Tag Archives: signs and symptoms

Teaching Students with Feeding Tubes: What You Need To Know

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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?

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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?

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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?

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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

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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

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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

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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

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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

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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

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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

Is Williams Syndrome the Same as Down Syndrome?

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Published by: Medicinet.com

What is Williams syndrome?

Williams syndrome is a genetic disorder that affects approximately one in 25,000 births. The syndrome is named for Dr. J.C.P. Williams, who first diagnosed the condition. He saw a pattern in children at his hospital receiving treatment for cardiovascular problems. These children shared traits like similar facial features and an unusually friendly and outgoing demeanor.

Williams syndrome is also called:

  • Beuren Syndrome
  • Early Hypercalcemia Syndrome with Elfin Facies
  • Elfin Facies with Hypercalcemia
    • Hypercalcemia-Supravalvar Aortic Stenosis
    • WBS
    • Williams-Beuren Syndrome
    • WMS

    What is down syndrome?

    Of all chromosomal conditions, Down syndrome is the most common with one in 700 babies diagnosed with Down syndrome. Most people are born with

    46 chromosomes, but those with Down syndrome have an extra copy of chromosome 2.

    While the physical features and behaviors are very similar, there are three different types of Down syndrome: Click here to read the rest of the story.

National Cerebral Palsy Awareness Month

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Date: March 1- March 31, 2022

March is National Cerebral Palsy Awareness Month and is used to bring awareness and to educate the general public.

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 mot 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.

Resources

 

Feeding Tube Awareness Week

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Date: February 8-12. 2022

The Feeding Tube Awareness Week was created by the Feeding Tube awareness Foundation organization to increase awareness of feeding tubes and enteral feeding. The first awareness week was launched in 2011. The mission of Awareness week is to promote the positive benefits of feeding tubes as life saving medical interventions. Each year, the third week of February is designated as Feeding Tube Awareness Week.

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 increased 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.
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

Resources:

Book Review: My belly Has Two Buttons

Updated 12/29/23

What is Obsessive Compulsive Disorder?

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Obsessive- Compulsive Disorder (OCD) is defined as a disorder that includes two core symptoms- obsessions and compulsions. According to the Census for Disease Control and Prevention (CDC), obsessions are defined by:

  • Thoughts, impulses, or images that occur over and over again. These thoughts, impulses or images are unwanted. They cause a lot of anxiety and stress.
  • The person who has these thoughts, impulses or images tries to ignore them or tries to make them go away.

Compulsions are defined as:

  • Repeated behaviors or thoughts over and over again or according to certain rules that must be followed exactly in order to make an obsession go away.
  • The person feels that the purpose of the behaviors or thoughts is to prevent or reduce distress or prevent some feared event or situation.

What is Childhood Disintegrative Disorder?

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Did you know that Childhood Disintegrative Disorder is  considered part of Autism Spectrum?

Childhood Disintegrative Disorder (CDD) is a condition where a child develops normally and achieves appropriate milestones up to the age of 4 and then begins to regress in both developmental and behavioral milestones and lose the skills they already learned. with a loss o skills plateauing around the age of 10.

Childhood Disintegrative Disorder is rare. It affects 1.7 in 100,000 and affects males at a higher rate than females. It is also known as Heller’s Syndrome and Disintegrative psychosis. The causes are unknown but may be linked to issues with the brain and nervous systems with some researchers suggesting it is some form of childhood dementia.

First discovered by Dr. Theodor Heller in 1908, Dr. Heller began publishing articles on his observation of children’s medical history in which he reported that in certain cases, children who were developing normally began to reverse at a certain age.

Signs and Symptoms

Children begin to show significant losses of earlier acquired skills in at least two of the following areas:

  • Lack of play
  • Loss of language or communication skills
  • Loss of social skills
  • Loss of bladder control
  • Lack of motor skills

The following characteristics also appear:

  • Social interaction
  • Communication
  • Repetitive interests or behaviors

Due to the small number of reported cases, it is included in the broad grouping of autism spectrum disorder in DSM-V under pervasive developmental disorder (PDD).  Although grouped with the autism spectrum disorder diagnosis, there are distinct differences. For example, children with CDD were more likely to be diagnosed with severe intellectual disability, epilepsy and long term impairment of behavior and cognitive functioning.

Resources

NCBI

Summit Medical Group

What is a Visual Impairment?

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According to the Centers for Disease Control and Prevention (CDC), approximately 6.8% of children younger than 18 years in the United States have a diagnosed eye and vision condition and 3% of children younger than 18 years are blind and visually impaired. Visual disability is one of the most prevalent disabilities disabilities among children.

According to IDEA’s definition, visual impairment is defined s including blindness means an impairment in vision that even with correction, adversely affects a child’s educational performance. The World Health Organization (WHO), classifies visual impairment as occurring when an eye condition affects the visual system and one or more of its vision includes both partial sight and blindness

Classifications

The World Health Organization uses the following classification based on visual acuity in the better eye:

  • 20/30 to 20/60- mild vision impairment
  • 20/70 to 20/160- moderate visual impairment
  • 20/200 to 20/400- severe visual impairment
  • 20/500 to 20/1,000- profound visual impairment
  • More than 20/1,000- considered near-total visual impairment
  • No light perception- considered total visual impairment or total blindness
Types of Visual Impairment
  • Strabismus– a condition when the eyes do not align with each other (crossed eyes)
  • Congenital cataracts– a clouding of the eyes natural lens present a birth.
  • Retinopathy of prematurity– a blinding disorder that affects prenatal infants that are born before 31 week of gestation.
  • Coloboma- a condition where normal tissue in or around the eye is missing at birth.
  • Cortical visual impairment– a visual impairment that occurs due to brain injury.
Signs of Visual Impairments
  • Appears “clumsy” in new situation
  • Shows signs of fatigue or inattentiveness
  • Does not pay attention when information is on the chalkboard or reading material
  • Is unable to see distant things clearly
  • Squints
  • Eyes may appear crossed
  • Complains of dizziness.
Causes

The causes of childhood blindness or visual impairment is often caused by Vitamin A deficiency which is the leading cause of preventable blindness in children. Other causes include genetics, diabetes, injury and infections such as congenital rubella syndrome and chickenpox before birth.

