Sunday, 7 July 2013

Spinal Cord Injuries General Information

Spinal cord injuries (SCI) refer to any physical damage to the spine. To understand SCI, it is important to first understand what the spine is. The backbones (also known as vertebrae) have a tunnel in the middle of each bone where the spinal cord runs down. This cord (the spine) is a pathway for your brain to connect to the rest of the body and control movement, sensation and other functions. To be able to visualize this, please watch Spinal Cord Injury Complete or Incomplete - Everything You Need To Know- Dr. Nabil Ebraheim.

Any damage to the spine causes the path to be disrupted and consequentially, loss of sensation and movement anywhere below the damage. This is why spinal cord injuries are mainly classified by how high up in the body the cord is damaged. However, not all damage result in complete loss of function below the injury. Depending on the how heavily the cord was damaged, there is a spectrum of how much function a person has. A complete loss of function below the level of injury is referred to as complete spinal cord injury. With a partial spinal cord injury, a person may lose control of their body below the damage but still feel sensation or vice versa, they may just have weaker sensation and strength, and some individuals have only one side of the body impaired.

Terminology

Many times, when we hear about a spinal cord injury, they are referred to with foreign abbreviations used such as “C4” or T1”. These letters and numbers refer to how high along the spine, the damage occurred (remember that any part of the body below the damage is affected).

C = cervical (neck level)
T = thoracic (chest level)
L = lumbar (lower back level)
S = sacral (buttocks level)
*Each level is further divided into numbers from the highest sublevel being 1. For a more thorough and specific breakdown, please watch Levels of Function in Spinal Cord Injury.

Prevalence

As of 2012, approximately 86 000 Canadians were living with a spinal cord and there is an estimated 4 300 cases of injury per year. Individuals with SCI’s have a lower life expectancy of 15-30 years than the average Canadian and require approximately 30 times more hours of home care services. There is also a huge financial burden for these individuals as it can cost $1.6 to $3 million for care over their lifetime.


What to Do if Someone may have damaged their Spinal Cord

The most important period that determines the chances and extent of recovery from a SCI is immediately after a person has sustained injury to the spinal cord. Common causes of spinal cord injuries are motor vehicle accidents, falls, violence, and sport incidents. However, any injury that could possibly hurt the neck, or back should be treated as if there is a SCI and the first aspect to address is immobilizing the head, neck, and back. This is important because movement of the vertebrae after injury can cause more damage leading to a significantly lower chance of recovery. That is why paramedics will completely immobilize someone that may have a SCI even before bringing them to the hospital. Always call 911 if someone is suspected to have a head or SCI.

*Note that the procedure if someone is suspected to have a head injury is more extensive and is not covered in this post on SCIs

From First Aid & CPR Manual by Canadian Red Cross and http://www.brainandspinalcord.org/spinal-cord-injury/statistics.htm


Warning Signs that someone may have a Spinal Cord Injury

SCI’s may not be immediately noticeable after an accident. That is why it is important to see a physician after an accident even if there does not seem to be any signs of SCI.

Physicians will typically perform an imaging test such as an MRI (magnetic resonance imaging) to see if there is damage to the backbones or spine. An MRI works by using a magnetic field, radio waves, and computer technologies to obtain an image of the internal body.

There are also certain points to look out for within the week after an accident. Since the spinal cord relays information for both movement and sensation, loss of these two aspects are assessed for SCI’s.

Signs of movement, or motor function, impairment include weak grips, inability to pull or push with regular strength, not able to get up from a chair, and any other muscle weakness symptoms.

Sensory function loss will result in a person not being able to feel or notice something that comes in contact with their skin below the level of damage. A preliminary test would be to use a pen to stroke a person along their leg then squeezing their fingers and shoulders and ask if they are able to feel these tests performed on them.

Remember that the loss of motor function and sensation will be below the level their cord is damaged. For example, someone that has damaged their cord in the lower back will have normal grip strength.

