After a series of medical errors and 80 daily seizures, how Cannabis saved the life of little Guilherme
Eight-year-old Guilherme from Espírito Santo saw his life and his family's change with medicinal Cannabis. His seizures ceased, his cognition improved, and today, the boy attends school, which was not possible before.
Caroline Vaz (text) / Charles Vilela (editing)
The story of Guilherme, an 8-year-old from Espírito Santo, is somewhat different from others. He was born healthy, without any illness or complications, but everything changed when he was just 7 months old. With a throat infection, a doctor prescribed Guilherme azithromycin, but, being too strong for a baby under 1 year old, he developed stomatitis in his mouth, which caused facial paralysis, the first problem in a series of complications that would follow.
With the facial paralysis, Mirian Coelho Leite de Oliveira, the boy's mother, decided to take him to the emergency room in their city, Cariacica. “The doctor thought it was nothing serious and discharged him. During the night, I woke up to find him having a febrile seizure,” Mirian recalls, noting that she quickly rushed to the emergency room with her son. Upon arrival, she was surprised by the lack of beds in the ICU, and after waiting 2 days in the hospital for a spot, the boy contracted viral meningitis which, after reaching the brain, triggered cerebral paralysis. Due to the severity of these conditions, Guilherme had to use a feeding tube, which ultimately led to a urinary infection that caused a stroke due to neurogenic shock. From then on, the family's fight for effective and accessible treatment began.
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The mother explains that due to these events, Guilherme became a neuropathic child with difficult-to-control epilepsy. When he was discharged from the hospital, already 1 year old, the boy was on a long list of medications that caused severe side effects, resulting in the need for more medications. “Psychoactive medications cause gastritis, reflux, asthma attacks, and he had a lot of secretions,” Mirian shares.
The discovery of medicinal cannabis
Due to the side effects caused by the medications - and also because they did not achieve the desired results - Mirian decided to seek an alternative that is gaining more and more attention from mothers and patients: the medicinal use of cannabis. Through a group on a social network with patients suffering from cerebral paralysis, Mirian began to learn about the benefits of the oil for the condition.
In 2018, when Guilherme was hospitalized with a severe asthma attack, the boy's mother decided to ask the doctor about cannabis. “He said he was aware of the benefits but did not prescribe (cannabis-based medications). So he gave me the contact of a pediatric neurologist who is a prescriber. I scheduled an appointment with her through the public health system, explained Guilherme's situation, that he had already tried every medication, and she agreed to let us do a test (with medicinal cannabis),” Mirian explains.
The start of treatment with the oil: victories and obstacles
By 2019, with the prescription in hand, Mirian faced a new obstacle: the price of cannabis oil. “Searching online, I found the BeHem Foundation. I started a protocol with them that began to be effective for Guilherme. Gradually, the seizures decreased, bruxism improved, reflux and gastritis got better, all within 15 days. I spoke with his neurologist, and we started to eliminate medications; the last one he was using caused a lot of secretions, so we gradually reduced it, and today I only maintain the cannabis oil.”
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Due to the family's financial limitations, Mirian managed to access the imported medication at a low cost, but still struggles to pay for the treatment. Guilherme's mother shares that she went to court, requesting that the Health Department of Espírito Santo cover the treatment costs, but her request was denied. In June 2020, Mirian filed a lawsuit in Federal Court, and her request was accepted. The deadline to receive the product is by next week.
The transformation with medicinal cannabis
Besides the conventional medications not completely resolving the issues Guilherme faced, they also caused a series of side effects that needed to be managed with more medications. “My son lived in the emergency room, taking antibiotics every month. Since 2019, when I started using the oil, I haven't had to take him to the emergency room again. He constantly had pneumonia, asthma attacks, but it has been almost two years since he has used any antibiotics,” says the boy's mother.
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She also shares that before starting treatment with cannabis, Guilherme had 60 to 80 seizures per day. “Today it is very rare for him to have a seizure; the last one was last year because I had to reduce the drops to save the oil, as sometimes it becomes difficult for us to maintain (the cost of the medication).”
In addition to her son's physical improvements, Mirian notes that Guilherme's cognition has shown great progress as he can now differentiate colors, interact with family, and understand “yes” and “no.” “Today he goes to school, to the park, to the beach, which he couldn't do before due to the seizures. Before, we went from home to the hospital, from the hospital back home, but now he is an active child, understands things. Today our quality of life is wonderful,” the mother reports.
Today, Mirian is part of APAE (Association of Parents and Friends of Exceptional Individuals) and shares that one of her goals is to help other mothers by spreading knowledge about cannabis to eliminate fear and prejudice surrounding the plant. Additionally, Guilherme's mother enthusiastically discusses the creation of the first association in Espírito Santo, ACAMC. “The new association will be very important for our state because we have children with very serious illnesses here who need this medication, and we need a more accessible way to obtain it,” she asserts.