24 hours of CDKL5

24 Hours with CDKL5 Seizures

Abbey has a very rare gene mutation called CDKL5. Like all rare genetic diseases or disorders, it can be hard to explain, to relate or even to share. So let me share what the last 24 odd hours looked like for Abbey, and as a consequence her family.

630am an extremely rare sleep in. Abbey is chatty and giggly.
7am getting ready for the day. One vacant seizure.
8am her new best friend, Alison, arrives and I’m now not needed or considered.
8 to 12pm Alison notes 2 vacant seizures, lasting 5 to 7 minutes plus 2 jerks.
12 to 2pm is lunch and preparing for the next day. Abbey is a bit tired and sleeps, some subtle seizure activity while sleeping.
2 to 6pm is family time watching a movie and discussing our solar system. Abbey is still very tired and a little spaced out. We are watching her closely.
Bedtime, she is still not quite right.
10pm large seizure with breathing difficulties.
2am large seizure with breathing difficulties
4am she is awake, ready for the day. We are not.
5 am we get up.
530am we get Abbey up, followed by 1 vacant seizure and a jerk.
8 to 10am Abbey is Home with me and note 3 vacant seizures and 3 very big jerks. Brain and ears are working overtime listening for the next subtle movement or sound that indicates a seizure, while I work and do household chores.
10am I give up trying to get anything done and we watch High School Musical 3 and knit while I wait for reinforcements.
10am to 6pm reinforcements are here, but I’m still tuned in waiting.
6pm bed for my girl, and down time for me before another unpredictable night.

Total seizure count can be up to 20 a day at the moment. Some days it can be one seizure that lasts 6 hours. This is one part of CDKL5.