Teaching Students with Feeding Tubes: What You Need To Know

If you work in a special education class or a day habilitation setting, more than likely you are teaching a student or an individual with complex needs including the use of a feeding tube.

According to the Tube Feeding Awareness Foundation, there are over 300 conditions that require students and individuals to receive nutritional support through tube feeding.

What is a feeding tube?

A feeding tube is a device that is inserted in the stomach wall and goes directly into the stomach. It bypasses chewing and swallowing in a student or individual who no longer has the ability to safely eat or drink. This allows for students and individuals to receive adequate nutritional support.

A feeding tube is also used for students and adults who cannot take in enough food by mouth. Feeding tubes can be temporary or permanent .

Reasons to use a feeding tube
The student or individual may have a swallowing disorder or dysphasia. This means there is an increase risk for the student or individual to aspirate their foods or liquids into their lungs. Causes of swallowing problems include low-muscle tone, brain injury, genetic conditions, sensory issues, neurological conditions, cleft lip/palate and birth defects of the esophagus or stomach.
Types of Feeding Tubes

Gatro Feeding Tube

The gastrostomy tube (G tube) is placed through the skin into the stomach. The stomach and the skin usually heal in 5-7 days. This type of tube is generally used in people with developmental disabilities for long term feeding.

Nasogastric Feeding Tube

The nasogastric (NG tube)  is inserted through the nose, into the swallowing tube and into the stomach. The NG tube is typically used in the hospital to drain fluid from the stomach for short term tube feeding.

Neurological and Genetic Conditions Requiring Tube Feeding

Some students and individuals with neurological and genetic conditions often require tube feeding due to gastrointestinal issues including constipation, reflux, and abnormal food-related behaviors. It For example, it is estimate that 11% of children with cerebral palsy use a feeding tube due to difficulty with eating, swallowing, and drinking.

The following are different types of neurological or genetic conditions that may require the use of a feeding tube.

22q11.2 Deletion Syndrome

Angelman Syndrome

Aspiration

Cerebral Palsy

CDKL5 Disorder

Cornelia de Lange

Cri Du Chat Syndrome

Down Syndrome

Dravet Syndrome

Dysphasia

Edwards Syndrome

Fetal Alcohol Syndrome

Fragile X Syndrome

Hydrocephalus

Lennox-Gestaut Syndrome

Microcephaly

Ohtahara Syndrome

PPD- Not Otherwise Specified

Turner Syndrome

Trisomy 18

Spastic Diplegia

Traumatic Brain Injury

West Syndrome

Williams Syndrome

 

Signs and Symptoms of Issues related to a g-tube

Complications due to tube feeding may include:

  • constipation
  • dehydration
  • diarrhea
  • infections
  • nausea/vomiting

Aspiration

Aspiration can be caused by:

  • reflux of stomach contents up into the throat
  • weak cough, or gag reflux
  • the feeding tube is not in place
  • delayed stomach emptying
  • The head is not raised properly.

Students should be observed for aspiration during feeding. The following are signs and symptoms of aspiration:

  1. Choking or coughing while feeding
  2. Stopping breathing while feeding
  3. Faster breathing while feeding
  4. Increased blood pressure, heart rate and decreased oxygen saturation.

 

What is Tourette Syndrome?

According to the Tourette Association of America, tics are involuntary, repetitive movement and vocalizations. They are the defining feature of a group of childhood-onset, neurodevelopmental conditions known collectively as Tic disorders and individually as Tourette Syndrome.

Tics are common in childhood. The estimated prevalence of Tourette Syndrome disorder ranges from 3 to 8 per, 1,000 in school-aged children. Males are more commonly affected than females. Some people may have tic-free periods of weeks to months.

There are three types:

  1. Motor tics cause a movement including eye blinking, facial grimacing, jaw movements, and head bobbing
  2. Vocal/phonic tics produce a sound including throat clearing, grunting, hooting, and shouting
  3. Provisional tic disorders involve a person who experiences involuntary motor and/or verbal tics for one year.