Cortical Visual Impairment (CVI)

Cortical Visual Impairment in children is attributed to brain dysfunction rather than issues with the eyes. Causes included hypoxia, traumatic brain injury, neonatal hypoglycemia, infections and cardiac arrest.

 

 

References

World Health Organization (WHO)

www.cdc.org

Attention Deficit Hyperactivity Disorder (ADHD) Page

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Definition:

Attention Deficit Hyperactivity Disorder (ADHD)  is a neurological disorder characterized by a pattern of inattention and/or hyperactivity-impulsivity that disrupts functioning in both children and adults

The DSM-V defines ADHD as a persistent pattern of attention and or hyperactivity-impulsivity that interferes with functioning of development. Inattention symptoms include the following:

  1. often fails to give close attention to details
  2. often has difficulty sustaining attention in task or play activities
  3. often does not listen when spoken to directly
  4. Often does not follow through on instructions
  5. Often has difficulty organizing task and activities often avoids, dislikes or is reluctant to engage in task that requires sustained mental effort.

Hyperactive symptoms include:

  1. trouble paying attention
  2. restlessness
  3. excessive talking
  4. loud interaction with others
  5. frequent interventions
  6. may have a quick temper

Awareness Day: None

Awareness Month: October

Ribbon: Orange

Prevalence:

  • ADHD is a condition characterized by inattentiveness, hyperactivity and impulsivity
  • It is one of the most common neurodevelopmental disorders of childhood
  • It is usually diagnosed in childhood and last into adulthood
  • People diagnosed with ADHD may have difficulty paying attention and or controlling impulsive behavior
  • 70% of people with ADHD in childhood will continue to have it in adolescence
  • 50% will continue into adulthood
  • ADHD is not caused by watching too much, parenting or having too much sugar
  • ADHD may be caused by genetics, brain injury or low birth weights
  • Is a highly genetic, brain-based syndrome that has to do with the brain regulation in executive functioning skills
Prevalence

UNITED STATES

Children & Adolescents

The 2016 National Survey of Children’s Health (NSCH) interviewed parents and reports the following ADHD prevalence data among children ages 2–17 (Danielson et al. 2018):

  • 6.1 million children (9.4 percent) have ever been diagnosed with ADHD. This includes:
    • About 388,000 young children ages 2-5 (or 2.4 percent in this age group)
    • 2.4 million school-age children ages 6-11 (or 9.6 percent in this age group)
    • 3.3 million adolescents ages 12-17 (or 13.6 percent in this age group)
  • 5.4 million children (8.4 percent) have a current diagnosis of ADHD. This includes:
    • About 335,000 young children ages 2-5 (or 2.1 percent in this age group)
    • 2.2 million school-age children ages 6-11 (or 8.9 percent in this age group)
    • 2.9 million adolescents ages 12-17 (or 11.9 percent in this age group)
  • Treatment used by children ages 2-7 with a current diagnosis of ADHD:
    • Two out three were taking medication (62 percent).
    • Less than half received behavioral treatment in the past year (46.7 percent).
    • Nearly one out of three received a combination of medication and behavioral treatment in the past year (31.7 percent).
    • Nearly one out of four had not received any treatment (23 percent).
  • Severity of ADHD among children ages 2-17:
    • 14.5 percent had severe ADHD
    • 43.7 percent had moderate ADHD
    • 41.8 percent had mild ADHD
  • Co-occuring conditions (children ages 2-17):
    • Two out of three children (63.8 percent) had at least one co-occuring condition.
    • Half of all children (51.5 percent) had behavioral or conduct problems.
    • One out of three children (32.7 percent) had anxiety problems.
    • One out of six children (16.8 percent) had depression.
    • About one out of seven children (13.7 percent) had autism spectrum disorder.
    • About one out of 80 children (1.2 percent) had Tourette syndrome.
    • One in a hundred adolescents (1 percent) had a substance abuse disorder.
  • By race or ethnicity (children ages 2-17):
    • 8.4 percent White
    • 10.7 percent Black
    • 6.6 percent Other
    • 6.0 percent Hispanic/Latino
    • 9.1 percent Non-Hispanic/Latino

Adults with ADHD

  • 4.4 percent of the adult US population has ADHD, but less than 20 percent of these individuals seek help for it.
  • 41.3% of adult ADHD cases are considered severe.
  • During their lifetimes, 12.9 percent of men will be diagnosed with ADHD, compared to 4.9 percent of women.
  • About 30 to 60 percent of patients diagnosed with ADHD in childhood continue to be affected into adulthood.
  • Adults with ADHD are 5 times more likely to speed
  • Adults with ADHD are nearly 50 percent more likely to be in a serious car crash.
  • Having ADHD makes you 3 times more likely to be dead by the age of 45
  • Anxiety disorders occur in 50 percent of adults with ADHD.

