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Failure to Thrive

Fact Sheet

What Is Failure to Thrive?

Although it has been recognized for more than a century, Failure to Thrive Syndrome (FTT) lacks a precise definition. This is partly because it describes a condition rather than a specific disease. Children who fail to thrive do not receive, or are unable to take in, retain, or utilize the calories needed to gain weight and grow as expected.

Most diagnoses of Failure to Thrive Syndrome are made in infants and toddlers in the first few years of life (a crucial period of physical and mental development). After birth, a child’s brain grows as much in the first year as it will grow during the rest of the child’s life.

How is it manifested?

A child who has stopped growing and/or has experienced significant weight loss may be suffering from Failure to Thrive Syndrome. A medical assessment is necessary to determine whether the syndrome is a medical or a non-medical condition.

The following characteristics are often present in failure-to-thrive children.

  • lack of appropriate weight gain
  • irritability
  • easily fatigued
  • excessive sleepiness
  • lack of age-appropriate social response
  • does not make vocal sounds
  • delayed motor development
  • learning and behaviour difficulties later in childhood

Potential Causes

  • not enough food offered
  • child eats too little due to prematurity, developmental delays, or has sensitivity to textures and tastes
  • health problems involving the digestive system, such as gastroesophageal reflux (GER), chronic diarrhea, Cystic Fibrosis, chronic liver disease, and Celiac Disease
  • food intolerance –body is sensitive to certain foods
  • an ongoing illness or disorder
  • infections
  • metabolic disorders

Who is affected?

An accurate number of incidences of Failure to Thrive Syndrome is unknown and often depends on the population. However, approximately 5-10% of low birth weight children and children living in poverty have FTT.

How is it diagnosed or detected?

Due to the fact that children grow and develop at different rates, it is necessary for a paediatrician to keep track of a child’s growth and weight during regular checkups. In making the diagnosis, it is necessary to provide the physician with a detailed history of the child combined with a current physical examination. This includes: diet and feeding behaviours; medical history; past and current medications; social history; and family history. Growth charts for length, weight, and head circumference help in confirming the diagnosis of Failure to Thrive Syndrome..

Additional Resources:

KidsHealthhttp://kidshealth.org
About Kids Healthwww.aboutkidshealth.ca

Ontario Ministry of Health and Long Term Carewww.health.gov.on.ca

Books and Literature:

Failure to Thrive and Paediatric Undernutrition
By Daniel B. Kessler and Peter Dawson

Failure to Thrive: Recognizing and Resolving Non-Physical Feeding Disorders
By Di Hampton

The content contained in this document is for general information purposes. It is not the intention to diagnose or treat a child.

Down Syndrome

Fact Sheet

What is Down Syndrome?

Down Syndrome is a genetic condition resulting from an extra 21st chromosome which often causes delays in physical and intellectual development. It occurs in approximately 1 in every 800 live births. Individuals with Down Syndrome have 47 chromosomes instead of the usual 46.

Three genetic variations can cause Down Syndrome. Approximately 92% of the time, Down Syndrome is caused by the presence of an extra Chromosome 21 in all cells of the individual. In such cases, the extra chromosome originates in the development of either the egg or the sperm. Consequently, when the egg and sperm unite to form the fertilized egg, three, rather than two, Chromosome 21’s are present. As the embryo develops, the extra chromosome is repeated in every cell. This condition, in which three copies of Chromosome 21 are present in all cells of the individual, is called Trisomy 21.

In approximately 2-4% of cases, Down Syndrome is due to Mosaicism. This situation is similar to Trisomy 21 but, in this instance, the extra Chromosome 21 is present in some, but not all, cells of the individual. For example, the fertilized egg may have the right number of chromosomes, but, due to an error in chromosome division early in embryonic development, some cells acquire an extra Chromosome 21. Thus, an individual with Down Syndrome due to Mosaic Trisomy 21 will typically have 46 chromosomes in some cells, but will have 47 chromosomes (including an extra Chromosome 21) in others. In this situation, the range of the physical problems may vary, depending on the proportion of cells that carry the additional Chromosome 21.

The third genetic variation is called Translocation. This refers to the type of Down Syndrome that is caused by rearranged chromosome material. There are three 21 chromosomes, similar to Trisomy 21 but in this case, one of the 21st chromosomes has attached to another chromosome instead of being separate. Only 3-4% of babies born with Down Syndrome will have Translocation.

How is it manifested?

  • muscle hypotonia (low muscle tone)
  • flat facial profile (a somewhat depressed nasal bridge and a small nose)
  • oblique palpebral fissures (an upward slant to the eyes)
  • dysplastic ear (an abnormal shape of the ear)
  • a single deep crease across the center of the palm
  • hyperflexibility (an excessive ability to extend the joints)
  • epicanthal folds (small skin folds on the inner corner of the eyes)
  • excessive space between large and second toe
  • enlargement of tongue in relationship to size of mouth

Who is affected?

It is estimated that 1 in every 800-1,000 children born in Canada are diagnosed with Down Syndrome. It is the most frequently-occurring chromosomal abnormality.

