Thursday, May 28, 2015

CBD Update - Four Week Visit

Four Week Visit to Children's Hospital 

Levels and Side Effects: Current blood and urine levels looked great. There have been zero drug interactions at this point which can be seen in the analysis of the blood and urine. They are also looking for any other adverse things she might be experiencing.  The doctors said the most prevalent side effect thus far in patients has been diarrhea. Luckily Carly has not had any adverse reactions, knock on wood.

Dose: This visit Carly's dose was stepped up again. They are slowly raising the dose until she reaches her max level. At that point we will start looking into slowly taking away an AED depending if CBD seems to be working as it is now.

Myoclonic Jerks: When Carly started CBD Oil, the Myoclonic jerks went away totally. Currently they seem to creep back up when she is getting to the end of a two week visit. They upped her does and close to the two week mark before upping the dose again, the seizures tend to show back up. However, we are talking in the teens not the 200-300 range she was suffering pre-CBD. This is no real concern because we have days in which we see zero myoclonic jerks. So far, she hasn't suffered any Tonic Clonic seizures which are the nasty ones!

Alertness: Carly is still more alert and focusing on things better. She is tracking items easier as we move them in front of her face and with smoother pursuit.

Doctors have mentioned during discussion CBD Oil is not working for all patients in the study. This should come as no surprise. We all know it's not going to, nor is it promised, to continue to work even if it works early on in treatment. I've also heard from parents their child's seizures got worse before they got better.

Until next time...

God Strong.



  1. Hang in there! Carly is a warrior!!!

  2. You are in our prayers and hearts for multiplied Grace in this time 💜