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What is Early Intervention?
Much has been written about the importance of a child’s first five years of life.
Understanding Diagnosis
Maybe your child has just been diagnosed with a medical condition and your mind is spinning with questions. Or, perhaps you have concerns and want to learn about a specific condition to discuss with your child’s doctor. Here’s a starting point to find easy-to-understand descriptions of numerous conditions.
Aicardi Syndrome is a rare genetic disorder characterized by the partial or complete absence of the structure that links the two hemispheres of the brain, the corpus callosum. The disorder affects only girls. Onset of Aicardi Syndrome generally begins between the ages of 3 and 5 months with infantile spasms, a type of childhood seizure.
What are the symptoms of Aicardi Syndrome?
Symptoms include seizures, mental retardation, and lesions on the retina of the eye that are specific to the disorder. Aicardi Syndrome may be associated with other brain defects such as a smaller than average brain, and cavities or gaps in the brain filled with cerebrospinal fluid.
Is there any treatment?
There is no cure for Aicardi Syndrome nor is there a standard course of treatment. Treatment generally involves medical management of seizures and programs to help parents and the child cope with developmental delays.
What is the prognosis?
The prognosis for girls with Aicardi Syndrome varies according to the severity of their symptoms.
Where can I get more information?
Aicardi Syndrome Foundation
Address
P.O. Box 3202
St. Charles, IL 60174
Phone
800-374-8518
Internet
http://www.aicardisyndrome.orgThe Arc of the United States
Address
1010 Wayne Avenue, Suite 650
Silver Spring, MD 20910
Phone
301-565-3842
Fax
301-565-3843 or -5342
Info@thearc.org
Internet
http://www.thearc.orgNational Organization for Rare Disorders (NORD)
Address
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
Phone
203-744-0100
Voice Mail
800-999-NORD (6673)
Fax
203-798-2291
orphan@rarediseases.org
Internet
http://www.rarediseases.orgNational Institute of Mental Health (NIMH)
National Institutes of Health, DHHSAddress
6001 Executive Blvd.
Rm. 8184, MSC 9663
Bethesda, MD 20892-9663
Phone
301-443-4513/866-615-NIMH (-6464)
301-443-8431 (TTY)
Fax
301-443-4279
nimhinfo@nih.gov
Internet
http://www.nimh.nih.govAicardi Syndrome Newsletter, Inc.
Address
1510 Polo Fields Court
Louisville, KY 40245
Phone
502-244-9152
aicnews@aol.com
Internet
http://www.aicardisyndrome.orgMarch of Dimes Foundation
Address
1275 Mamaroneck Avenue
White Plains, NY 10605
Phone
914-428-7100/888-MODIMES (663-4637)
Fax
914-428-8203
askus@marchofdimes.com
Internet
http://www.marchofdimes.comNational Eye Institute (NEI)
National Institutes of Health, DHHSAddress
31 Center Drive
Rm. 6A32 MSC 2510
Bethesda, MD 20892-2510
Phone
301-496-5248
2020@nei.nih.gov
Internet
http://www.nei.nih.gov
Angelman Syndrome is a chromosomal disease that causes neurological problems.
What are the symptoms of Angelman Syndrome?
Here is a list of some of the common symptoms:
- Flat heads
- Feeding problems (infants between 1 and 2 months old)
- Speech impairment
- Hyperactivity
- Epilepsy
- Protruding tongues
- Unexplained bouts of laughter
How is this diagnosed?
This syndrome is usually diagnosed between the ages of three and seven when the characteristics, behaviors and features become most pronounced.
What is the treatment?
Angelman Syndrome cannot be cured but it can be treated to control the symptoms. Your physician will discuss with you the right treatment for your child. Some of the common treatments include:
- Educational and behavioral interventions (to help with communication, schooling, sleep disturbances, and general behavior)
- Physical and occupational therapies
- Speech and language interventions
- Behavior modification
Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a child has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.
What are the symptoms of apraxia?
Children with developmental apraxia of speech generally can understand language much better than they are able to use language to express themselves. Some children with the disorder may also have other problems. These can include other speech problems, such as dysarthria; language problems such as poor vocabulary, incorrect grammar, and difficulty in clearly organizing spoken information; problems with reading, writing, spelling, or math; coordination or “motor-skill” problems; and chewing and swallowing difficulties.
The severity of both acquired and developmental apraxia of speech varies from person to person. Apraxia can be so mild that a person has trouble with very few speech sounds or only has occasional problems pronouncing words with many syllables. In the most severe cases, a person may not be able to communicate effectively with speech, and may need the help of alternative or additional communication methods.
How is Aprexia diagnosed?
Your child will probably be seen by a speech-language pathologist for the diagnosis and treatment. There is no single factor or test that can be used to diagnose apraxia. In addition, speech-language experts do not agree about which specific symptoms are part of developmental apraxia. The person making the diagnosis generally looks for the presence of some, or many, of a group of symptoms, including those described above. Ruling out other contributing factors, such as muscle weakness or language-comprehension problems, can also help with the diagnosis.
To diagnose developmental apraxia of speech, parents and professionals may need to observe a child’s speech over a period of time. In formal testing for both acquired and developmental apraxia, the speech-language pathologist may ask the person to perform speech tasks such as repeating a particular word several times or repeating a list of words of increasing length (for example, love, loving, lovingly).
What is the treatment?
If your child is diagnosed with developmental apraxia of speech, you should know that he or she will not outgrow the problem on their own. Speech-language therapy is often helpful for children.
Speech-language pathologists use different approaches to treat apraxia of speech, and no single approach has been proven to be the most effective. Therapy is tailored to the individual and is designed to treat other speech or language problems that may occur together with apraxia. Each person responds differently to therapy, and some people will make more progress than others. People with apraxia of speech usually need frequent and intensive one-on-one therapy. Support and encouragement from family members and friends are also important.
Where can I get more information?
Childhood Apraxia of Speech Association of North America (CASANA)
Address
1151 Freeport Road, #243
Pittsburgh, PA 15238
helpdesk@apraxia-kids.org
Internet
www.apraxia-kids.orgBirth Defect Research for Children, Inc. (BDRC)
Address
930 Woodcock Road, Suite 225
Orlando, FL 32803
staff@birthdefects.org
Internet
www.birthdefects.orgCHERAB Foundation
Address
P.O. Box 8524
Port St. Lucie, FL 34952
help@cherab.org
Internet
www.cherab.org
www.speechville.com
Asperger’s Syndrome is a neurological disorder that is marked by difficulties in communication and social interaction. Children with this condition find it difficult to identify and express their feelings, similar to those diagnosed with autism.
What are the symptoms of Asperger’s Syndrome?
- Find it challenging to connect with others
- Average to high I.Q.
- Doesn’t hold eye contact and has trouble reading facial and body language
- Flap their hands
- Speak without much emotion
- Need to follow schedules rigidly
- Tendency to rock, fidget, pace, repetitive hand motions, twitch
- Take metaphors literally
- Difficulty understanding jokes
- Needs detailed information to complete tasks
- Clumsiness, not paying attention
- Easily lost in details
- Generalize in a different way
- Socially awkward
- Have an intense interest in one specific subject
- Exhibit sensitivities to sounds, clothing, or food
- Cannot make small talk
How is Asperger’s Syndrome diagnosed?
This condition is similar to autism. The main difference is the degree of impairment and language development. Compared to classic autism, children with Asperger’s Syndrome usually don’t show any signs of major cognitive difficulties – their I.Q. is in the normal or even superior range – and they have few, if any, delays in speaking. They also usually hit most of their milestones within reasonable time periods. Because of this, some describe children with this condition as “high-functioning” or as having a “mild” form of autism. They may see just like other children, but not quite. They appear to be socially awkward in a manner that’s not easily understood.