How is it diagnosed or detected?

Down Syndrome is usually identified at birth or shortly thereafter. Initially, the diagnosis is based on physical characteristics that are commonly seen in babies with Down Syndrome. These include low muscle tone, a single crease across the palm of the hand, a slightly flattened facial profile, and an upward slant to the eyes. The diagnosis must be confirmed by a chromosome study (karyotype). A karyotype provides a visual display of the chromosomes grouped by their size, number, and shape. Chromosomes may be studied by examining blood or tissue cells.

There are also two types of prenatal tests used to detect Down Syndrome in a fetus: screening and diagnostic tests. The screening test estimates the risk that a fetus has Down Syndrome while a diagnostic test determines whether or not the fetus has a condition with an accuracy of 99%. However, diagnostic tests are more invasive since it is tested in utero. Contact your health care provider for more information.

Additional Resources:

Down Syndrome Association of Torontowww.dsat.ca
Down Syndrome Association of Toronto is a non-profit organization providing support and information to parents of children with Down Syndrome, students and teachers.

Canadian Down Syndrome Society (CDSS)www.cdss.ca
The CDSS is a resource linking parents and professionals through advocacy, education and providing information.

National Down Syndrome Congresswww.ndsccenter.org
It is the purpose of the National Down Syndrome Congress to create a national climate in which all people will recognize and embrace the value and dignity of people with Down Syndrome

Books and Literature:

Parentbookswww.parentbooks.ca
Parentbooks offers the most comprehensive selection of resources available anywhere – from planning a family, to everyday parenting issues, to special needs of all kinds. It also has a selection of resources for caregivers, counselors, therapists, educators, and clinicians.

Babies With Down Syndrome. A New Parents’ Guide
by Karen Stray-Gunderson Edited by Susan Skallerup

Classroom Language Skills in Children with Down Syndrome
By Libby Kumin

Discovery: Pathways to Better Speech for Children with Down Syndrome (DVD)
by Libby Kumin, Dr. Sally Shott, Professor Sue Buckley, and Dr. Seigfried Puschel

Down Syndrome: the First 18 Months (DVD)
By Will Schermerhorn

The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles
By Joan E. Guthrie Medlen

The Down’s Syndrome Handbook: A Practical Guide for Parents and Carers, Revised Edition
By Richard Newton

Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals
By Libby Kumin

Early Education for Children with Down Syndrome (Time to Begin)
By Valentine Dmitriev

The content contained in this document is for general information purposes. It is not the intention to diagnose or treat a child.

Developmental Delay

Fact Sheet

What is a Developmental Delay?

Children identified as “developmentally delayed” tend to develop at a slower rate than typical children at the same age level. This may be evident in a single area of development, or in multiple areas. Developmental Delay is a non-categorical label often used by educators and health practitioners who are reluctant to identify preschoolers with a categorical label. Even with typical development, there are age ranges for developmental milestones.

How is it manifested?

Common reasons why a child might be developmentally delayed are

  • premature birth
  • hospitalization immediately or soon after birth
  • insufficient brain cell development
  • damage to brain cells before or during birth (e.g., Cerebral Palsy)

It is not uncommon for a developmental delay to co-exist with another disorder, such as

  • behavioural and emotional disorders – inherent or related to physical, sexual or emotional abuse early in life
  • sensory impairments – vision or hearing problems
  • medical/health conditions – allergies or asthma
  • genetic disorders (e.g., Down Syndrome)
  • Attention Deficit Disorder (ADD)

Who is affected?

Developmental Delay is the most common type of disability among preschool children. It is more common in males than in females. As children move into the school system, many are diagnosed with a more specific disability.

How is it diagnosed or detected?

For typically developing children, a paediatrician should screen for delays in their development during regular examinations. This may consist of simple questions about what a child is able to do, or may include a formal screening test.

Common characteristics, which may be apparent in a child with a developmental delay, include

  • difficulty with change or transition periods
  • difficulty remaining on-task and with task-completion
  • difficulty understanding concepts that are abstract, as opposed to concrete
  • delays in expressive and/or receptive language development
  • problems organizing and/or remembering information
  • difficulty during unstructured activities

Additional Resources:

FAMILY ALLIANCE ONTARIOwww.family-alliance.com
Family Alliance Ontario is an alliance of citizens that offers knowledge, tools and networking opportunities to individuals with disabilities and their families. Their goal is to assist these individuals to realize a vision that includes having valued relationships, choice and control in their lives, and inclusion through meaningful contribution and participation in their communities.

ABILITY ONLINEhttp://abilityonline.org/
Ability Online is an extraordinary and absolutely free Internet community. Young people with disabilities and illnesses connect with all kinds of possibilities that address their needs as curious, growing citizens of the planet. They meet and chat with other people like them in a virtual world that transcends boundaries and barriers. They make friends, get tips from mentors, and freely participate in an atmosphere of collaboration, companionship and support.

