Since starting cannabis oil treatment, Sofie’s needed no hospitalizations.

Parents Of Severely Epileptic Girl Turn To Illegal CBD Oil

Since starting cannabis oil treatment, Sofie’s needed no hospitalizations.

 
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by Patrick Dewal

on November 10, 2015

This story was first published by MintPress News.

Sofie Voncken is a 6-year old girl who appeared in a June 2015 episode of “Koppen” on the Flemish television channel VRT. Sofie has lived since she was 3-years old with a particularly severe form of epilepsy that unquestionably changed her life forever.

She suffers from what is called the invisible variant of the disease. People around her do not see that something is wrong with Sofie. But a 24 hour electroencephalogram (EEG) shows that Sofie’s brain is showing constant epileptic activity during her sleep. While awake, the epileptic activity falls back to a still alarming 85 percent of the time. Although the outside world will not observe much unusual about Sofie, her brain has continuous epileptic activity.

So it is pretty easy to understand that many of these children are trapped by their brain development and often make no progress at all. In Sofie’s case, it means that she has the development of a 3-year old, while she is six and a half. This is hardly surprising because the high rate of epileptic activity in her brain is not leaving any normal time for learning.

Epilepsy not only creates stagnation but remains a very dangerous disease in the first place. The plucky Sofie seemed more than once at risk of becoming a fatal victim of the mysterious illness, but fortunately this fate has been kept away from her and her family. But because of the epilepsy she is in constant danger. No wonder the life of little Sofie moved away from normal play and kindergarten activities to many consultations with doctors, professors, and ever stressful hospitalizations.

Moreover, it is not difficult to understand that in addition Sofie’s whole family suffered and is still suffering under these tragic and difficult circumstances. To see your daughter in lasting agony creates immense stress and that is no different for the Voncken family. Sofie’s parents are in a permanent state of alertness and her little twin sister, Sara, doesn’t always get the necessary attention a 6-year old needs — how could she? An enjoyable city trip was not an option in recent years at the Voncken’s house. The care for Sofie is continuous and Jean-Pierre, Sofie’s dad, was thrilled when he could choose an early retirement a few years ago and became full time caregiver to his daughter.

When Sofie’s story was on the episode of Koppen last June, the toddler did pretty well. It is interesting to take a closer look how this came about.

From January 2012 the doctors and professors who were in charge of Sofie and her family decided to medicate the then 3-year old girl because of her epilepsy. At the same time began an unceasing rollercoaster for her parents. Between January 2012 and today, the little Sofie was given an impressive list of medicines. The child tried several anti-epileptic drugs, sometimes in combination with Frisium, a benzodiazepine, and followed various restrictive diets. But Sofie’s epileptic attacks were not gone and she still needed regularly emergency rushes to the hospital for a short or longer hospitalization.

When I asked her father, Jean-Pierre, what all the drugs and diets brought as positive results, he replies remarkably laconicly: “Nothing.”

Sofie Voncken sits with her parents and her twin sister, Sara. Via: Jean-Pierre Voncken

Sofie Voncken sits with her parents and her twin sister, Sara. Via: Jean-Pierre Voncken

Forty-five months of taking prescription medication and restrictive diets has provided no significant improvement. When a professor of the medical team at the Gasthuisberg Hospital in Leuven, Belgium, proposed in May 2015 to start a ketogenic diet, he added that the diet is the last thing he could imagine to help Sofie.

The ketogenic diet should have shown improvement after ten to twelve days but didn’t. The diet finally lasted twenty-seven days and did not bring the least relief.

“It’s criminal what my daughter had to endure during this diet,” said the father, clearly affected.

Now the medical team was distraught; they informed the parents about the painful situation. “They told us to prepare ourselves for the worst. This is not something you want to hear as a parent!”

Fortunately Sofie’s parents currently held a wild card aside. A last-minute means of rescue that Western (Belgian) conventional medicine do not know about and that the Leuven medical team didn’t want to be involved with in an active way when Jean-Pierre had told them his last possibility to help his daughter: cannabis oil.