It’s probably easy to understand why your doctor may miss seeing this in your child, or perhaps even misdiagnose it completely.
What is the treatment?
The treatment team for your child will require involvement from doctors, psychologists, teachers, therapists and you. Depending on your child, the exact treatment may consist of a combination of the following:
- A number of behavior regimens – Applied Behavior Analysis (ABA) floortime, sensory integration therapy and others
- Social skills training might be used to teach your child the social aspects that come naturally to other kids – this often includes reviewing scenarios so your child knows how to react before they happen
- Alternative therapies, such as hippotherapy, where your child would ride a horse to improve coordination, or martial arts therapy to help his or her mobility
- Medications, which may include anti-depressants
Where can I get more information?
Asperger Syndrome Coalition of the United States, Inc. (ASC-U.S.)
Address
2020 Pennsylvania Ave.
N.W. Box 771
Washington, D.C. 20006Phone
1-866-427-7747
Internet
www.asperger.orgAutism Society of America
Address
7910 Woodmont Avenue
Suite 300
Bethesda, MD 20814Phone
1-800-328-8476
Internet
www.autism-society.orgAutism Research Institute (ARI)
Address
4182 Adams Avenue
San Diego, CA 92116Phone
619-563-6840
Internet
www.autismresearchinstitute.comMAAP Services for Autism and PDD
Address
P.O. Box 524
Crown Point, IN 46308Phone
219-622-1311
Internet
www.maapservices.orgAutism Network International (ANI)
Address
P.O. Box 35448
Syracuse, NY 13235-5448
jisincla@mailbox.syr.edu
Internet
ani.autistics.orgAdditional Resources
Reactive Attachment Disorder (RAD) is a serious psychological condition associated with children who have experienced persistent abuse, abandonment, neglect, or separation from parents at a very young age. A child with RAD is so neurologically disrupted that they cannot attach to a primary caregiver or go through the normal developmental processes. These children cannot establish positive relationships with other people. RAD may result in learning problems, social problems, mental problems and failed personal and interpersonal relationships.
What are the symptoms of RAD?
- A low self-esteem, needy, clingy, or pseudo-independent behavior
- An inability to deal with stress and adversity, depression, apathy
- Susceptibility to chronic illness
- Obsession with food – hordes, gorges, refuses to eat, eats strange things, hides food
- Lacks control
- Inability to develop and maintain friendships
- Alienation from parents, caregivers, and other authority figures
- Aggression and violence
- Difficulty with genuine trust, intimacy, and affection
- Lack of empathy, compassion, and remorse
- Negative, hopeless, pessimistic view of self, family and society
- Behavior problems at school, difficulty learning
What are the causes?
Here are a few of the reasons a child may not be able to establish successful attachment relationships:
- Emotional neglect
- Physical or sexual abuse
- Separation from primary caregiver
- Changes in primary caregiver
- Traumatic experiences such as death of parent or disaster
- Maternal depression
- Maternal use of drugs or alcohol
- Undiagnosed, isolating painful illness such as colic or ear infections
How can you help a child with RAD?
Strong relationships with relatives, teachers and childcare providers can help the child develop the ability to develop healthy attachments. The actual treatment depends on the child. The child must be in an environment where he or she feels safe and can learn to trust. It’s helpful to remember ways to communicate than can build that kind of trust. For example, a baby or young child will follow your visual cues. It’s important to make eye contact, have a positive facial expression, posture and body movements. In addition, the tone of voice you use, your speech rhythm, rate and intensity are ways to communicate care and understanding.
Attention Deficit and Hyperactivity Disorder (sometimes called A.D.D.) is a condition in which a child cannot maintain attention and has poor impulse control. They may be restless and overactive. Often these symptoms appear in some children in the preschool and early school years. It’s estimated that between 3 and 5 percent of children have ADHD.
What are the characteristics of ADD/ADHD?
- Often fidgets with hands or feet, or often squirms in seat
- Can’t stay seated
- Has difficulty waiting turns in group situations
- Often blurts out answers to questions before they have been completed
- Doesn’t listen well, has trouble following instructions – especially complex questions
- Is easily distracted
- Shifts quickly from one activity to another
- Has difficulty playing quietly
- Often talks excessively, often interrupts others
- Often loses things necessary for activities at home or at school
- Engages in activities without thinking of the consequences
How is this diagnosed?
Because many children may have a few of these symptoms, it’s important that your child receive a through examination. There is no specific test to determine the presence of ADHD. Your doctor will also evaluate your child to make sure the symptoms are not caused by another disorder, such as Tourette Syndrome, a learning disability or depression.
What Causes ADHD?
When your child is diagnosed with any type of condition, it’s common to wonder what caused it. While researchers haven’t pinpointed any exact cause for ADHD, there appears to be a genetic link, since children with ADHD often have a close relative with the disorder.
There has not been any link proven between too much sugar and this condition. However, there appears to be a link between smoking during pregnancy and ADHD in a child. Other risk factors may include premature delivery, very low birth weight, and injuries to the brain at birth.
What is the treatment?
Your child’s doctor will first take a complete medical history of your child. Usually vision and hearing are tested to rule out the possibility of other medical conditions. Some emotional situations, such as extreme stress, depression, and anxiety can look like ADHD, so your doctor will ask you questions to rule out these conditions as well.
To be considered for a diagnosis of ADHD:
- a child must display behaviors from one of the three subtypes before age 7.
- these behaviors must be more severe than in other kids the same age.
- the behaviors must last for at least 6 months.
- the behaviors must occur in and negatively affect at least two areas of a child’s life (such as school, home, day-care settings, or friendships).
ADHD is best treated with a combination of medication and behavior therapy. Your child’s physician will recommend a treatment plan that will successfully manage this condition.
Disorders that Sometimes Accompany ADHD
Learning Disabilities
Many children with ADHD – approximately 20 to 30 percent – also have a specific learning disability (LD). In preschool years, these disabilities include difficulty in understanding certain sounds or words and/or difficulty in expressing oneself in words. In school age children, reading or spelling disabilities, writing disorders, and arithmetic disorders may appear. A type of reading disorder, dyslexia, is quite widespread. Reading disabilities affect up to 8 percent of elementary school children.
Tourette Syndrome
A very small proportion of people with ADHD have a neurological disorder called Tourette Syndrome. People with Tourette Syndrome have various nervous tics and repetitive mannerisms, such as eye blinks, facial twitches, or grimacing. Others may clear their throats frequently, snort, sniff, or bark out words. These behaviors can be controlled with medication. While very few children have this syndrome, many of the cases of Tourette syndrome have associated ADHD. In such cases, both disorders often require treatment that may include medications.
Oppositional Defiant Disorder
As many as one-third to one-half of all children with ADHD – mostly boys – have another condition, known as Oppositional Defiant Disorder (ODD). These children are often defiant, stubborn, non-compliant, have outbursts of temper, or become belligerent. They argue with adults and refuse to obey.
Conduct Disorder
About 20 to 40 percent of ADHD children may eventually develop conduct disorder (CD), a more serious pattern of antisocial behavior. These children frequently lie or steal, fight with or bully others, and are at a real risk of getting into trouble at school or with the police. They violate the basic rights of other people, are aggressive toward people and/or animals, destroy property, break into people’s homes, commit thefts, carry or use weapons, or engage in vandalism. These children or teens are at greater risk for substance use experimentation, and later dependence and abuse. They need immediate help.