Teaching Resources

The following links provide tools, resources and information for parents and special education educators on providing support to children diagnosed with ADHD.

Accommodations

Information on classroom accommodations including teaching techniques, learning style, schedule, environment, material, assistance and behavior management.

8 easy classroom accommodations for students with ADHD( Blue Mango)

10 ways to support students with hyperactivity and attention needs  (The Starr Spangled Planner)

Accommodations for ADHD students (ADDCoach4U)

Classroom accommodations for ADHD(Understood)

Every 504 plan should include these ADHD accommodations (ADDitude)

Top 20 ADHD accommodations and modifications that work (Promoting Success Blog)

Classroom Tips and Strategies

The following links are tips and strategies that are specific to teaching techniques and helpful information on behavior approaches, rewards, eliminating distractions and seating arrangements

15 strategies to help students with ADHD (Student Savvy)

30 ideas for teaching children with ADHD (Kelly Bear)

50 practical strategies for teaching ADHD without drugs (ASCD Edge)

ADHD and piano lesson teaching strategies (Teach Piano Today)

ADD/ADHD in the classroom: Tips for teachers and parents (hsana.org)

ADHD Teaching Strategies for the Classroom( Promoting Success Blog)

Classroom interventions for ADHD (pdf)

Classroom rules that keep student’s attention on learning (Additude)

Helping the student with ADHD in the classroom (LDonline)

How can teachers help students with ADHD (Education World)

Ideas and strategies for kids with ADD and learning disabilities (Child Development Institute)

Setting up the classroom (ADD in Schools)

Supporting students with ADHD (Free Spirit Publishing)

Teaching students with ADHD: Instructional strategies and practice (U.S. Department of Education)

Tips for teaching students with ADHD(ADHD Kids Rock)

Concentration

Tips and information from websites on helping students concentrate in the classroom.

5 simple concentration building techniques for kids with ADHD (Empowering Parents)

5 ways to improve your child’s focus (Understood)

17 ways to help students with ADHD concentrate (Edutopia)

Ways to improve concentration in kids with ADHD (Brain Balance)

Executive Functioning

Executive functioning helps students analyze a task, planning, organization, time management and finishing a task. The following links provide articles on understand executive functioning and its relationship to ADHD.

Classroom strategies for executive functioning (Understood)

Executive functioning explained and 20 strategies for success (Minds in Bloom)

Executive function skills (CHADD)

Executive Functioning Issues (Understood)

Handwriting for kids with ADHD (Look! We’re Learning)

Articles:

47 hacks people with ADHD use to stay on track

10 things ADHD is- and 3 it isn’t.

Setting students with ADHD and Autism up for success

Children with ADHD and Autism are more likely to develop anxiety

Decoding the overlap between Autism and ADHD

ADHD coping strategies you haven’t tried

ADHD and math teaching resources

Great websites for women and girls with ADHD

Strategies in training employees with ADHD

Early Signs of Rett Syndrome

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Rett syndrome is a neurodevelopmental disorder occurring mostly in females in which the child exhibits reduced muscle tone, autistic-like behaviors, stereotyped hand movements consisting of wringing and waving. It is a rare disorder that affects about 1 out of 10,000 children and is the most genetic causes of severe intellectual disability in females. Due to similarities to autism and cerebral palsy, it is often misdiagnosed.

Signs similar to autism include outburst, eye contact avoidance, lack of social reciprocity, sensory issues and loss of speech. Signs of Rett syndrome similar to cerebral palsy include short stature, difficulty with walking, gait movement difficulties and delayed ability to walk.

Typically, children born with Rett syndrome develop normally until the age of 6 and 18 months and reach typical development milestones including eye contact, rolling over and grasping objects. As children grow, motor development begins to slow such as walking and muscle movement. The first signs is usually the loss of muscle tone where the child’s arms and legs appear “floppy.”

Other early signs include:

  • Loss of communication abilities
  • Unusual eye movement
  • Breathing problems
  • Irritable and crying often
  • Intellectual disability
  • Seizures
  • Scoliosis
  • Sleep disturbance
  • Irregular heartbeat
More Resources on Rett Syndrome

Over 30 Online Resources on Rett Syndrome

 

Facts and Statistics- Ataxia

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Ataxia is a rare disorder that affects both children and adults. I was quite surprise to find that very little statistics have been conducted on ataxia. this may be due to the understanding that Ataxia is not a specific disorder, rather, a condition can cause ataxia including multiple sclerosis, head trauma, cerebral palsy and infections.

Ataxia affects a child’s coordination, balance and speech while some children are born with ataxia as a result of genetics, others develop it in a progressive matter. Signs and symptoms of Acute Cerebellar Ataxia include:

  • Frequent stumbling
  • Impaired coordination affecting arms or legs
  • Unsteady gait
  • Uncontrolled eye movement
  • Difficulty performing fine motor task
  • headaches

The following are facts and statistics on the Ataxia disorder:

  • It is a degenerative disease of the nervous system
  • Symptoms, often mimic being drunk in adults such as slurred speech
  • Age of symptom can vary from childhood to late adulthood
  • rare recessive genetic disorder
  • occurs between 1 out of 40,000 and 1 out of 100,000
  • The word ataxia refers to clumsiness or a loss of balance and coordination
  • The ataxia gene was first identified in 1993
  • Ataxia is inherited
  • Ataxia is a sign of an underlying disorder
  • It is caused by damage to different areas of the central nervous system
  • The most common symptom in children is an unsteady gait
  • In some cases, ataxia can present itself rapid while in others, it is progressive.
  • The most common cause of acute ataxia in children are excessive drug ingestion and drug intoxications
  • There are from 50 to 100 different types of Ataxia.