From: http://www.youtube.com/watch?v=g3Kl5VKdEwI, http://www.brainandspinalcord.org/Rehabilitation-spinal-cord-injury/mri-spinal-cord-injury/index.html and the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI)


Prevention

Many cases of SCI’s are preventable. As explained in the “What To Do if someone may have Damaged their Spinal Cord”, the most common causes of SCI’s are motor vehicle accidents, falls, violence, and sport incidents. The chances of sustaining a SCI or, equally as disastrous, causing someone to have a SCI can be greatly reduced by taking precaution.

Motor Vehicle Accidents

Taking a defensive driving course and assuring you follow all traffic laws (wearing a seatbelt, not driving under the influence, staying within speed limits, etc.) is perhaps one of the best preventative measures to spinal cord injuries. Appropriate safety seats for babies and young children and correct positioning of the seats is extremely important for their safety.

Falls

Erect gates that block infants from accessing stairs will prevent accidents. Setting up railings and proper lighting where there is a chance someone could fall (such as beside bathtubs or dark hallways) are also helpful. Lastly, keeping your environment clean decreases the chances of slipping on objects.

Sports Incidents

Assure that everyone is wearing suitable protective equipment during physical activity to prevent SCI’s.

Shaken Baby Syndrome

A baby or child may cry for a long period of time and induce so much frustration in some people that they shake the baby. At this stage in their life, the child is still fragile and violent shaking can cause a SCI, fractures, other disabilities, and even death. NEVER shake a baby. Calm yourself down by taking deep breaths and contact a crisis line or other sources of help to deal with this issue.

From: First Aid & CPR Manual by Canadian Red Cross


How can a Spinal Cord Injury Affect Someone’s Life?

As there is such a large range in SCI severity, the effect it has on people’s lives vary considerably as well. Individuals that have an injury in the higher neck region may require a ventilator to breathe and not be able to move their arms. This severe case limits many aspects of that person’s life. They become dependent on a caretaker for everyday tasks. Some other consequences of cervical SCIs are incontinence, muscle loss, and difficulty regulating blood pressure and heart rate.

Injuries at all levels require extensive rehabilitation with professionals and on one’s own time. This can take up a large portion of one’s daily life. Rehabilitation is not limited to physical aspects. Mental care is also required after facing such a life-changing event. 

Pressure ulcers (also called pressure sores or bed sores) can arise in individuals with SCI’s. A pressure sore is damage to the skin and below the skin, and can reach as far down as the bone. It is caused by pressure and friction on a part of the body for an extended period of time. This can be caused by the weight of person on a particular part of the body because they do not shift their position. The average person changes their posture quite often without noticing it. However, a person with a SCI cannot move their body below the level of damage and are highly susceptible to developing bed sores. Bed sores can lead to other complications including infections, deep tissue damage, and even death. Please refer to the “Options for Individuals with Spinal Cord Injuries (Smart-e-Pants)” below for technology that can greatly reduce the chances of developing pressure ulcers.

Severe SCIs affect the entire family. Whether family members are the ones caring the individual after their SCI or a caretaker is hired, families must adjust to this change. Contacting a social worker or a support network will help guide the family through this transition. Some organizations to contact in Alberta include Alberta Supports (1-877-644-9992) and Catholic Social Services. Facing a SCI may feel overwhelming and it is important to keep in mind, there is help available!


Options for Individuals with Spinal Cord Injuries

Surgery

After a SCI, there may be pieces of bone that are in contact with the spinal cord or the cord may be inflamed causing compression by the backbones. The patient may require surgery to remove these pieces or relieve pressure on the cord. There have been studies, such the Surgical Treatment of Acute Spinal Cord Injury Study (STASCIS), that reveal surgery within the first day of a SCI can greatly increase the recovery process as opposed to waiting longer. However, depending on how the cord was damaged and condition of the individual, surgery may not always be appropriate. An example would be a car accident where the patient is too weak to undergo a surgery as it may put their life at risk.


