What to Expect: Medical Tests Toolkit

The “What to Expect” video series is designed to help people with Down syndrome to experience medical and/or research procedures. These step-by-step videos provide an in-depth overview of the process with the goal of alleviating anxiety of the unknown and making the experience as smooth as possible.

Having a brain scan or a lumbar puncture can be a daunting experience for anyone. As brain imaging becomes more commonplace for people with Down syndrome, families may struggle with preparing their loved one for a procedure. NDSS has developed a series of multi-media tools families can use to get ready for these important medical procedures.

Please note that these experiences are meant to represent a "typical" visit, but each clinic's policies and each diagnostic protocol may differ slightly from the ones shared below.

Preparing for a PET Scan

A video that shows a man with Down syndrome and his father at the doctor's office

Join Samuel as he prepares for a PET Scan! A PET Scan (Positron Emission Tomography) is an imaging test that is used to show the function of your tissues and organs. A radioactive drug called a “tracer” is injected in tiny doses into the arm, and then a large tube-shaped camera takes pictures of the tracer inside the body. The tracer allows doctors and researchers to see areas in your body that have both typical and atypical functions. PET scans are often used to discover the presence of amyloid plaque in the brain, which is a hallmark of Alzheimer’s disease.

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Preparing for an MRI

Samuel, a man with Down syndrome, enters an MRI machine

Join Samuel as he prepares for an MRI! An MRI Scan (Magnetic Resonance Imaging) is an imaging test that uses a magnetic field and computer-generated radio waves to create detailed images of tissues, organs, and bones. An MRI machine is a large, tube-shaped magnet. When lying inside the MRI machine, the magnetic field inside the machine works to produce high-resolution images of your body. MRI machines are very loud, but the images they produce are very important because they help diagnose a variety of disorders and conditions.

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Preparing for a Lumbar Puncture (Sitting)

Susie, a woman with Down syndrome, is at a doctor's office

Join Susie as she prepares for a lumbar puncture sitting! A lumbar puncture, also known as a spinal tap, is a medical procedure used to collect cerebrospinal fluid—the clear liquid that surrounds the brain and spinal cord. This is done by inserting a thin needle into the lower back, between the bones of the spine. The area is numbed beforehand to reduce discomfort, and most people feel only pressure during the procedure. In addition to the collection of spinal fluid, Susie also receives medication via a lumbar puncture, because she is participating in a clinical trial.

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Preparing for a Lumbar Puncture (Lying Down)

Susie, a woman with Down syndrome, is at a doctor's office lying down

Join Susie as she prepares for a lumbar puncture laying down! A lumbar puncture, also known as a spinal tap, is a medical procedure used to collect cerebrospinal fluid—the clear liquid that surrounds the brain and spinal cord. This is done by inserting a thin needle into the lower back, between the bones of the spine. The area is numbed beforehand to reduce discomfort, and most people feel only pressure during the procedure.

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