Dysgraphia and Workplace Accommodations

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Some might be surprised to learn that there are several types of learning disabilities. Dysgraphia is describes as a learning disability that affects writing, spelling and fine motor skills. Dysgraphia is a neurodevelopmental disorder that can occur as a stand alone disorder or part of a co-occurring disorder with other disabilities such as ADHD, Autism, and Dyslexia. Typically it is diagnosed or discovered in the early years when children are beginning to learn how to write. Most adults often remain undiagnosed.

Early Signs of Dysgraphia

Signs and symptoms of dysgraphia generally begin to show up when children began to lean how to write. Early signs of Dysgraphia include:

  • Inconsistent spacing between letters
  • Poor spatial planning
  • Poor spelling
  • Unable to read own handwriting
  • Poor fine motor skills
  • Omitted words
  • Writes slow
  • Pain in hand from writing
  • Messy unorganized papers
  • Difficulty organizing thoughts on paper
  • Illegible printing and cursive letter formation
  • Slopping handwriting
  • Tight, cramped pencil grip
  • Tires quickly when writing
  • mixes upper and lower case or irregular sizes and shapes of letters.

Download a free dysgraphia checklist

Signs and Symptoms in the Workplace

A early signs that rarely disappears is having a “sloppy” handwriting. The person when writing leaves out letters at the end of a sentence, difficulty reading own handwriting after meetings, trouble with filling out routine forms, displays unorganized papers on the desk, difficulty thinking and writing at the same time and tends to mixes upper and lower case letters when writing. The person will also avoid writing when possible and show a preference to using a computer or texting neatness, line spacing, staying inside margins and capitalization rules.

Strategies to Use in the Workplace
  1. If you have a smart phone, you can use the device to record meetings, interviews or instructions that are given to you.
  2. Assitive technology such as tablets, computers and Apps are also useful in transcribing information
  3. Take the time to organize your desk before you leave work in the evening. Prioritize your workflow and create a plan for the next day.
  4. Pre-write. Before you take on the task of writing, create an outline on paper.

Signs and Symptoms of Fetal Alcohol Spectrum Disorders

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Fetal Alcohol Spectrum Disorders (FASD) according to the National Organization on Fetal Alcohol Syndrome describes the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These affects may include physical, mental, behavioral, and/or learning disabilities with lifelong implications.

Fetal Alcohol Spectrum Disorders is not a diagnosed rather, it is a term that is used to describe a wide-range of effects on a person whose mother drank alcohol during her pregnancy. Fetal Alcohol Spectrum Disorders, show in three areas: abnormal facial characteristics, slowed growth and the central nervous system.

Fetal Alcohol Spectrum Disorders affects each person differently. Signs and symptoms include the following:

  • Abnormal facial features including a smooth ridge between the nose and upper lip
  • Small head size
  • Shorter than average height
  • Poor coordination
  • Hyperactive behavior
  • Difficulty with attention
  • Poor memory
  • Difficulty in school
  • Learning disabilities
  • Speech and language delays
  • Intellectual disability or low IQ
  • Poor reasoning and judgement skills
  • Sleep and sucking problem
  • vision and hearing problems
  • Seizures
  • Processing information
  • Problems with the heart and kidneys
  • Poor concept of time
  • Trouble getting along with others
  • Staying on task

Aspiration Precautions

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Children and adults with developmental disabilities often face challenges with eating, drinking and swallowing disorders than the general population. It is estimated that adults with intellectual disabilities require support from caregivers during mealtime. It is common among people who have a diagnosis of cerebral palsy, intellectual disability, physical  disability and muscular dystrophy.

Dysphasia is a medical term used to describe any person having difficulty swallowing foods and liquids taking  more energy and time to move food from the mouth to the stomach. Signs of dysphasia may include:

  • Drooling
  • Food or liquid remaining in the oral cavity after swallowing
  • Complaints of pain when swallowing
  • Coughing during or right after eating or drinking
  • Extra time needed to chew or swallow
  • Reflux of food

Dysphasia can lead to aspiration. Aspiration is defined when food, fluid, or other foreign material gets into the trachea or lungs instead of going down the esophagus and into the stomach. when this occurs, the person is able to cough to get the food or fluid out of their lungs, in some cases especially with children and adults with disabilities may not be able to cough. This is known as Silent Aspiration.

A complication of aspiration is Pneumonia which is defined as inhaling food, saliva, and liquids into the lungs

According to the Office of People with Developmental Disabilities Health and safety Alert, factors that place people at risk for aspiration include:

  • Being fed by others
  • Weak or absent coughing, and/or gag reflexes, commonly seen in people with cerebral palsy.
  • food stuffing and rapid eating/drinking
  • Poor chewing or swallowing pills
  • GERD- the return of partially digested food or stomach contents to the esophagus
  • Providing liquids or food consistencies the person is not able to tolerate such as eating whole foods.
  • Seizures that may occur during eating and/or drinking.

How to recognize signs and symptoms of Aspiration:

  • Choking or coughing while eating or just after eating
  • Drooling while eating or just after eating
  • Eyes start to water
  • Shortness of breath
  • Fever 30 minutes after eating
Intervene immediate if there are signs of aspiration:
  • Stop feeding immediately
  • Keep the person in an upright position
  • Call 911 if the person has difficulty or stops breathing and no pulse
  • Start rescue breathing

Minimize aspiration from occurring by serving the appropriate food texture and liquid consistency. If you are not sure of the right consistency, check with your health care provider. The following are pictures of food consistencies.

