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What it’s like growing up with an epileptic brother.

In DiseaseLife ScienceUncategorized |

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On February 22, 2018

 

I grew up, and I’m currently living with a brother that is suffering from Epilepsy amongst other untreatable diseases and conditions. It is scary seeing your younger brother go from being perfectly fine to a full-blown seizure in a matter of seconds and I’m writing this article for those in a similar situation as I was in. Feeling powerless when you see your family member going blue on the kitchen floor and sometimes passing out.

Epilepsy is the tendency to get a lot of seizures. There are lots of different kinds of seizures; Tonic-clonic, Absence seizures, Myoclonic Jerks, Temporal lobe seizures, … or a combination of some of those at the same time.
That is what my brother is suffering from, a combination of Absence with the typical and well-known Tonic-clonic seizures.

 

The Beginning

The earliest memory I have of an attack he got, dates back to when I was around 7 or 8, so he was 5 or 6 years old. He was lying in my grandmother’s arms, laughing together with her to a song I can’t remember.
It looked like he slammed his head against a pillow all of a sudden, but in a way that looked totally unnatural. He started shaking all over his body soon after. I particularly remember the look on my grandmother’s face and my parent’s car driving off with my mom and brother in the backseat. I thought he was dying. I had never seen an epileptic seizure and my parents hadn’t either.
While I’m writing this, I feel the anxiety creeping up again, my hands are getting sweaty. It’s a memory I will never be able to forget.

After this one instance, he had a couple of sporadic epilepsy attacks but the doctors got control over it pretty quick through medication. I don’t recall any other seizures until about 2 years ago when he was 15 years old.
The time puberty screws around with all boys and girls and the body of a child turns to that of an adult in the span of a couple of years. He suffers from a lot of different diseases and disorders, mainly sprouting from a metabolic disease he’s got. The theory is that his puberty period moved so fast and violently, that his medication doses were too low and could no longer control the seizures.

 

The Second time

After another unexpected attack, they were now happening on a weekly basis. He would have an attack on Friday, for example, and by the next Monday, he would start having absences. That’s when a person is totally fine and mid-sentence he stops what he’s doing and stares blankly. He wouldn’t fall over, but he would just stand there, staring straight ahead. When we said his name or gave him a hug, he would look at you like I think a person with heavy dementia or a heavy drugged person would. Empty eyes, looking through you. Totally gone from this earth, not knowing where or what anything is. Until he wakes up, like a snap of a finger just like a hypnotist would do on stage, he’s back to normal.

These Absence seizures would start to occur daily. First a small one, not longer than 5 seconds. But gradually increasing in length and strength. Until he would be in this trance for over 5 minutes, then we’d know he’d have a seizure any second.
Typically, we’d bring him to the sofa or a bed to make sure he’s as comfortable as possible and just wait while holding him so he doesn’t hurt himself.

 

We would look at him and you could see his eyes slowly rolling back, he opens his mouth a little and the pure fear on his face as he would enter a seizure. I have seen some scary moments in my life, but nothing compared to what he must feel when having a seizure. He can’t scream when he’s having one but the constant gasping for air and the panic in his eyes, pupil as wide as possible and black as the night. His lips slowly turning blue, as well as his whole face because he’s not able to breathe in or out.
He transfers from absence seizure, into the ‘traditional’ Tonic-clonic one.
I think the doctors asked us to time the duration of his seizures once, but I can’t remember what the results were. They seemed to last minutes sometimes and there were instances where they would last for so long, that we’d call an ambulance to make sure he’d make it through.
Again, this all looks very alarming, but the brain is very good at self-defense. It will not let the patient stay stiff long enough to do him any harm.
Then again, as my brother suffers from multiple brain-related diseases, this always extra scary for me and my family.

 

The doctors told us we should gradually increase the dose of the medicine that should prevent these attacks, which we did. It took over a year for him to stop having seizures after my parents took it upon themselves to increase his dose by a bigger amount, almost doubling it.
Since then, he was seizure free until a couple of days ago when he had a violent one after he went on holiday with an organization he went with multiple times. Did one of his pills get forgotten? We’ll never know, but it’s likely.

 

He is fine now. Fine meaning temporarily free from epileptic seizures as he’s still struggling with other nasty beasties that are hard to battle.

 

So what is my advice for people in a similar situation?

If you are an adolescent, teenager or anyone really and you have a relative struggling with epilepsy the hard, cold truth is that you can’t do all that much. Of course, you should consult doctors and make sure the right medication is taken.
Besides this, just be there for your relative. In my case, my brother doesn’t have a normal, independent life and can’t communicate as a ‘healthy’ person would. That makes it extra difficult to understand what he feels, wants or doesn’t want. But when the patient is living an otherwise normal life, epilepsy isn’t a deal breaker. Be careful with swimming and heavy exercise and don’t put your relative in a safe, controlling little box when they’re younger. They have a life that is meant to be lived! Make sure the school and their friends are informed on what they have to do if a seizure would occur.

 

Epilepsy is definitely a hurdle and it can completely change your life but it isn’t life-threatening in most cases. When you have the right medication to keep it under control and a strong group of family and friends to help you through possible hard times, you shouldn’t worry too much.

 

 

Last modified: February 22, 2018

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