The imagery is heart-wrenching. A child at rest, suddenly shocked awake by full body convulsions; white as a ghost, eyes full of fear, overtaken from the inside out in what looks and reportedly feels like an electrical storm of the brain. Thus is the lot of of hundreds of children living in Israel today with refractory (drug resistant) epilepsy. Their parent sits alongside, ragged from lack of sleep and constant vigilance for seizures that could strike anytime and anywhere with nothing more to offer than their mere presence… until recently.
Meet Elaad Teuerstein and Sharon Imberman. Both are parents of children with refractory epilepsy, a disorder that causes an onslaught of seizures, in some cases, upwards of 100 a day. “We’re lucky,” says Elaad, “Yonatan’s seizures only last about 30 seconds, but of course there are some times when it’s worse and he can have 30, 40, 50 seizures a day for weeks on end. You never know when it’s coming… you always have to be within reach.” Sharon’s son, Bar, has a different story, “My son is autistic. His seizures are much worse… they are life-threatening… so we live in a horrifying situation where we have no day, no night. My son has slept with me, in my bed for the last 10 years, so I could get some sleep. And I’m not alone. We have 150 parents in our group – the stories are horrifying.”
These are only two stories, not altogether unusual in the epilepsy community. What separates these parents is that they have found a treatment option that finally offers some relief and a strong dose of hope, and founded a group called Tohar Lev, (Pure Heart), a non-profit organization that is committed to the health, quality of life and future of children with refractory epilepsy. The most effective tool in their treatment arsenal? Medical Cannabis.
“Ever since we started treating with cannabis two years ago – my son Bar has had tremendous improvement in the length and frequency of his seizures. Cannabis doesn’t cure epilepsy, but it allows for longer periods of quiet and when the seizures come, they are shorter and easier to handle. Although my son is autistic, he knows that cannabis helps him, so he is a little bit calmer. “What is really amazing is that for the last 18 months, we’ve been treating with cannabis inhalation (in addition to CBD oils); it helps stop the seizure immediately. It gives you the feeling that everything is going to be okay in seconds….and since we began this protocol, we haven’t had to go to the hospital once.” Regarding protocols and obstacles to access of cannabis medicine, Sharon answers candidly: “There were no obstacles because there were no protocols… we started the protocol and were the first to participate. The clinical trials that we have to date here in Israel are based on the actual experiences of children in our community. We fought for this. The next steps for us are trying new strains of cannabis that will improve the results further. We are currently raising money to fund the required research.”
Please visit Tohar Lev for more information about epilepsy and how to get involved.