Courtesy of OPWDD

Courtesy of OPWDD

Whole. Food is served as it is normally prepared; no changes are needed in
preparation or consistency

Courtesy of OPWDD

1 ” Pieces cut to size. Food is served as prepared and cut into 1-inch pieces
(about the width of a fork).

Courtesy of OPWDD

1/4 Pieces Cut to Size. Food is cut with a knife or a pizza cutter or placed in a food
processor and cut into ¼ -inch pieces (about the width of a #2 pencil)

Courtesy of OPWDD

Ground. Food must be prepared using a food processor or comparable equipment
until MOIST, COHESIVE AND NO LARGER THAN A GRAIN OF RICE, or relish
like pieces, similar to pickle relish. Ground food must always be moist. Ground meat
is moistened with a liquid either before or after being prepared in the food processor
and is ALWAYS served with a moistener such as broth, low fat sauce, gravy or
appropriate condiment. Hard, dry ground particles are easy to inhale and must be
avoided.

 

Courtesy of OPWDD

Pureed. Food must be prepared using a food processor or comparable equipment.
All foods are moistened and processed until smooth, achieving an applesauce-like or
pudding consistency. A spoon should NOT stand up in the food, but the consistency
should not be runny. Each food item is to be pureed separately, unless foods are
prepared in a mixture such as a soup, stew, casserole, or salad.

Aspiration Precautions

  • Make sure the person eats slowly and takes small bites of food
  •  Ensure the person takes small sips of liquids
  • Focus on the person’s swallowing
  • Make sure the person remains upright for a minimum of thirty minutes after eating

Cystic Fibrosis Awareness Month

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According to the Cystic Fibrosis Foundation, cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe overtime. It is a life-threatening disorder that damages the lungs and digestive system. A thick mucus can block the lungs and the pancreas.

In the United States, about 30,000 people are affected by the disease. It is estimated that more than 70,000 people worldwide are living with cystic fibrosis. 1 in every 20 Americans is an unaffected carrier of an abnormal CE gene.

Wikipedia

Common symptoms of cystic fibrosis include:

  • Salty-tasting skin
  • Persistent coughing
  • Shortness of breath
  • Wheezing
  • Poor weight gain in spite of excessive appetite
  • Greasy, bulky stools
  • Repeated lung infections
  • Muscle and joint pain
  • Sinus infections.

Cystic Fibrosis does not affect any cognitive or learning abilities. However, the student may need modifications and supports due to the disease. Teachers with students with cystic fibrosis should be knowledgeable about the disease.

15 Facts About Cri Du Chat Syndrome

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Cri-Du Chat (cat’s cry) is a rare genetic disorder that results when a piece of the 5p chromosome is deleted. The name is French for “cry of the cat,” referring to the high-pitched cat-life cry. Other characteristics include intellectual disability, hyperactivity, and delay development. below are some more facts on this rare disease.

Click here to download PDF article

  • Cri du Chat is French for cat’s cry or crying cat
  • The syndrome gets its name from the infant cry which is similar to a meowing kitten
  • The cry is due to issues with the larynx and nervous system
  • About one third of children lose the cry by the age of 2 years.
  • It is also known as 5p- (5p minus)
  • The size of the deletion varies among affected individuals
  • Cri du chat syndrome is not inherited.
  • About 10 percent of people with cri du chat syndrome inherit it from an unaffected parent.
  • Is a chromosomal condition that results when a piece of chromosome 5 is missing
  • People diagnosed with cri du chat tend to have distinctive facial features
  • Occurs in an estimated 1 in 20,000 to 50,000 newborns
  • Cri du chat is found in  people of all ethnic backgrounds
  • It was first described by Jerome Lejeune in 1963
  • It is more common in females by a 4.3 ratio
  • It is a rare genetic disorder
  • In some cases, cri du chat syndrome may go undiagnosed
  • Children born with cri du chat syndrome are more likely to have developmental delays
  • The symptoms of cri du chat vary from person to person
  • Both children and adults with cri du chat are often seen as cheerful and friendly.

 

References

Genetic and Rare Diseases Information Center

National Organizations of Rare Diseases

Williams Syndrome- Facts and Statistics

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Click here to download PDF article

May is Williams Syndrome Awareness Month. It is a rare genetic condition that affects over 1 in 10,000 people worldwide. If you teach in a special needs classroom or work in an adult day habilitation program, it is likely you have experienced working and teaching a student or individual diagnosed with Williams Syndrome. Below you will find some interesting facts and statistics on the disorder:

  • It is a genetic condition that is present a birth.
  • It is a developmental disorder
  • Tend to have a mild or moderate intellectual disability.
  • It is also known as Beuren Syndrome and Williams-Beuren Syndrome.
  • The symptoms were first described by John C.P. Williams in 1961.
  • A year later, German Physician, A.J. Beuren described three new incidents of patients with similar facial features.
  • It is caused by the spontaneous deletion of 26-28 genes on Chromosome #7
  • The deletion is caused by either the sperm or the egg.
  • The deletion is present at the time of conception
  • The most common symptoms of Williams Syndrome includes unusual facial features and heart defects.
  • The diagnosis is typically confirmed after identifying facial features and genetic testing.
  • An individual with Williams Syndrome has a 50% chance of passing the disorder on to their children.
  • Williams Syndrome affects 1 in 10,000 people worldwide.
  • An estimated 20,000 to 30,000 people in the United States are affected.
  • It occurs in both males and females equally
  • It is found in every culture
  • Individuals with Williams Syndrome tend to be overly friendly.
  • People with Williams Syndrome often have difficulty with visual-spatial tasks
  • Congenital heart defects (CHD) occur in approximately 75 percent of children
  • By the age of 30, the majority of individuals with Williams Syndrome have pre-diabetes or diabetes.