Anxiety and Depression
Some children with ADHD often have co-occurring anxiety or depression. If the anxiety or depression is recognized and treated, the child will be better able to handle the problems that accompany ADHD. Conversely, effective treatment of ADHD can have a positive impact on anxiety as the child is better able to master academic tasks.
Bipolar Disorder
There are no accurate statistics on how many children with ADHD also have bipolar disorder. Differentiating between ADHD and bipolar disorder in childhood can be difficult. In its classic form, bipolar disorder is characterized by mood cycling between periods of intense highs and lows. But in children, bipolar disorder often seems to be a rather chronic mood dysregulation with a mixture of elation, depression, and irritability. Furthermore, there are some symptoms that can be present both in ADHD and bipolar disorder, such as a high level of energy and a reduced need for sleep. Of the symptoms differentiating children with ADHD from those with bipolar disorder, elated mood and grandiosity of the bipolar child are distinguishing characteristics.
Where can I get more information?
AD-IN Attention Deficit Information Network
Address
475 Hillside Avenue
Needham, MA 02194
(617) 455-9895
(617) 444-5466 (Fax)
adin@gis.net
C.H.A.D.D. – Canada
Address
1376 Bank Street, Suite 214
Ottawa, ON K1H 1B3 CANADA
(613) 731-1209
(613) 257-1563 (Fax)C.H.A.D.D. – USA
Address
499 NW 70th Avenue, Suite 101
Plantation, FL 33317
(800) 233-4050
(954) 587-3700
(954) 587-4599 (Fax)
national@chadd.org
The ADHD Challenge
Address
P.O. Box 2277
W. Peabody, MA 01960-7277
(800) 233-2322
(508) 535-3276 (Fax)
Koplow@grs.net
National ADD
Address
P.O. Box 972
Mentor, OH 44061
(800) 487-2282 (Voice Mail)
(440) 350-9595
(440) 350-0223 (Fax)
NATLADDA@aol.com
Autism is a disorder that is usually diagnosed in early childhood. Also called autistic spectrum disorder (ASD), autism is considered a pervasive developmental disorder (PDD).
Autism is caused by a problem with the brain, and can impact a person’s functioning at different levels, from very mildly to severely. There is usually nothing about how a person with an ASD looks that sets them apart from other people, but they may communicate, interact, behave, and learn in ways that are different from most people. The thinking and learning abilities of people with ASD can vary – from gifted to severely challenged. Autistic disorder is the most commonly known type of ASD, but there are others, including “pervasive developmental disorder-not otherwise specified” (PDD-NOS) and Asperger Syndrome.
What are the symptoms of autism?
The main signs and symptoms of autism involve communication, social interactions and repetitive behaviors.
Children with autism might have problems talking with you, or they might not look you in the eye when you talk to them. They may have to line up their pencils before they can pay attention, or they may say the same sentence again and again to calm themselves down. They may flap their arms to tell you they are happy, or they might hurt themselves to tell you they are not. Some people with autism never learn how to talk.
A child with autism might:
- Not play “pretend” games (pretend to “feed” a doll)
- Not point at objects to show interest (point at an airplane flying over)
- Not look at objects when another person points at them
- Have trouble relating to others, or not have an interest in other people at all
- Avoid eye contact and want to be alone
- Have trouble understanding other people’s feelings or talking about their own feelings
- Prefer not to be held or cuddled, or might cuddle only when they want to
- Appear to be unaware when other people talk to them, but respond to other sounds
- Be very interested in people, but not know how to talk, play, or relate to them
- Repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language (echolalia)
- Have trouble expressing their needs using typical words or motions
- Repeat actions over and over again
- Have trouble adapting when a routine changes
- Have unusual reactions to the way things smell, taste, look, feel, or sound
- Lose skills they once had (for instance, stop saying words they were once using)
* Note: Contact your child’s doctor or nurse if your child experiences a dramatic loss of skills at any age.
Because people with autism can have very different features or symptoms, health care providers think of autism as a “spectrum” disorder. Asperger Syndrome is a milder version of the disorder.
What is the cause?
The cause of autism is not known. Autism lasts throughout a person’s lifetime.
How is autism diagnosed?
Usually a team of specialists is involved in the diagnosis. This team may include a neurologist, psychiatrist, developmental pediatrician, psychologist, gastroenterologist, audiologist, speech therapist, occupational therapist and other professionals. There is no specific autism test, rather diagnosis is based on observation of the child’s behavior, educational and psychological testing, and parents observation. The following are warning signs of autism:
- No big smiles or other warm, joyful expressions by six months or thereafter
- No back-and-forth sharing of sounds, smiles or other facial expressions by nine months or thereafter
- No words by 16 months
- No two-word meaningful phrases (without imitating or repeating) by 24 months
- Any loss of speech or babbling or social skills at any age
What is the treatment?
There is no cure, but treatment can help. Treatments include behavior and communication therapies and medicines to control symptoms. If your child is diagnosed with autism, early intervention should begin when he or she is diagnosed. While there is no single treatment for all children with autism, most respond best to highly structured behavioral programs. According to The National Institute of Child Health and Human Development and The Autism Society of America, these are the most popular treatment options.
Applied Behavior Analysis (ABA)
Many of the interventions used to treat children on the autism spectrum are based on the theory of Applied Behavior Analysis (ABA). Behavior analysis is a natural science of behavior that was originally described by B.F. Skinner in the 1930s. Positive reinforcement is used to improve a child’s skills in communication, play, social, academic, self-care and other skills, and to reduce troubling behaviors. The guiding principle of this approach is that the behavior that is rewarded is more likely to be rewarded than the behavior this is ignored.
Floortime
Floortime is a treatment method developed by child psychiatrist Stanley Greenspan. It’s called floortime because the parent actually gets down on the floor with the child to meet and work with him at his own developmental level. This method builds upon the child’s strengths and taps into the child’s own motivation. In addition to having speech, occupational and physical therapists trained in the floortime technique work with the child, the parents also do floortime activities with the child, and the parents learn how to adapt how they relate to their child.
Nutrition Therapy
Making changes to an autistic child’s diet is thought to help the child’s brain function. It’s important to consult a registered dietician before trying any of these approaches to make sure your child receives the proper amount of vitamins, minerals and fiber. Before meeting with the dietician, parents should record how the child is currently eating and what behaviors occur after eating. This is necessary to evaluate if changing the diet has changed behavior.
One popular dietary treatment involves removing gluten (a protein found in barley, rye, oats and wheat) and casein (a protein found in dairy products) from the autistic child’s diet. This is called the Gluten Free, Casein Free diet. While this diet is currently being studied, some parents report that eliminating gluten and casein from their autistic child’s diet has helped regulate bowel habits, sleep activity, and behaviors.
Another dietary treatment is a Specific Carbohydrate diet. This diet was initially designed to treat inflammatory bowel disease. It was created to remove the foods that cannot be properly broken down. Some parents have tried this diet with their autistic children and have reported positive results.
The third diet that some people feel might be beneficial to children with autism is the Elimination diet. Many children with autism have been found to have food allergies that can contribute to some of their autism behaviors. The foods found to be responsible for 90 percent of allergic reactions include milk, egg, peanut, fish, wheat, soy, tree nuts, and shellfish.
Occupational Therapy
Your child’s coping skills, fine motor skills, play skills, self help skills, and socialization skills can all be improved through occupational therapy. Occupational therapists can also help autistic children respond to the information coming through the senses. In addition, since children with autism sometimes have problems with transitions, occupational therapists can help create soothing strategies for them. Usually, an occupational therapist will evaluate a child to determine if he or she has accomplished tasks appropriate to the child’s age, such as dressing and play skills, and then use occupational therapy methods to improve his or her skills.