Medication

Medication may be prescribed by a physician to reduce inflammation around the spinal cord. The primary purpose of this is to prevent compression on the spinal cord leading to more damage. Medication to reduce pain may also be prescribed. It is important to ask and follow the physician’s instructions regarding medication since improper use can manifest various side effects.


Therapy

An individual with a SCI may work with more than one type of therapist depending on the extent of their injury. For an individual that is hospitalized, initial therapy sessions mostly begin inside the hospital facility. The individual may then follow up by visiting the hospital for therapy sessions, visiting a therapy clinic, or having a therapist come to their home.


Physical Therapy

Most people with SCIs will undergo physical therapy (also known as physiotherapy). A physiotherapist will provide exercises and support that helps an individual regain their mobility and function. They will also work to teach basic manoeuvres of a wheel chairs and other equipment necessary for moving. Beginning therapy early is beneficial since it allows strength to be regained before there is significant muscle loss. Waiting longer than necessary to begin may make the recovery process more difficult and even prevent recovering to the extent that should be possible.

Occupational Therapy

Occupational therapists (OT) focus on helping the individual regain their ability to perform activities of daily living. Fine motor skills may be lost with a SCI and occupational therapists are trained to assist these individuals increase their ability to live independently. This will include training the muscles to perform the fine motor functions and providing advice for purchasing helpful equipment. OTs also help an individual find new ways to adapt and enjoy their lives. Relevant leisure and sports activities are often introduced by OT's.


Research and Technology


Extensive research is being conducting on new methods to help people with SCI’s regain function. The University of Alberta conducts research on Intraspinal Microstimulation (ISMS); a technique that uses implanted electrodes to stimulate the spinal cord below the level of damage. The research focuses on using this technique to recreate the walking motion in people with SCI.



New technology is being created as we learn more about SCI’s. One of these innovative inventions is Rewalk, an electrically powered mechanical attachment that assists paraplegic individuals with walking. It physically moves the legs with a remote the person can control with their hand.


Functional Electrical Stimulation

Functional Electrical Stimulus (FES) is a technique that uses electrodes to provide a low current to stimulate nerves connected to muscles. This causes the muscles to activate and move which allow people with weakened or paralyzed muscles to perform exercises. For people with incomplete SCI’s, it helps them regain muscle function. For individuals with complete SCI’s, exercising the muscles that are no longer able to move has been known to reduce the occurrence of chronic diseases associated with inactivity. The Steadward Centre, located at the University of Alberta, is one program that offers FES. Some physiotherapy clinics may also offer FES.



To combat pressure ulcers, a University of Alberta research group invented Smart-e-Pants: an underwear that provides small scale electrical stimuli every 6-10 minutes. These tiny shocks are enough to cause the muscles in someone to twitch. It allows a person who cannot move anymore to mimic normal fidgeting (posture change) which able-bodied people regularly engage in.

Wheelchairs

Wheelchairs can be very expensive and there are many different types that accommodate one’s specific needs. Whether an individual has a complete, incomplete, or temporary SCI and requires a wheelchair, Alberta Aids to Daily Living is a good resource that helps with the financial aspect of purchasing a wheelchair. They also have a list of the wheelchair vendors across Alberta that provide medical equipment to eligible individuals and may also be available to answer questions about choosing a suitable wheelchair.


Spinal Cord Injuries in the Classroom

The classroom can become a frightening place for a child that has a SCI if consideration for the student is neglected. Parents, teachers, the principal, others involved in the school system, and the children themselves must work together to create a positive environment for the child.

If a child is attending a new school, or has recently had a complete SCI, parents must be organized and act as early as possible in contacting the principal of the school. For a child attending a new school, parents should contact the school well before the school year begins. Together, they can plan and prepare everything ahead of time so the student will have immediate access to the required services when the school year begins. Such services include: accessible ramps, safety plans in case of fires or other emergencies, accessible washrooms, and transportation.  It is important to remember that referrals and evaluations to receive government support takes time as well.

