Bonni Goldstein: “A dead child is no better than a child on cannabisA dead child is no better than a child on cannabis"

Bonni Goldstein, the Los Angeles pediatrician who specializes in cannabinoid treatments, said last Wednesday in London that “it may sound brutal, but a dead child is no better than a child on cannabisa dead child is no better than a child on cannabis“. After having been in PTMC – Portugal Medical Cannabis, where she spoke about clinical practice and the use of cannabis in pediatrics, the American doctor participated in the conference Cannabis Europa, which took place last Tuesday and Wednesday in Old Billingsgate, London, United Kingdom.

Bonnie joined Hannah Deacon, mother of Alfie, who suffers from epilepsy, and who became internationally known for the fight she carried out in the UK to get her son access to CBD (cannabidiol) treatment.

“I think it is criminal and inhumane to deny a child who is already trying a range of other medications that have not helped or made her condition worse, or even made her dependent, many of these children are taking benzodiazepines, which are additives and cannot be easily removed. And yet, they're not helping her, so we're causing damage. It is necessary to leave the paradigm that botanical medicine is not part of the program!”

Bonni Goldstein during her lecture at PTMC – Portugal Medical Cannabis, in Lisbon, on the 16th of June. Photo: Renato Velasco

Asked about the practical results she has observed in her patients, Goldstein mentioned, as an example, the case of a child who said the word “mother” for the first time at age 12. “What keeps me going is the return of the families. When you have a father who sends you a video of his daughter saying 'mom' for the first time at age 12, who was told she would never walk or talk or do anything... it's a girl with a genetic disease, that when she came to my office, she was 10 years old and had more than 100 seizures per hour on her EEG (Electroencephalography), she did not smile or make eye contact, her father is a firefighter, her mother stopped working to stay at home and take care of her… never I'll forget the look of despair from the parents – 'will this help my daughter?' And she responded very well to the treatment, she started talking, she can now drink and eat on her own, play games on the iPad… Despite the genetic disease that blocked her from developing, look how much her potential has improved with medical cannabis!” Bonni Goldstein added that she has “more than 100 patients with these results” and told the case of a 4-year-old boy, also non-verbal, who visited her in her office eight years ago, with his family in tears: “I was taking a drug that had rabies as a side effect, the family was terrified, he was a terror, his mother and two grandmothers came to the office crying, and I suggested trying cannabis. Eight and a half years later, this child, who is called Gavin, wins awards at school for his good behavior, everyone likes him, he learned to speak, write and do mathematical calculation. Don't tell me cannabis is bad for the brain, seizures have gotten better, autism and other conditions too. It may not be perfect, but my God, what a change in quality of life! He takes high doses of CBD, THC, THCA and CBDA. How can we deny the results?”

“I challenge anyone to find a study on medical cannabis that doesn't say somewhere 'safe and well tolerated'”

Bonni further explained that have patientsshe has patients taking several so-called 'minor' cannabinoids in addition to CBD and THC, such as CBDA, THCA, CBG, CBDV, THCV, CBN and a few more that you certainly can't remember: “I found that the combination between them works quite well. If we think about the effect entourage and in their synergistic effect, many of the patients have an enhanced effect by combining them. CBG, for example, in about a third of patients who were non-verbal, started talking. In patients where CBD was not having the desired effect, adding a little THC or CBDA, or sometimes CBDV – which I started using recently, there is a clinical trial in Australia where five girls with Rett Syndrome, one form of autism and severe refractory epilepsy, some of these girls were having around 300 seizures a month, they started using CBDV and a 79% reduction in seizures was observed, which is huge for a child who has a lot of seizures. reading the abstract, says "safe and well tolerated". And I defy anyone to find a study on medical cannabis that doesn't say somewhere "safe and well tolerated" - it doesn't exist, I've read them all! All these studies say “safe and well tolerated” and what makes me more frustrated with other doctors is that they are clinging to dubious studies from the 70's and 80's and not the ones that are being published now. And now we have long-term data from CBD, which is showing improvements in cognition, behavior, and EEG. How can we ignore them?”

Hannah has represented the fight for patients' access to cannabis in the UK. Photo: Hannah Deacon's Instagram, here with her son, Alfie.

As the mother of a boy with epilepsy, Hannah Deacon questioned Bonni about the fact that doctors often do not listen to the parents, which led her to emigrate to the Netherlands in search of better care for her son Alfie. Bonni replied that to know what a child is like, you have to trust what your parents tell you. “When I did my internship as a pediatrician, a baby arrived and babies can't say how they feel, so we have to trust the parents. I think it's sad that doctors don't want to listen to parents and hear what they have to say. I have to rely on feedback parents for the treatment to work. I try to collaborate and I see the relationship as a partnership, I don't feel challenged or intimidated by a parent who might know more about a certain subject. The ego, we doctors, in general, have a huge ego, it's something you have to deal with, we spent our lives being told that we were smart and that's why we went to Medicine, at a certain point it affects us - I'm already seeing doctors in the audience shaking their heads (laughs) — but you have to realize that these were things we've heard all our lives and that no one has ever taught us, unless we care to learn about it. I only see a child in a small window of time, even if it is an hour, but you are with your child 24/7, you know him better than anyone. If I don't work with you… I don't need to tell you what to do… But it's really important that doctors start listening to parents, because these kids are suffering. If we can't help the most vulnerable in our society, what's the point? And I don't understand, I think this has become an existential issue, we are very little on this planet and I see children dying, earlier this year I lost seven children with stage 4 cancers, who came to me too late... could have helped, but it wasn't enough time to figure out how to help them. What's the point of holding on to these pharmaceutical paradigms when you can have the possibility to change a child's quality of life and improve their existence with a plant? I don’t understand, we have to work with the parents!”

“I think it's sad that doctors don't want to listen to parents. I have to rely on the parents' report for the treatment to work. I try to collaborate and I see the relationship as a partnership, I don't feel challenged or intimidated by a parent who might know more about a certain subject.”

Bonni Goldstein left some advice for parents, suggesting that they look up studies and clinical trials on PubMed and leave them to their doctors in a non-challenging way so they can read them calmly.

Goldstein ended his speech by confessing “this may sound brutal, but it has to be said: a dead child is no better than a child using cannabis. This is not acceptable!”, moving Hannah Deacon and some mothers in the audience.

Hanna Deacon thanked her, in tears: “I just want to say thank you, because I've been there before, and that's why I moved to Holland, because I didn't want to bury my son and now he's been seizure free for over two years. . It was thanks to people like Bonni and Professor Mike Barnes, who taught me, supported and put my son well… I can only say thank you, because without people like you we wouldn't be where we are today, so thank you so much for your time and for having coming here today!”

Video of the live broadcast can be seen on Cannareporter's Instagram.