Thoughts??
November 3, 2020 post
For the past 12 weeks Annelise has been a participant on the Anavex 2-73 double blind placebo clinical drug trial. We are not aware if Annelise was receiving the drug or the placebo but today I can confirm Annelise has had her first dose of the clinical trial drug.
She will now participate In a 48 week open label study. That means 48 weeks on the actual drug.
June 18, 2021 post
Annelise spent last night wired up for a Video EEG in the Epilepsy monitoring unit at Westmead Children's Hospital. We have been concerned by her nocturnal seizures that have been waking her from sleep. Annelise had a seizure before leaving home. On admission she was wired up and soon after had another seizure. Not long after dad had settled her for the night and she had drifted off to sleep, once again a seizure disrupted her slumber. This was captured and as you can see in the photos, how much a 10 second seizure affects our girls brainwaves. Imagine having these all the time, every day/night. Seizures leave us all feeling helpless as we never know when they will strike and there is nothing we can do once they do. We have to just ride it out along with our girl.
Some girls with Rett have hundreds a day.
Our girl is back home, her hair washed to remove all the glue, but she is not herself she is still recovering from a rough night. She was in no mood for photos or snapchat.
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