Teachers should be informed of any special concerns they should be aware of. Some students with SCIs may have difficulty controlling their bladder and require their desk to be close to the door so they can access the washroom quickly and easily. Damage to T6 and above may need special medical attention where it is imperative that teachers are able to notice signs that the child may be in danger.

Teachers and other staff must also work together to modify or find new activities that are inclusive. Inclusion does not mean students with SCI’s should be given separate tasks and activities; neither does it mean activities should exclusively revolve around them. Rather, they should be able to participate and play with other students in activities everyone can enjoy. Of course, not all activities can be shaped in this way and it is up to the teachers, staff, students, and the child to come up with what they can do in these situations.

Knowledge is an important determinant of whether a student will have a positive experience in the classroom. Knowing that they are not alone is important for their psychosocial development. Luckily, there are many books, both fiction and non-fiction, that reveal the experiences of children which have had SCI’s. By searching in your local library, one can find an abundance of resources. Even simply searching the word “wheelchair” in the online public library search box returns many results for books that are geared towards children.

Another part of knowledge is educating the entire school. SCI’s will most likely be foreign to many students and can lead to misunderstandings about someone with a SCI. Inviting a guest  speaker that has sustained a SCI to tell their story to the school is a good way to expose children to why safety is important and what it is like to live with a SCI. This allows students to empathize and ultimately create an environment of understanding.

College and university students that have SCI’s should be aware that there are usually services available provided by their student’s union. These services provide the resources required to give students with disabilities an equal chance to succeed in their academic pursuit. Such resources include copies of other students’ notes, information on scholarships that are for students with disabilities and more.

Communication is key in helping a child with a SCI. Since the ultimate goal is to help the child, it is important that they are able to have input on what they want for themselves. A child cannot make all of their own decisions of course but sometimes we become so focused on what we think can help a child, we actually forget to ask the child if that is what they want for themselves. Asking them to voice their opinion is the first step in empowering the individuals and providing them with the freedom they deserve.



Resources

Brain and Spinal Cord

National Institute of Neurological Disorders and Stroke

Christopher and Dana Reeve Foundation


Thursday, 27 June 2013

Emotional and behavioral disorders (EBD) is a broad category which is used commonly in educational settings, to group a range of more specific perceived difficulties of children and adolescents. Both general definitions as well as concrete diagnosis of EBD may be controversial as the observed behavior may depend on many factors.

In the US, having EBD in a child means that they exhibit one or more of the following characteristics to a marked degree for a long duration of time that adversely affects their education:
  1. Difficulty to learn that cannot be explained by intellectual, sensory, or health factors.
  2. Difficulty to build or maintain satisfactory interpersonal relationships with peers and teachers.
  3. Inappropriate types of behavior (acting out against self or others) or feelings (express's the need to harm self or others, low self-worth, etc.) under normal circumstances.
  4. A general pervasive mood of unhappiness or depression.
  5. A tendency to develop physical symptoms or fears associated with personal or school problems.
Taken and adapted from  https://en.wikipedia.org/wiki/Emotional_disability


By themselves, EBDs have little effect on a child's intrinsic intellectual ability. However, the issues caused by EBD may distract or prevent a child from receiving meaningful learning opportunities, delaying their development and endangering their odds for academic or life success. EBD is also often found co-morbid with developmental or intellectual disabilities.


The specific EBDs covered in this blog are:

- OCD / OCPD
- Depressive and/or maniac disorders
- Alcohol related disorders and defects / FAS / FASD 
- Schizophrenia
- Generalized anixety disorder

Saturday, 22 June 2013

Developmental disability is a term used in the United States and Canada to describe lifelong disabilities attributable to mental or physical impairments, manifested prior to age 18. It is not synonymous with "developmental delay" which is often a consequence of a temporary illness or trauma during childhood. Developmental disabilities affect between 1 and 2% of the population in most western countries, although many government sources acknowledge that statistics are flawed in this area. The worldwide proportion of people with developmental disabilities is believed to be approximately 1.4%. It is twice as common in males as in females, and some researchers have found that the prevalence of mild developmental disabilities is likely to be higher in areas of poverty and deprivation, and among people of certain ethnicities.

