Pierre Robin Network

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Glossary A - L

Hearing so many different terms can be overwhelming and confusing to parents and caregivers.

We have listed several on two different pages for your reference.  You may never come into contact with some of these terms, some of them relate to issues that may not apply to every child, but we felt it necessary to list as many as possible.  If you would like us to add more terms that might be beneficial, please let me know.

ABR - Auditory Brainstem Response is usually done in early infancy. The test is done while child is sleeping and the use of medications to induce sleep may be needed. NON INVASIVE and involves the use of headphones. 

Alveolar ridge - the bony ridge of the maxilla and mandible containing the teeth.

Anesthesiologist - physician who specializes in anesthesiology, administering medication to patients undergoing surgery.

Apnea monitor - a machine that will hook to the baby via either a belt or sticky type leads.  This machine will monitor your child's breathing and heart rate.  It can be set to alarm if levels go below or above a certain predetermined level.

Artificial Nose - a filter device that fits onto the hub of a tracheostomy tube and is used to trap moisture and minimize exposure to germs or dust in the air as the patient breathes (AKA: HME, Thermo vent T, Swedish Nose)

Articulation - the process of forming speech sounds.

Aspiration - The inhaling of foreign matter in the lungs.

Aspiration pneumonia - refers to the inappropriate passage of food, water, stomach acid, vomit or another foreign material into the lungs. Aspiration, particularly involving gastric acid, will often result in a serious pneumonia.

Asthma - Chronic respiratory disorder characterized by labored breathing and wheezing resulting from obstructed and constricted air passages. Long-term control includes inhaled or oral bronchodilators (albuterol, theophylline), breathing exercises, and, if possible, the identification and avoidance of allergens. Short-term cortisone and prednisone can bring immediate relief in acute attacks.

Audiologist - professional who studies and tests for hearing disorders through identification and evaluation of hearing loss and the rehabilitation of hearing loss.

Barium Swallow - radiographic exam of the esophagus during and after introduction of barium sulfate.  Structural abnormalities of the esophagus may be diagnosed by the use of this technique.

Bolus - feeding given over a short period of time ranging from a few minutes to half an hour

Bronchoscope - endoscope that passes through the trachea to allow visual inspection of the tracheal area.

Bronchoscopy - examination of the bronchi through a scope.

CPAP - continuous positive air pressure.  A piece of equipment used to aid patients with breathing.

Cleft or Craniofacial Team - health care team.  The principle role of the team is to provide integrated case management for your child, to assure quality and continuity of care and to provide long term follow up.  The team usually consists of:  audiologist, geneticist, nurse, oral surgeon, orthodontist, otolaryngologist, pediatrician, pedodontist, plastic surgeon, prosthodontist, psychologist, social worker and speech-language pathologist.

Cleft Palate - opening in the roof of the mouth, generally horseshoe shaped in children with PRS.  Involves the soft palate (back part) and sometimes the hard palate.  A cleft lip is a separate condition and each can occur independent of each other.  A cleft lip is very rare in a child with PRS.

Conductive hearing loss - Conductive Hearing Loss-associated with the formation of fluid in the middle ear. Sound is heard through this fluid making the ears feel "blocked". This  type of hearing loss is USUALLY not permanent and is reversed when fluid is drained/tubes are put into place.

Decannulation - removal of the trach.

Desaturation - A drop in oxygen levels due to apnea, obstruction or other medical conditions.

Developmental Pediatrician - physician who addresses special needs or special care issues for children with special needs.

Discharge Planning Nurse - person from the hospital that is usually responsible to make sure all arrangements have been made to take care of the baby at home.  This person will coordinate any DME or nursing care and usually communicates with the insurance company.

Durable medical equipment (DME) - items such as feeding pumps, apnea monitors, pulse ox meters. 

Dysphagiainability to swallow or difficulty in swallowing.

