Welcome to the Health Care Providers page

In this section of our website you will find up-to-date information on health care issues related to Down syndrome. We trust you will find this information useful. We encourage you to contact us for questions or suggestions at (518) 438-1113 or e-mail at info@dsahrc.org.

Our services at the Down Syndrome Aim High Resource Center are devoted to helping individuals with Down syndrome get access to appropriate health care, from birth to adulthood, so that they can reach their fullest potential.

Physical Therapy in Down Syndrome

As new parents of a child with Down syndrome, you already have your hands full just trying to get acclimated to this new country, to obtain the correct guidebooks and learn a few words of Dutch.  Therefore, you are understandably skeptical when someone suggests that one of the new people you should meet is a physical therapist.  They are recommending that you start your new infant in regular physical therapy.  Why physical therapy?  Don't children with Down syndrome learn to walk and run, just like other children do?

Occupational Therapy and the Child with Down Syndrome

Maryanne Bruni, BSc OT(C)

If you are a parent reading this, you likely have a child with Down syndrome, as I do.  My intent with this article is to provide you with some information about how an occupational therapist (OT) may be able to help you and your child.  Occupational therapists who work with children have education and training in child development, neurology, medical conditions, psychosocial development, and therapeutic techniques.  Occupational therapists focus on the child's ability to master skills for independence.  This can include:

  • self care skills (feeding, dressing, grooming, etc.)
  • fine and gross motor skills
  • skills related to school performance (printing, cutting, etc.)
  • play and leisure skills

When your child is an infant, your immediate concerns relate to his health and growth, development of the basic motor milestones, social interaction with you and others, interest in things going on around him, and early speech sounds and responses.  At this stage, an OT may become involved to:

Medical Issues and Down Syndrome

If you take extra care and consideration, your baby has a very good chance of having a healthy childhood.  You will find that there are risks for extra health concerns but that does not necessarily mean that your child will have any of these problems.  While there is a fairly long list of possible health concerns, most of these are unlikely to occur and actually are fairly uncommon.  Monitoring for these health issues will help to find these problems early if they exist--and early care can go a long way toward minimizing the problem.  Good child health care is important for your child and needs to start with the basics.  The regular well-child visits to your provider offers lots of opportunities to investigate problems, to consider upcoming issues, and to practice prevention.  Here are some of the issues that you will want to emphasize.

Lending Library

The Lending Library, located at the Down Syndrome Aim High Resource Center (DSAHRC), has a wide variety of books available to individuals with Down syndrome, their families, and professionals. Books are loaned out for 4 weeks at a time.

Continue on to the Lending Library »

Cardiac Issues and Down Syndrome

Congenital Heart Disease
Congenital heart disease (heart disease which is present at birth) is very common in children with Down syndrome.  Around 40-50% of newborns with Down syndrome will have some type of congenital heart defect.  This will often require medications and some type of intervention such as open-heart surgery or a cardiac catheterization.  Sometimes the defects are relatively minor and do not need any treatment.  Fortunately, nowadays the overwhelming majority of congenital heart defects in infants and children with Down syndrome can be fully corrected.  You are most likely overwhelmed with all the new diagnoses:  the diagnosis of Down syndrome, the diagnosis of congenital heart disease.  It is important to realize that you are not alone.  Other parents with similar experiences and the Down Syndrome Aim High Resource Center are available for support.  Your pediatric cardiologist will monitor and see your child as much as needed and make sure that the best possible medical care is provided.

Down Syndrome Health Care Guidelines: Ages 13-21 Years

(Based on “Health Supervision for Children with Down Syndrome” as published in Pediatrics August 2011) Ages 13 – 21 Years

Facts about Down Syndrome

Read a list of facts about Down syndrome.

Commentary

Careful evaluation of a person with Down syndrome who has a decline in function has broader public health implications. Many of the adults we have seen for a decline in function have either previously been given the diagnosis of Alzheimer's disease or there was a strong suspicion by the family or caregivers that the person had Alzheimer's disease. In discussing the concern with the family or caregiver, it is clear that many people believe that all persons with Down syndrome will develop Alzheimer's disease. Our experience and the research of others would suggest that not all persons with Down syndrome will develop clinical dementia stemming from Alzheimer's disease. The exact prevalence of Alzheimer's disease in persons with Down syndrome is still being investigated.

Down Syndrome Health Care Guidelines: Adulthood

(Based on 1999 Down Syndrome Health Care Guidelines) Adulthood

Language Guidelines

The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The “s” in syndrome is NOT capitalized (syndrome).
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