The causes of development disabilities are numerous - some examples include pregnancy complications, abnormal genes, traumatic brain injury, or growth and/or nutrition problems. Symptom presentation is also varied - some people may suffer from some form of physical or biological disability. People with development disabilities are more likely than the general populace to present with mental health issues, experience abuse or exhibit challenging behavior. They have a history of being oppressed or marginalized by society, and it is only in the last half century that sufferers have began to gain some acceptance. Today, there are a great variety of government and nonprofit programs available to support people with developmental disabilities with things such as educational training, residential support, and employment support. There is no universal presentation between the types of developmental disabilities, or even within any one type of disability. Two people who have the same diagnosis may have significantly different symptoms and behavior. 


The types of developmental disabilities covered in this blog are:

- Down syndrome
- ADHD
- PDD
- Aspergers
- Autism

Tuesday, 18 June 2013

Learning disabilities is a classification including several areas of functioning in which a person has difficulty learning in a typical manner, usually caused by an unknown factor or factors.

While learning disability and learning disorder are often used interchangeably, the two differ. Learning disability refers to significant learning problems in an academic area. These problems, however, are not enough to warrant an official diagnosis. Learning disorder, on the other hand, is an official clinical diagnosis, whereby the individual meets certain criteria, as determined by a professional (psychologist, pediatrician, etc.) The difference is in degree, frequency, and intensity of reported symptoms and problems, and thus the two should not be confused. When the term "learning disabilities" is used, it describes a group of disorders characterized by inadequate development of specific academic, language, and speech skills.

Learning disabilities are life long. However, with appropriate cognitive/academic interventions and technology assistance many can overcome the effects of their disability. Individuals with learning disabilities can face unique challenges that are often pervasive throughout the lifespan. Depending on the type and severity of the disability, interventions and current technologies may be used to help the individual learn strategies that will foster future success. Some interventions can be quite simplistic, while others are intricate and complex. Current technologies may require student training to be effective classroom supports. Teachers, parents and schools can create plans together that tailor intervention and accommodations to aid the individual in successfully becoming independent learners. School psychologists and other qualified professionals quite often help design the intervention and coordinate the execution of the intervention with teachers and parents. Social support may improve the learning for students with learning disabilities.

From http://en.wikipedia.org/wiki/Learning_disability


Learning disorders are often considered an 'invisible' disorder in that it is not usually readily apparant when an individual suffers from one. Those who have a learning disorder are often ashamed of it and try their best to hide it. Others are not aware that they possess such a disorder and may assume that they are just dumb, or that everyone else has the same struggles they do. Hence, people tend to underestimate how common this type of disability is. Learning disabilities do not discriminated based on age, gender, race, socioeconomic class or any other such factor. The main place where learning disabilities are very readily apparent is in the education system. This information network is intended to help parents and educators identify possible learning disorders in children and youth, and help them understand how to support the student to overcome their challenges and succeed.


The specific learning disorders covered by this blog are: 

- Dyslexia
- Dysgraphia
- Dyscalculia  

Wednesday, 12 June 2013

A physical disability is any disability which limits the physical function of one or more limbs . Other physical disabilities include impairments which limit other facets of daily living, such as cerebral palsy or deafness. The three major categories of physical disabilities are mobility impairment, visual impairment and hearing impairment.

Physical disabilities are purely physiological impairments. Even the most severe of physical disabilities does not directly affect a person's intellect, awareness, cognitive ability or potential for intellectual or academic success. However, physical disabilities tend to be highly visible either in appearance or behavior. People with physical disabilities may have a strange abnormal appearance or they may act in unexpected ways. Those differences often lead to heavy stigmatization of physically disabled persons which may lead to impairments in social interactions or the devaluation of an individual. In essence, they are blocked by able-bodied people from having an equal opportunity to succeed when they are fully capable of doing so. Most physical disabilities are permanent or semi-permanent and do not affect a person's intellectual capability, so the strategies taken with them mainly revolve around overcoming stigmas and giving them the tools they need to compete on an equal footing with their able bodied peers.