Signs and Symptoms:

Tic Disorders:

  • eye blinking
  • coughing
  • throat clearing
  • sniffing
  • facial movement
  • shoulder shrugging

Vocal Tics:

  • barking or yelping
  • grunting
  • repeating what someone else says
  • shouting
  • sniffing
  • swearing

Co-Occurring Disorders Include:

  • Attention Deficit/Hyperactivity Disorder (ADHD)
  • Obsessive -Compulsive Disorder
  • Learning difficulties
  • Behavior problems
  • Anxiety
  • Mood problems
  • Sleeping issues
  • Social skills and deficits

Risk Factors

  • Temperamental- it is worsened by anxiety, excitement and exhaustion.
  • Environmental- observing a gesture or sound in another person my result in an individual with a tic disorder making a similar sound.
  • Genetic- genetics and environmental factor influences tic symptoms.

Updated on 7/6/24

What is Cerebral Palsy?

What is Cerebral Palsy?

Cerebral Palsy is a collection of motor disorders resulting from damage to the brain that can occur before, during and after birth. Congenital cerebral palsy indicates that a person developed cerebral palsy at birth which is the case of the majority of people with cerebral palsy. According to the Centers for Disease Control and Prevention (CDC), Cerebral Palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. It is the most common motor disability in childhood. It is estimated that an average of 1 in 345 children in the U.S. have cerebral palsy. For many years, it was thought cerebral palsy was due to lack of oxygen. Studies show this only accounts for 19% of all cases.

Prevalence and Characteristics

  • Around 764,000 people in the United States have at least one symptom of cerebral palsy
  • Around 10,000 babies are born each year with cerebral palsy
  • Boys are diagnosed more often than girls
  • Cerebral palsy is the most commonly diagnosed childhood motor disability in the United States
  • Over 77% of children with cerebral palsy have the spastic form
  • More than 50% of all children with cerebral palsy can walk independently
  • African American children with cerebral palsy are 1.7 times more likely to need assistance with walking or be unable to walk at all
  • Around 41% of babies and children with cerebral palsy will have limited abilities in crawling, walking and running.
  • Around 41% children with cerebral palsy in the United States have some form of a cognitive disorder
  • Behavior problems are common in children with cerebral palsy including social skills and anger issues.
  • Seizures are a common associate disorder of cerebral palsy and can range from mild to extreme severe.
  • There is no known cure

What Causes Cerebral Palsy?

Studies show that about 10 to 20 percent of children with cerebral palsy acquire the disorder after birth. This includes through infections, jaundice, RH incompatibility and severe oxygen shortage in the brain.

Types of Cerebral Palsy

Ataxic- indicates the muscle tone is too low or too loose

  • affects 5 to 10 percent of people with cerebral palsy
  • movements are unsteady and shaking
  • have difficulty making quick movements

Spastic- refers to the inability of muscle to relax

  • is the most common type of cerebral palsy
  • 70-80% of people have spastic cerebral palsy
  • will have difficulty moving from one position to another

Athetoid-uncontrolled twisting movements

  • Affects 10 to 20% of people with cerebral palsy
  • often have difficulty holding themselves in an upright position
  • muscles move involuntarily causing limbs to twitch

Classifications

Hemiplegia- The inability to move the arm and leg on one side of the body.

Diplegia-The inability to move either both arms or both legs.

Quadriplegia- A type of cerebral palsy that affects all limbs on both sides of the body

Monoplegia- A type of cerebral palsy that affects only one limb.

 Sign and Symptoms

  • Stiff muscles and exaggerated reflexes (spasticity)
  • Stiff muscles with normal reflexes (rigidity)
  • Lack of muscle coordination (ataxia)
  • Tremors or involuntary movements
  • Delays in reaching motor skills milestones
  • Excessive drooling or problems with swallowing
  • Delays in speech development or difficulty speaking

Treatment

There is no cure for cerebral palsy but can be managed through

Physical Therapy

Occupational Therapy

Speech Therapy

Counseling and behavioral therapy

Drugs

Braces and orthotic devices

Communication devices

Updated on 7/5/24

What is Inattentive ADHD?

