Not every child will need / use all the equipment listed below. These are options available to you to help manage the symptoms and promote comfort but may not fit into your family’s Philosophy of Care Plan.
A suction machine is commonly used to remove secretions and mucus (gunk) from the mouth, throat, nose, and upper lobes of the lungs. Available in both portable (battery operated) and non-portable. Many families prefer the portable battery operated suction machines to allow for more outings with their child. Battery operated equipment are useful in case of power outage. Supplemental suction machine supplies include catheters, i.e., Yankour, flexible (sterile and non-sterile), nasal aspirators.
A nebulizer changes liquid medicine into fine droplets (in aerosol or mist form) that are inhaled through a mouthpiece or mask. The nebulizer “breathing treatments” are commonly used to delivery airway opening medications such as albuterol (Ventolin®, Proventil® or Airet®), levalbuterol (Xopenex®) or ipratropium bromide (Atrovent®).
A nebulizer may be used instead of a metered dose inhaler (MDI). Many families prefer the portable battery operated nebulizers to allow for more outings with their child. Battery operated equipment are useful in case of power outage.
The Vest® System is an easy-to-use airway clearance device that unlike manual chest percussion therapy (CPT), The Vest® System treatment does not require special positioning and breathing techniques. It can be challenging to get insurance coverage for the Vest, and it is very expensive. A script from a pulmonologist stating it is medically necessary is a good first step. Contact the office for assistance.
The Air Pulse Generator rapidly fills and deflates an inflatable garment, gently compressing and releasing the chest wall up to 25 times per second. This process, called High-Frequency Chest Wall Oscillation (HFCWO), creates mini-coughs that dislodge mucus from the bronchial walls, increase mobilization, and move it along toward central airways. The action also works to thin thick secretions, making them easier to clear. Once the mucus has moved from the smaller to larger airways, it can be easily removed by coughing or suctioning. (source: https://www.thevest.com).
CoughAssist is a noninvasive therapy that safely and consistently removes secretions in patients with an ineffective ability to cough. It clears secretions by gradually applying a positive pressure to the airway, then rapidly shifting to negative pressure. The rapid shift in pressure produces a high expiratory flow, simulating a natural cough.
Oxygen Concentrator and Portable Tanks
Oxygen Concentrators are a safe and convenient source of therapeutic oxygen. They are commonly used alternatives to awkward and potentially dangerous tanks. Oxygen concentrators provide a continuous flow of oxygen (or sometimes a pulse of oxygen as the user inhales) to the user without tanks or cylinders that require re-filling. They are electric or battery powered oxygen delivery systems that extract some of the air from the room and separates the oxygen from the other gases.
Tumble Forms provide soft foam positioning support in a variety of options from carrier and feeder seats to wedges and bolster rolls. Feeder seats can be used for feeding as well as resting. Wedges are used to promote trunk control, head raising and arm and hand movement. Discuss your child’s current and future positioning needs with a physical, speech, or occupational therapist.
A stander is an adjustable standing aid that promotes correct alignment of the trunk and lower extremities. Prolonged immobility can cause skin breakdown, discomfort, and tight joints and muscles.
A stander can alleviate these issues but are not right for all children. Discuss if a stander is right for your child with your physical therapist.
Hospital beds are sometimes used in the home to promote the comfort and well-being of your child and for the convenience and safety of you and other caregivers. Common features include adjustable head and feet, adjustable bed height, side rails, washable mattress, and transportability.
Specialized strollers are like regular children’s strollers, but provide more support options and larger weight limits. Your child’s physical therapist will evaluate your child’s current and future needs and order the appropriate specialized stroller. Some families prefer using larger regular strollers or a combination depending on the outing. There are lots of options available. Other families are always happy to share what worked for them. Please contact our Family Services Team for details.
A bath chair is used in the bathtub or shower to make bathing safe and comfortable for you and your child. Your child’s physical therapist will evaluate your child’s current and future needs and order the appropriate bath chair. Some families use a Hoyer Lift to assist getting larger children safely in and out of the bathtub. Discuss this option with your physical therapist.
A pulse oximeter is a convenient and noninvasive way to monitor your child’s oxygen levels. It simply sits on your child’s finger and displays oxygen levels on a monitor. Many also display heart rate. There are three types of pulse oximeter: non-portable that plug into the wall like the ones used in the hospital, hand-held and finger-tip both of which are portable and battery-operated.
An apnea monitor is a device that measures how well your child breathes while sleeping. It checks for apnea, a period when you stop breathing for 5 to 20 seconds while you sleep. The device also measures air flow, chest movements, heart rate, and oxygen in your blood.
Feeding Pump (if using g-tube)
A feeding pump is a small machine, calibrated for accuracy, designed to deliver formula and/or other liquid at a set rate. Generally used when children do not tolerate bolus (all at once through a syringe) feeds.
National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.
The content of this website is intended for informational purposes only and not intended to be a substitute for professional medical advice, diagnosis, or treatment.
The National Tay-Sachs & Allied Diseases Association (NTSAD) leads the worldwide fight to treat and cure Tay-Sachs, Canavan, GM1, and Sandhoff diseases by driving research, forging collaboration, and fostering community. Supporting families is the center of everything we do.
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National Tay-Sachs & Allied Diseases Association
2001 Beacon Street, Suite 204, Boston, MA 02135
(617) 277-4463 | email@example.com