Epilepsy? Cut it out!

In case of drug-resistant epilepsy, surgery can be a concrete answer. An answer we’re not talking about that much. Not yet.

[The original version of this article is available in Italian]

met epilepsy three years ago. We were on holiday, walking on the beach. It appeared out of nowhere. It was the Summer of 2013. A lot of things has changed since then, both for Leonardo and for us. Today, Leonardo is still a kid more wonderful than ever. This thanks to some doctors — extraordinary people, first of all — who operated in a situation that had become dramatic in the meantime. Let’s go in order.

In July 2013 we had just started our holidays in France when Leonardo, all of a sudden, acted in a strange way two times in a day: standing, it was like he was gazing into space. He couldn’t reply us. The first time all this occurred we went to the First Aid point on the beach. They suggested us to go back home and have Leonardo get some sleep/rest. Probably he was suffering from the heat, or he hadn’t eaten so much at breakfast. It seemed the reasons were as simple as this.

In the afternoon, we were again at the beach. Leonardo was fine after having lunch and taking a nap. There was no reason to think that what had happened in the morning was something different from a single, solitary episode. Unfortunately, we were wrong.

After a bath, the same episode occurred, again. The First Aid Point called for an ambulance to take us to the nearest hospital. The day after we were at home, more relaxed. All the examinations, EEG included, said there was nothing wrong. I can still remember today what they told us. Not the exact words, but the sense, for sure: we could continue our holiday, there was no reason to worry about what had just happened. They told us to come back after four days, to talk with a neurologist that was not in service. Just to be certain.

We didn’t go back to the hospital, never. After a calm day, Leonardo all of a sudden had a really strong seizure. It was clear, at that point, that the best thing to do was to come back home in Italy. We put together our luggage and drove back to Milan. At the hospital, after some examinations and another EEG, the answer was unequivocal: epilepsy. Focal epilepsy, to be precise. Abnormal electrical activity, and so seizures, started in a limited area of the brain. That word — focal — had no particular meaning for us at that moment: our son, in good health till some days before, was suffering all of a sudden from epilepsy. And that was a difficult news to accept. But that word, focal, become later fundamental.

They immediately started a pharmacological therapy, and we tried to re-arrange our days accordingly. As days and weeks passed by, it became clear that something wasn’t going the right way: finding the right medicines and doses for each patient is not something that occurs in a few days, and sometimes not even in some weeks, they told us. We were so prepared to wait for some time, hoping medicines would solve the situation sooner or later. There isn’t just one kind of epilepsy. Some of them turn out well after adolescence, some of them can be controlled by medicines. We felt hopeful.

Unfortunately, seizures Leonardo suffered from didn’t reduce. On the contrary, they were increasing in number and Leonardo started using less the left arm. In October, they decided on doing a second MRI. It was clear that Leonardo was drug resistant. While at the hospital, the night before the MRI, seizures started to increase in number and intensity. In the morning the situation was getting worse and worse: Leonardo was not more able to recover from seizures, so they put him into an induced pharmacological coma.

The days passed, but the situation wasn’t going better even though they were changing medicines and doses. Leonardo was still in a pharmacological coma. Our hopes started fading out. Suddenly, a spark in the dark: maybe Leonardo could have a brain surgery. Focal epilepsy can be evaluated for a brain surgery when seizures start from a limited area of the brain, and patients are drug resistant. Obviously, if certain conditions are satisfied.

Waiting for the transfer to the new hospital, the Niguarda Ca’ Granda, was draining. A lot of things had to be arranged before transferring Leonardo, including finding a bed in Intensive Care Unit, and preparing the brain surgery. Days were never ending. Finally, the transfer was made: more than fifteen days were passed since Leonardo had been put into induced coma. Leonardo had a brain surgery at the “Claudio Munari” Epilepsy Center. That surgery is the reason why Leonardo is still with us today. And it’s the reason why I’m writing these words and why we have decided to organize the fundraiser “Epilepsy? Cut it out!”.

Out story has a happy ending, or we can say so at least in part. The long stay in the Intensive Care Unit is the reason why Leonardo still has some motor problems today. And this is a first reason why an early evaluation for surgery is fundamental.

During the following months, seizures came back, again. We knew that seizures couldn’t suddenly stop. In fact, Leonardo was still taking medicines. It took time for things to get better. The situation wasn’t ideal, but we were confident in a better future. Unfortunately, the seizures didn’t stop nor decrease in number. On the contrary, they increased. Today Leonardo is still a happy and lively kid. Seizures are not just a few, I have to admit it, but I can say Leonardo’s life is a totally normal one when he’s fine. In November 2015, Leonardo went again to the hospital for the implantation of thin electrodes within the brain, for a more specific EEG monitoring. An examination they couldn’t do in November 2013 due to the emergency situation. In a small number of patients (less than 35%), non-invasive techniques fail to definitively confirm a focal onset of the seizures. These patients require more specific EEG monitoring, implanting these thin electrodes within the brain.

To prepare Leonardo for this examination — something not that easy to accept for a 5-years-old kid coming from some difficult months — we created a short comic: petitleò e il magico turbante (petitleò and the magic turban. The comic is in Italian only, sorry). If someone wants to use it, please do. This comic somewhat helped us, we’d be happy if it helped other people too.

The electrodes implantation hasn’t brought us good news: Leonardo can’t have a second surgery. But this is something that can’t cancel a fundamental fact: the surgery Leonardo had in 2013 saved his life.

There’s an interesting fact about epilepsy and surgery. More than 52% of epilepsy onsets occur on children (pre-scholar) while 77% of patients going through a surgical treatment are adults. They are sent to specialized centers late. This means that these patients spend years taking medicines that can’t fully control their seizures.

SOURCE: Claudio Munari clinical data

The first step of the campaign was based on Generosity.com — the title of the campaign was Epilepsy? Cut it out! and we raised $ 20,000 — for the fundraising part, but we also wanted to spread the voice about epilepsy surgery, at least as much as we can. So we then organized a second step using lastminute Heroes100% platform. On Diamociuntaglio.info you’ll find our history, that of Leonardo and some news about the “Claudio Munari” Epilepsy Center. This website is in Italian only, but you’ll find some more on the original fundraiser’s page on Generosity too.

We know that our objective is ambitious.
We’ve lived and are still living day by day with all the problems coming from epilepsy. These are just our two cents.

In case of drug-resistant epilepsy, surgery can be a concrete answer.

An answer we’re not talking about so much, today.

We have to spread the voice.

I design visual communication things / Organizer of Epilepsy? Cut it out! campaign / Co-organizer of @kerningconf / Connecting the dots is my motto