When most people think of ADHD, hyperactivity is often what people think of. There are actually 3 subtypes of ADHD including hyperactivity, inattentiveness and a combination of both hyperactivity and inattentiveness.

What is Inattentive ADHD?

ADHD is considered one of the most common neurodevelopmental disorders which affects both children and adults. 70% of people with ADHD in childhood will continue to have it in adolescence and approximately 50% will continue into adulthood.

ADHD is described as a lack of focus and attention including not paying attention to detail and making careless mistakes, disorganizations, poor listening skills, distractibility, and constantly losing items.

There has been little research done on the inattentive type, however this is slowly changing. there are many reasons why the inattentive type is overlooked and why it is important to discuss it.  Studies show that females are more likely to have the inattentive type of ADHD. This type of ADHD is often ignored or overlooked due to its comorbidities. Females are more likely to have learning disorders such as dyscalculia (math learning difficulties) and dysgraphia (writing disorders), as well as anxiety, depression and speech and language issues.

Other challenges faced by children and adults with inattentive ADHD includes issues in executive functioning including difficulty in sequencing, staying on a task, prioritizing, and productivity.

Signs and Symptoms

According to DSM-V, a person must meet six of the nine symptoms listed below:

  1. fails to pay close attention to details or makes careless mistakes
  2. has difficulty sustaining attention in work or play
  3. does not listen when spoken to directly.
  4. fails to finish schoolwork, chores or work duties
  5. has difficulties organizing activities
  6. avoids task requiring sustained mental effort
  7. loses things
  8. is easily distracted
  9. is forgetful.

Causes

Research suggests the following play a role in the diagnosis of inattentive ADHD:

  1. Genetics
  2. environmental
  3. low birthrate
  4. stress during pregnancy

Treatment

There is no known treatment for inattentive ADHD. The following medications are used for treatment:

  • methylphenidate- used to create activity in the brain
  • lisdexamfetamin- improves concentration, helps focus attention
  • guanfacine- works to improve attention

Strategies in working with students with Inattentive ADHD:

  1. Allow enough time to complete work. students with Inattentive type take a longer in completing assignments and processing information
  2. Be specific and provide structure. Explain your expectations and ensure instructions are clear.
  3. Decrease distractions as much as you can
  4. Monitor for both depression and anxiety
  5. Help to build self-esteem
  6. Provide accommodations in areas of learning.

For adults in the workplace

  1. Vary instruction when training new staff
  2. allow frequent breaks
  3. decrease distractions
  4. use visual strategies for feedback and expectation.
Updated on 6/28/24

International Angelman Day

Date: February 15, 2024

International Angelman Day is celebrated and recognized every February 15th. The purpose is to help spread awareness and education others on the rare genetic disorder.

What is Angelman Syndrome?

Angelman syndrome is a rare genetic disorder that id also considered a developmental disability. People with Angelman syndrome will also have an intellectual disability and limited speech. Angelman syndrome generally go unnoticed until the age of 1 year. Children typically have a happy demeanor and have a fascination with water.

Symptoms
  • developmental delay
  • intellectual disability
  • epilepsy
  • microcephaly
  • short attention span
  • happy demeanor
  • hyperactivity
  • hand-flapping
Associated Behaviors
  • tongue thrusting.
  • feeding problems during infancy
  • sensitivity to heat
  • frequent drooling
  • attraction to water
Prevalence

Angelman Syndrome is a rare disorder and affects 1 in 12,000 to 20,000 a year. Equally to less than 200,000 case a year. Affects all ethnicities and sexes equally.

Update 12/29/23

Turner Syndrome Awareness Month

Date: February 1-February 29, 2024

Symbol: Butterfly

Color: Purple

What is Turner Syndrome?

It is a rare disease that occurs in between one and 2,000 birth only affecting females. Turner Syndrome has several names including Ullrich-Turner Syndrome, Bonnevie-Ullrich-Turner Syndrome. gonadal dysgenesis and 45X. This rare disease is the result of the absence of one set of genes from the short arm of one X chromosome. The syndrome was first described by American endocrinologist Henry Turner in 1938.