Community Living Torontowww.cltoronto.ca
For over 50 years Community Living Toronto has been a source of support for thousands of individuals searching for accessible and meaningful ways to live a more normal life in the community. Community living spans a lifetime and Community Living Toronto strives to support people with intellectual disabilities at different stages of their lives. Community Living Toronto believes that everyone should be a part of the community, no matter how unique or special their needs.

Community Living Ontario (CLO)www.communitylivingontario.ca
The OACL supports local associations throughout Ontario by linking the associations and their members with resources and information, and by offering training and consultation in the areas of family support, education, employment, human rights, community participation, advocacy and self-planning. This site provides access to information regarding OACL’s initiatives on behalf of people with developmental disabilities, member agencies and related links. OACL is a member of the Canadian Association for Community Living, an active participant in the international movement in support of people with intellectual disabilities.

SURREY PLACE CENTREwww.surreyplace.on.ca
Surrey Place Centre is a leading community-based organization in Toronto providing complex diagnostics, counseling, service coordination, behavioural therapy and educational programs to people living with a developmental disability and their families.

PERSONS WITH DISABILITIES ONLINEhttp://www.pwd-online.gc.ca/
Uses information technology to provide integrated access to information, programs and services for persons with disabilities, their families, their caregivers, service providers and all Canadians.

Guide to Government of Canada Services for People with Disabilities Services for People With Disabilities Guide
c/o Canada Enquiry Centre
Ottawa, Ontario K1A 0J9 CANADA
Phone: 1-800-622-6232

This guide about Government of Canada services and programs for people with disabilities provides information on everything from employment, accessibility and education, to health, income support and tax benefits. A section tells you how to contact your provincial or territorial government to find out about its programs and services for people with disabilities.

The content contained in this document is for general information purposes. It is not the intention to diagnose or treat a child.

Dandy-Walker Syndrome

Fact Sheet

What is Dandy Walker Syndrome?

Dandy-Walker Syndrome (DWS) is a congenital brain malformation involving the cerebellum (an area at the back of the brain that controls movement) and the fluid-filled spaces around it. The key features of this syndrome are an enlargement of the fourth ventricle (a small channel that allows fluid to flow freely between the upper and lower areas of the brain and spinal cord), a partial or complete absence of the cerebellar vermis (the area between the two cerebellar hemispheres), and cyst formation near the internal base of the skull. An increase in the size of the fluid spaces surrounding the brain as well as an increase in pressure may also be present.

Dandy-Walker Syndrome is frequently associated with disorders of other areas of the central nervous system including absence of the corpus callosum (the connecting area between the two cerebral hemispheres), and malformations of the heart, face, limbs, fingers and toes.

How is it manifested?

Symptoms of Dandy-Walker Syndrome often occur in infancy but can also occur in older children. Symptoms may include:

  • Impaired development of normal speech and language
  • Slow motor development
  • Irritability
  • Vomiting
  • Convulsions
  • Unsteadiness
  • Lack of muscle coordination
  • Jerky eye movements
  • Increased head circumference
  • Bulging of the back of the skull
  • Problems with the nerves that control the eyes, face, and neck
  • Abnormal breathing
  • head circumference or progressive enlargement of the skull

Who is affected?

  • The incidence is approximately 1 in 2,500 newborns.
  • DWS occurs more frequently in females than males

Diagnosis:

The majority of individuals with DWS are diagnosed in their first year of life as a result of the commonly associated hydrocephalus. However, a definitive diagnosis can be made by ultrasound, CT-scan, or MRI (allows a detailed evaluation of Dandy-Walker malformation lesions and complications. MRI evaluation can then be used antenatally to confirm the diagnosis and gain more detailed information).

Treatment:

Talk with your child’s doctor about the best treatment plan. Treatment will depend on the problems caused by the syndrome. This may involve placing a special tube called a shunt inside the skull to drain excess fluid to reduce pressure and help control swelling.

Additional Resources:

Spina Bifida and Hydrocephalus of Ontariohttps://sbhac.ca/
Spina Bifida and Hydrocephalus (SB&H) has grown to provide a comprehensive and essential range of services for parents, families, youth and adults with SB&H. Their programs are rooted in the principles of self-help and personal support. They also serve the broader community which includes parents who receive a pre-natal diagnosis of SB&H, extended family members, and all women of child-bearing age. The benefits of folic acid in the prevention of neural tube defects are stressed and a wide spectrum of professionals in the social services, medical, health and education fields are identified. SB&H is the only organization in Ontario addressing the particular needs of their members.

Dandy Walker Alliancewww.dandy-walker.org
This website is an effort to pull together a compilation of reliable and medically-accurate resources that have been gathered over the years.

The Official Parent’s Sourcebook on Dandy-Walker Syndrome: Updated Directory for the Internet Age – Authors: Icon Health Publications
This sourcebook is organized into three parts. Part I explores basic techniques to researching Dandy-Walker Syndrome (e.g. finding guidelines on diagnosis, treatments, and prognosis), followed by a number of topics, including information on how to get in touch with organizations, associations, or other patient networks dedicated to DWS.

