Epilepsy, Health, Our Son, Parenthood, Personal, Seizures, Toronto

Seizures Are Not My Friend

Happiness
Seb and Mama, post MRI.

Last night I was thinking about posting an update about Sebastian’s seizures and recent MRI. Then I read a short conversation between two people, one of which was actually making a joke about having seizures and I thought, well obviously they’ve never experienced a seizure, or seen someone they love experience a seizure. Or maybe they have, they describe it so well. Starting as a twitch. Then it escalates to a seizure. With a finale of a grand mal seizure. And I want to vomit. Instead I decided that now was the moment to write my update about something that means more to me that most can understand.

We are in a seizure cycle this week. It’s amazing how much these cycles break me down. I hate them. We can have a really good two to three weeks were Sebastian doesn’t have any seizures and then follows a week or two of having seizures every day. Every day. They start with twitches. Mainly in his right arm or leg. Sometimes the twitches are so big they are the entire right side of the body. Very quickly, suddenly and then they are gone. When the twitches start I have to monitor Sebastian because the twitches lead to bigger seizures. Usually after he falls asleep. He had one yesterday. He was so tired from school and finally fell asleep in the car on the way home. We sat in the driveway and I played with my smart phone while he slept. After about ten minutes I heard him moving and turned around to him having a seizure in his upper body and face. I quickly pulled him out of his car seat – thank God we were parked – and I held him upright until he woke up and came back to me.

When your child is having a seizure there is nothing you can do except wait it out. I hold him tight, sometimes upright or lay him on his side if he is already laying down. Sometimes he burps and soon snaps out of it. Sometimes he even smiles and I know he’s back after I’ve been saying his name over and over because there was nothing else I could do. Yesterday his seizure was only about a minute. Which is a good thing. Five minutes is bad. Anything over that and its a trip to the hospital.

Since Sebastian is now on two medications, Keppra and Volproic Acid, his seizures are more under control. I say more because he still has them. I thought that he would get on medicine and they would suddenly disappear. I mean, antibiotics make your sickness go away, right? Well, not so with seizures. It’s a gamble and usually a cocktail of medicines that do the trick. Unfortunately for us, the trick only helps most of the time, not all of the time. So we are on a cycle. I don’t know what triggers the cycle. I know that if we are in a cycle and Sebastian is over-tired then he is more likely to have seizures. This week and last he was even napping but still having his seizures. He takes MCT oil because someone told me their neurologist told them it would help with seizures. I don’t know if it does. But I do know it’s not hurting him. He also eats coconut oil because it is a healthy fat for seizures and gaining weight. But he still has seizures.

We met with our neurologist team last week. We have one resident and one doctor that we see at Sick Kids. It’s always the same resident and the doctor changes depending on the day. We went over the MRI Sebastian had back in January. His third one. Sebastian sat on my lap as we scrolled through the black and white pictures of his brain on the computer screen. There are white areas on the cerebellum. On the basil ganglia. Something about the grey and white matter. These are the places injured at birth. These are the places where the message is relayed. The place which creates the message for motor function in Sebastian’s brain is not white. It is ok. But the areas where the message is relayed are white. And they are not ok. So those messages don’t get to his arms or his legs or even his tongue, like yours and mine do. Which is why he has cerebral palsy.

Why did we need to be reminded of Sebastian’s brain injury? Because the doctors were looking for anything which may be causing the seizures since they started happening fairly recently (June 2010). They found nothing. A bit more white on the left side, which makes sense that most of his partial seizures are on his right side. His seizures are simply caused by his brain injury acquired at birth. So that’s that.

We are supposed to be happy and thankful that he doesn’t have them every day. And I feel happy and thankful for those weeks in the cycle when he doesn’t have them. Then I feel tired and defeated and sad during those weeks that he does.

So I apologize if I don’t join in on your dialogue about fake seizures. Because I know what the real ones are like. And they don’t go away with the laughter. Or when the conversation ends.

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12 thoughts on “Seizures Are Not My Friend”

  1. Seeing Grace have a seizure if one of the most frightening and helpless things I’ve experienced. I am continually fearful of it happening again. Thank you so much for sharing your sweet Seb and you warm heart with us.

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  2. Thank you so much for your kind words. I was thinking of you and Grace when sitting down to write this post because I know the experience is so new and raw for you and I know how hard it is. I truly hope you never have to see her have one again.

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  3. amazing Kara, you are so strong for sharing this and helping others understand how normal and natural their feelings of helplessness, fear and anger are.

    hugs to you all

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  4. Kara, i have only seen Cooper have one and that is etched in my memory and i think about them most days when there is any jerking. much love to you and Seb and i hope you don,t have to get too used to them xo

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  5. Damn it. I hate the seizures for you. They are my biggest fear as Oia’s neuro reminds us that one could rear it’s ugly head at any time. We’ve had a couple questionable moments while Oia’s had a fever and the seconds of question left me feeling like time stopped. Ugh. I hate them. Hugs to you as your sweet Seb braves his way through these… praying for them to settle.

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  6. I am constantly amazed at your strength and love. I seriously cannot comprehend what you go through on a daily basis. I wish there was something I could give to Seb to take these away. I cannot imagine how scary it must be to look at your child and witness this. The panic and the fear. No matter how frequent or infrequently they are I know it is always in the back of your mind. Give him a big hug and a kiss from us and of course you always have hugs from us and our support. A day at a time…

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  7. Kara, I hate the sound of the seizure cycle. We have been lucky (touch wood) on the seizure front in our house, but it’s always in the back of my mind that any day could be our first day. Many thoughts with you as you and Seb as you go through this. The only positive light I have to offer is that we’ve many friends who’ve found that magic combo of meds that’s right for their child and they’ve stopped the seizures in their tracks.
    And yes, the jokes aren’t funny, ever.
    Big hugs
    xo

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  8. Elizabeth does not have seizures which I am so thankful for but it still scares me that one day she may have them due to her brain injury.
    I support so many families at work whose children have seizures and I see how stress and anxiety that these unpredictible terrifying events have. Quite a few of the families I see have Diastat (rectal valium) on hand to stop a prolonged seizure and knowing that they have something when their child is in status makes it a bit easier for them to cope. I have seen so many seizures and I really can say they all are so frightening because you don’t know when it might be the time it does not stop after a couple of minutes.
    Seizures really suck there is no other way to say it.

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  9. Thank you so much for sharing your story and experience with us. My son is 6 years old and has a very rare syndrome whereby seizures are common. He has been one of the lucky ones not to have them until two weeks ago. They last for about 15 seconds. They are frightening and I feel so helpless. I am trying so hard not to let these seizures control our lives and keep me down, but its an emotional battle. By sharing your story, you have made this mom feel like “I am not alone” :)) We are also seen at SickKids. They have been nothing but amazing and attentive with our son.

    Big hugs to Sebastian.

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  10. I hate to denounce seizures as my child has them but they are not my biggest concern, No, my hugest worry is about her future. I never found the seizure ‘jokes’ hilarious either.

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