Characteristics of Turner syndrome include facial and physical appearance, cognitive characteristics, clinical issues and mental healthy symptoms. No two people with Turner syndrome are exactly the same therefore, not everyone will display the same characteristics:

Facial Appearance
  • down-turning eyelids
  • low-set and prominent ears
  • small jaw
  • high narrow roof of mouth
  • neck webbing
Physical Appearance
  • broad chest with widely spaced nipples
  • narrow fingernails and toenails
  • hand and feet swelling
  • short fingers
  • smaller than average height
  • skin moles
Medical Issues
  • chronic middle ear infections
  • hearing loss
  • heart, liver and kidney abnormalities
  • delayed puberty
  • undeveloped ovaries
  • greater risk for diabetes
  • high risk for celiac
  • high risk for osteoporosis
  • GERD
  • scoliosis
  • hypertension
  • high risk obesity
  • may not have menstruations
Cognitive
  • normal intelligence in some cases
  • issues with visual spatial
  • nonverbal memory
  • executive function issues
  • difficulty in understanding social cues
  • behavior issues.
Mental Health
  • low-self-esteem
  • anxiety
  • depression

Treatment

There is currently no cure for Turner syndrome. Thee following are used to treat including therapies:

  • Growth hormones
  • Estrogen replacement therapy

 

Update: 1/29/24

Moebius Syndrome Awareness Day

Date: January 24, 2024

Moebius Awareness Day brings awareness to the syndrome and to honor the birth date of Professor Paul Julius Moebius who first diagnosed the syndrome in 1888.  Congenital facial palsy was first discovered by Albrecht Von Graefe in 1880 and is considered the father of modern Ophthalmology. Moebius Syndrome Awareness Day was first recognized in 2011 by The Many Faces of Moebius.

Professor Paul Julius Moebius was a German neurologist who made contributions in the area of mental illness and understanding hysteria. He is considered one of the fathers of psychotherapy. Professor Moebius was the first to identify the syndrome as a rare type of palsy affecting facial expressions.

What is Moebius Syndrome?

Moebius syndrome is a rare, genetic disorder which is characterized by a weakness or paralysis of facial nerves. It is present at birth and affects the muscles that control eye movement and facial expressions including the inability to smile or frown. It is extremely rare and affects 1 in 50,000 to 1 in 500,000 newborns and affects all ethnicities and genders equally.

Signs and symptoms

Moebius Syndrome affects each person differently. The diagnostic criteria include facial paralysis affecting at least one side of the face, paralysis of sideways movement of the eyes and vertical movement of the eyes. Other signs include:

  • Cleft Palate
  • Dental issues
  • Motor Delays
  • Difficulty with speech
  • Difficulty swallowing
  • Inability to form facial expressions.
  • Weakness of the facial muscles
  • Dry eyes

What causes Moebius Syndrome?

The causes are unknown. However, it is felt that the condition is more likely caused by genetics involving the genes that are associated with chromosomes 3, 10, and 13.  Environmental causes are also a factor including the use of drugs during pregnancy. In some cases, it can occur in families with no history of the disorder in the family.

Moebius Syndrome is typically diagnosed through sign and symptoms and detailed patient history.

Updated 12/29/23

International Dravet Syndrome Awareness Month

Date: June 23, 2022

Epilepsy is the 4th most common neurological disorder in the United States. With children, around 400,000 have epilepsy and most are able to control their seizures and lead normal lives. Dravet Syndrome is a rare form, of epilepsy found in children. Symptoms include, developmental delays, sleeping conditions, and chronic infections. Here are 20 facts you should know about Davet Syndrome.