The content contained in this document is for general information purposes. It is not intended to diagnose or treat a child.

Cystic Fibrosis

Fact Sheet

What is Cystic Fibrosis?

Cystic Fibrosis (CF) is the most common, fatal genetic disease affecting young Canadians. CF affects mainly the lungs and the digestive system. In the lungs, CF causes severe breathing problems. A build-up of thick mucus makes it difficult to clear bacteria and leads to cycles of infection and inflammation which damage the delicate lung tissues.

In the digestive tract, CF makes it extremely difficult to digest and absorb adequate nutrients from food. Thick mucus also blocks the ducts of the pancreas, preventing enzymes from reaching the intestines to digest food. Therefore, persons with CF must consume a large number of artificial enzymes (on average 20 pills a day) with every meal and snack, to help them absorb adequate nutrition from their food. They must also follow a demanding daily routine of physical therapy to keep the lungs free of congestion and infection.

How is it manifested?

  • difficulty breathing
  • constant cough which expels thick mucus
  • excessive appetite, with weight loss
  • bowel disturbances
  • skin which tastes salty
  • repeated or prolonged bouts of pneumonia
  • failure to thrive

Who is affected?

It is estimated that 1 in every 3,600 children born in Canada has Cystic Fibrosis. CF is a genetic disease that occurs when a child inherits an abnormal gene from each parent. When both parents are carriers, there is a 25 percent chance that their child will be born with Cystic Fibrosis. There is also a 50 percent chance that the child will be a carrier and a 25 percent chance that the child will neither be a carrier nor have cystic fibrosis.

How is it diagnosed or detected?

If a physician suspects CF, he will probably suggest a “sweat test”. This simple and painless test measures the amount of salt in the sweat. A high salt level, along with other symptoms, points to the presence of Cystic Fibrosis.

Increasingly, genetic tests are being used in the diagnosis of the disease. Genetic tests are also used to diagnose CF prenatally.

Approximately 60% of patients are diagnosed in the first year of life, and 90% by 10 years of age.

Additional Resources:

Cystic Fibrosis Canada (Formerly known as the CANADIAN CYSTIC FIBROSIS FOUNDATION) (CCFF)www.cysticfibrosis.ca
Cystic Fibrosis Canada is a Canada-wide health charity with more than 50 volunteer chapters. The Foundation’s primary objective is to fund Cystic Fibrosis research and care. The Canadian Cystic Fibrosis Foundation is one of the world’s largest non-governmental granting agencies in the field of Cystic Fibrosis research. Videos are available from Cystic Fibrosis Canada.

CYSTIC FIBROSIS PARENTShttp://groups.yahoo.com/group/cfparents/
Cystic Fibrosis Parents is a Yahoo discussion group that focuses on issues specific to raising children who have been diagnosed with Cystic Fibrosis. It is a place for parents of children with CF to visit for support and information.

CANADIAN ORGANIZATION FOR RARE DISORDERS (CORD)www.raredisorders.ca
CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for a health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.

CORD will link other families and individuals with the same rare disorder(s) through a positive and productive networking system. Together they can exchange ideas on how to plan their daily lives, what they can expect to encounter, and offer emotional support so that they can lead productive lives.

The content contained in this document is for general information purposes. It is not intended to diagnose or treat a child.

Cri du Chat Syndrome

Fact Sheet

What is Cri du Chat Syndrome?

Cri du Chat Syndrome arises from the absence of a particular portion of Chromosome 5. The absence of genetic material is called a deletion. Children born with this deletion have a characteristic mewing cry that is thought to be caused by abnormal development of the larynx (the organ containing the vocal chords). For this reason, the disorder is called Cri du Chat (or Cat’s Cry) Syndrome. In reference to the deletion and the area where it occurs, the disorder is also called 5p- (5 p minus) Syndrome. Children with this syndrome have physical abnormalities, language and motor skill difficulties, and varying degrees of intellectual disabilities. Cri du Chat Syndrome is a very rare disorder.

How is it manifested?

  • high-pitched cry (identified as a cat-like cry)
  • low birth weight
  • poor muscle tone (hypotonia)
  • microcephaly (small head size)
  • micrognathis (small jaw)
  • hypertelorism (wide spaced eyes)
  • round face
  • epicanthal folds (small skin folds on the inner corners of the eyes)
  • low set ears
  • feeding difficulties
  • delay in walking
  • hyperactivity
  • scoliosis
  • language difficulties
  • intellectual disabilities
  • organ defects

Who is affected?

The estimated prevalence is about 1 in 20, 000-50,000 newborns. Most cases of Cri du Chat Syndrome are not inherited. The deletion mostly occurs at random during the formation of reproductive cells (eggs or sperm) or in early fetal development. However, about 10 per cent of people affected inherit a chromosome abnormality/rearrangement called a balanced translocation from an unaffected parent. Balanced translocations usually do not cause any health problems. When a child inherits the unbalanced translocation, however, there is a possibility of a chromosal rearrangement with extra or missing genetic material. Individuals with Cri du Chat Syndrome are missing genetic material from the short arm of Chromosome 5.

