Thank you for your kind thoughts. Koa is not in the news. We live in a little Podunk town in Washington. My husband is a minister. We have four children, Koa is number 3. I homeschool the other 3 kids. None have been immunized. We live in the country and raise sheep and goats, and love gardening.
Koa was born normal and was an active, intelligent kiddo until his seizures started at 2. He had one gm every two weeks for awhile. When he had two in a day, I decided to follow the neurologist and start him on pharmaceuticals. 6 months later, with 6 different meds tried, we left conventional medicine. He was now having 8 different kinds of seizures and literally hundreds a day. He had stopped walking, talking or feeding himself.
Up until last year, he slowly progressed. He started making choices and was tested as a 32 mo old when he was 8. He was on his own seizure cycle of about twelve days. He start calm with no seizures then progress to a frantic zoomy high. Then he would crash into NCSE for a couple days, often with tonic seizures or absence. Last fall this all started getting worse. He has always been worse in the winter then the summer, but when spring came he didn't get better. His NCSE days grew from 1-2 days to 5-6. His speech deteriorated as well as him losing his potty training.
This summer I took him to the Seattle children's hospital for testing. They are awesome people! All ye tests came back like previous ones. There is nothing physically wrong with Koa, not in his brain, his blood, his genes, or his gi tract. They want to try starting him on lamotrigine again, the drug that brought us two horrific new seizures when he was two. Then I found out marijuana.
I started him in October. He immediately started sleeping better, talking more and making eye contact. Quickly he perked up and made his presence known as a huge two yr old getting into mischief! We started him on chocolates made from Harliquin at one mg a day. He's now on a glycerin tincture of the same strain, taking 8 mg a day. The seizures hav been maybe 25% better. The most noticeable thing is that he is always getting worse because of winter now, BUT he's not, he's improving.
The improvements are not enough and we are running into problems with increasing more cause of the THC being too high. This weekend I've heard about the cbd:THC ratio and the importance of that and that the two strains currently available with a good ratio are sour tsunami and ac/dc. The ratio of what he's taking is 2:1. The ratio of those are about 20:1.
Thank you all .
eace2:
