How to stay strong when your child has epilepsy: a mom's story of a fight for decent treatment
How to stay strong when your child has epilepsy: a mom's story of a fight for decent treatment

Hello. My name is Alexandra Borys, I want to share my story with you. And also tell stories of other women.

We are very different - age, profession, interests, life circumstances. And at the same time we are similar. How? The desire to ensure that the diagnoses we have to face do not determine the level of happiness of our families, do not make life unbearable.

In my case, the ruthless diagnosis touched the youngest daughter. She was born with a brain defect and in addition received epilepsy, which no drug known to science could cope with in 5 years. It is difficult to describe the scale of the catastrophe that occurs in a family where a seriously ill baby is born. It is impossible to describe the feelings of a mother who realizes that all her attempts to help do not lead to the desired result.

Alexandra Borys

Has my life changed after the birth of a daughter with a difficult diagnosis?

Oh yeah! I used to plan a lot. They say you want to make God laugh, tell him about your plans. I think he laughed notoriously. It wasn’t funny to me. For the first six months of my daughter's life, I cried every day. I didn't want to see my family and friends. I just wanted to crawl into a dark hole and sleep there forever. It was hard for everyone - me, my husband, my eldest daughter. It is very difficult to maintain adequacy in a relationship when you are under constant stress. But as time went on, we fought, gradually bright days began to appear. More and more. And now I can say for sure - a person is able to adapt to everything. Of course, the path to this understanding was not easy and long, but the main thing is the result.

Unfortunately, five years of searching, trial and error, dozens of consultations, hundreds of studies and many drugs did not lead to remission of the child. And in terms of development, the daughter remained a 3-month-old baby.

Alexandra Borys

Is there an alternative to the therapy already passed?

A year ago, we were lucky to get a consultation with an epileptologist from the best Canadian children's clinic SickKids Hospital. Christina Gow came to Kiev for a couple of days to consult little patients. She said that it makes no sense to further sort out the drugs, but it is worth experimenting with different doses and varieties of medical cannabis.

I can't say I was surprised. By that time, I had probably reread all the available studies on cannabis in epileptology and pediatrics. I learned a lot from American parents, whose children had the same diagnosis as my Juliana. We even had time to try one drug - oil from a non-narcotic hemp variety. In the USA it is classified as a dietary supplement, in Ukraine it is considered illegal.

Alexandra Borys

Already two months later, our epileptologists noted a pronounced positive trend. But, unfortunately, we could not achieve the full effect. And to continue experiments, as the doctor from Canada recommended to us, is very expensive and dangerous in Ukraine.

What is medical cannabis and what is it used for in world practice?

Cannabis is not a drug or a panacea, it is one of many drugs with its own spectrum of medical effects. Most often it is taken in the form of oils, sprays, chewable tablets. There are many varieties of cannabis, and each has its own set of active substances - they are called cannabinoids. Some contain psychoactive ingredients, others do not.They are used in different ratios and concentrations for very different conditions - to relieve seizures in epilepsy, reduce pain and nausea in cancer treatment, to relieve tremors and tics in Parkinson's disease and Tourette's syndrome, to reduce anxiety and improve sleep in people with post-traumatic stress disorder, to relieve muscle tension and pain in patients with multiple sclerosis. And this is not the whole list. Alas, medical cannabis treatment is not available to our patients. At least within the framework of the law.

Why do Ukrainian patients have no access to cannabis treatment?

It seems to me that the main reason is in the high offices. Doctors, patients, scientists are not heard there. And this is not just about cannabis preparations. I don’t even remember how many times I had to look for this or that antiepileptic drug abroad, overpay exorbitantly, risk my freedom.

Five years ago, epileptologists in Ukraine did not know about the use of medical cannabis - today they increasingly speak out in support of it. This also applies to oncologists, anesthesiologists, psychiatrists, neurologists, surgeons, infectious disease specialists, doctors of palliative departments - in our special project you will get to know them.

Five years ago, I had no idea about the existence of effective drugs from hemp. This topic, in my view, was related exclusively to drug addiction. The child's difficult diagnosis forced him to expand the horizon of knowledge and views. I would like to believe that most Ukrainians will be able to shatter outdated myths around medical cannabis for themselves without painful kicks of fate.

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