“We can define autism as a Neurodevelopmental disorder”, which generates a change in social interaction as well as the environment, in addition to the two verbal and non-verbal communication issues, and behavior that’s sometimes very restricted and usually repetitive.
Parents usually demonstrate these attributes from the first two years of life, although it always depends upon the amount of involvement, which can be mild in some instances, or quite severe in others.
This variability in the degree of participation and other characteristics that we will remark on has established the concept of ASD, that encompasses 3 types of disorders with differentiable attributes, although sometimes the diagnosis is very difficult, almost constantly complicated by the degree of involvement or its relationship with different pathologies like refractory epilepsy.
TEA, consequently, includes autism itself, Asperger’s syndrome, and generalized developmental disorder not defined (TGD-NE).
In the event of autism proper, we found delays in cognitive development, also in Asperger’s syndrome, there are not even enough cases described in which the individual presents cognitive functioning over the average and a number of cases of individuals talented for some mental skills.
The source of this disorder is not exactly understood, there are various theories, even though we can say that there is a proven genetic predisposition. It has been related to this so-called fragile X chromosome syndrome, however, we don’t know if other chromosomal alterations could also be a cause of contributing to this pathology.
Other causes described are the MMR vaccine, the intake of acetaminophen, food, and environmental elements, celiac disease.
Neurotransmitters like dopamine, serotonin, tryptophan, and oxytocin may also be involved.
We know that the Endocannabinoid System (SEC) is involved with the regulation of these altered processes in these disorders, and therefore we could think that phytocannabinoids (cannabinoids extracted from the plant) could help us improve the symptoms that these patients present.
To get a concept about exactly what the daily life of an autistic child as well as the people around him represents, we will describe the behavioral and empathetic traits of the little ones.
They shy away from physical contact, eye contact is short or not maintained, they do not respond to their parents’ facial expressions, so they do not point to events or objects to require attention, they do not look at things that parents point to, they don’t adequately express feelings facially, do not show any concern for other people, normally do not make friends, or don’t have any interest in making them.
Normally they do not say single words at 16 months, they don’t point things out or items they may want, nor do they discuss with others, they generally repeat what others say, without understanding their meaning or understanding the significance, they don’t usually respond to their title, but occasionally they respond to other sounds, it appears they don’t wish to communicate.
Oftentimes, we find repetitive motions, which can be performed together with all the head, arms, hands, thumb sucking.
You also need to refer to this frustration that they suffer because they can’t transmit feelings and express them, in many cases, there’s absolutely no verbal language, but they probably want to communicate imagine living like this.
A number of these children or teens, whenever there is intense involvement, exhibit aggressive and unstable behaviors, together with self-harm in many cases creating a significant problem to include patients, in many cases resorting to neuroleptics or benzodiazepines to fix the behavioral issue. .
Prospects for phytocannabinoid usage
As we mentioned before, the SEC is included in the control of these processes, during the period it regulates essential processes regarding neuronal differentiation and positioning of synapses.
There are studies that determine that SEC CB1 receptors, the most frequent from the Central Nervous System, present functional alterations in the brain areas involved in autism, for example, Hippocampus and Basal ganglia.
If this is one of those causes or a deciding variable in ASD, we might believe the suitable cannabinoid will be THC, since there are also studies which encircle the CB2 receptor of SEC at ASD.
THC is the cannabinoid that behaves through these 2 receptors, CB1 and CB2.
But Cannabidiol, or CBD, is shown as a rather interesting cannabinoid to intervene at ASD. Its mechanisms of action are different from those of THC, though they share its action on GPR55 receptors, and on receptors together with transient vanilloid possible (TRPV). These receptors can also be located in the CNS.
The effect that CBD provides us is very curious, because many of these children, as we said before, have competitive behaviors and self-harm in many cases, so the effect we could say”normalizing behavior” is very interesting, because that there aren’t any symptoms of sedation, the alertness is correct and remains smooth, however, the behavior is stabilized in many cases, and I have to insist that the degree of patient participation always has to be assessed.
There are individuals who acquire skills they’ve lost or have not attained, dressing alone, interacting with the Tablet, focus on music, focus on the environment when they walk, they prevent physical contactless or even hugging occurs for the first time to receive the best in years, improves facial expression, maintains eye contact.
Many of these children look unhappy and in pain or distress continuously, and if they begin treatment it seems to change this circumstance or at least improve, some smile and others laugh!
These tiny adjustments, for many insignificant, represent a large step for parents and some realistic expectations, which did not exist before.
We lack clinical trials which can definitely supply us with essential data on its effectiveness in ASD. We also have no studies on the prolonged use of CBD, because of its use in the medium and long term, and the potential undesirable consequences. But at the moment CBD is secure and very little poisonous, in actuality, we don’t know the maximum dose yet.
We know, therefore, that both cannabinoids can be effective in cases of ASD, and I believe we need to establish which treatments are the most effective, in relation to the ratio of THC / CBD ratio that we ought to use.
