A colleague wrote an inquiry yesterday. This by itself is quite rare and much appreciated.
To paraphrase: “ A child you have treated with medical cannabis with some success is doing poorly now. I wish to start using stimulants and antipsychotics. Is there any contraindication to adding these medications to the cannabis? I know very little about cannabis.”
Here’s a paraphrase of what I replied, interpolated with reflections of the very nature of such a communication.
- “ I am most pleased to receive this inquiry and I salute your interest in this treatment.”
Practically none of my colleagues in child psychiatry – or neurology for that matter – have expressed any interest whatsoever in the ameliorating effects of medical cannabis with autisic children. For that reason I have close to 700 children under my care.
Nor did physicians initiate the treatment. Two mothers, Abigail Dar and Sharon Imberman, noticed that when their autistic children received high CBD cannabis oil for epilepsy, the autism improved. They dragged the treating neurologist into a treatment “research” which at first meant that the only way your child could receive cannabis was if they agreed to take part in the research. At the time, several years back, I immediately commented on the questionable ethics of this procedure, especially since the “research” involved receiving either placebo or cannabis for 3 months, washing out for three months, the receiving the alternative. If a child improved with cannabis, he was committed to be off cannabis for 6 months for the sake of the “research.” One can imagine how many parents felt about this, and not a few left the study. The study was impaired because the erstwhile researcher chose to give all the children a standard dose of a particular oil which the mothers felt was not as good as other oils on the market. They left the “research” – and came in desperation to me, in Beer Sheba, because they could not find anyone else interested. The “study” succeeded – i.e. it got prestigious publication because it was designed as the holy grail “randomized double blind control” [ you just have to believe that one cannot tell the difference between cannabis oil and placebo]. The “study” paid no attention to different strains of cannabis. We got off to a problematic start.
What is worse, the State of Israel sponsors a medical supervision program for the special educational programs for autistic children. As best I know, none of such physicians, all of whom take salaries to supervise the medical aspects of the function of these children, have taken any interest in treatment with cannabis. Still worse, I have had several experiences where such physicians have spoken to the schools “against” treatment with cannabis, creating pressure on parents to return to medications.
And still worse, systems like Alut and Aleh (if you’ve flown ELAL you have contributed small change to them) pay physicians to oversee the medical treatment of autistic children and adults in residential treatment. NOT ONE has expressed any interest in cannabis. The residences are forced to seek parallel consultation, usually not medical, about the cannabis aspect of treatment. I for example “consult” about cannabis to such a residence in Beer Sheba. I suggested it would be better if I just train the physician about my experience with cannabis. No response. I then suggested I would provide free training for the physicians in the system and backup consultation. Absolutely no response.
See why I was so gratified that after doing this for three years, one colleague expressed interest?
2. “I have to inform you that many of our autistic children are suffering from a lack of continuity of care, have no access to the strains that were proven helpful, and are again doing less well.”
When IMCA announced it was going ahead with its “Reform” just a year ago, I made an unusual media appearance pleading that the reform not apply to children with autism and epilepsy because it would interrupt continuity of care – access to the strains proven helpful. Of course I got no official response, but the next day all such children were exempted from the reform and their licenses were automatically extended, in several stages, for a year, without any medical input. Parents thought, a year to breathe.
But the IMCA Director, now infamous Magister Yuval “Reform” Landschaft, had other plans. The licenses were stable. But ALL of the proven oils were gradually altered or put out of commission. By this July 1st practically none of the autistic and epileptic children were receiving the oils that had proven effective. Autisitc children reverted to head banging, epileptic children convulsed after having been free of symptoms for two or three years. Landschaft forced the firms that grew and produced the most proven oils to hand over production to another company, whose mode of extraction was different and remains a trade secret. The results are oils with perhaps the same concentrations of THC and CBD, but with entirely different entourage effect of the hundreds of other molecules that characterize each strain. Landschaft had decided there were no strains, just THC and CBD, and even told this blatant lie to our august but ineffective high court.
I now speak with growers weekly, they change hands about quarterly, there is no commitment to continuity of care. It is expensive to make the oils, new CEOs need to attract investors, not to care for marginal children. I do not know from week to week what to suggest to parents. And yesterday one of the leading producers, Tikun Olam (with a new CEO) announced that their leading oils would return soon but with a price tag tripled (close to $200 for each 10 gram bottle – most kids need at least 2 or 3, some 5 or 6).
3. We physicians are in an embarrassing position. Parents will say, “But such and such oil was better than medications.” What can we reply? “How in Heaven’s name can the State of Israel allow our children to be denied access to proven relief?” Reply? “We want to wait to get back to the strain of cannabis that helped much more than medications and with far fewer side effects.” Reply?
Every physician swears not to withhold effective treatment from any patient. Reminder, this oath is older than drug companies. By two and a half millennia. The physician to whom I respond knows this. She does not know what to say? Has she taken any part in trying to support the treatment? I suspect so, quietly. With what conscience will she return a child to psychotropic drugs that were never intended for autism and never really succeeded. Can she say that it is temporary, until cannabis returns? Can herignorance of cannabis enter into meaningful discourse with a parent’s experience with a substance that relieved suffering far better than drugs?
4. I can assure you that I have not experienced negative interactions between cannabis and medications
About half of the children who started cannabis were already taking medications. I almost always continued medications until we saw a good cannabis effect, then gradually withdrew the drugs. I had never seen negative interactions. I would estimate 80% were able to stop all drugs after gaining a good effect from cannabis. How sad to be going in reverse!
A result of the lockdown, I found myself with time and with enough remote communicating to create these videos. They have attracted almost no attention in Israel and I assume no physicians have had any interest. Perhaps I have found “the singular one” who is my audience?
While writing this entry, I received a response which I take the liberty to quote:
“I am so sorry to hear about this. In the case of your patient it really was significant for the child and his family. I assume there are hundreds like him. This is important information. I will share it and watch it myself.”
Hope springs eternal.