How is it diagnosed or detected?

During infancy, a diagnosis of Cri du Chat Syndrome is strongly suspected if the characteristic cat-like cry is heard. If a child has this unusual cry, or other features seen in Cri du Chat Syndrome, chromosome testing should be performed. Chromosome analysis provides a definitive diagnosis of Cri du Chat Syndrome and can be performed from a blood test. Chromosome analysis, also called “karyotyping,” involves staining the chromosomes and examining them under a microscope. In some cases the deletion of material from Chromosome 5 can be easily seen. In other cases, further testing must be performed. Fluorescence In-Situ Hybridization (FISH) is a special technique that detects very small deletions. The majority of the deletions that cause Cri du Chat Syndrome can be identified using the FISH technique.

Additional Resources:

5P- SOCIETYwww.fivepminus.org
The 5p- Society (five p minus), a not-for-profit corporation, is the parent support group for families having a child with 5p- Syndrome, also known as Cat Cry Syndrome or Cri du Chat Syndrome. Their mission is to encourage and facilitate communication among families having a child with 5p- Syndrome and to spread awareness and education of the syndrome to these families and their service providers.

ALLIANCE OF GENETIC SUPPORT GROUPSwww.geneticalliance.org
Genetic Alliance is an international coalition comprised of more than 600 advocacy, research and healthcare organizations that represent millions of individuals with genetic conditions and their interests. As a broad-based coalition of key stakeholders, they leverage the voices of millions of individuals living with genetic conditions.

CANADIAN ORGANIZATION FOR RARE DISORDERS (CORD)www.raredisorders.ca
CORD is Canada’s national network for organizations representing all those with rare disorders. CORD provides a strong common voice to advocate for a health policy and a healthcare system that works for those with rare disorders. CORD works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare disorders in Canada.

CORD will link other families and individuals with the same rare disorder(s) through a positive and productive networking system. Together they can exchange ideas on how to plan their daily lives, what they can expect to encounter, and offer emotional support so that they can lead productive lives.

The content contained in this document is for general information purposes. It is not intended to diagnose or treat a child.

Creating A Child Information Binder

The “Child Information Binder” is a quick and easy reference tool for your family. It is a simple way to record your child’s strengths and needs, his likes, dislikes, and interests. Teachers or other professionals working with your child can use this information to support his on-going development.

You can print each page and insert them in a binder according to each section we’ve identified below. Complete each section and share it with your child’s teacher once he starts child care, or school.

Basic Information

Include basic information about your child like his name, date of birth and who to contact in case of an emergency.

Medical

Add information on any medical conditions experienced by your child. If your child takes certain medications, or uses adaptive equipment on a regular basis you can include guidelines on how to use them. Be sure to include any allergies your child may have.

Vision and Hearing

Complete this section if your child has a known vision loss or hearing difficulty. Include information on how accommodations can be made for your child.

Communication

Offer information that helps your child understand and be understood by others. If your child uses a communication binder with picture symbols, you can add a copy to this section.

Sensory

Inform others about your child’s sensory likes and dislikes. For example, your child may have a strong dislike of certain textures or fabrics.

Behaviour

Describe and explain how to best deal with behaviours your child may demonstrate.

Daily Routines

Provide details on daily routines like using the washroom, mealtimes, dressing, and sleeping. If your child uses picture sequences as a guide during these routines they can be included.

Favourite Activities

Ask your child to help you complete this section. It’s a great way to let him know how proud you are of his accomplishments. This section also provides your child’s teacher or caregiver with valuable information about favourite toys and activities.

Service Providers

Record contact information for each professional who works with your child. There is space to describe what they do for your child and your family.

Sharing the Binder with Professionals

The binder will have the information you need for team meetings with your child’s school, care providers, or doctor. Keeping the information organized will make it easier for you to focus and fully participate in the meeting.

Download the Child Information Binder template

Childhood Disintegrative Disorder

Fact Sheet

What is Childhood Disintegrative Disorder?

Childhood Disintegrative Disorder or CDD is a condition occurring in 3 to 4 year olds which is characterized by deterioration over several months of intellectual, social, and language functioning. CDD is also known as Disintegrative Psychosis or Heller’s Syndrome. This rather rare condition was described many years before autism but has only recently been “officially” recognized. Children with CDD develop a condition that resembles autism, but only after a relatively prolonged period of normal development. This condition differs from autism in the pattern of onset, course, and outcome. Although relatively rare, the condition probably has frequently been incorrectly diagnosed.

The cause of Childhood Disintegrative Disorder is unknown, but as with autism, it has been linked to neurological problems. The child with this disorder loses communication skills, has regression in non-verbal behaviours, and significant loss of previously-acquired skills. The symptoms of CDD resemble those of autism.

How is it manifested?

  • loss of social skills
  • loss of bowel and bladder control
  • loss of expressive or receptive language
  • loss of motor skills
  • lack of play
  • failure to develop peer relations
  • impairment in nonverbal behaviours
  • delay in, or lack, of spoken language
  • inability to start or sustain a conversation

Who is affected?

