The story of Bauti, a boy from Bahia who fights pain with medical cannabis

Silvina Juárez / Special for “New”

Bautista Yesari is 10 years old and has a contagious smile. Impossible to stop in his eyes and not to feel the purity of his gaze. He is a child full of life, feelings, eager to express himself and to tell, in his own way, what is happening to him.

However, his connection to the world is minimal. Bauti was born with cerebral palsy.

A few days ago her mother Roxana Presti was interviewed on the radio show By word, by CNN Radio Bahía Blanca, in which he recounted the important advances of his son thanks to the treatment with medical cannabis.

“Bauti was born with chronic non-progressive encephalopathy, what we commonly call cerebral palsy. But that diagnosis, those two words, involve other disorders such as hypertonia, quadriparesis, spasticity, delayed maturation, cortical blindness and epilepsy, among others, ”said Roxana.

Those two words, as Roxana puts it, mean Bautista will be in a wheelchair for life. He will not be able to speak or eat like most children. You won’t be able to hold your head up or go to school. And what distresses her family the most is that this painting also hurts her.

Of course, there is hope.

After visiting the offices of several specialists and carrying out all kinds of inter-consultations, a little over a year ago, Bautista began to receive specific treatment with medical cannabis. Dr Marisol Bocetti, pain specialist with a postgraduate degree in endocannabinology, assures us that progress has already started to be reflected not only in Bautista, but also in other patients with similar pathologies.

One situation that Roxana evokes, in the intra-family sphere for example, is connection.

“With cannabis oil, we notice its interaction with the outside world. We realize that he understands us, by his gaze, or by his gestures. But since Bauti does not speak, it is very difficult. He just says “yes”, “no” and “mom”. He also lowers his head when he doesn’t like something and laughs when he’s amused by a sound.

“Since he started using cannabis, few connections have been added. Only we, as a family, can notice them. They are progressive, but very important, like holding the gaze. Let a son look at you, transcend everything ”.

In terms of physical benefits, cannabis oil and drops have helped Bautista reduce symptoms of spasticity. “He has muscle stiffness, which causes him pain. He builds a lot of strength in the lower and upper limbs, but he is hypotonic in the head and neck area, so he cannot lift his head well or sit up on his own.

In this type of pathology, advances are tiny, very slow. Sporadic. Sometimes there are advances. And sometimes setbacks.

Due to this motor difficulty, Bautista cannot play. But she began to connect in situations that baffled her parents. “We were very surprised when we saw that he was ahead of the story, when we told him a story that he already knew. He does it with his babbling, with sounds, but he goes ahead ”.

This connection, which may seem small to many people, is immeasurable to Bautista’s family. It is no more and no less than knowing that he is here.

“All the time, we are waiting for a response. Know that he understands us. As a mom, that’s what touches me the most. Not knowing what you are feeling, what is hurting you, or if there is something that is bothering you. Therefore, this minimal manifestation shows us that he is with us. When he managed to answer ‘yes’ or ‘no’, for us it was huge ”.

Regarding cannabis consumption, Roxana assures us that it is often associated with a drug, due to the bad information that circulates. And dealing with this stigma is usually one more hurdle to overcome.

“They are fighting to ensure that it is not classified as a hard drug. Cannabis is a medicine. She is treated by specialist doctors. In many patients, the goal is often to relieve the pain, but people who do not have any disease do not understand it ”.

The life of Bautista, his mother Roxana, his father Mauricio and his brother Joaquín, is a life of growth and adaptation. But above all, it’s a life of love.

“We go through different phases: anger, sadness, guilt, helplessness, frustration. It has been nine years since, as a family, we have had to go through many adaptations. But love gives strength. There comes a time when you stop asking me why, and you decide to be happy with what you have ”.

Photo: iaca.com.ar

The professional look of Marisol Bocetti

Marisol Bocetti is pain specialist, holder of a postgraduate diploma in therapeutic treatments with cannabis, member of AAED (Argentine Association for the Study of Pain), member of GADA (Grupo Alivio del Dolor Argentina), doctor of the CMBB Commission of health and Procant.