 

 

References

Genetics Home Reference

National Organizations for Rare Diseases

William Syndrome Association

25 Developmental Disability Links and Resources You Should Know About

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March is Developmental Disabilities Awareness month! Although I blogged  the definition of developmental disabilities here, I wanted to give you more information besides the Federal regulation. Quite often, people are confused between the definition of an intellectual disability and a developmental disability.

A developmental disability is described as an assortment of chronic conditions that are due to mental or physical impairments or both. For example, you may have a child or an adult with an intellectual disability or perhaps a person diagnosed with cerebral palsy and an intellectual disability. It is also considered a severe and chronic disability that can occur up to the age of 22, hence the word developmental. A developmental disability can occur before birth such as genetic disorders (i.e. cri du chat, fragile x syndrome,) or chromosomes ( i.e. Down syndrome, Edwards syndrome); during birth (lack of oxygen) or after birth up to the age of 22 (i.e. head injuries, child abuse or accidents).

The disability is likely to occur indefinitely meaning the person will require some type of ongoing service throughout their lives. Finally, the person must show limitations in 3 or more of the following areas of major life activities:

  1. Self-care– brushing teeth, hand-washing and combing hair independently
  2. Receptive and expressive language-ability to understand someone talking and to also be understood
  3. Learning– ability to read and write with understanding
  4. Mobility-ability to move around without any assistance
  5. Self-direction– time management, organization
  6. Capacity for independent living– requiring no supervision
  7. Economic self-sufficiency – having a job  and purchasing what one needs

The following are links to articles on various types of developmental disabilities including resources with facts and statistics, organizations, and sign and symptoms.

22q11.2 Deletion Syndrome

27 things to know about Fragile X Syndrome

ADHD- facts and statistics

Angelman Syndrome

Angelman syndrome resources

Cri Du Chat Resources

Developmental disability acronyms you should know 

Developmental disability awareness ribbons

Down syndrome-facts and statistics

Down syndrome timeline

Duchenne Muscular Dystrophy

Early Intervention- Resources and Information

Edward Syndrome Resources

Global developmental delays

Intellectual Disability Resources

Over 30 online resources on Rett syndrome

Pervasive DD-NOS

Prader Willi Syndrome Resources

Resources for teaching students with Down syndrome

Ring Chromosome 22 Resources

Teaching self-regulation and autism spectrum disorder

Things to know about Angelman Syndrome

Turner Syndrome Characteristics

What is Prader Willi Syndrome?

William-Beuren Syndrome Resources

What is Lowe Syndrome?

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Lowe Syndrome also known as Oculocerebrorenal Syndrome is a rare genetic disorder that affects the eyes, brain and kidneys. It has a prevalence of 1 in 500,000 and mainly affects males.

Click here to download PDF version

Signs and Symptoms
  • Congenital cataracts
  • eye abnormalities and eye disease
  • glaucoma
  • kidney abnormalities (Renal Fanconi Syndrome)
  • dehydration
  • abnormal acidic blood
  • progressive kidney problems
  • feeding problems
  • bone abnormalities
  • scoliosis
  • weak or low muscle tone (hypotonia)
  • joint problems
  • developmental delays including motor skills
  • short stature
  • intellectual disability
  • seizure
  • behavioral issues

Children and adults diagnosed with children and adults may also show the following signs and symptoms due to an intellectual disability:

  • decrease learning ability
  • delays in crawling
  • delays in sitting up
  • difficulty solving problems
  • lack of curiosity
  • language and speech delays
  • poor memory
  • behavior problems
Teaching Strategies

The following strategies will help when teaching a child or an adult diagnosed with Lowe Syndrome:

  • Use short and simple sentences to ensure understanding
  • Repeat directions
  • Teach specific skills when possible
  • Use strategies such as chunking, backwards shaping, forward shaping and role modeling.
  • Use concrete information
  • Provide immediate feedback

Image thanks to Robert Thomson on Flickr.com (creative commons)

Resources

National Organization for Rare Disorders

Genetics Home Reference

Dove Med

Wikipedia

Teaching Strategies For Students With A Nonverbal Learning Disorder

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Nonverbal Learning Disorder is a disorder you may or nay not heard of. It shares similar characteristics to autism such as the challenge in reading body language but is also quite different. By learning the signs and symptoms of nonverbal learning disorder, the better chance you have in using effective teaching strategies.

Nonverbal learning disorder is defines as a person who has difficulty in interpreting and understanding non verbal cues in the environment If 93% of how we communicate is nonverbal, a person with nonverbal learning disorder is only getting 7% of daily communication.