He had even suggested to them that they should give cannabis oil to Sofie in the hospital under their supervision and they should monitor the results. But in the Belgian academic hospital they didn’t want to honor this request of a very anxious father and there was nothing left for the Voncken’s other than giving Sofie cannabis oil in their home by themselves. Before we learn the rest of the story, we must first answer another question. How did Jean-Pierre come to his extensive knowledge of cannabis oil?

For a long time now Jean-Pierre studied the internet as a modern detective studying his daughter’s illness while simultaneously he searched for possible alternative treatments that had delivered a favorable outcome in epilepsy, on a global scale.

In this way, he came upon the trail of parents in the same predicament as he was in the United States. As a last resort, they gave their epileptic child cannabis oil, which has no intoxication inducing effect, and the result was amazing. Also via the internet, Jean-Pierre met other Belgian parents with an epileptic child without favorable response to conventional medications. This family too used, albeit illegally, cannabis oil to treat their sick child and again with amazing results. So at the moment that the doctors in the hospital had no other treatment options, Jean-Pierre knew the time had come to play his last card. Through an illegal way, he bought a bottle of cannabis oil for 36 euros, enough for seventy days.

During the four months Sofie has used cannabis oil, she has made tremendous progress.

During the four months Sofie has used cannabis oil, she has made tremendous progress.

The period that preceded this event was an intense time for the Voncken family. From September 2014 until May 2015, when they began administering cannabis oil, they started drastically reducing most of her regular medications. “It seemed like we were on a nonstop hospital admissions routine. During this time, Sofie floated more than once between life and death,” Jean-Pierre remembers.

But then came the day of the first drop of cannabis oil, May 27, 2015. “From the first drop, the effect was spectacular and we are very confident that it is the cannabis oil that is the cause of our daughter’s health improvement. We are now seeing a playful child, a child that goes to discover the world and spontaneously takes a booklet. All of this was new to us.”

During the four months Sofie has used cannabis oil, she has made tremendous progress. She stopped almost all of her conventional but non-working medications. Only Frisium, a benzodiazepine, remains, which must be phased out very gradually, because immediately stopping can initiate unwanted side effects. Previously, she took Frisium three times a day; she now takes a smaller dose in the evening time.

In addition, the girl that almost stood still for four years on cognitive and motor capabilities now not only plays, moves, and discovers things, but she is going to school as well. This is only possible because, although she still has little epileptic seizures once in a while, they are very few and she is sometimes spared them for days and even weeks. Moreover, her nights are now finally revitalizing, so during the day she has more energy to continue her positive development. And, last but not least, since the beginning of the cannabis oil treatment she’s needed no hospitalizations. These positive changes in the health status of Sofie are not an illusion: other family members and acquaintances echo them.

Nevertheless, Mr. and Mrs Voncken risk a judicial punishment for having and administering cannabis oil to their very sick daughter.

“We risk seven years imprisonment,” Jean-Pierre knows, but this seems not to bother the man. On the contrary, his behavior may be unlawful and provoke possible imprisonment, but the man does not hesitate to tell his family story to the media. “We do this openly. First of all we want to help our daughter Sofie, but we want also to reach other parents of children with epilepsy and inform them about the possibility of using cannabis oil. I always try to persuade them to do this under the supervision of a doctor.”

In July 2015, six weeks after starting the cannabis oil, a new 24-hour EEC collected from Sofie showed clearly that the brain waves were much more stable. In fact, they had never been so stable. But for the doctors and professors in Leuven, it was not enough evidence to say that the cannabis oil worked. To conclude this, they want Sophie to be off all medication, only using the cannabis oil and then undergoing another 24-hour EEC. Presumably, this test will be carried out within a few months and will provide the doctors with new information.

After a hellish period of almost four years…the air in the Voncken family home in Maasmechelen, Belgium, finally seems brighter.

Did this huge and tumultuous experience make Jean-Pierre vindictive regarding the medical and political world?

“Do you want to sue the government?” I ask him.