– What is the reality in Argentina of medical cannabis treatments?

“For several years, in our country, laws have been presented to Congress and the Senate to regulate medical cannabis. Fortunately, we have made progress and today, in Argentina, work continues in this direction.

– Is there a drug approved by the ANMAT, is this the solution?

—You can buy Convupidiol at a drugstore, which is the ANMAT approved drug with a high CBD content, which is one of the cannabinoid components, and which is widely used in intractable epilepsy, for example. However, there is another cannabinoid component, which is THC and is not present in this drug. They are not the same. Each plant differs by having a different characteristic from the other. The same oil is not used for cancer patients, for example, as it is for those with pain or epilepsy. This is why it is important that there is variety.

—How do I know if it is good quality cannabis oil or drops?

—To know the characteristics of each type of cannabis, it is necessary to carry out a measurement. In Bahía Blanca there is an official stand of Conicet and the Ministry of Health, located at the INIBIBB Institute (Bahía Blanca Biochemical Research Institute), where you can discover the quality of the oil.

– What happens to the oils sold by social networks?

– People must not consume this kind of oil. They are not of good quality and they do not own what they say. The price of cannabis is not affordable. For example, Convupidiol costs around 58,000 pesos, speaking of a 30mm dropper, which takes more or less a month of treatment. Often it is not recognized by social works. And that is causing people to turn to cheap options that are not of high quality.

“What’s going on in Bahia?

—In Bahia, we approved an ordinance to form an advisory council, in the municipality of Bahía Blanca, with several representatives of the Ministry of Health, INTA, CONICET, Universidad del Sur, INaSe (National Seed Institute) and the Cannabis Association Medicinal and Culture. It’s very encouraging, but we have to keep working on it.

“I am a family doctor.” How did you get involved in medical cannabis research?

—Thanks to a patient who had been treated for psoriasis, with extensive skin lesions and who showed no improvement. On one occasion, from one consultation to another, I saw that he had undergone a great evolution, which did not coincide with the one that had developed in his skin. But he didn’t want to tell me what he was doing, he was ashamed, even though I am extremely respectful of the patient’s decisions with his body. When it finally brightened up, I was puzzled and thought to myself: I have to investigate this. Since then, together with Susana Pascuaré and her team, we have been researching the properties of cannabis.

Can cannabis be administered without medical supervision?

– The sick must be accompanied. It’s not just about taking the cannabis and voila. There should be a professional to guide you, help you dose the medication, and find the best variant for your condition.

– Is the My Argentina platform useful?

– That’s one way to make it visible. The national registry has been created, which is linked to the My Argentina platform. Once registered, by providing all the necessary documents, you have access to a unique and national certificate that allows you to cultivate. In the event of a break-in, for example, the patient can show and verify his reality and is not penalized. Anyway, I think there is a need for some revisions as there have been cases of duplicate data.

– What has been the role of mothers of affected children in today’s achievements?

“They were the first to lead this fight. They didn’t mind being underground to grow cannabis, as long as their children got better. Many ended up in prison, but they did not stop fighting. From this love comes the knowledge of this drug which helps not only children with epilepsy but also many other pathologies. Cannabis must stop being classified as a hard drug.

—Why is use in children important?

“Because it improves their lives. There are children who are in great pain or have repeated epilepsy episodes. It affects patients and their families. We are talking about children and families who cannot even sleep normally. And drugs have their limits. With cannabis, we’ve seen motor improvements in children who couldn’t walk or move, and who do now. In others, communication has improved. They couldn’t talk, they were just babbling, and now they’re calling out his name. We know that in the face of such serious pathologies, traditional medicines often do not provide solutions. Cannabis is touted as a solution for these patients and their families to lead healthier lives. Experiencing simple things that are impossible for them, like sleeping, attending social events, having lunch together, spending time in a square …