Haven’t done much of an update lately so this is very overdue!
Lennyn went 13 months seizure free! We did so much traveling the last year, had so many adventures, and spent so much time with the people we love the most. Lennyn even started pre-k part time in September!
We had dodged covid up until the beginning of this month. The day Lennyn tested positive, she unfortunately seized and was hospitalized. She ended up seizing again a few days later and was hospitalized once again.
We had a take home eeg two weeks ago and Lennyn seized again while hooked up and sleeping. Her eeg is REALLY messy when she’s asleep. She is constantly spiking during sleep.
For this she was diagnosed with ESES or Electrical status epilepticus during slow-wave sleep. It is an epilepsy syndrome with sleep-induced epileptic discharges and acquired impairment of cognition or behavior. It unfortunately comes with some developmental regression and behavioral issues and risk of SUDEP.
There is no cure or textbook treatment. This was devastating to hear because we have worked (SHE HAS WORKED) so hard to keep her engaged in therapies so she could re-wire the damage to her brain.
We are weaning off one of her medications that is serving as useless, and we are going to try a 30 day regimen of steroids. There are some studies that show a 40 percent chance that it will put her brain back into a normal rhythm. 🤞🏼
Keeping our hopes high that this works and we have another year PLUS of seizure freedom in our future ❤️