“No, but to Koen Geens, Minister of Justice, and Maggie De Block, Minister of Health, I would like to say you have to stick out your neck to help these children.”

Sofie now not only plays, moves, and discovers things, but she is going to school as well.

Sofie now not only plays, moves, and discovers things, but she is going to school as well.

Why does science resist medical marijuana?

The family Voncken’s story grabs us undeniably as humans. In addition, it presents us with a scientific paradox. To begin with, we must realize that science has been given a divine halo by mankind. People dare not to doubt the so-called scientific knowledge any longer.

It is striking how a further investigation shows us how scientists paradoxically rarely find a consensus on a particular subject. Professor X sees it that way and Professor Y sees it in a complete other way. Both are undoubtedly very educated people but their conclusions can vary in significant ways and both conclusions are called scientific.

In today’s pharmacology and medicine, also based on ideology and market gains, this is no different. In certain cases medications, which according to current Western scientific procedures are tested and approved, do not always work. Some of them might even be harmful to humans. Others are unrecognized by Western science, and untested substances such as cannabis oil prove to work in practice or at least prove not to be harmful.

Moreover the stubbornness with which some doctors are inflicting painful treatments on their patients is frightening while, on the other hand, they prefer not to be involved with an unrecognized means, as Sofies’s case illustrates. But should physicians not at least study and consider them for the sake of the health of their patients?

What makes cannabis science even more complex is the fact that cannabis and CBD oil are illegal in a big part of the world, and doctors are not considering it as a treatment because of the lack of knowledge they have on this issue. If one follows the story of cannabis as a medicine, then one knows that there are globally respected scientists who hold remarkably contradictory views on cannabis as a medicine.

As bizarre as it may sound, if you are looking for a qualified doctor in Western medicine that recognizes the medical properties of cannabis oil, you will probably more easily find one in the U.S. then in Belgium. Not that medicine evolved over there in a Woodstockish way. No, those doctors also rely on scientific articles and receive feedback from their patients, but curiously come to very different conclusion than doctors in Belgium or other regions of the world.

The story gets even more complicated because in the U.S. not all states recognize the medical value of cannabis. Twenty-three of the fifty states now have a medical program based on cannabis running on state level. This means that a patient with a prescription from a doctor can buy medical cannabis in a dispensary. Just in 2014, a dozen states made it possible for epileptic patients to purchase cannabis oil to help to deal with their disease.

But in these medicinal cannabis-friendly states, one can also find doctors who are against medicinal cannabis and, in addition, there are still fifteen other U.S. states that do not allow any medical program for cannabis oil. Finally, to make it even more confusing, the federal law is clear that cannabis has no medicinal value and therefore medicinal cannabis is still an illegal drug at the federal level. Are you still with us? And this is only in the U.S.? Could it be that the medical world today is experiencing a paradigm shift but is not yet aware of it?

The strange attitude of scientists can be attributed to academic conservatism but is often the result of ideological and financial implications. Even President Obama said in a documentary by neurosurgeon Dr. Sanjay Gupta that one should follow the science in the case of medicinal cannabis and not one’s political ideology.

When I asked Mr. Voncken about the impression he had of doctors, professors, and other caregivers’ knowledge about CBD oil, his unmistakable answer is, “They know zero point zero about medicinal cannabis.”

This ignorance explains why there is no real scientific debate on medical cannabis here in Belgium. Ignorance reigns! Although, even in our country, cracks are starting to come in the walls of ignorance. There is a non-profit association called Medcan who is fighting to have medicinal cannabis legalized. Contacts between Medcan, university hospitals, and the government have been made, and in the near future Medcan will even be invited to share their findings and knowledge with MP’s during a parliamentary committee. Witnesses and experts, such as Jean-Pierre, will be heard, alongside testimony from physicians who are members of Medcan and who recognize the medical properties of cannabis.

More information about Medcan can be found through medcanvzw.be/.

 

PatrickPatrick Dewals has a bachelor in mental nursery, a masters in political science, and is a student of political philosophy. See more articles by Patrick Dewals here.