Cognitive and Behavioral Development

The first few years of a child’s life are an amazing time of growth and development. Children’s growth and development encompasses physical growth as well as how they play, learn, speak and behave. The way children develop in their first three years has long term implications for the future. It is important to be aware of developmental delays and impairments that can occur within the Dravet Spectrum Disorders and get help from a child development specialist and other specialists as needed.

What Is A Developmental Delay?

A developmental delay is when a child does not reach age-specific milestones in playing, learning, speaking, behaving, and moving. To detect developmental delays, your child’s doctor may ask you questions or talk and play with your child during an exam to see how he or she learns, speaks, behaves, and moves. Although they are called “delays,” not all children with them will “catch up”—most will have permanent deficits in their abilities.

Generally, children with GEFS+, ICE-GTC or SMEB may have mild to moderate developmental delays. Problems can include, but are not limited to, learning difficulties and speech delays, and moderate behavioral abnormalities. Not all children will be affected by developmental delays, many lead completely typical lives.

Children with Dravet syndrome (SMEI) usually have moderate to very severe developmental delays. Growth and development is normal before seizures begin in infancy and may continue normally in the short term. During the second year and third year (ages one and two), you and your child’s doctor may notice that certain developmental milestones are not met. Some children experience regression, or lose skills that had been mastered.

What Can Be Done to Help Children Who Have Developmental Delays?

Young children with developmental delays, whether mild or very severe, benefit from early intervention services. These services include specialized educational services and therapies designed to meet the individual needs of a child age up to three years old and their family. The school district can work with the family to develop an Individual Family Service Plan, or IFSP to address specific learning goals in children under three years old.

Older children may also benefit from therapeutic services including speech, occupational, and physical therapy. An Individualized Education Program, or IEP, will often be developed through the school system to address specific learning goals for students with developmental delays.

At home, parents can make sure that children get the proper nutrition, exercise, and rest needed for optimal health and development.Providing a safe and loving home and spending time with your child makes a big difference.

Individuals with mild developmental delays are able to live completely independently or independently with some periodic assistance or monitoring. Individuals with severe developmental delays are likely to remain dependent on others for assistance, including help with self-care skills such as toileting, dressing, and eating.

What Developmental Skills Can Be Delayed?

The information currently available about growth and development in Dravet syndrome and related disorders is mostly observational or anecdotal, based on personal accounts. New data is emerging, however. Continued scientific study is needed to better understand developmental delays in children with Dravet Spectrum Disorders and develop tools for assessing developmental issues in these children.

Motor Skills

These skills relate to muscle activity and coordination. Children usually have normal early motor skills. Problems with motor skills tend to develop when seizures become more frequent and more severe. These may include:

  • delay in learning to walk
  • inability to control muscles, leading to difficulty in walking (ataxic gait)
  • poor balance and coordination
  • tremors or slight shaking in large and fine motor movement as well as in a resting state
Language and Communication Skills

These skills relate to the use and understanding of speech, body language and gestures in communication and understanding. Children usually have normal early language development. Problems begin in the second or third year of life, including:

  • mild or moderate speech and language delays (relating to gestures or body language)
  • a loss of language skills after normal development (aphasia)
  • severe communication delays or lack of speech
  • receptive language skills may be better than expressive language skills; children may be able to understand more than they are able to express in speech 
Cognitive Skills

These skills relate to thinking, learning, understanding, problem solving, reasoning, and remembering. Cognitive skills are critical for acquiring intellectual skills. Moderate to severe cognitive delays are a clinical feature of Dravet syndrome (SMEI) and can vary greatly from child to child. They appear less frequently in the milder forms of Dravet Spectrum Disorders.

Some of the symptoms of cognitive delay seen in children with Dravet syndrome (SMEI), include impairments in:

  • staying focused / paying attention
  • learning colors, numbers, and letters
  • learning concepts such as the appropriate use of everyday objects, imitating and pretending, cause and effect, same and different, quantities and time
  • following directions with more than a step or two
  • seeing problems from more than one point of view
  • understanding abstract ideas such as time, future, or feelings
Social Skills

These skills relate to interactions with other people, developing relationships, cooperating, and responding to feelings of others. Parents may become concerned when their children do not show the normal fear of strangers or separation anxiety at an early age. Children with moderate to severe delays in social skills may:

  • lack a sense of appropriate social boundaries
  • not fear strangers; may be “too friendly” toward strangers
  • not be able to imitate others’ behavior
  • tend toward solitary play or parallel play (cooperative play is difficult)
  • not understand taking turns
  • not understand abstract concepts, such as ownership, belonging, others’ points of view
  • not understand that their language is difficult for others to understand
Behavioral Skills

These skills relate to the use of appropriate behavior and emotions. Some unusual behaviors noted by parents of children with Dravet syndrome (SMEI) include:

  • repetitive behaviors, such as flapping or clapping of hands
  • obsessions
  • excessive stubbornness
  • excessive activity
  • tendency to wander

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