For those not following Zoe's Facebook page, here is the latest update :)
Thank you so much again for helping Zoe's journey xx
Prior to Sativex, and before trying all those additional drugs last year, we tried to wean Zoe from Lamotrigine. She did not cope well - she was hospital worthy. It was horrible. So I put her back to her original dose - and then all was right with the world again.
Since starting Sativex, I have slowly been weaning back some of Zoe's other medicines. [Bear in mind it is extremely trial and error, with no real guidance - possibly because I am very competent and confident with what I am doing - and we have extremely good relationships with Zoe's doctors.] Tonight I penned some numbers. We have dropped daily:
*1 drop of clonazepam
*1750mg vigabatrin
*250mg levetiracetam
*75mg lamotrigine.
The fact that we have removed all of this and still have an overall better control of seizures and a much better quality of life, is huge!
Zoe currently has a viral infection (throat).Normally when Zoe gets a virus she gets a temperature - yet to really see one. [Her body appears to be stronger having the cannabinoids in her system. Everything one hopes would help! Either way I’m having to learn to ready her in a different way.] She's been extra moody and tired (normal for an unwell person) and the seizures are a bit more frequent - normal for when she gets sick, but still not to the extent of what was the norm.
We have to take a moment to soak all this in - hence this post. Life is so hectic - all the monitoring and guessing and wondering - ie. are her increased seizures due to her being unwell - yes most likely; are the increased seizures due to the heat - yes also very likely; is it because I weaned too much - also possible...or maybe it's just her body adjusting to withdrawals of the meds her body has been so used to. Or maybe, just maybe - it's because she is teething! I tell you - it's not easy!
Overall Zoe is much calmer, happier, and able to take in (and potentially respond to) her surroundings better. The seizures have definitely decreased still and overall the longevity is less too. Zoe is sleeping most nights through the night! (Huge!) Spasms are still very minimal also. We have been having a few screaming episodes—which are hard to judge if it’s seizure activity of not—either way I am monitoring that.
School starts up again on Tuesday for Zoe— with Zach joining the school wagon too! I think Zoe quite likes that her little brother will be around.
Fingers crossed it will be a good school year :)
?#?itsallabouttrialanderror?