This is usually part of a team effort with other members of the medical and educational community, as well as family members.
PECS
This technique teaches autistic children to communicate via picture cards, which can be effective for autistic children who sometimes tend to learn visually. By using these pictures, children learn how to communicate what they need, want or feel. This technique has helped some children with autism improve their communications skills, and for some, this improvement has resulted in the ability to speak. These pictures can be purchased or parents can make them from pictures in magazines and other books.
Some feel the success of this program comes from letting the child communicate at first non-verbally, which is less frustrating.
Relationship Development Intervention (RDI)
This program, based on the work of psychologist Steven Gutstein, is a parent-based treatment that helps address issues such as gaining friendships, feeling empathy, expressing love and being able to share experiences with others.
According to Dr’s Gutstein’s research, individuals with autism seemed to lack certain abilities necessary for success in managing the real life environments that are dynamic and changing. He defines these six aspects as:
- Emotional Referencing: The ability to use an emotional feedback system to learn from the subjective experiences of others.
- Social Coordination: The ability to observe and continually regulate one’s behavior in order to participate in spontaneous relationships involving collaboration and exchange of emotions.
- Declarative Language: Using language and non-verbal communication to express curiosity, invite others to interact, share perceptions and feelings, and coordinate your actions with others.
- Flexible thinking: The ability to rapidly adapt, change strategies, and alter plans based upon changing circumstances.
- Relational Information Processing: The ability to obtain meaning based upon the larger context. Solving problems that have no "right-and-wrong" solutions.
- Foresight and Hindsight: The ability to reflect on past experiences and anticipate potential future scenarios in a productive manner.
The SCERTS® Model
(Prizant, Wetherby, Rubin, Rydell & Laurent, 2006)SCERTS® stands for Social Communication and Emotional Regulation, and implementing Transactional Supports. This was developed by Barry Prizant, Amy Wetherby, Emily Rubin, Amy Laurent and Patrick Rydell, a multidisciplinary team of clinicians, researchers, and educators who have more than 100 years experience, and have published extensively in the field of autism.
Social Communication is defined as, “developing spontaneous, functional communication and secure, trusting relationships with children and adults.”
Emotional Regulation can be defined as, “the ability to maintain a well-regulated emotional state to be most available for learning and interacting.”
Transactional Support is defined as, “supporting children, their families, and professionals to maximize learning, positive relationships and successful social experiences across home, school and community settings.”
This model has families and educators working together. It’s different from other approaches in that it focuses on child-initiated communication. In addition, it promotes communication via extensive use of visual, such as photos and picture symbols. The SCERTS® model has been designed to help those with autism learn and apply functional skills in different settings with a variety of individuals. In order to be effective, the SCERTS® model needs the involvement of teachers, therapists, parents, siblings, and peers.
Speech Therapy
The communications problems of autistic children vary to some degree and may depend on the intellectual and social development of the individual. Some may be completely unable to speak, whereas others have well-developed vocabularies and can speak at length on topics that interest them. Any attempt at therapy must begin with an individual assessment of the child’s language abilities by a trained speech and language pathologist.
Two pre-skills for language development are joint attention and social initiation. Joint attention involves an eye gaze and referential gestures such as pointing, showing and giving. Children with autism lack social initiation such as questioning, make fewer utterances, and fail to use language as a means of social initiation. Though no one treatment is found to successfully improve communication, the best treatment begins early during the preschool years, is individually tailored, and involves parents along with professionals. The goal is always to improve useful communication. For some, verbal communication is realistic – for others gestured communication or communication through a symbol system, such as picture boards, can be attempted. Periodic evaluations must be made to find the best approaches and to reestablish goals for the individual child.
Therapeutic Listening
Just because a child can hear doesn’t mean he or she is listening. Hearing is passive and it doesn’t mean paying attention to the sound and what those sounds mean. Listening is different because it is active and voluntary. Listening requires a person to want to communicate and focus the ear on certain sounds. The entire brain is needed to listen. If a child with autism has listening difficulties, it will interfere with his ability to accurately perceive, process, and respond to sounds. This can impact the child’s perception, motor, attention, and learning. Here are some of the outcomes that might be possible with a therapeutic listening program:
Modulation/Self-Regulation
- Improvement in sleep/wake cycles
- Reduction of sensory defensive behaviors
- A smoothing out of mood variance and arousal state
- Improvement in toilet training, especially over the age of 5 years old
- Increased regularity of hunger and thirst cycles
- Improved focus and attention
Postural Tone/Postural Attention
- Establishment of body midline
- Ability to sustain active posture on stable and dynamic surfaces
- Improved cocontraction around shoulders and hips
- Active use of rotation in movement patterns
Motor Control
- Use of bilateral motor patterns
- Emergence of praxis
- Improved articulation
- Improved fine motor skill
Spatial-Temporal Organization
- Improved timing of motor execution
- Improved timing of social interactions
- Discrimination of dimensionality and directionality of spatial concepts
- Improved ability to maneuver through space
- Improved handwriting and visual motor skill
Communication
- Greater range of non-verbal communication
- Non-verbal communication matches communicative intent
- Greater emotional expressiveness
Frick, Sheila, Listening with the Whole Body, 2000, p. 3-16
TEACCH
TEACCH, which stands for, Training and Education of Autistic and Related Communication Handicapped Children, dates back to the 1960’s when doctors Eric Schopler, R.J. Reichler, and Ms. Margaret Lansing were working with children with autism and constructed a means to gain control of the teaching setup so that independence could be fostered in the children.
What makes the TEACCH approach unique is that the focus is on the design of the physical, social and communicating environment. The environment is structured to accommodate the difficulties a child with autism has while training them to perform in acceptable and appropriate ways.
Like other programs created to help autistic children, TEACCH takes in consideration that autistic children are often visual learners. This program puts children in a highly structured environment, which is believed to help autistic children learn.
Alternative treatment options
Many new treatments have been developed that might be effective, but have not yet been scientifically proven. You might want to discuss these alternative treatments with your child’s medical team.
Facilitated Communication
This technique assumes that by supporting a nonverbal child’s arms and fingers so that he or she can type on a keyboard, he or she will be able to type out his or her inner thoughts. There have been several scientific studies that have shown that the typed messages actually reflect the thoughts of the person providing the support.
Holding Therapy
With holding therapy, the parent continues to hold the child for long periods of time, even if the child resists. Proponents of this technique say it forges a bond between the parent and the child; however, there is no scientific evidence to support this claim.
Auditory Integration Therapy
The child listens to a variety of sounds with the goal of improving language comprehension. Advocates of this method suggest that it helps people with autism receive more balanced sensory input from their environment. When tested using scientific procedures, the method was shown to be no more effective than listening to music. However, some parents report that children make significant behavioral and language gains following this treatment.
Dolman/Delcato Method
People are made to crawl and move as they did at each stage of early development, in an attempt to learn missing skills. Again, no scientific studies support the effectiveness of this method.
Where can I get more information?
