The pipe dream

>> Tuesday, January 27, 2015

Bug may never be seizure-free, we know this, we accept this and it breaks my heart but it is what it is. We knew that going into the Epidiolex study we may not see a huge response, we also knew that we had to try. He was doing well, went seizure-free for a week and then we upped his dose. Seizures came back, and I was the only one that wanted to hold at the lower dose. So, we kept going up. He went seizure free again for week, and I posted about it. As soon as I did...bam. Several seizures. It always happens.

He hasn't been seizure-free for longer than 36 hours since. BUT his seizures are fewer now, and getting shorter and less involved. So, as we thought, it seems as he is replacing damaged cells with healthier cells, he may get better slowly.  He is more aware and we (Taylor and myself) heard him say something. Neither one of us could actually say what it was but it was clear formed sounds. He is sleeping better, and having better bowel issues. He still is wandering if you don't hold on to him and is hit or miss with following simple directions, although more hit than miss.

But, what would you do if you knew this:

Epidiolex is 100mg per 1ml.

Charlottes Web Hemp Oil (CWHO) is 50mg per 1ml

The average therapeutic dose for CWHO is 1.5 - 2.0ml twice a day. Or 150 to 200mg a day.

Bug was seizure-free on 1.5ml 2x daily of Epidiolex. Or 300mg a day.

He is now on 600mg a day.

What would you do?


Post a Comment

What a Seizure looks like (Graphic Content Included)



Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

  © Blogger template Simple n' Sweet by 2009

Back to TOP