Luka’s Epilepsy

We’ve now been in the EMU for 2 days now out of the 4. Luka is on an EEG and video EEG and with all the attention he is getting, he is being worn out. He’s slept 3/4 of the time he has been here which gives me some time to think and just have a minute to myself. He’s officially been taken off all medications, and since then he has only had about… 70 or so seizures. The doctors found it amusing (I cant think of a better word) because whenever I’d go into a seizure, so would Luka. As if Luka was being affected by my seizing. But, I have heard much talk about Luka and I must say, it does not set well with me.

West Syndrome, Dravet Syndrome, Lennox-Gastaut Syndrome. All things that I would hate for Luka to have.

The doctors did ask me about Luka’s development and seizures. Since I haven’t lived with Lucas since his birth, it was a bit of a shot in the dark. They are leaning towards Dravet Syndrome or a Dravet Spectrum Disorder since I was born with a SCN1A gene mutation, it is likely that Lucas has also inherited that same mutation and is displaying more symptoms. Then again, it may not even be anything. Lucas may have just had a Grand Mal randomly. It happens. They also asked about the likelihood of have VNS surgery done on Lucas. I don’t want that for him though. As much as it usually helps, Im just not an advocate of child surgery.

But we’re doing good. Im glad that being on EEG and video EEG doesn’t take away from Luka being able to run around and play with his toys or being in his own clothes. The slightest change in routine for him can cause a meltdown.

I appreciate all the comments and all on the last post.

– Joseph


About Joseph

18 year old dad raising a special needs 2 year old, while struggling with Dravet Syndrome.
This entry was posted in developmental delay, epilepsy, family, hospital, kids, parenting, toddler and tagged , , , , . Bookmark the permalink.

2 Responses to Luka’s Epilepsy

  1. I believe Luka is affected by your seizures and/or vice versa, y’all are connected. It is probably fascinating to the doctors because they were trained in science, and undefined connections like that challenge all hypotheses. There is a universe of information out there we just don’t know…

    When I was in the PICU with our son for 2 months, all I could do was trust…and wonder….

    Hang in there – one hour at a time.

    • thelukalife says:

      Im starting to believe that as well. I taught Lucas to time my seizures and call 911 when needed and just say “help, seizure” which for a 2 year old sounds like “hep, seesha” and whenever he does that, he goes into a seizure of his own. It always seems to happen in other situations as well.

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