For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute’s Brain Resources and Information Network (BRAIN) at:
BRAIN
Address
P.O. Box 5801
Bethesda, MD 20824
Phone
(800) 352-9424Internet
http://www.ninds.nih.govAssociation for Science in Autism Treatment
Address
P.O. Box 188
Crosswicks, NJ 08515-0188
Phone
781-397-8943
Fax
781-397-8887Internet
http://www.asatonline.org
info@asatonline.orgAutism National Committee (AUTCOM)
Address
P.O. Box 429
Forest Knolls, CA 94933Internet
http://www.autcom.orgAutism Network International (ANI)
Address
P.O. Box 35448
Syracuse, NY 13235-5448Internet
http://ani.autistics.org
jisincla@mailbox.syr.eduAutism Research Institute (ARI)
Address
4182 Adams Avenue
San Diego, CA 92116
Phone
619-281-7165
Fax
619-563-6840Internet
http://www.autismresearchinstitute.com
director@autism.comAutism Society of America
Address
7910 Woodmont Avenue
Suite 300
Bethesda, MD 20814-3067 Phone
301-657-0881
800-3AUTISM (328-8476)
Fax
301-657-0869Internet
http://www.autism-society.orgMAAP Services for Autism, Asperger’s, and PDD
Address
P.O. Box 524
Crown Point, IN 46308
Phone
219-662-1311
Fax
219-662-0638Internet
http://www.maapservices.org
info@maapservices.orgAutism Speaks, Inc.
Address
2 Park Avenue
11th Floor
New York, NY 10016
Phone
212-252-8584
California: 310-230-3568
Fax
212-252-8676Internet
http://www.autismspeaks.org
contactus@autismspeaks.orgNational Dissemination Center for Children with Disabilities
Address
U.S. Dept. of Education, Office of Special Education Programs
P.O. Box 1492
Washington, DC 20013-1492
Phone
800-695-0285
Fax
202-884-8441Internet
http://www.nichcy.org
nichcy@aed.orgNational Institute of Child Health and Human Development (NICHD)
Address
National Institutes of Health, DHHS
31 Center Drive, Rm. 2A32 MSC 2425
Bethesda, MD 20892-2425
Phone
301-496-5133
Fax
301-496-7101Internet
http://www.nichd.nih.govNational Institute on Deafness and Other Communication Disorders Information Clearinghouse
Address
1 Communication Avenue
Bethesda, MD 20892-3456
Phone
800-241-1044
800-241-1055 (TTD/TTY)Internet
http://www.nidcd.nih.gov
nidcdinfo@nidcd.nih.govNational Institute of Mental Health (NIMH)
Address
National Institutes of Health, DHHS
6001 Executive Blvd. Rm. 8184, MSC 9663
Bethesda, MD 20892-9663
Phone
301-443-4513
866-615-NIMH (6464)
301-443-8431 (TTY)
Fax
301-443-4279Internet
http://www.nimh.nih.gov
nimhinfo@nih.govThe sources for some of this information is the Center for Disease Control and Prevention and the National Institute of Neurological Disorders and Stroke
The Brachial Plexus is a network of nerves that conducts signals from the spine to the shoulder, arm, and hand. Brachial plexus injuries are caused by damage to those nerves. The severity of the injury is determined by the type of damage done to the nerves.
What are the symptoms of brachial plexus injuries?
- A limp or paralyzed arm
- Lack of muscle control in the arm, hand, or wrist
- Lack of feeling or sensation in the arm or hand
What is the cause of brachial plexus injuries?
These injuries can occur as a result of shoulder trauma, tumors, or inflammation. There is a rare syndrome called Parsonage-Turner Syndrome, or brachial plexitis, which causes inflammation of the brachial plexus without any obvious shoulder injury. This syndrome can begin with severe shoulder or arm pain followed by weakness and numbness. In infants, brachial plexus injuries may happen during birth if the baby’s shoulder is stretched during passage in the birth canal.
What is the treatment?
Many brachial plexus injuries heal without specific treatment. Physical and occupational therapy may be useful to help regain strength and use of the arm and hand. Medication may be needed to reduce pain and allow more use of the arm. With severe traumatic injuries, surgery is sometimes necessary.
What is the prognosis?
The prognosis depends upon the severity of the injury. Those with stretch injuries have the best chance to regain normal usage of the arm and hand.
Where can I get more information?
Brachial Plexus Palsy Foundation
Address
210 Springhaven Circle
Royersford, PA 19468
610-792-4234
info@brachialplexuspalsyfoundation.org
Internet
www.brachialplexuspalsyfoundation.org
National Rehabilitation Information Center (NARIC)
Address
4200 Forbes Boulevard, Suite 202
Lanham, MD 20706-4829
800-346-2742
301-459-5900/301-459-5984 (TTY)
Bronchopulmonary Dysplasia (BPD) is a serious lung condition that affects mostly babies who are born more than 10 weeks before their due dates and weigh less than 2½ pounds at birth. Usually, these babies also have breathing problems at birth and need long-term breathing support and oxygen.
Many of these babies are born with serious respiratory distress syndrome (RDS). A normal baby’s lungs make a liquid, called surfactant, which coats the insides of the lungs and keeps them open so the baby can breathe in air once it’s born. Babies born with RDS have lungs that haven’t developed enough to make surfactant. Unable to breath on their own, these babies are put on either a ventilator (also called a respirator) or a nasal continuous positive airway pressure (NCPAP) machine. The breathing machines are necessary to prevent damage to their brains and other body organs that need oxygen. The babies are also given surfactant.
What is the prognosis?
Typically, babies with RDS begin to get better within the next 2 to 4 weeks. If a baby gets worse and needs more oxygen and/or breathing assistance from a machine, the baby has developed BPD. These babies have lungs that are less developed.
With the current treatments, most babies with BPD get better and many go on to live normal lives.
Cerebral Palsy is the term used to describe any one of a number of neurological disorders that appear in infancy or early childhood, and permanently affect body movement and muscle coordination but don’t worsen over time. Even though cerebral palsy affects muscle movement, it isn’t caused by problems in the muscles or nerves. It is caused by abnormalities in parts of the brain that control muscle movements. The majority of children with cerebral palsy are born with it, although it may not be detected until months or years later.
What are the symptoms of Cerebral Palsy?
The early signs of Cerebral Palsy usually appear before a child reaches 3 years of age. The most common are a lack of muscle coordination when performing voluntary movements (ataxia); stiff or tight muscles and exaggerated reflexes (spasticity); walking with one foot or leg dragging; walking on the toes, a crouched gait, or a “scissored” gait; and muscle tone that is either too stiff or too floppy. A small number of children have Cerebral Palsy as the result of brain damage in the first few months or years of life, brain infections such as bacterial meningitis or viral encephalitis, or head injury from a motor vehicle accident, a fall, or child abuse.
How is Cerebral Palsy diagnosed?
Doctors will test your baby’s motor skills and closely evaluate the mother’s and baby’s medical history. In addition to checking for the symptoms mentioned above, the doctor will also test the baby’s reflexes and look for early development of hand preference. During the first twelve months of life, babies usually do not show a hand preference. But infants with spastic hemiplegia may develop a preference much earlier, since the hand on the unaffected side of their body is stronger and more useful.
Doctors will also rule out other disorders and determine if the condition is getting worse. Cerebral Palsy is not progressive. So, if the child is continuously losing additional motor skills, it’s another disease or condition. Tests such as computed tomography (CT) scans, magnetic resonance imaging (MRI), and ultrasonography can be ordered.
What are the causes?
Cerebral Palsy is caused by an injury to the brain before, during, or shortly after birth. In many cases, no one knows for sure what caused the brain injury or what may have been done to prevent the injury.
Sometimes injuries to a baby’s brain happen while the baby is still in the mother’s womb. The injury might be caused by an infection or by an accident in which the mother is hurt. If a mother has a medical problem, such as high blood pressure or diabetes, this can also cause problems in the baby. There may be problems during birth, such as the baby not getting enough oxygen, or a difficult delivery in which the baby’s brain is injured. Problems after birth may happen when a baby is born too soon (premature delivery) and his body is not ready to live outside his mother’s womb. Even babies born at the right time can have infections, or bleeding in their brain which causes a brain injury because the brain is still developing even after birth.
