On March 10th, we began giving him a new oil called Palmetto Harmony. It does have THC in it, but only .3% which is considered legal in all 50 states. We will be on our own in terms of researching and purchasing CBD oil now, but luckily, we have the support of Tanner's neurologist to still monitor him and check blood levels. One of the medicines Tanner is on has very serious side effects of liver failure, and both medicines he's on are proven to react poorly with CBD oil. Tanner's levels have never been abnormal, but it's extremely important to keep it monitored. Since giving Tanner the new oil, we have again seen mild improvements, but feel like we are back at baseline now and definitely have our fun-loving, happy boy back! He is back to having 250-350 spasms a day, which is NOT good and we pray that the longer he's on this oil, the better it will get. But 350 is better than 850! He has started to gradually roll again, on his own and I have not seen the other seizure types he was having before, but in typical Tanner fashion, he tends to show improvements for a few days and then goes back. I'm not trying to be negative and in fact, we remain extremely positive and hopeful, but I know it can be confusing in trying to learn about Tanner's disability and how it is for him day to day and understand that for him, nothing is guaranteed. He has been seizing now for 19 months...every day...NO breaks. A lot of parents talk about their children having a honeymoon phase from seizures. Our CDKL5 kids will more than likely never be seizure free, but they can be minimal and controlled and if they are seizure free, we call it a honeymoon phase, until they come back. The honeymoon phase could last days, weeks, months or even years. But Tanner has yet to have one. As I type this blog right now, his nanny is texting me that he's upstairs having one of his other seizure types, for the first time since starting the new oil. Again, nothing is guaranteed.
I will conclude with this...Tanner's only been on the new oil for 7 days. Please pray with us that things continue to improve with his seizures as more time goes on, but watch the video below and smile because at least or boy appears to be happy again, which may be all we can ask for.