Monday, August 1, 2016

Waiting For Charlotte's Web Oil

Charlotte's Web Cannabis oil, which has helped countless children with intractable (not controlled with medicine) epilepsy, is due to be delivered tomorrow.  Our neurologist said sometimes results are misleading because parents are so excited to try it, they report better seizure control with CBD oil than may be true.  So I thought I would document exactly what's been going on with Levi before we start Charlotte's Web.

As I told the doctor, the ketogenic diet was the only thing that worked at all in regards to seizure control for Levi.  Traditional medicine either made the seizures worse, or had such a sedating effect that he slept all the time.  The ketogenic diet took his seizures from 200-300 a day, down to a handful a day, over the course of three years.

Though the high fat: low carb/protein diet was hard on Levi's system, it was a miracle for Levi, and I would suggest it to anyone dealing with intractable epilepsy.

I estimate that Levi was having 5-10 seizures on a normal day, and the past few weeks, that amount has gone up to around 20.  He's had a fever, so that may have something to do with the increase.  As today is hopefully the day before he starts Charlotte's Web, I decided to count seizures and get an accurate picture.  Of course, every day is different, and this will be just a snapshot of one day, but at least it will give us a good idea of his true seizure activity.

He's been awake for three hours, and has already had 5 seizures, one of which was very hard, and he fell asleep after it was over.  These are rare for him, but apparently, they still happen.  The others are his normal 3-5 second jumps, jerks, etc.

Before the seizure, he was awake, alert, and happy.  Now, even though he slept for a little while, he is tired and his breathing is a bit labored.

We are looking forward to the delivery of the cannabis oil tomorrow, and plan to start it immediately upon arrival.  Please pray for Levi.

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