The cause of CDD is unknown. It does seem to have some association with seizures and abnormal brain activity as seen on an EEG. Children diagnosed with CDD often have a history of an illness just prior to the appearance of the regressive behaviours. Boys outnumber girls in occurrence. It is considered a rare disease.

How is it diagnosed or detected?

The child tends to have normal development through age 3 to 5 years and then over a few months undergoes a gradual loss of previously established abilities (e.g., language, motor, or social skills). Generally the diagnosis is made with a loss of functioning in at least two areas as described above.

Additional resources:

Geneva Centre for Autismwww.autism.net
Geneva Centre for Autism is a multi-service agency providing direct clinical services to families living in the Greater Toronto Area (including Peel, Halton, Simcoe and York Regions). They also provide information, resources and consultation and training services to individuals with Autism Spectrum Disorders (ASD), parents, service providers, educators and other professionals across Ontario, Canada and internationally.

References:

  • Diagnostic and Statistical Manual of Mental Disorders (4th ed.). American Psychiatric Association
  • Diagnosing Autism and Other Pervasive Development Disorders [excerpt from Autism: Basic information (3rd ed., pp. 6-7)]. By T. Boyle

The content contained in this document is for general information purposes. It is not intended to diagnose or treat a child.

Cerebral Palsy

Fact Sheet

What is Cerebral Palsy?

Cerebral Palsy is an umbrella term used to describe a group of chronic disorders impairing control of movement that appear in the first few years of life and generally do not worsen over time. The disorders are caused by faulty development of, or damage to, motor areas in the brain that disrupts an individual’s ability to control movement and posture.

Symptoms of Cerebral Palsy include difficulty with fine motor tasks, such as writing or using scissors, difficulty maintaining balance or walking, and/or involuntary movements. The symptoms differ from person to person and may change over time. Some people with Cerebral Palsy are also affected by other medical disorders, including seizures or developmental concerns, but Cerebral Palsy does not always cause a developmental handicap. Early signs of Cerebral Palsy usually appear before 3 years of age. Infants with Cerebral Palsy are frequently slow to reach developmental milestones such as learning to roll over, sit, crawl, smile, and walk. Cerebral Palsy may be congenital, or acquired after birth. Several of the causes of Cerebral Palsy that have been identified through research which are preventable or treatable include head injuries, jaundice, Rh incompatibility, and rubella (German measles).

How is it manifested?

  1. muscle tightness or spasm
  2. involuntary movement
  3. disturbance in gait and mobility
  4. abnormal sensation and perception
  5. impairment of sight, hearing, or speech
  6. seizures

Classification by Number of Limbs Involved

  • Quadriplegia – all four limbs are involved.
  • Diplegia – all four limbs are involved. Both legs are more severely affected than the arms.
  • Hemiplegia – one side of the body is affected. The arm is usually more involved than the leg.
  • Triplegia – three limbs are involved, usually both arms and a leg.
  • Monoplegia – only one limb is affected, usually an arm.

Classification by Movement Disorder

  • Spastic Cerebral Palsy – the most common form, affecting 70-80% of individuals with Cerebral Palsy. This type of Cerebral Palsy keeps the muscles in a constant state of increased involuntary reflex.
  • Athetoid Cerebral Palsy – characterized by a slow and uncontrolled movement and affects 10-20% of individuals with Cerebral Palsy.
  • Ataxic Cerebral Palsy – is very rare and affects a person’s sense of balance and depth perception. Individuals with this type of Cerebral Palsy often have difficulty with coordination, walk unsteadily with a wide-based gait, placing their feet unusually far apart, and experience difficulty when attempting quick or precise movements, such as writing or buttoning a shirt. Ataxic Cerebral Palsy is diagnosed in approximately 5-10% of individuals with Cerebral Palsy.
  • Mixed Forms – it is common for an individual to have symptoms of more than one of the previous three forms. The most common mixed form includes Spastic and Athetoid movements, but other combinations are also possible.

Who is affected?

Cerebral Palsy is not usually diagnosed until a child is about 2 years of age. About 2 to 3 children in 1,000 over the age of 3 years have Cerebral Palsy.

How is it diagnosed or detected?

Cerebral Palsy is diagnosed mainly by evaluating how a baby or young child moves. A physician will evaluate the child’s muscle tone, which can make them appear floppy. Some babies have increased muscle tone, which makes them appear stiff, or variable muscle tone (increased at times and low at other times). The physician will check the baby’s reflexes and look to see if the baby has developed a preference for using his right or left hand. While most babies do not develop a hand preference (become right- or left-handed) until at least 12 months of age, some babies with Cerebral Palsy do so before six months of age. Another important sign of Cerebral Palsy is the persistence of certain reflexes, called primitive reflexes, that are normal in younger infants, but generally disappear by 6 to 12 months of age. The physician also will take a careful medical history, and attempt to rule out any other disorders that could be causing the symptoms.