What is the treatment?
Cerebral Palsy can’t be cured, but treatment will often improve a child’s capabilities. Many children go on to enjoy near-normal adult lives if their disabilities are properly managed. In general, the earlier treatment begins, the better chance children have of overcoming developmental disabilities or learning new ways to accomplish the tasks that challenge them. Treatment may include physical and occupational therapy, speech therapy, drugs to control seizures, relax muscle spasms, and alleviate pain; surgery to correct anatomical abnormalities or release tight muscles; braces and other orthotic devices; wheelchairs and rolling walkers; and communication aids, such as computers with attached voice synthesizers.
What are the different types of Cerebral Palsy?
Spastic Cerebral Palsy
If muscle tone is too high or too tight, the term spastic is used to describe the type of cerebral palsy. Children with spastic CP have stiff and jerky movements because their muscles are too tight. They often have a hard time moving from one position to another or letting go of something in their hand. This is the most common type of CP. About half of all people with CP have spastic CP.
Ataxic Cerebral Palsy
Low muscle tone and poor coordination of movements is described as ataxic (a-tax-ick) CP. Children with ataxic CP look very unsteady and shaky. They have alot of shakiness, like a tremor you might have seen in a very old person, especially when they are trying to do something like write, turn a page, or cut with scissors. They also often have very poor balance and may be very unsteady when they walk. Because of the shaky movements and problems coordinating their muscles, kids with ataxic CP may take longer to finish writing or to complete art projects.
Athetoid Cerebral Palsy
The term athetoid is used to describe the type of Cerebral Palsy when muscle tone is mixed – sometimes too high and sometimes too low. Children with athetoid CP have trouble holding themselves in an upright, steady position for sitting or walking, and often show lots of movements of their face, arms and upper body that they don’t mean to make (random, involuntary movements). These movements are usually big. For some kids with athetoid CP, it takes a lot of work and concentration to get their hand to a certain spot (like to scratch their nose or reach for a cup). Because of their mixed tone and trouble keeping a position, they may not be able to hold onto things (like a toothbrush, fork, or pencil). About one-fourth of all people with CP have athetoid CP.
Mixed Cerebral Palsy
When muscle tone is too low in some muscles and too high in other muscles, the type of cerebral palsy is called mixed. About one-fourth of all people with CP have mixed CP.
Besides different kinds of muscle tone, kids with CP also show different parts of their bodies that are affected by the CP. This is also due to what part of their brain was hurt and how big the injury was.
Quadriplegia
When a child shows CP in all four of their limbs – both arms and both legs, it is called quadriplegia. Quad means four. Usually, kids with quadriplegia have trouble moving all the parts of their bodies, their face and trunk, as well as their arms and legs, and may need a wheelchair to get around. Because of the problems controlling the muscles in their face and upper body, they also have trouble talking and eating.
Hemiplegia
Hemiplegia means that the CP affect one side of the child’s body. Hemi means half, so the right arm and leg or the left arm and leg are affected. The other side of the child’s body works just fine. Many children with hemiplegia are able to walk and run, although they may look a little awkward or have a limp.
Diplegia
Some children have CP just in their legs, or much more severe in their legs than in their arms. This is called diplegia. Di means two, so in diplegia, only the two lower limbs are affected. As you probably can guess, the difficulty for children with diplegia is using their legs, so walking and running may be hard for them. Because their upper bodies are usually not affected, they have a good ability to hold themselves upright and a good use of their arms and hands. You may wonder whether anyone ever has CP in their arms but not their legs. This happens sometimes, but it is very, very rare.
Are there any other problems associated with Cerebral Palsy?
In addition to problems controlling their muscle movement, children with CP may have some other problems too. Most of these are caused by the same brain injury that caused the CP.
Talking and Eating
Just as CP can affect the way a person moves his or her arms and legs, it can also affect the way he or she moves his or her mouth, face and head. This can make it hard for the person to talk clearly and to bite, chew and swallow food. If you meet a girl with CP, you may notice that her speech is hard to understand or that she seems to work very hard just to get out a few words. This is because she is not able to make her lips, jaw and tongue move as quickly as you can. She may also have trouble controlling her breathing flow to make her voice work. All of these parts of your body are very important in talking.
Try this: Make a “g” sound (say “guh”). To do that, you must pull your tongue back and touch the back of your tongue to the back part of the roof of your mouth (your palate). Then, you must breathe out a little but not let the breath through until you are ready to make the sound. When you say “guh,” you let your tongue drop while letting the breath out and turning on your voice. Whew! That’s a lot of stuff to do just to make one sound. Just think of all the movements you must put together to say a whole word, or a sentence. Now imagine what it would be like to make sounds and words if you had trouble controlling your tongue, lips, and breathing!
The speech problem most children with CP have is called dysarthria (dis-are-three-a). That means it is hard for them to control and coordinate the muscles needed to talk. Their speech may sound very slow and slurred, and their faces may look a little funny when they are trying to talk. Some kids’ voices may sound different, too. If too much air comes through your nose when you talk, you sound hypernasal (hyper means too much), like Erkel from the old TV show “Family Matters”. If not enough air comes through your nose, you sound hyponasal (hypo means not enough), like when you have a bad cold and can’t breathe through your nose. If you meet someone with CP who has speech problems, try hard to listen carefully when they are talking, and don’t be afraid to tell them when you can’t understand something they’ve said. Most people would rather say it again or find a different way to communicate (maybe writing or pointing), than have you pretend you understood them when you did not.
Many of the same muscles involved in talking are also used when you eat. Some kids with CP might not be able to bite and chew foods like a hotdog or a peanut butter sandwich. They may also have trouble sucking through a straw or licking an ice cream cone.
Learning Problems
About one-fourth to one-half of children with CP also have some type of learning problem. It may be a learning disability, so that they have trouble with one or two subjects in school but learn other things pretty well, or may be a more severe learning problem like mental retardation, in which they learn everything at a slower rate. There are many different levels of mental retardation, so that people with mild mental retardation may learn to read and write and do math, but people with more severe mental retardation probably will not. This does not mean that children with severe mental retardation can’t learn. It means that they learn at a slower pace than most other kids, and that they will need some special learning help in school.
Seizures
About half of all children wih CP have seizures. This means that they have times when there is some abnormal activity in their brains that interrupts what they are doing. Often, the abnormal brain activity happens in the same place as the brain injury which caused the CP. Your brain is constantly sending messages out to your body – to breathe, to move, to keep your heart pumping. A seizure is a series of abnormal messages being sent out very close together. These abnormal messages may cause someone to stare and stop moving during a seizure, or may cause them to loose control of their body and fall down. Some people show shaking movements all over when they are having a seizure. Seizures usually last a few seconds to a few minutes, and in most case are not dangerous. Many children take special medicine to help prevent seizures or reduce the number of seizures they have.
You may already know that seizures also occur in many people who do not have CP.
Therapy for cerebral palsy
Children with CP often go to different kinds of therapy to help them improve their motor skills for things like walking, talking and using their hands. Some kids get therapy at school and some kids go to a special clinic to see their therapists. Therapists are special teachers who are trained to work with people on learning better or easier ways to do things. Just like a coach who helps you learn and practice new skills to make you a better soccer or basketball player, therapists “coach” people to help them learn and practice new skills.
Physical Therapy
Physical therapists help children learn better ways to move and balance. They may help children with CP learn to walk, use their wheelchair, stand by themselves, or go up and down stairs safely. Kids may also work on fun skills in physical therapy like running, kicking and throwing a ball, or learning to ride a bike. Physical therapy is usually called “PT” for short.