ENT (Otolaryngologist) - Ear, nose, throat specialist

Ear tubes - Ear tubes-also known as PE (pressure equalizing), Tympanostomy, or Ventilation tubes.  Inserted during surgery called MYRINGOTOMY which creates a small incision in the eardrum. This allows fluid to be drained and the tubes to be inserted into the eardrum. The tubes allow the eardrum to remain open, letting air flow into the ear and maintains drainage of fluid. The tubes do not stick out of the ear and are not usually visible without an exam of the ear.

Early Intervention Services - programs or services designed to identify and treat a developmental problem as early as possible, before age 3.  Services for 3-5 year olds are referred to as pre-school services.

Eustachian tubes - the air duct which connects the nasopharynx (the back of the throat) with the middle ear;  usually closed at one end, opens with yawning and swallowing; allows ventilation of the middle ear cavity and equalization of pressure on two sides of the eardrum.

Feeding therapy - therapy provided by a speech/language pathologist, occupational therapist and/or dietitian to address concerns of eating and swallowing.

Fistula - abnormal opening in the palate.  They are sometimes closed surgically and many times close on their own.

Foley Catheter - generally this is the initial tube used for g-tubes.  It is also a flexible plastic tube inserted into the bladder to provide continuous urinary drainage.

Frenulum - material that attaches the lower side of the tongue to the floor of the mouth.  It is sometimes "tight" and is considered "tongue-tied."

Frenulum puddle (excessive tongue tissue near frenulum): Excess tongue tissue under the base of the tongue. Gives the appearance of two tongues stacked on top of each other.  This is a common occurrence in babies with Pierre Robin and should become less noticeable, or even disappear completely, as the child grows.  This is probably not a true medical term, but our families refer to it as either frenulum or tongue puddle.

Fundoplication - surgically reducing the size of the opening into the stomach and sewing the esophagus to it,  it is done to prevent reflux and aspiration.

G-tube - (Gastrostomy) surgical creation of a fistula through the stomach so a tube may be inserted to aide in feeding.

Gastric Emptying Test - evaluates the emptying of food from the stomach.

Gastroenterologist (GI) - physician who specializes in the study of the physiology and pathology of the stomach, intestines, esophagus, liver, gallbladder and pancreas.  These specialist will help your child if they have reflux and would be involved in care of the g-tube.

Gavage - feeding with a stomach tube or with a tube passed through the nose, pharynx and esophagus into the stomach.

Geneticist - physician that will perform a physical and order any tests needed to get an accurate diagnosis for your child. 

Glossoptsis - a dropping of the tongue downward out of normal position.

Granulization - mass of red, moist, granular tissue that develops on the surface of a wound. Often develops around the stomas of the tracheostomy tube and gastrostomy tube.

Haberman feeder - special bottle used for infants with cleft palates, they are manufactured by Medela.

Hard Palate - The front part of the roof of the mouth containing bone covered by mucosa (pink "skin")

Home health care - Agency which will provide nursing care, respiratory therapists, physical therapists and any other specialized care your child needs in your home.

Horseshoe cleft - description of the typical shape of the cleft in a child with PRS,  may be similar in appearance to a mouth guard used for sports

Hypotonia - loss of tone in the muscles or low muscle tone.

Intubation - the insertion of a tube into the larynx for entrance of air.

J-tube - surgical creation of an opening in the jejunum (second portion of the small intestine).  A tube is inserted to aide in feeding.  NOTE:  The contents of the tube bypass the stomach in this procedure.

Jaw Distraction (Mandibular Distraction) -surgery performed on a child with PRS to extend the lower jaw.  Most of the procedures are done externally and the parents use a device to turn part of the hardware to extend the jaw.

Kangaroo Pump - a feeding pump that is attached to a gastrostomy button in order to provide a continuous "drip" feeding over a period of time (Eg. through the night).

Katie Beckett Waiver - this goes by several names, dependent on the state you live in.  It is a type of grant that can be used towards nursing care, supplies and care for a special needs child. 

Larynx - enlarged upper end of the trachea below the root of the tongue.

 

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