Father enthusiastically admits: »Before one seizure in the period of seven to twelve days occurred, but now there is one in fourteen days. We are talking about at least 20% improvement which for me is fantastic.”
Dravet syndrome. Defined as “a Severe Myoclonic Epilepsy of Infancy (SMEI)”, it is a rare and catastrophic form of incurable epilepsy which severely impedes the quality of life of the patient, and which is completely genetic in its origin. It was named after the French pediatrician and neurologist dr. Charlotte Dravet who was the first to describe this form of epilepsy in 1978.
In about 80% of the children the syndrome is caused by a non-inheritable mutation, which is rather considered as a so called de novo or “new” mutation in the child. In most cases it is caused by a mutation of the SCN1A gene which contains the code to create a protein, which helps to control the electrical activity in the brain. Establishing the diagnosis is fairly simple – a DNA test is all it takes.
There is no accurate data on exactly how many children are affected by Dravet syndrome. However, the incidence rate is estimated to be 1 : 16,000 or 1 : 21,000. One thing is certain, though – Dravet syndrome is a lifelong disease and children suffering from it are in constant need of supervision and special care.
According to the data currently available in Slovenia, there are four children known to be suffering from Dravet syndrome. One of them is Nika. The 16-year old was first diagnosed with the syndrome when she was still a 6-months old baby. When she was 7, the doctors ran a few blood tests which were the final confirmation that the cause of her epilepsy was indeed a genetic mutation.
As Nika’s father explains, Dravet syndrome is an incurable form of epilepsy. Various combinations of medicine can only relieve the symptoms. For this reason the family needed to fully adapt to Nika’s condition and accept it as a part of their everyday life. They had to get used to Nika’s seizures which would normally occur every seven to twelve days. Due to her condition, Nika is unable to do many things, therefore she always needs to be supervised by one of her parents.
“In the long run Nika will never be able to become an independent person,” her father explains and continues: “She loves swimming. But if she was to go into the water alone, it would kill her. If a seizure occurred while she was in the water, she would sink. She would drown because she would be breathing in water. In such situations she always needs to be accompanied by someone who can swim well. That means me personally. But I don’t mind. I like to swim with her. If the child is enjoying, we are all enjoying.”
Even the seemingly harmless puddles in the yard present a certain hazard for Nika. Again, if she was to have a seizure and fall into the puddle, she would start breathing in water and suffocate.
Seizures, according to Nika’s father, are difficult to predict. What exactly triggers them, is also still unknown. But since they have been a constant part of Nika’s life for the past 16 years, the parents have learned to closely monitor the girl’s face and recognize the small details, which someone else could hardly translate as signals that a new seizure is about to happen. These signals can be observed perhaps a day or two prior to a seizure, but since they are so very subtle, it is difficult to predict them with 100% certainty. Based on previous experience, Nika’s parents sense them rather intuitively.
“Sometimes the seizures can occur when she is in an extremely playful state or when she gets really excited about something,” Nika’s dad explains. “A seizure lasts for about a minute and a half to two minutes. It is a generalized seizure. A total blackout. Like a gunshot. It happens so suddenly. There might be a sign, giving us a heads up a minute or two before the seizure, but only I am able to see it.”
Since Dravet syndrome is a permanent and irreversible condition which cannot be treated in the long run, Nika’s parents have tried to make her life easier at least to some degree. Last year in the fall they learned about CBD drops which were scientifically proven to have antiepileptic properties. They started to administer a 5% mixture of CBD drops and olive oil to her, and soon they noticed an improvement in her behavior. As the father explains, Dravet syndrome took the greatest toll on Nika’s gesticulation and facial expressions. However, after the initial therapy with CBD drops, her mental abilities as well as here eye contact improved, and the interval between individual seizures increased. “Before, she had one seizure every seven to twelve days, but now there is one occurring every fourteen days. So this is at least a 20% improvement, which for me is fantastic,” Nika’s father enthusiastically admits.
Even an EEG test confirmed that CBD drops were certainly effective. Namely, initial therapy with the drops resulted in better test results as compared to the ones obtained by EEG test prior to CBD therapy. Nevertheless, Nika’s parents wanted to be certain that her improvement was indeed a consequence of consuming CBD drops. For that reason they decided to temporarily put the therapy on hold and had Nika take another EEG test at the end of last year. This time the results were far worse, so the father decided that Nika should continue her treatment with CBD drops. He shared his observations with Nika’s doctor who was eager to find out more. “She mentioned the findings of her colleagues from United States and Great Britain, and then she suggested a therapeutic level which, in that time, was the most suitable for Nika. We are now at the quarter of this level and the results are as mentioned before. So at least a 20% improvement of Nika’s condition.”
The practice of administering CBD drops to patients with epilepsy varies from country to country. In England for instance they tend to increase the therapeutic level by four times, and then slowly decrease it. In the United States they practice just the opposite – they increase the dosage gradually. “I have chosen the American system,” the father explains. “So we are gradually increasing the amount of CBD drops. From a quarter we plan to increase the therapeutic level to a half and, according to current results, we hope that CBD drops will further improve Nika’s condition.”
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