Epilepsy And Us

[AD] The word epilepsy always conjured up visions of people falling to the floor and convulsing. I always thought this was a blanket type effect of the disease and anyone suffering from epilepsy would have limits to their life due to their disease.

I had a very limited understanding about epilepsy as this wasn’t something that had ever affected me directly. However, this all changed just before we all went into lockdown this year, when we noticed some changes in Oscar. 

For a while, he had been what we originally thought was rolling his eyes at us. This would happen several times a day, but we just put it down to a habit he had got into. This was until one day when we were chatting with him, he started to lose balance and completely ‘left the room’ for a few seconds. A trip to the doctor and then a referral to the hospital saw us talking with neurologists and having an EEG, as they were sure he was suffering from absence seizures. Absence seizures are characterized by short, sudden and unpredictable episodes of impairment of consciousness lasting no longer than 30 seconds (Holmes, 2008, p. 124).

The results from the EEG came back showing something a little different from what they were expecting, and until now it is still a work in progress to get to the bottom of the type of epilepsy Oscar is actually suffering from.  What I wasn’t expecting when we got this diagnosis was the worry that it has caused. These few second periods of absence seizures can have such a huge effect on his day in so many different ways. 

Imagining the possibility of him having a seizure by the side of the road and slipping off the curb, or by the edge of a pond and then falling in, keeps us on alert with him at all times now, just in case something like this happens. You just can’t be complacent, as I found out when we were out the other day. Oscar had rushed off ahead of us and started to climb by himself. By the time I rushed to get to him, I saw his eyes going and he fell off of the edge of the climbing frame. 

Those few split seconds when Oscar ‘blacks out’ could potentially cause harm to him, and so the whole family is now on alert around him at all times to keep him safe. His seizures are also brought on by getting out of breath, so it’s been a bit of a challenge to try and stop a super active six year old from getting out of breath! 

With that said, I still want him to lead a full and exciting life despite his epilepsy. We just need to ensure he is safe whilst doing so, even if this does mean me scaling climbing frames and swinging through trees with him. 

Of course, there are a whole host of medications out there to help control these seizures and we are on this journey now. It’s been a bit of trial and error and there have been some bumps along the way, but I have everything crossed that we will find something that works for him soon.

One thing that we have found out since his diagnosis is an understanding of why he had been struggling at school. Can you imagine being six years old and listening to your teacher explaining something. During this conversation, losing a few seconds of what is being said can cause the entire conversation to be lost on you. This in turn means you have no idea what you should be doing in class, and then end up trying to bumble through your day without any knowledge of what’s going on. I suspect that this is what has been happening for a while now for Oscar, and would explain why he has fallen behind in school. Hopefully, this can now be worked around, so he can thrive at school again. 

This series of incidents made me aware of how much knowledge I lacked about this disease. Apart from our doctor, I have found forums and sites are a great place to speak to others going through the same thing as well. GSK also has a disease awareness campaign called ‘Life Is Calling’ which has been a great platform to learn more about epilepsy and how it affects all kinds of people from all over the world.

Oscar’s diagnosis may have been a shock to us all, but he has taken it all in his stride. He has done so well with trying out medications that have had him feeling a little rubbish at times, and has adapted well to me having to pull in the reins when we are out and about. 

Yes, things have changed, and yes we need to be aware, but this has not and will not stop Oscar leading a full life. I can’t wait to be on this journey with him!

6 thoughts on “Epilepsy And Us

  1. Epilepsy is the hardest thing to deal with as a diagnosis in my opinion.
    Of all Grayson’s conditions it’s the one that I struggle with most and the one that effects us day in day out.
    But I was also shocked at how quick it became our everyday.
    I am so glad you are now with a team, it makes the world of difference and don’t forget to always call your epilepsy nurses. They are brilliant.

    I hope they find the right drug/s to help Oscar have controlled seizures, I never forget hearing how many people in your everyday life have lived with epilepsy quietly, so many people effected but still something we are all so uneducated about.

    Much love to you all xxx

    1. Thank you so much for your lovely comments and seeing how brilliantly you do with Grayson is an absolute inspiration.
      We have a fantastic doctor at the moment and I have high hopes she’s going to get things stable for us soon xx

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