Wednesday, August 5, 2015
I wanted to give a quick update on Carly. Last doctors visit Carly's dose of CBD was raised to 20mg per kg. At this dose she started having very bad Diarrhea. Not only was the diarrhea bad her myoclonic jerks seemed to get worse. As I have talked about before, her myoclonic jerks have been decreasing ever since she has started taking CBD. However, the past two weeks we saw a rise in these type of seizures. Not an increase back to the 200-300 mark, but an increase from 2-3 jerks per day to 10-12 per day. This may not seem like a huge increase but the closer we are to zero the better.
Since the diarrhea was becoming an issue and the jerks raised in number, the decision was made to lower her dose back down to 15mg per kg. Her diarrhea has ceased AND her myoclonic jerks have gone back down in number. Strange indeed, but that is how AED's sometimes work. The lower the dose the more control.
I've heard from more than one person how engaged Carly seems to be, not only in pictures and video but in person. I contribute this to the lessening of seizure activity and the cognitive ability improvement she has experienced. It is amazing seeing the improvements in this arena.
Like I have stated before and I want to state again, CBD Oil is not working for every child or adult. I have heard of other success stories and some with no success. From what I have heard in the Carly's Law study, 1/3 has seen improvement, 1/3 has seen no change and 1/3 has seen symptoms get worse.
We are very fortunate that Carly has seen improvement and we know it can change in an instant and we pray daily others will see positive results as well.