The individual should not pose any type of psychoactive influence on the part of THC, and we should utilize CBD initially and subsequently assess the need to add THC in various proportions, until improvement is achieved in different locations, constantly based on the evolution and clearly assessing the effectiveness and controlling the potential look of unwanted effects.
Each case must be assessed since none is the same as another. In addition, I insist on the value of conducting clinical trials to have the ability to work with clinically verified data. We have a ton of information on cannabinoids, but essentially through preclinical information, which comes essentially from animal experimentation.
Bruno, 10, has been on cannabis oil per month. Her parents made the decision to find that she didn’t react as expected to prescription medication to treat her refractory epilepsy.
In simple terms, epilepsy – a disorder caused by the imbalance in the electrical activity of neurons – is refractory when seizures are so frequent that they stop the patient from growing his life normally. Occasionally, anticonvulsant treatments prescribed by physicians fail to control your seizures or their side effects become invalidating. The disease, in addition, Isn’t insured by the Plan Auge or by the Isapres.
Bruno, Pilar’s son, was born with cerebral palsy and the subsequent diagnosis of epilepsy ended up complicating his ailment. At his young age, he’s treated with three drugs and, based on his mother, does not prevent him from abruptly falling into a film called “epileptic status”, a silent emergency at which the brain doesn’t stop convulsing.
“They’re life-threatening,” says Pilar. “You see him he is as ordinary, this is only detected with an encephalogram.”
Pilar didn’t understand that cannabis oil-based treatment was already practiced by families in Chile. For this reason, after contact with Fundación Daya, he advised himself and decided to dare to try an oil syringe offered by a family acquainted with the subject.
“To Bruno’s mother, after two weeks of treatment, her son’s disease action is obviously inhibited by cannabis oil.”
A few days after the results appeared: “Bruno suffered from sleeplessness years back, he spent a couple of years sleeping through the night. Whenever there’s sleep deprivation the disasters appear, then it’s similar to a vicious circle. With this oil he started to sleep well immediately,” said Pilar. Her blink crisis was also over, the wake of her preceding status.
For Bruno’s mother, after two weeks of therapy, her child’s disease action is obviously rectified by cannabis oil. “Now he is far more active, he’s another look, his eyes are somewhat more awake. There is a noticeable shift”, he describes.
The little one takes a quantity of oil similar to that of half a grain of rice, once in the daytime and once at night. In parallel, he proceeds with his traditional medical therapy. Thus far, however, Pilar has not told the pediatrician regarding her decision.
“When we started using the oil, I asked her telling her that she had been using it and watched her rejection and preferred not to tell her anything else. However, in November she’s a 24-hour electro and she is going to be monitored and I think that it’s going to be time for you to tell her, I think it’s great, to be truthful with her. If you conceal it, this thing won’t ever advance”, she assures.
Treatment based on cannabis oil in children is already a fact in Chile. However, families need to exercise caution with valid limitations – that can even mean prison terms – and still face indecisive medical opinion. It is not new to anybody, however, the debate has been opened.
The Instances of Charlotte and Javiera
In the nation, there are approximately 90 thousand people with refractory epilepsy. During the past week alone, one hundred families in Osorno, whose children suffer from the disease, demanded authorization from the Servicio Agrícola Ganadero (SAG) to develop cannabis and alleviate their ailments.
Until now, parents of ill children must go to the illegal market or risk growing in their homes if they would like to generate enough cannabis for therapy. According to Paula Bobadilla, one of the founders of the Mamá Cultiva organization – which guides families on the topic – it requires 10 to 12 g of cannabis flower to produce 1 milligram of oil, sufficient for 20 days of treatment.
Bobadilla learned about the treatment through the case of Charlotte Figi, a woman from Colorado who had been diagnosed with Dravet Syndrome. Charlotte, 5, had up to 300 episodes of seizures a week until her parents, tired of their ineffectiveness of other treatments, chose to test.
In Colorado, the selling of marijuana is decriminalized and its own medicinal use can be allowed. After obtaining the prescription from the two doctors, the family began the treatment, with effective outcomes: Charlotte went to have only one seizure a month, and improvements in her behavior and cognitive and psychomotor abilities were detected. After being evicted by the doctors, the little woman was able to get up, walk, eat by herself, and perform.
The substance provided to Charlotte is from a strain particularly created to take care of children in similar conditions, with a low content of THC – the chemical with carcinogenic consequences – plus also a higher presence of cannabidiol (CBD), which has anticonvulsant powers. His case is considered emblematic from the conversation he’s facing now in Chile.
“I watched the Charlotte video. My daughter was carrying 6 anticonvulsants and they wanted the next one, to present her Rapamune to see whether the tumors shrunk a little. Javiera has tuberous sclerosis which creates many tumors in the brain and heart,” explained Bobadilla.
Such treatment, however, lowered Javiera’s defenses and attained an approximate cost of 400 thousand pesos, added to the 500 million pesos of household expenses in the medical therapy of the little girl and her mum, worried by the circumstance. The sum was unattainable for the family.
