CDKL5 is a neurodevelopmental disorder that includes signs of early-onset epilepsy. In fact 90% of children diagnosed with CDKL5 disorder are more likely to develop epilepsy. CDKL5 is derived from a gene and one of the most common causes of genetic epilepsy. Children diagnosed with CDKL5 also face many other developmental challenges as well.

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Facts

It is a neurodevelopment disease caused by the CDKL5 gene.

It impacts cognitive, motor, speech and visual function

It affects 1 in 40,000-60,000 children each year.

CDKL5 was previously called STK9

The disorder mainly affects females

The cause of CDKL5 deficiency disorder is unknown

Signs of CDKL5 deficiency includes epileptic seizures

Starting within hours of birth to 2 years of life, some children often go for 24 hours or more without sleeping.

Signs and Symptoms of CDKL5

• Early onset  of epilepsy
• Impaired gross motor skills
• Impaired fine motor skills
• Global developmental delays and intellectual disabilities
• Swallowing and feeding difficulties
• Language and communication issues

Teaching Strategies

The following are teaching strategies that can used when teaching children with the CDKL5 disorder:

• Provide frequent breaks
• Use assistive technology
• Provide extra time
• Repeat directions
• Use concrete items when possible
• Break task into smaller steps
• Teach in sequence
• Use a multisensory approach
• Use hand-on material

Children's Hospital.org
Genetic Home Reference
International Foundation for CDKL5 Research
Rare Diseases.org