The physical disabilities covered in this network are:

- Deafness
- Blindness
- Cerebral Palsy
- Spinal cord injuries 


Hello, and welcome to the informative blog network on disabilities!

Here, you will find information about many disabilities and other challenges that are commonly faced by students in the education system. When a child presents with exceptional challenges, the greatest asset for helping them succeed is awareness and knowledge. This network is a concise repository of knowledge not only about the disabilities and challenges themselves, but also implications for a classroom where at least one student has the condition and advice for both parents and teachers. At the end of each section, there are several links that can be used as starting points for finding other information resources if further research is necessary. This network is not intended to be comprehensive - rather it provides brief and succient summaries of the major points and features of each disability, and invites further user-driven research. There is a dedicated page for each disability, grouped under one of three broad categories. All information contained within should be supplemented by the advice of a trained medical profession following a examination of the child. The information here is meant as a starting point, and the recommendations of professionals take precedence over anything stated in those pages.


Physical Disabilities Overview
- Deafness
- Blindness
- Cerebral Palsy
- Spinal cord injuries


Learning Disabilities Overview
- Dyslexia
- Dysgraphia
- Dyscalculia 


Developmental Disabilities Overview
- Down syndrome
- ADHD
- PDD
- Aspergers
- Autism

 
Mood and Emotional Disabilities Overview
- OCD / OCPD
- Depressive and/or maniac disorders
- Alcohol related disorders and defects / FAS / FASD
-  Schizophrenia
- Generalized anixety disorder


Thursday, 6 June 2013

Pervasive Developmental Disorder (PDD)

Pervasive Developmental Disorder is a general term that refers to a group of five disorders characterized by delays in  the development of multiple basic functions including socialization and communication. The five disorders are the following:
  • Pervasive developmental disorder not otherwise specified (PDD-NOS)
  • Autism, the best-known
  • Asperger syndrome
  • Rett syndrome; and
  • Childhood dis-integrative disorder (CDD)
PDD is noticed as early as infancy and its specific onset is prior to three years of age. The disorder does not affect life expectancy.

From: http://en.wikipedia.org/wiki/Pervasive_developmental_disorder

PDD-NOS: General Information

One of the five disorders classified as Pervasive Developmental Disorder (PDD). The disorder is characterized by impairment in social interaction,  poor verbal and non verbal communication skills, or the presence of stereotyped behavior, interests and activities. In PDD-NOS, symptoms are present but are not severe enough to meet the criteria for another disorder under the PDD umbrella. PDD-NOS is also called atypical autism.

It is not always true that PDD-NOS is milder than autism; some symptoms may be milder while others may be more severe.

From: http://en.wikipedia.org/wiki/Pervasive_developmental-disorder_not_otherwise-specified


Diagnosis


Diagnosis
Social Impairment
-Possess difficulty making friends or become a part of a group.
-Tend to avoid eye contact
-Unable to relate with other people.
-Lack interest in making friends or become a member of a group
-Prefer to spend time alone
Communication Impairment
-Difficulty with managing self-expressions.
-Inability to interpret verbal or non-verbal cues, such as facial expressions, jokes, or forms of emotional expression.
Repetitive Behavior
-Perform the same behavior, such as lining up objects in a row or obsessively talking about the same subject,  in a repetitive manner.
-Obsessed with taking certain foods, playing certain methods or routines.

From:  http://www.aspergerstestsite.com/411/pdd-nos-criteria-symptoms/#.UZVQorWkons and  http://en.wikipedia.org/wiki/Pervasive_developmental_disorder_not_otherwise_specified


Test



 There is a limited number of tests available for people to conduct self-diagnosis of PDD-NOS. It is very difficult to diagnose PDD-NOS since it is a general term for many conditions within the Autism Spectrum.  One of the common tests used for PDD-NOS assessment is the Geneticquotient test.
  