“I purchased on the black market, as most dads do. This is a constant risk because you need to cultivate it. I nurture but at any time they could come and remove all my plants”.
” I bought on the black market, as most dads do. This is a continuous risk because you need to cultivate it. I cultivate but at any given moment they could come and remove all of my plants. The other time we were detained, they removed what we’d bought and there you shed that medication for the son. And it is money because you buy just a few grams and they cost you 10,000 pesos. We firmly believe in self-cultivation”, he contended.
Javiera stopped carrying the 6 anti-convulsant drugs that had been prescribed for her. In the eyes of her mother as well as the pediatrician herself, the advancement is evident.
According to Paulina Bobadilla, the physicians who treat her – from the German Clinic and the Clinic of the Catholic University of Chile – are advised. “The pediatrician is surprised by the progress which Javiera has needed. We weren’t planning to tell him but we had to tell him because the shift my daughter had was noticeable”,
The look of science
From traditional medicine, they continue to be cautious when analyzing the side effects of cannabis-based therapy and its own concrete success on patients with refractory epilepsy. In the opinion of Dr. Tomás Mesa Latorre, child neurologist, and director of this Chilean League Against Epilepsy, the Choice is available.
“There are some patients who have been treated in different parts of the earth. As physicians, we need dependable and dependable research to have a scientific opinion. In medicine, there is a lot of treatment that ends up making it look that patients do better,” he argued.
In Mesa’s opinion, the remedies must be scientifically manufactured, with an accurate understanding of the ratio of cannabidiol (CBD) and tetrahydro carbo cannabinol (THC): “It is understood that CBD is the one that would have anticonvulsant effects, while THC could worsen it even. There are instances of poisoning in patients who have been treated with no successful diagnosis.”
The neurologist assured, but that”an oil well regulated and controlled by a doctor can be a good alternative.” His opinion coincides with the vision lately formulated from the president of that the Medical College, Enrique Paris, at the chapter of the Contact program dedicated to this topic.
“I would advise it. I have not read that there aren’t any side effects of the medication. Different is the reality of marijuana for recreational purposes. That is another topic”, he asserted.
Despite these remarks, you will find a high number of doctors who flatly refuse to experimentation with cannabis. Most of them argue about the side effects (especially THC), however, households are adamant in rejecting such criticisms.
“I asked the neurologist and she said how could she be so irresponsible, but I made her view that it was irresponsible to continue giving her medications than which one of them had more horrible side effects. One took away eyesight, with another, he removed his nails and hair,” states Bobadilla.
“For many children, some medications decalcify them, a drug that Bruno takes causes kidney and liver problems. I know that the effects of the oil are insignificant next to all those drugs, that yes they are hard drugs”.
Her vision is shared by Pilar, who promises to be more afraid of the side effects of antiepileptic drugs. “For many children, some medications decalcify them, a drug that Bruno takes causes kidney and liver problems. I know the impacts of the oil are insignificant alongside those drugs, that yes they are hard drugs. Epilepsy itself is causing deterioration in the brain. In this situation, the mildest thing which may happen is that there is a complication of cannabis.”
The mothers, from their experience, assure that there is not any contrast between the effects of the consumption of cannabis oil and smoking bud and they face the point of view of traditional medicine in Chile:”They do not weigh the side effects that they have their medicine sleeves that the one thing they do is produce the children go worse every day. They do not see that,” declares Javiera’s mother.
Mothers urge its use to other families
For the growing families, Fundación Daya – that advises parents and medicinal cannabis patients – and also the activists themselves, the conversation on the decriminalization of marijuana self-cultivation is well underway. Parents of sick children argue it is time to get the word out and the state takes over the lawsuit.
“There are lots of popes who are in this fight. We had a meeting on Saturday and more than 100 families from all around Chile came,” says one of the founders of Mamá Cultiva. During the last week, they have been invited to the Health Commission of the Lower House which assesses the endeavors on decriminalization currently presented.
Paulina went from spending 500 thousand to 100 million pesos in the treatment of her daughter. He guarantees that it could be a lot less if they had been approved to cultivate quietly in their houses, but, for now, there is no fear that it is worth, something similar to that which was expressed by Forno:” We is going with everything in regards to a kid the remainder is about solving on the manner. Epilepsy and the drugs to treat it are scarier,” he states. For now, take certain defenses, like putting your child’s title, rut, and disease in your plant pots.
Both moms recommend the use of cannabis oil for households with children with refractory epilepsy. “Another day I saw a lady with a child in a wheelchair and asked her if she had epilepsy. I explained a little bit. This has many benefits that one starts to reside with this particular subject. He gave us back our breath. Everyone dares because there isn’t much to lose,” says Forno.
Bobadilla claims to be hopeful about the conversation in Parliament and points out that”everyone has the right to be aware that there’s yet another choice. I recommend it one hundred percent”.
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