CAT scans (Computerized Axial Tomography) and MRI (Magnetic Resonance Imaging) can help identify lesions in the brain. This technology may enable some children who are considered at risk of having Cerebral Palsy to be diagnosed very early. However, for the majority of people with Cerebral Palsy it will be months, and sometimes years, before a diagnosis is confirmed.

Additional Resources:

ONTARIO FEDERATION FOR CEREBRAL PALSY

www.ofcp.ca

The Ontario Federation for Cerebral Palsy is a non-profit, charitable organization with a mandate to address the changing needs of people in Ontario with Cerebral Palsy.

The Participating Families Program supports and responds to requests from families and parents with children with Cerebral Palsy by offering information and resources that will assist in caring for their child. They also respond to inquiries from professionals, organizations and students regarding Cerebral Palsy.

Cerebral Palsy Guide

https://www.cerebralpalsyguide.com/

Cerebral Palsy Guide is a national support organization based in the United States, dedicated to educating individuals and families about cerebral palsy. The organization strives to provide answers and guidance to ensure that families receive the assistance that they need to help improve their overall quality of life.

The content contained in this document is for general information purposes. It is not intended to diagnose or treat a child.

Bedtime Routines

“I don’t want to go to bed! I’m thirsty! I need to go to the bathroom! I’m scared of the dark!” If you’ve heard your child repeat these phrases night after night, chances are you may be struggling with bedtime. Bedtime can be a nightly challenge for parents when your child resists going to sleep, or when she awakens in the middle of the night looking for mom and dad.

Understanding why children have sleep time difficulties

Sleep problems are very common in children of all ages. A child may experience poor sleep during a brief period in their life, like holidays, a stressful event, or illness. For some children, not being able to settle down to sleep may occur only occasionally and for others it may be more frequent.

Children who are well rested are generally happy, healthy and feel at their best. They’re able to learn, imagine, create, and socialize with ease after a good night of sleep. Research indicates that children (and adults) who are sleep deprived have more trouble controlling their emotions. In other words, the part of the brain that helps us to control our actions and our response to feelings is greatly affected by lack of sleep.

Children who do not get enough sleep may have difficulty waking up in the morning, may be irritable (ill-tempered), easily frustrated, or may fall asleep during play time or dinner. This may get in the way of their learning, their social interactions and their active involvement at school, or in their child care program.

By understanding the reasons children have bed time difficulties, you can help your child deal with her sleep issues so that she can become a happy, independent sleeper and bedtime will become a pleasant end to the day for the whole family.

There are a number of factors that can interfere with children falling asleep and staying asleep throughout the night. Here are some of the more common ones that you may be experiencing with your child:

  1. Separation Anxiety: For some children, bedtime means separation from their parents and the activities of the day. They are moving away from excitement and stimulation into darkness and being alone. Your child may feel anxious if you are not there, or if you try to leave her room and so she is unable to relax and sleep.
  2. Power Struggles: Power struggles are common from 18 months of age and on, as children begin to express their independence. Some children try to show this independence by resisting going to bed.
  3. Night Time Fears: Fears of the dark and imaginary monsters are especially strong for children between the ages of two to six years old. Although fears are common in preschoolers, intense fright, especially when accompanied by panic, is unusual and may be a sign that help from a professional is needed.
  4. Nightmares: Nightmares are quite common and most children experience them at some time or another. The child will awaken from the frightening dream and remember what happened quite clearly. Sometimes she can be comforted and settled back to sleep, but other times she may need extra reassurance to do so.
  5. Other common causes of sleep problems include:
    • Not being able to relax without some form of help.
    • Not being able to recognize that they are tired.
    • Wanting more time with a parent (especially if the parent works outside the home).
    • Physical environment. For example, the temperature may be too hot, or too cold, lighting may be too bright, or too dark, the covers may be too light, or too heavy, or sounds in the room or home may be too noisy.
    • Stress or worries about child care, school performance, friends, family conflicts, or other problems in their lives.
    • Inappropriate napping. A child may have very long, or too many naps during the day.
    • The presence of parents, brothers, or sisters in the same room who may be providing distractions such as coughing, snoring, talking, etc.
    • Parents who are over-anxious themselves and may be constantly checking in on their child.
    • Children with special needs. Research indicates that half of all children with special needs experience some kind of sleep difficulty.

Setting the Stage for a Good Night’s Sleep

There are many steps you can take to deal with your child’s sleep problems. We’ve already discussed the most important first step which is recognizing the possible cause of her sleep difficulties. The next step is looking at what you can do before your child’s bedtime to help ease her transition into sleep and help the routine run more smoothly.

Decide on a bed time

Decide on a specific time for your child to go to bed and try your best to stick to it everyday. There may be days when you can’t and this is okay as long as you get back on track with a daily, consistent schedule. Getting your child to bed at the same time every night provides her with a predictable routine. Keep in mind that you can’t force your child to fall asleep, but you can enforce the rule that she must be in her bed at a set time.

