Medical doctors, do not fear cannabis
''My message for the medical doctors would be not to fear the unknown, but to connect with experts and medical doctors from abroad, which already have experiences with treatments with natural cannabis.''
When I was reading online about this serious disease our lives turned upside down. Uncontrollable seizures and statuses that can lead to permanent damage, loss of speech, walking, large cognitive delay and even death. Despite the prevention of potential triggers of attacks that are characteristic of this syndrome like flashing light, temperature, physical activity ... we did not have the attacks under control. On top of the helplessness with not being able to control the seizures I started feeling angry.
Meeting with parents who were in the same situation gave me hope that perhaps there is nevertheless a more or less happy outcome from the bad situation. My husband and I started looking for alternative treatments from homeopathy to bioenergy and finally we found one drug which was hugely promising in Dravet's syndrome - cannabis. We encountered a problem, how to get to the appropriate preparations. Since April 2014, when we started therapy with cannabis from Canada until now, when have tested four natural hemp product from the USA. We are looking for the right CBD / THC following experiences of parents with children who are involved in various forums, particularly in the US. Transporting cannabis to Slovenia, even if it is for medical purposes and for a known patient, was a real feat until this spring. Medical doctors, even those who are otherwise supporting the treatment with cannabis, did not dare to write a recommendation, which could help in the event of a customs inspection. The state institutions, which should be helping small patients gain access to new medicines viewed cannabis from a completely different angle - with the fear of a general legalization and especially addiction of the youth.
Prof. dr. David Neubauer from the Pediatric clinic was one of rare doctors, who was willing to listen and was prepared to consider the introduction of such therapies, and started the procedure for obtaining official permits. In doing so, he was faced with disagreement within the medical profession, as a result of the lack of knowledge in this field as well as the fear of public reaction, so it was not easy for him. Last year he carried out a study with the synthetic CBD, which has proved to be suitable only for certain types of epilepsy. It has been shown that, in other cases, including our, there was a need for other cannabinoids besides CBD to improve the control of seizures and cognitive development. This means preparations from natural hemp/cannabis. We consult prof. dr. Neubauer about any new products from hemp, the import options and potential interactions with antiepileptic medications.
After years of searching and testing, we have found a cannabis oil that helps. But we have to use it as an add on medication with the officially-prescribed medicine because the ethics committee did not approve the giving up of prescribed medication. More than two years ago the ethics committee in fact gave an approval only for the use of pure CBD. At that time we were happy with the answer but were not aware of the restrictions it brought. For the gradual reduction of classic antiepileptic medications with the simultaneous therapy with cannabis, we would need, in addition to the approval of the ethics committee, the support of laboratories to measure the concentration of medications in the body. Consideration should be given to the fact the reaction of patients to increasing doses of cannabinoids as well as classic antiepileptic medications are different which may lead to toxicity and more seizures when the classic antiepileptic medications are being reduced.
My advice to parents in similar situations would be, to contact other parents, to enroll in diverse forum, where they can ask for advice and share experiences. This gives them an opportunity to learn about the effects and mode of action of cannabis. They see that there is hope, even if total control of the seizures is not possible, cognitive development of a child can also be a major success. In this way there are also actively engaged in the treatment and the parents no longer feel so helpless.
My message for the medical doctors would be not to fear the unknown, but to connect with experts and medical doctors from abroad, which already have experiences with treatments with natural cannabis.
Considering my experiences and knowledge gathered during this time I do think that treatment with natural cannabis should also be possible as first choice.