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Toddler naps for 24 hours at a time linked to rare CDKL5 diagnosis
Summary
A 22-month-old girl with CDKL5 deficiency disorder has unpredictable 24-hour sleep periods about four times a month, her adoptive mother said; she was diagnosed in infancy and has been seizure-free since May 2025.
Content
A toddler in Louisiana with a rare genetic disorder sometimes sleeps in unpredictable 24-hour stretches, her adoptive mother reported. The child was diagnosed with CDKL5 deficiency disorder in early infancy. CDKL5 is a rare developmental epileptic encephalopathy that can include seizures, developmental delays and sleep disturbances. The family says they monitor her closely and have shared their experiences publicly.
Key details:
- The child is 22 months old and was diagnosed with CDKL5 as a few weeks old.
- About four times a month she may sleep for roughly 24 hours with little advance warning and wake mainly for brief feeding and care.
- She has developmental delays and low muscle tone, and had been seizure-free since May 2025.
- Her adoptive mother has shared information about CDKL5 online as part of family advocacy and awareness.
Summary:
The reported sleep cycle affects daily caregiving and the family adapts routines to monitor and care for the child. Undetermined at this time.