Dr. Byron P. Rouke of the University of Windsor developed the following criteria to assess nonverbal learning disorder:

  1. Perceptual deficits usually on the left side of the body. The child has difficulty understanding or perceiving information through the skin of both hands but the left hand has more difficulty than the right.
  2. Tends to be clumsy
  3. Difficulty with visual-spatial organizational skills. Finds it difficult to organize notes.
  4. Difficulty when encountering new information.
  5. Difficulty in knowing what is expected of you and hard to see the bigger picture
  6. Distort sense of time. Time is abstract and non-linear
  7. Well-developed, rote and verbal capacity
  8. Repetitive way of speaking
Signs and Symptoms
  • Excellent vocabulary and verbal expression
  • Excellent memory skills
  • unable to see the bigger picture
  • Poor motor and coordination skills
  • Difficulty with reading
  • Difficulty with math reading problems
  • Fear of new situations
  • May have symptoms of anxiety, depression
  • Misreads body language
  • Well-developed vocabulary
  • Better auditory processing skills than visual processing skills
  • Focus on details

Teaching Strategies For Parents and Teachers
  • Give assignments in chunks
  • Give constructive feedback
  • Create a daily class routine and stick to them
  • Write the class schedule on the board
  • Provide several verbal cues before transition
  • Give the student time to preview and prepare for new activities such as group projects
  • Minimize transitions
  • Offer added verbal explanations when the student or child seems confused
  • Teach in sequential steps
References

Rondalyn Varney Whitney/OTR, Nonverbal learning disorder: Understanding and coping with NLD and Aspergers: What parents and teachers need to know (2008)

Woliver, Robbie (2008) Alphabet Kids: From ADD to Zellwer Syndrome.

Learning Disabilities of America

Understood

Common Signs In Tactile Difficulties

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Tactile difficulties occur when the nervous system dysfunctions and the brain is unable to process information through the senses. Some children and adults with this form of sensory processing disorder will be over sensitive to touch. Between 5 to 13 percent of the population is diagnosed with sensory processing disorder.

Common Signs of Tactile Difficulties
  • Difficulty with having nails cut or teeth brushed
  • Becomes upset when hair is washed
  • Dislikes any clothing with tags including clothes, hats, shoes, and complains about the type of fabric and the style
  • Dislikes getting their hands dirty or messy
  • Overreacts when they are touched by other people
  • Oversensitive to temperature change
  • Over or under reacts to pain
  • Prefers deep pressure touch rather than light touch
  • Avoids messy textures
  • Prefers pants and long sleeves in hot weather
  • Picky eater
  • Eyes may be sensitive to cold wind
  • Avoids walking barefoot
  • Avoids standing close to other people
  • May be anxious when physically close to other people
Strategies for Handling Tactile Defensiveness
  • Use deep pressure
  • use weighted items including blankets, vest and backpacks
  • Seek out an OT
  • Utilize a sensory diet
  • Minimize time expected to stand and wait in line by having the child go first or last in line
  • Allow the child to wear a jacket indoors
  • Encourage the child to brush his or her body with a natural brush during bath time
  • Create activities using play doh or silly putty
References

Autism Parenting Magazine

Kids Companion

Sensory Processing Disorder.com

Chu, Sidney (1999), Tactile Defensiveness: Information for parents and professionals

Epilepsy Links and Resources

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Epilepsy is a neurological disorder which causes seizures through electrical impulses occurring in the brain. It is the fourth most common neurological disorder. Epilepsy affects 50 million people worldwide. In the U.S., 1 out of 26 people are affected. Want to learn more? click on the articles below.

37 helpful epilepsy resources

Apps for tracking seizure

Benign Roladric Epilepsy

Epilepsy Facts

Epilepsy driving and state regulations

Epilepsy-General Information

Lennox-Gastaut Syndrome

Ohtahara Syndrome

November is epilepsy month

West Syndrome

What you need to know about Dravet Syndrome

When an employee has a seizure

What to do when someone has a seizure

 

 

 

Children and Ring Chromosome 20 Syndrome

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What is Ring Chromosome 20 Syndrome?

Ring Chromosome 20 Syndrome is a chromosomal disorder that is the result of a ring that develops when a chromosome breaks in two places and the short arm of a chromosome has merged with the tip of the long arm.

This anomaly causes recurrent seizures during childhood. It is reported that the seizure can occur at anytime from during the day time to sleeping at night, it is very rare. In fact only 50 cases have been reported in research journals. However, this form of epilepsy can occur from birth to 17 years old.

What makes this rare form of seizures unique is that it does not respond to anti-epileptic medication. Vagus Nerve Stimulation (VNS) tends to be successful as well as the Ketogenic diet in reducing the number of seizures.

Children diagnosed with Ring Chromosome 20 Syndrome typically experience several types of seizures including:

  • Focal seizure
  • Non-convulsive status epilepticus
  • Frontal lobe seizures
  • Tonic seizures
  • Generalized tonic-clonic seizures
Signs and Symptoms

Children with Ring Chromosome 20 Syndrome generally face challenges in the area of behavioral, learning disabilities and intellectual disabilities. In some instances, children may display physical characteristics including slow growth, short stature and a small size head.

Signs and Symptoms of Intellectual Disability
  • Decrease learning ability
  • Delays in crawling
  • Difficulty solving problems
  • Lack of curiosity
  • Language and speech delays
  • Poor motor skills
  • Short attention span
Teaching Strategies
  • Use short and simple sentences
  • Repeat directions
  • use strategies for remembering such as clustering information together
  • Provide immediate feedback
Signs and Symptoms of learning disabilities
  • Difficulty recognizing non-verbal cues such as facial expression
  • Fine motor skills difficulty
  • Weak visual discrimination abilities.
Teaching Strategies
  • Use a multi-sensory approach
  • Break into small steps
  • use probing techniques
  • use diagrams and pictures.
References

Genetics Home Reference

Rare Chromosome Organization

Wikipedia

Great Websites for Women and Girls With ADHD

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According to the Centers for Disease Control and Prevention (CDC), boys are more likely to receive a diagnosis of ADHD due to the symptoms in girls are more subtle and typically do not fit the stereotype. Girls are more likely to daydream, fidget, chatty, overly emotional, and appear “less difficult or “less difficult” than boys.