Below is a link to a PDD assessment scale/ screening questionnaire. It should be used as basic tool for PDD-NOS identification. One is highly recommended to take the patient to a medical professional for further confirmation.

http://www.childbrain.com/pddassess.html

From:  http://www.childbrain.com/pddassess.html and http://www.aspergerstestsite.com/411/pdd-nos-criteria-symptoms/#.UbJQWflJ4f0

 

PDD-NOS Resources

JanyaGirl website: resource for people with PDD-NOS
http://jaynagirl.cwd-cragin.com/

PDD-NOS on Facebook

https://www.facebook.com/OurPDDNOS

Rett Syndrome: General Information

Rett Syndrome, also called cerebroatrophic hyperammonemia, is a neuro-developmental disorder that mostly affect females but it has been found in male patients as well. It is characterized by small hands and feet, a deceleration of the head growth rate, repetitive and specific hand movements, such as putting hands into the mouth repeatedly.  Patients affected by Rett Syndrome are prone to gastrointestinal disorders. Up to  80% of people with Rett Syndrome have seizures. Poor verbal and/ or motor skills, scoliosis, growth failure, and constipation are common as well.

From: http://en.wikipedia.org/wiki/Rett_syndrome



Diagnosis
  • Scientists develped a genetic test to complement the clinical diagnosis, which involves searching for the MECP2 mutation on the child's X chromosome. 
  • A highly specific set of guidelines are used for Rett Syndrome assessmet. The set of guidelines are divided into three types of clinical criteria: main, supportive, and exclusion. The presence of any of the exclusion criteria negates a diagnosis of classic Rett syndrome.
  • Main diagnostic criteria or symptoms: -partial or complete loss of acquired purposeful hand skills -partial or complete loss of acquired spoken language
    -repetitive hand movements (such as hand wringing or squeezing, clapping or rubbing)
    -gait abnormalities, such as toe-walking or an unsteady, wide-based, stiff-legged walk.
  • Supportive criteria:-scoliosis
    -teeth-grinding
    -small cold hands and feet in relation to height
    -abnormal sleep patterns
    -abnormal muscle tone
    -inappropriate laughing or screaming
    -intense eye communication
    -diminished response to pain.
From: http://www.ninds.nih.gov/disorders/rett/detail_rett.htm#221333277

Prevalence
Rett syndrome is mostly found in females, affecting about one out of 10,000 to 15,000 girls. Rett syndrome in boys is extremely rare. Most males who are born with the condition die shortly after birth.


Warning Signs

Warning Signs
Language
-Impaired communication and cognitive abilities. 
-Loss of the ability to speak at around 12 to 18 months.
Compulsive hand movements
-Engagment in repetive hand movement, such as
-hand wringing
-hand washing
-hand clasping
-hand clapping or tapping
-moving the hands towards the mouth
Apraxia (Loss of ability to perform task or movements.)
-Loss of the ability to perform motor skills, such as walking or crawling, eye gazing and speaking. 
Breathing irregularities
-Apnea (breath-holding)
-Hyperventilation (over breathing)
-Air swallowing
Other neurological symptoms
-Seizures
-Sleep disruption
-Tremors
-Excess salivation
-Cognitive disabilities
Symptoms affecting other parts of the body
-Gastrointestinal problems, such as reflux and constipation
-Heart rhythm abnormalities
-Orthopedic problems such as scoliosis
-Microcephaly (small head size)
-Low muscle tone
-Dystonia (abnormal muscle tone and position)
-Toe walking
-Teeth grinding
-Difficulty with chewing