Speech and Language Therapy
Speech therapists work with children on communication skills. Communication skills may mean talking, using sign language, or using a communication aid. Children who are able to talk may work with a speech therapist on making their speech clearer, (easier to understand) or on building their language skills by learning new words, learning to speak in sentences, or improving their listening skills. Children who are not able to talk because of their difficulty controlling the muscles needed for speech may learn sign language or use some kind of communication aid. A communication aid might be a book or poster with pictures that show things the person might want, or an alphabet board that the person can use to spell out their message. There are also computers that are used as communication aids that actually talk for the person!
Occupational Therapy
Occupational therapists usually work with children on better ways to use their arms, hands, and upper body. They may teach children better or easier ways to write, draw, cut with scissors, brush their teeth, dress and feed themselves, or control their wheelchair. Occupational therapists also help children find the right special equipment to make some everyday jobs a little easier.
Recreational Therapy
Recreational therapists help kids with CP have fun! They work with children on sports skills or other leisure activities. In recreational therapy, kids may work on dance, swimming, or horseback riding. They may also work on art or horticulture (growing and taking care of plants), or almost any other hobby they are interested in.
Where can I get more information?
United Cerebral Palsy (UCP)
Address
1660 L Street, NW
Suite 700
Washington, DC 20036
Tel: 202-776-0406 800-USA-5UCP (872-5827)
Fax: 202-776-0414
national@ucp.org
Internet
www.ucp.orgPathways Awareness Foundation [For Children With Movement Difficulties]
Address
150 N. Michigan Avenue
Suite 2100
Chicago, IL 60601
Tel: 312-893-6620 800-955-CHILD (2445)
Fax: 312-893-6621
friends@pathwaysawareness.org
Internet
www.pathwaysawareness.orgMarch of Dimes Foundation
Address
1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: 914-428-7100 888-MODIMES (663-4637)
Fax: 914-428-8203
askus@marchofdimes.com
Internet
www.marchofdimes.comEaster Seals
Address
230 West Monroe Street
Suite 1800
Chicago, IL 60606-4802
Tel: 312-726-6200 800-221-6827
Fax: 312-726-1494
info@easterseals.com
Internet
www.easterseals.comChildren’s Neurobiological Solutions (CNS) Foundation
Address
1826 State Street
Santa Barbara, CA 93101
Tel: 866-CNS-5580 (267-5580) 805-898-4442
info@cnsfoundation.org
Internet
www.cnsfoundation.orgChildren’s Hemiplegia and Stroke Assocn. (CHASA)
Address
4101 West Green Oaks Blvd., Ste. 305
PMB 149
Arlington, TX 76016
Tel: 817-492-4325
info437@chasa.org
Internet
www.hemi-kids.orgUnited Cerebral Palsy (UCP) Research & Educational Foundation
Address
1025 Connecticut Avenue
Suite 701
Washington, DC 20036 Tel: 202-496-5060 800-USA-5UCP (872-5827)
Fax: 202-776-0414
national@ucp.org
Internet
www.ucpresearch.orgPedal with Pete [For Research on Cerebral Palsy]
Address
P.O. Box 274
Kent, OH 44240
Tel: 800-304-PETE (7383)
Fax: 330-673-1240
petezeid@aol.com
Internet
www.pedalwithpete.com
Congenital Limb Defects occur when a portion or the entire upper or lower limb fails to form normally when the baby is developing in the uterus.
What causes congenital limb defects?
Most congenital limb defects appear to be random events with an unknown cause. However, risk factors that may increase the likelihood of a congenital limb defect include the following:
- Conditions affecting the baby in the uterus during development
- Exposures by the mother to chemicals or viruses while pregnant
- Specific medications
How are congenital limb defects diagnosed?
The diagnosis of congenital limb defects is made at birth. The most common congenital limb defects can be classified as follows:
- Complete or partial absence of the limb (such as fibula hemimelia or congenital absence of the tibia)
- Failure of the portion of the limb to separate (commonly seen in fingers or toes)
- Duplication (commonly seen as extra fingers or toes)
- Overgrowth, the limb is much larger than the normal limb
- Undergrowth, the limb is much smaller than the normal limb
- Constriction band syndrome – early rupture of the amnion (inner membranes that cover the fetus in utero and contains the amniotic fluid) resulting in bands that may become entangled in the extremities of the fetus, causing immobilization, constrictions of the limbs, amputations, and other deformities.
What is the treatment for congenital limb defects?
Specific treatment for congenital limb defects will be determined by your child’s physician based on:
- Your child’s age, overall health, and medical history
- The extent of the condition
- The type of condition
- Your child’s tolerance for specific medications, procedures, or therapies
- Your opinion or preference
- Expectations for the course of the condition
The overall goal for treatment of congenital limb defects is to provide the child with a limb that has proper function and appearance. Treatment goals can vary for each child. Some goals may include the following:
- Promoting normal development
- Discovering sense of independence
- Encouraging self-care
- Improving cosmetic appearance
- Adaptation
There are no standardized treatment protocols for congenital limb defects. Treatment options may include:
- Prosthetics (artificial limbs)
- Orthotics (splints or braces)
- Surgery
- Rehabilitation (physical or occupational therapy)
Cortical Visual Impairment (CVI) is a form of visual impairment that is caused by a brain problem rather than an eye problem.
CVI is sometimes known as Delayed Visual Maturation because the child’s vision can sometimes seem (to an outside observer) to be improving over time. This can be due to the child’s learning how to make better use of the unusual types of information that their malfunctioning visual system presents to them, and to take into account the context and other clues. CVI is also sometimes known as Cortical Blindness, although most people with CVI are not totally blind.
What are the symptoms of CVI?
- Variable vision. Visual ability can change from one day to the next, but it can also fluctuate from minute to minute, especially when the child is tired.
- One eye may perform significantly worse than the other, and depth perception can be very limited (although not necessarily zero).
- Many children with CVI may be able to use their peripheral vision more effectively than their central vision.
- Some objects may be easier to see than others, so your child might have difficulty recognizing faces or facial expressions, but have fewer problems with written materials.
- Children with CVI usually have full perception of colors.
- The vision of children with CVI has been described much like looking through a piece of Swiss cheese.
- Your child may have poor depth perception.
- Strong preference for a simplified view. When dealing with text, your child might prefer to see only a small amount of it at once.
- For the same reason (simplified view), your child may also dislike crowded rooms and other situations where their functioning is dependent on making sense of a lot of visual ‘clutter’.
How is cortical visual impairment diagnosed?
Diagnosing CVI is difficult. A diagnosis is usually made when visual performance is poor, but it is not possible to explain this from an eye examination. Usually a child is evaluated by a team of professionals which could include teachers of the visually impaired, physical therapists, occupational therapists, speech therapists and orientation and mobility specialists.
What is the cause of CVI?
Numerous conditions can cause CVI including a lack of sufficient oxygen in the body cells of blood or not enough blood supplied to the brain. Other causes are developmental birth defects, head injury, and infections such as meningitis and encephalitis.
What can help my child?
Therapists use a variety of teaching strategies. Here are a few examples:
- Infants and toddlers will show when and where they see best by their adaptive behaviors. Try different positions and follow your child’s lead.
- Head support should be provided during play or work sessions to avoid involuntary shifting of the visual field.
- Since a child with CVI can often still see colors, use bright fluorescent colors like red, yellow, pink and orange.
- If the child uses a lot of energy for fine motor tasks, work on fine motor and vision separately until integrating the two is possible.