Women with ADHD are more likely to eating disorders, obesity, low-self-esteem, depression and anxiety.The following websites provide helpful information on ADHD for women and girls.

Signs and Symptoms

  • The following sites includes information on identifying the signs and symptoms of ADHD in both women and girls.

ADHD affects women differently: What to look for, how to fix it (Health)

ADHD in girls: Symptoms, treatment and more (Healthline)

Gender differences in ADHD (Psych Central)

Common ADHD symptoms in women totally ADD ( Totally ADD)

Common symptoms of ADD and ADHD in women (Health Central)

Girls and ADHD: Are you missing the signs? (Teacher)

How ADHD is different for girls (WebMD)

It’s different for girls with ADHD (The Atlantic)

Understanding ADHD in Women (U.S. News)

Understanding the signs of ADHD in girls (Very Well)

Women and Girls– by National Resources on ADHD (CHADD)

Parenting

  • Managing a child diagnosed with ADHD can be challenging. The following articles share tips on raising a child with ADHD. Additional information includes strategies for both children and teens with ADHD.

8 secret tips for parents of children with ADHD (Empowering Parents)

8 things I wish people knew about parenting a child with ADHD (Understood)

12 rules for parenting a child with ADHD (ADDitude)

ADHD parenting tips (Help Guide)

Does your parenting style work for ADHD (Impact ADHD)

Parenting kids with ADHD: 16 tips to tackle common challenges (Psych Center)

Parenting strategies for helping kids with ADHD (MSU)

Parenting teenagers with ADHD (Healthy Children)

Your ADHD child: Easy parenting techniques (Child Development Institute)

Tips for parents with ADHD raising kids with ADHD (Parenting)

Resource Articles- Girls

  • The following links includes articles specifically on girls with ADHD including parenting a child with ADHD and unique challenges girls face.

Advice for parenting girls with ADHD (Lifescript)

Girls with ADHD face unique challenges (Smart Kids)

How girls with ADHD are different (Child Mind Institute)

Understanding girls with ADHD symptoms and strategies (Great Schools)

Resource Articles

  • Below includes a listing of resources on a variety of articles specifically for women with ADHD. Women face a number of challenges including managing and organizing the home and workplace. Additional challenges may include raising a child also diagnosed with ADHD. (ADHD is often inherited).

6 ways to manage clutter with ADHD (Health Center)

ADHD: A women’s issue (American Psychological Association)

ADHD is different for women (The Atlantic)

Adult women are the new face of ADHD (The Daily Beast)

Against the wind: How it feels to be a woman with ADHD (ADD Free Sources)

Decades of failing to recognize ADHD in girls has created a lost generation of women (Quartz)

I’m a woman with ADHD and here’s why I didn’t know until I was 28 (Bustle)

Is ADHD different for women and girls (Scientific American)

Suffering in Silence: Women with adult ADHD (Medicine. Net)

The hidden struggle for women with ADHD (Broadly)

The new ADHD debate every woman should know about (HuffPost)

“That explains everything!” Discovering my ADHD in Adulthood (ADDitude)

This is how ADHD impacts women and why support communities (Mind)

What it’s like to have ADHD as a grown woman (The Cut)

Websites

  • There are a number of websites that are geared towards women with ADHD. I like the websites described below. These sites are written by women with ADHD which includes personal stories and helpful information.

ADHD Roller Coaster– Author, Gena Pera’s website provides news and essays on adult ADHD

Kaleidoscope Society– A website for and by women with ADHD

Smart Girls with ADHD– A website written by women with ADHD includes resources and personal stories.

Testing

  • The following sites includes a checklist and testing if you believe you have diagnose of ADHD.

A symptom checklist for ADHD in Women

The ADHD test for girls

The ultimate ADHD test for teen girls

Duchenne Muscular Dystrophy

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February 13th is the first day of Duchenne Muscular Dystrophy Awareness Week. Here are some facts on Duchenne Muscular Dystrophy:

  • It is one of the nine types of muscular dystrophies
  • Duchenne muscular dystrophy was first described by French neurologist, Guillaune Benjamin Amand Duchenne in the 1860’s.
  • It is an inherited disorder
  • It is caused by an absence of dystrophin, a protein that bonds the muscle cell
  • It is characterized by progressive muscle degeneration
  • It occurs in about 1 out of every 3,600 male infants
  • Risks include a family history of Duchenne muscular dystrophy
  • Symptoms start appearing between the ages of 3-5.
  • By the age of 12, most males affected may lose their ability to walk
  • Breathing difficulties and heart disease usually start by the age of 20
  • Very rare are females affected by the disease.
  • Early symptoms include muscle weakness in the hips, pelvic area, thighs and shoulders.
  • By teen years, the heart and respiratory muscles are affected.
  • Duchenne muscular dystrophy carriers are females with one normal dystrophin gene on one x chromosome and an abnormal dystrophin gene on the other x chromosome
  • Most carriers do not show any signs or symptoms.
  • Affected children may have delayed motor skills including sitting, standing and walking.
  • Survival into the early 30’s is becoming more common due to advances in cardia and respiratory care.
  • Duchenne is associated with a heart disease that weakens the cardiac muscle
  • Between 400 and 600 boys in the United States are born with these conditions each year.
  • there are a few cases which results from new mutations in affected males
  • steroid drugs can slow the loss of muscular strength
  • There is no known cure for Duchenne muscular dystrophy