River “Ducky” Barclay’s father, John Barclay, remembers the exact date that his daughter was diagnosed with Batten disease—Nov. 16, 2017. And he remembers when she first had a seizure, on St. Patrick’s Day, after eating junk food for dinner and complaining of a headache. It’s not surprising that he remembers these dates, considering that River’s diagnosis of Batten disease changed the course of his life.
At first, River was just complaining of headaches and having vision issues. Her eyes were crossing, and John initially thought his daughter simply needed glasses. Soon, she began having seizures, and John was faced with finding a way to treat his daughter.
River began experiencing frequent seizures that required a lot of medication. She was having small seizures, drop seizures and at times, John observed her having about 300 seizures a day. There were times when she seemed to stop and would almost catch herself seizing, and other times when she would jump or launch herself into the air and would need to be caught and protected from hurting herself. All of this meant she had to be heavily medicated.
“There was definitely this sense of taking her spirit,” John explained about the effects of the medications. “The two medicines she was on also took her speech; she stopped swallowing; she stopped doing everything. She was holding her saliva, and I couldn’t get her to go to school or to do anything; she was on the couch all the time. It was just horrific.”
“She started doing so much better, and we thought this is literally liquid gold.”
Finally, River was taken off the medication and given cannabidiol (CBD). Her family learned about CBD from a doctor who discreetly passed on the knowledge that it was something they could try. And now, despite suffering from a degenerative neurological disorder that is destroying irreplaceable brain cells, she is experiencing fewer seizures. As residents of Washington State, it was easier for Barclay to get his hands on medical cannabis than it would have been in other states.
“Michelle, my ex, was an asset manager and worked with a medical marijuana dispensary,” he explained. “They had this CBD tincture, and I thought, ‘It can’t hurt.’ There were supposed to be two milligrams [of CBD] for every 10 drops, which of course is still inaccurate, but she tried it, and we started to see results.”
Soon, they began getting more tinctures and trying higher amounts of CBD with River. Although it did not restore their daughter’s health to her previous state before her brain cells were damaged, she could now do things without having to be held or restrained for fear of constant seizing.
“She started doing so much better, and we thought this is literally liquid gold,” he explained. “But we still had to keep upping her dose because her condition is so bad. Right now, we’re on about 260 milligrams per day, and she just goes through so much CBD.”
“It was getting so expensive, but it didn’t matter that we were spending $1,000 a month on CBD, because it was helping,” John added. “But then I realized I could grow it too, so I started doing that.”
Batten disease is a specifically tragic condition, one that easily makes parents feel hopeless and lost. But John has a message for parents of children with this disease, or other parents with children who are suffering who want to try CBD, “Don’t give up.”
“If there aren’t any results, don’t give up; try another kind of CBD,” he said. “It’s like a headache. You know, if you take a Tylenol for the wrong kind of headache, or aspirin for the wrong kind of pain, you switch and take another medication. It’s the same thing with CBD, for cannabis. Give it a shot; test it a little bit; record the results. Then you can keep track of what actually worked. We started small at first, but when we gave her more, we saw better results. If I didn’t see anything after so much time, I gave up and went on to the next thing. And share the knowledge, because what didn’t work for you could work for someone else.”
River is getting help and relief from CBD, and for John and the other people who love her, that makes all the difference.