHAGEAL REFLUX
Gastroesophageal Reflux by Len Leshin, MD
LEUKEMIA
Down Syndrome and Leukemia
Blood Disorders in DS
Leukemia Review
CELIAC DISEASE
Review of Celiac Disease
Celiac Disease
SLEEP APNEA
Sleep Apnea and Down Syndrome
Sleep Apnea by George Capone, MD
Sleep Apnea Review
CARDIAC ISSUES
Review of Cardiac Issues and Down Syndrome
Down’s Heart Group
ATLANTOAXIAL INSTABILITY
Review
Screening
OCULAR ISSUES
Down Syndrome Ocular Issues
Down Syndrome Vision Issues
OBESITY
DS Obesity Review
Weight Management in Young Children
Metabolism
Management in Older Children
Food Texture
ORTHOPEDIC ISSUES
Hip Instability in Down Syndrome by Kim Voss
HEARING LOSS
Hearing Testing
Hearing Loss Abstracts
Hearing Impairment
Hearing Impairment
Video of tube placement
Ear tube information
DENTAL ISSUES
Dental Care in Down Syndrome
Dental Care in Down Syndrome #2
Antibiotic Prophylaxis for Dental Procedures and Heart Issues
DUAL DIAGNOSIS AUTISM/DOWN SYNDROME
National Center Site Disability Solutions
Local Phoenix Site: SARRC
Local Phoenix Site: Melmed Center
Dual Diagnosis article by George Capone, MD
Down Syndrome & Autistic-Spectrum Disorder
Diagnosis of Autism in Down Syndrome
NUTRITIONAL SUPPLEMENTS
Medical Director’s Opinion
There are a lot of questions about Nutritional Supplements for Down Syndrome and no easy answers. There a large number of children in our group that use a product called Nutrivene and a large number that do not. It is not an approved treatment by the American Academy of Pediatrics or the National Down Syndrome Society or the National Down Syndrome Congress. However, this is mainly because there are not yet enough large placebo-controlled studies proving its effectiveness, not necessarily because it might not help. There are a number of studies showing that it may make some difference and improvement in development. However, many of these studies are small and are based on antedotal evidence. We do know that individuals with Down syndrome have a different metabolism and process vitamins differently. We do support and endorse continued emphasis on research in these areas. There is a lot we don’t know yet and more research is needed. It is a topic that many people are passionate about and the discussion can become very complicated. Basically, it is an individual decision and below are some links that show both sides. Last year the DSNetwork brought in Dr. Leichtman, an expert on the subject of Nutrivene, to give a seminar and see individual patients. There is no right or wrong answer on this. You must research it on your own. Talk with your physician or contact Dr. Leichtman, but please read the attached articles before making any decisions. Officially, DSNetwork does not endorse any specific product or treatment plan. We will continue to offer information so that you can make an informed individual decision.
Position statement by National Down Syndrome Congress
Position of National Down Syndrome Society on vitamins
Nutrivene-D website
Dr. Leichtman’s website
Down Syndrome Quarterly by Mary Coleman, MD
Prenatal Screening
PRENATAL SCREENING BY DR. LEN LESHIN
NDSS postition on ACOG
This is not an all inclusive list of the medical issues associated with Down syndrome, but simply a general overview of some of the more common issues. If you are seeking more specific information you can log on to our DSNetwork Yahoo! Board and I will try to do some research for you or you may find the answer you are looking for by posting a question to all the parents because there is likely someone who has experienced the same issues. Of course, you should always talk to your personal physicians about any medical issues you have.