20facts.dravet

  • Charlotte Dravet first described severe myoclonic epilepsy of infancy in France, 1978.
  • The name was later changed in 1989.
  • It is also called Severe Myoclonic Epilepsy of Infancy (SMEI)
  • It is a rare genetic disorder affecting 1 in every 20,000-40,000 children.
  • It appears during the first year of life.
  • Developmental disabilities and abnormal EEGs are often not evident until the second of third year of life.
  • Seizures are often fever related.
  • It is rare to develop beyond the age of 5.
  • Children often experience poor development of language and motor skills.
  • Is caused by defects in a gene in 79% of cases.
  • Affects 2-5% of children in North America
  • It is induced by prolonged exposure to warm weather
  • It is associated with sleep disorder including insomnia.
  • Seizures are frequently resistant to treatment.
  • There is a higher risk of Sudden Unexplained Death in Epilepsy (SUDEP) (15-20%)
  • The onset of signs and symptoms is around 6 months old
  • Children diagnosed with Dravet Syndrome have a 85% chance of survival.
  • Development is typically normal.
  • Episodes may be frequent and prolonged.

 

National Asthma and Allergy Awareness Month

Date: May 1- May 30, 2022

National Asthma and Allergy Awareness month began in 1984 and is sponsored through the Asthma and Allergy Foundation (AAFA).

Asthma is a chronic disease that causes your airways to become inflamed, making it difficult to breathe.

Allergies are one of the most chronic diseases. It occurs when the body’s immune system sees a substance as harmful and overreacts to it causing an allergic reaction.

Facts
  • Asthma is a chronic inflammation of the lung airways that causes coughing, chest tightness, and a shortness of breath.
  • 8.3% of Americans have asthma
  • Asthma prevalence is higher in children (9.4 percent) than in adults (7.7 percent).
  • Asthma results in 439,000 hospitalizations and is 1.3 million emergency room visits annually
  • Asthma is the most chronic illness in childhood
  • More than 3,500 people die of asthma each year
  • Asthma symptoms can be triggered by exposure to an allergen
  • Asthma is often hereditary
  • There sis no cure for asthma
  • Weather conditions such as extremely dry, wet or windy weather can worsen an asthma condition.
  • About 32 million Americans have food allergies
  • About 24 million Americans have hay fever

Ways to bring awareness:

Educate yourself by downloading a factsheet: AAFA Asthma Facts and Figures April 2021

Use tools to educate family, friends, school and work

Follow on organizations on social media

Order a T-shirt

raise money and donate to a nonprofit organization

Prader Willi Syndrome Awareness Month

Date: May 1- May 31, 2022

What is Prader Willi Syndrome?

Prader Willi Syndrome is a genetic disorder resulting from an abnormality of chromosome 15 such as a loss of active genes. In most cases (70%) the paternal copy is missing and in some cases (25%), will exhibit two maternal copies of Chromosome 15. The genetic disorder was initially described by John Langdon Down and was named after Drs. Andrea Prader, Heimrich Willi and Alexis Labhart in 1956 and is found in 1 in 20,000 births affecting both sexes. It is also the most common recognized genetic form of obesity.

During childhood, individuals diagnosed with Prader-Willi Syndrome tend to eat constantly leading to obesity and for some, type 2 diabetes will develop. This complex disorder affects appetite,growth, metabolism, cognitive functioning and behavior.

Signs and Symptoms

People with Prader-Willi Syndrome (PWS) tend to never feel full (hyperphagia) which leads to constant eating. Signs in infants include, problems with strength, coordination and balance. Often there are feeding problems at birth, delayed speech and gross motor development. Children may be born with almond-shaped eyes and undeveloped sexual organs. Cognitive disabilities and developmental delays may also be present.

As children began to grow, constant craving for food often leads to behavior challenges including hoarding food, eating frozen food and food left in the garbage causing controlling or manipulative behavior.

Medical Issues

Medical concerns may include the following:

  • Sleep Apnea
  • Respiratory/Breathing
  • High pain tolerance
  • Severe stomach illness
  • Difficulty with vomiting reflex
  • Excessive appetite
  • Binge eating
  • Eye problems
  • Choking
  • Hypothermia
  • Leg Swelling
  • Consuming unsafe items
  • Negative reactions to medications

The Foundation for Prader Research puts out daily fact sheets during awareness month. You can subscribe here. Download here for a fact sheet.

#praderwillawarenessmonth