From: http://www.ninds.nih.gov/disorders/rett/detail_rett.htm#221333277

Rett Syndrome in The Classroom

In the classroom, children with Rett syndrome requires assistance in many areas, such processing speed, memory, and listening comprehension skills. To help children with Rett syndrome increase their processing speed, the educator should provide additional time for the students to respond and complete homework. Oral speech should be paired with visual presentation. The educator should also assess the students to determine greatest area of need with processing and to determine an attainable goal for the student to work on. For memory skill improvement  educator should practice repetition during classes and constantly check students for understanding. Try to avoid using complex instructions. To boost the students' listening comprehension skills, extra time for processing of oral information should be provided. Oral instructions paired with visual ones will increase the level of understanding in students. Educator can also provide notification to the students to focus on listening before important information is given. Many more helpful tips can be found at the following website:: http://www.teachspeced.ca/index.php?q=node/756

From: http://www.teachspeced.ca/index.php?q=node/756

 

Rett Syndrome Resources

International Rett Syndrome Foundation (IRSF)

Rett Syndrome Website

http://www.bundlings.com/irsg.htm


 

Child Dis-integrative Disorder: General Information

 
CDD, also known as Heller's Syndrome is a rare condition characterized by late onset (> age of 3) of developmental delays in language, social function, and motor skills. The cause of the disorder is presently unknown. 

CDD is similar to autism and it is sometimes considered a low-functioning form of it. However, an apparent period of fairly normal development is often noted before a regression in skills or a series of regressions in skills. As a result, many children are already somewhat delayed when the disorder becomes apparent. 


Diagnosis


The most common criteria: Loss of previously acquired skills. To identify whether a child has CDD, he or she must show at least two of the following criteria:
  • Loss or reception of receptive Language Skills (language understanding)
  • Loss or reception of expressive language skills (spoken language) therefore cannot partcipate in a conversation, may stop talking at some point.
  • Loss or reception of social or self-help skills (cannot be comformted by parents or understand the emotions of others, show no interests in pretend play)
  • Loss or reception of motor Skills
  • Loss or reception of bowel or bladder control, if previously established
  • Inability to start a conversation
  • Poor communication with nonverbal signals (smiles, gestures, nodding the head, etc)
  • Loss of interest in establishing relationships with other people
  • Engagement in strange, repetitive behavior and strict routine
  • Development of seizures


Note: One difference that separates CDD from all other PDD disorders is that a CDD patient must develop normally for at least two years before loss of skills occurs, and the loss must occur before age them. 


Test


The health care provider should determine whether the child has CDD. The most important sign of CDD is the loss of developmental milestones. In general, the patients lose functions in at least two areas of development. Several tests exist to help detect CDD. These are:
  • Medical history examination
  • Genetic tests
  • Neurological Examination
  • Communication and Language test
  • Blood test for lead poisoning
  • Hearing test
  • Vision test
  • Behavior inventory
  • Developmental test
From: http://www.ethosbodyandmindclinic.com/childhood-disintegrative-disorder-hellers-syndrome and http://cmccare.org/Health-Library/HIE%20Multimedia/1/001535.htm

How Can CDD Affect My Child?

Children with CDD lose normal communication skills, non-verbal behaviors and previous skilled they have already learned. The development of children with the disorder appear to be normal for the first two years of life, but they then lose skills in areas such as language, play, and bowel control. They also suffer from impaired social interaction and communication. Performance of repetitive acts is common among CDD patients. 


CDD in the Classroom

Some of the practices educator may use to educate children with CDD are stated below:

  • Use task variation, educator should try assign different tasks to a student to avoid the development of repetitive behaviors.
  • Provide precise, positive praise so that students feel more confident about their performance.
  • Use meaningful reinforcements
  • Use age-appropriate materials during lectures
  • Provide opportunities for choice
  • Break down oral instructions and use various ways to present concepts (visually, orally, ,and physically)
  • Use concrete examples and hand-on activities
  • Introduce unfamiliar tasks in a familiar environment
  • Direct and broaden fixations into useful activities
  • Maintain a list of individual strengths and interests. Then keep the students aware of their specific strengths and let them shine in the area that interests them. 
From: http://education.alberta.ca/media/511995/autism.pdf, Chapter 5: Class Instruction

 

CDD Resources


Mayo Clinic: CDD