It has been exactly one year since a reboot was done with Aria’s medication, Haleigh’s Hope, and with that, just less than one year since seizure control was achieved. Over the past 10 or so months, she has only had a seizure (no more clusters!), if she eats something she’s not supposed to. In January 2016, I started her on a very strict clean eating diet, and discovered a handful of specific food triggers. The combination of diet and whole plant CBD oil has proven to be extremely beneficial in Aria’s treatment.
However, these past couple weeks she had some unexplainable seizures (no obvious triggers), so today I started a reboot. Sometimes a buildup of CBD can occur on the receptors in the brain, which can lessen its effectiveness, and it is suggested to stop dosing for 2-7 days, and then restart at the starting dose; working your way back up to a dose that provides a level of control. Last year, Aria was on 1.75mg/lb of CBD, and seizure control seemed to be slipping away after making multiple changes with no avail. After doing a reboot for seven days, she restarted Haleigh’s Hope at the starting dose, 0.25mg/lb, and was then able to achieve seizure control at 1mg/lb.
Since July 4th of last year, she has been on that same dose, and once again I’ll do the reboot for about a week. The reboot timeline is tentative on seizure activity. If seizures become too frequent or atypical, she’ll be restarted immediately at 0.25mg/lb, and thus begins the two week intervals of increasing by 0.25mg/lb to find control once again. It is possible that she may end up being on a lower dose, as is what happened last year, a decrease by 0.75mg/lb, but I’m not counting my chickens before they hatch.
All in all, Aria would not be doing as well as she is, with phenomenal seizure control and leaps in development, if not for Haleigh’s Hope and the amazing team behind it!