Also, it’s important to have consistent wake up times as well. If you don’t, this may make it more difficult for your child to go to sleep at night. Establishing a regular wakeup time will again provide your child with the structure and predictability she needs in her daily routine.

Establish bedtime rules

Children thrive on structure and order. They need rules in order to understand what is expected of them. This is especially important at bedtime. Establish clear, simple rules and review them with your child regularly. If you stick to these rules on a daily, consistent basis, children will accept the structure and will be more likely to follow the rules. Examples of bedtime rules might be: “No bouncing on the bed”, or “No drinking milk in bed”. You can use real photos or picture symbols to provide your child with a visual reminder to reinforce the rules.

Set up the room

Make sure the curtains or blinds in your child’s room do not let in too much light – this will help prevent your child from waking up too early in the morning. Keep lights dim in the evening as bedtime approaches. Also, check the bedroom temperature. It should be neither too hot nor too cold. Reduce any loud, or distractable noises around your child’s room. Consider soft music, or the soothing sounds of an air filter or fan, bubbling fish tank, or recording of water falls to block out background noise that might disturb your child.

Provide choices

Whenever possible, allow your child to make choices within her routine. For example, she might choose which pyjamas to wear, which stuffed animal to bring to bed, or what music to play. This gives your child a sense of control over the routine.

Allow a comfort item

Allow your child to take a favourite teddy bear, doll, toy, or special blanket to bed each night, so she has something with which to cuddle. This can also help comfort your child and give her a sense of security, or being safe.

Avoid sugar and caffeine

Try to limit the amount of caffeine and sugar your child eats or drinks before bedtime. Beverages such as colas and chocolate contain sugar and caffeine and may be a factor in your child remaining awake.

Consider effects of medication

Find out if medications are contributing to the problem. Talk to your doctor about any medications your child is taking. Some of them have a stimulatory effect and make it harder for children to settle down to sleep.

Cut out afternoon naps

Cut out afternoon naps if they are not needed. If your child does not seem tired at night and takes a nap during the day, either eliminate the nap time or reduce it to only 30 to 60 minutes.

Encourage exercise

Make sure your child gets enough physical activity during the day. Exercise, as well as fresh air, should be part of your child’s everyday routine. It’s as important as any other part of your child’s day. Ideally, this active time should not be too close to bedtime, as this may excite your child and make it difficult for her to fall asleep.

Schedule play times

Try to schedule daily play times with your child fairly close to the time she goes to sleep. This may help to prevent her fighting you at bedtime just to get your attention. Choose a quiet, relaxing and interactive activity that you will both enjoy. If she prefers to play alone, or you have something to do yourself, offer her an activity such as blocks, books, or puzzles.

Encourage relaxation

Help your child release her physical tension by stretching and relaxing her body in a variety of fun ways. Try these relaxation strategies with your child: breathing in and filling up like a balloon, slowly raising your arms and legs one at a time as if they are very heavy and then letting them drop back quickly, or wrinkling and then relaxing your face. Providing your child with a gentle massage will also help her to relax.

Establishing a Consistent Bedtime Routine

Sometimes parents don’t have much energy left at the end of a long day. Creating a consistent bedtime routine can help make this time successful and relaxing for both you and your child. Keep in mind that a bedtime routine might take 30 – 60 minutes. Here’s an example of a routine Jenny and her dad follow each night:

  • Dad gives Jenny a 5-minute warning before the actual bedtime routine starts, so Jenny can finish playing and tidy up her toys.
  • Dad gets the bath ready for Jenny. She gets to play in the bathtub for about 10 minutes.
  • Jenny and her dad have a healthy snack such as yogurt or warm milk and sugar-free cookies. Dad remembers to avoid offering any caffeine or sugary foods and beverages.
  • Jenny brushes her teeth.
  • Jenny uses the toilet.
  • Jenny puts on her pyjamas and gets to choose a stuffed toy to cuddle.
  • Dad sits with Jenny in bed and reads her a book.
  • When the story is finished, Dad says goodnight to Jenny and turns off the light.

It often helps to use a picture board to show each step of the routine so your child knows exactly what to do next. Here are the pictures that Jenny’s dad uses every night:




A Word of Caution

If your child remains highly upset despite your repeated efforts to deal with her sleep difficulties, consult with your paediatrician, or an early childhood professional. Consider getting help for your child if:

  1. She has sleep problems after you have tried an approach consistently for one month or longer.
  2. She is very sensitive and becomes upset over whatever you do to try to get her to sleep.
  3. She appears traumatized by the whole experience.
  4. She shows signs of a medical or physical condition that you think might be interfering with her sleep.

You may want to try keeping a Sleep Diary. A Sleep Diary allows you to record information from every bedtime that will enable you to see any unusual patterns of sleep. Take a look at the For More Information box for details.

Also, you should consider getting help for yourself if you have difficulty following through with a “sleep plan” once you have created one and/or you are negatively affected by your child’s sleep habits (e.g., exhaustion, anger, resentment towards your child, spouse, or others). You are the expert when it comes to your family and child. If you have a concern, trust your instincts and find someone trained to help you.