- Use familiar objects (bottle, bowl, plate, bath toy, etc) one at a time. Familiarity and simplicity are very important.
- Look for toys and activities that motivate the child.
- Introduce new and old objects via touch and verbal description.
- Try having the light source behind and/or to the side of your child until you determine which is best.
Congenital CMV, or cytomegalovirus, is the most common congenital (present at birth) infection in the United States. Every year, about 40,000 children are born with congenital CMV infection.
What are the symptoms of CMV?
Most babies born with CMV (in other words, "congenital" CMV) never develop symptoms or disabilities. When babies do have symptoms, some can go away but others can be permanent.
Examples of symptoms or disabilities caused by congenital (meaning present at birth) CMV:
Temporary Symptoms:
- Liver problems
- Spleen problems
- Jaundice (yellow skin and eyes)
- Purple skin splotches
- Lung problems
- Small size at birth
- Seizures
Permanent Symptoms or Disabilities:
- Hearing loss
- Vision loss
- Mental disability
- Small head
- Lack of coordination
- Seizures
- Death
In some children, symptoms do not appear until months or years after birth. The most common of these late-occurring symptoms are hearing loss and vision loss. Children with congenital CMV are more likely to have permanent disabilities and symptoms that get worse if they had symptoms of CMV infection at birth. However, some children who appear healthy at birth can develop hearing or vision loss over time due to congenital CMV. For this reason, if you know your baby was born with CMV, it is important to have his or her hearing and vision tested regularly.
How is CMV diagnosed?
In serious cases of CMV infection, doctors can make the diagnosis by detecting the virus in a cultured sample taken from a sick person’s throat, urine, blood, or other body tissues or fluid. Blood is also drawn at different time intervals to measure levels of certain antibodies. These antibodies are part of the immune system’s response to a CMV infection, and they can signal that an active CMV infection exists. Special viral DNA-detecting tests are also sometimes used to diagnosis CMV infection.
What is the treatment?
A CMV infection can be life-threatening for newborn infants, so serious CMV infections may be treated with intravenous (IV) antiviral medication, usually in a hospital. Oral antiviral medication may also be used at home once the infection is under control. Because these antiviral medicines may have serious side effects, doctors use them with great caution, especially in children.
Children who have a lower-than-normal proficiency in vocabulary, the production of complex sentences and recall of words may be found to have a developmental expressive language disorder, also called Semantic-Pragmatic Disorder. If your child has been diagnosed with a Pervasive Developmental Disorder, he or she may also be diagnosed with this condition.
What are the symptoms?
- Below-average vocabulary skills
- Improper use of tenses (past, present, future)
- Problems in the production of complex sentences
- Problems in recalling words
What is the treatment?
If your child is diagnosed with this disorder, language and speech therapy can help increase the number of phrases a child can use.
If your child has been diagnosed with diabetes, it means his or her pancreas is either producing little or no insulin. When working properly, the pancreas produces the hormone insulin to control blood sugar levels. Without insulin, glucose builds up in the body, overflows into the urine, and passes out of the body in the urine. When this happens, the body loses its main source of fuel.
What are the types of diabetes?
The two types of diabetes that can affect children are:
- Type 1 diabetes
- Type 2 diabetes
Type 1 Diabetes
Type 1 diabetes is an autoimmune disease. An autoimmune disease results when the body’s system for fighting infection (the immune system), turns against a part of the body. In diabetes, the immune system attacks and destroys the insulin-producing beta cells in the pancreas. The pancreas then produces little or no insulin. A person who has type 1 diabetes must take insulin daily to live.
What causes type 1 diabetes?
Research is ongoing to determine the cause. It is thought that autoimmune, genetic, and environmental factors – possibly viruses – are involved.
What are the symptoms of type 1 diabetes?
Symptoms of type 1 diabetes usually develop over a short period, although beta cell destruction can begin years earlier. Symptoms may include:
- Increased thirst and urination
- Constant hunger
- Weight loss
- Blurred vision
- Extreme fatigue
If not diagnosed and treated with insulin, a person with type 1 diabetes can lapse into a life-threatening diabetic coma, also known as diabetic ketoacidosis.
What causes type 2 diabetes?
The most common form of diabetes is type 2 diabetes. About 90 to 95 percent of people with diabetes have type 2. This form of diabetes is most often associated with older age, obesity, family history of diabetes, previous history of gestational diabetes, physical inactivity, and certain ethnicities. However, type 2 diabetes is increasing in children and adolescents.
What are the symptoms of type 2 diabetes?
The symptoms of type 2 diabetes develop gradually. Their onset is not as sudden as in type 1 diabetes. Symptoms may include:
- Fatigue
- Frequent urination
- Increased thirst and hunger
- Weight loss
- Blurred vision
- Slow healing of wounds or sores
Sometimes a person can have type 2 diabetes, though, without any symptoms.
How is diabetes diagnosed?
The fasting blood glucose test is the preferred test for diagnosing diabetes in children and is most reliable when done in the morning. However, a diagnosis of diabetes can be made based on any of the following test results, confirmed by retesting on a different day:
- A blood glucose level of 126 milligrams per deciliter (mg/dL) or more after an 8 hour fast. This test is called the fasting blood glucose test.
- A blood glucose level of 200 mg/dL or more, 2 hours after drinking a beverage containing 75 grams of glucose dissolved in water. This test is called the oral glucose tolerance test (OGTT).
- A random (taken at any time of day) blood glucose level of 200 mg/dL or more, along with the presence of diabetes symptoms.
How is diabetes treated?
The immediate treatment is to control the high blood glucose levels. Your child might need to be hospitalized initially due to the sudden onset and severity of symptoms in type 1 diabetes.
Once your child’s blood glucose levels are under control, ongoing treatment is needed to reduce symptoms, and prevent future diabetes-related complications such as blindness, kidney failure, and amputation of limbs.
A specific treatment plan will be devised for your child, but both type 1 and type 2 diabetes are treated with insulin use, meal planning and weight control, exercise, foot care, and careful self-testing of blood glucose levels.
Usually insulin injections are needed one to four times a day. Since a child is not capable of giving themselves injections, parents or other adults like school nurses will need to give the injections. Most children can handle the responsibility of giving themselves their own injections by age 14.
Where can I get more information?
National Diabetes Education Program
Address
1 Diabetes Way
Bethesda, MD 20892-3560
Phone: 1-800-438-5383Internet
www.ndep.nih.govTo find a clinical trial, check NIH’s database at www.ClinicalTrials.gov online.
To participate in studies about type 1 diabetes, contact:
Type 1 Diabetes TrialNet
Address
Phone: 1-800-425-8361Internet
www.DiabetesTrialNet.orgAmerican Diabetes Association
Address
National Service Center
1701 North Beauregard Street
Alexandria, VA 22311
Phone: 1-800-342-2383Internet
www.diabetes.orgJuvenile Diabetes Research Foundation International
Address
120 Wall Street, 19th Floor
New York, NY 10005
Phone: 1-800-533-2873Internet
www.jdrf.org
Down Syndrome (DS) is a condition in which extra genetic material causes delays in the way a child develops, and often leads to mental retardation. It affects 1 in every 800 babies born.
What are the symptoms of DS?
The symptoms of Down Syndrome can vary widely from child to child. While some kids with DS need a lot of medical attention, others lead very healthy and independent lives.
How is DS diagnosed?
A newborn baby with Down Syndrome often has physical features the attending physician will most likely recognize in the delivery room. These may include a flat facial profile, an upward slant to the eye, a short neck, abnormally shaped ears, white spots on the iris of the eye (called Brushfield spots), and a single, deep transverse crease on the palm of the hand. However, a child wi