Tag Archives: epilepsy and PTSD

The Unwelcome Presence of Epilepsy

I started to hear a repetitive banging noise coming from the living room, and I yelled out, “Stop the banging!” When it did not stop, I marched out to the living room. “I said to stop the banging! What are you doing?!” I yelled again, looking at Nigel, whose body was half-off the couch with his legs stuck under the heavy coffee table, banging it. I thought perhaps he was acting out a scene from the movie or laughing in an exaggerated way, but that was before I saw his face. I pulled back the blanket that had been covering him, and then all at once it hit me. The violent convulsing, the profuse frothing at the mouth, the eyes rolling back in his head: He was having a seizure.

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My mind likes to torture me by replaying the events of Nigel’s first seizure five years ago. The above quote comes from the post I had written about it, and I still remember everything about that night. Mostly I remember the terror.

His subsequent seizures were the same. Always the violent convulsing, the eyes rolling back, the frothing at the mouth, the rigid limbs. Often the unmistakable thud of a body hitting the floor. I still hear it. Every time I hear a thud, even when Nigel is not in the house, I freeze, my heart races, and my PTSD kicks in. The force of his seizures is still with me, probably always will be.

The first medication we tried for him was not very effective. He continued to have seizures on a regular basis, like clockwork. Finally I convinced his aging doctor to try a different anticonvulsant, and we got it right just the second time out. It worked. I still lived in fear of the seizures, but they appeared to be controlled, and I felt so fortunate.

Last summer marked two whole years that Nigel, to the best of our knowledge, had not had a seizure. His neurologist ordered a 24-hour ambulatory EEG to see what the seizure activity in his brain now looked like. If it had decreased, we could begin the slow process of reducing the daily medication that, although a blessing, compromises his liver.

Nigel was excited about the prospect of eventually not having to take pills every day, of people not having to remind him. And he is also concerned about liver damage since his grandfather died of liver cancer. We were optimistic about the EEG.

But the results indicated that the amount of seizure activity had not decreased. At all. In his frontal lobe he still experiences the frequent, random spiking that, according to his doctor, could cause him to have a seizure at any time. We were disappointed that the medication could not be reduced, but immensely grateful that it was doing its job, and doing it well.

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This month marks three years that Nigel has been seizure-free. Three years! We are so blessed that not only do we live during a time in history in which we are able, in many cases, to control seizures through medication, but also because we found one that works for Nigel. I quickly remind myself of that whenever I lament that the epilepsy is still with us, still maintaining its unwelcome presence in his frontal lobe, continuing to compromise his executive function ability and his cognitive processing. It may always be this way. But at least we have the upper hand.

[image credit: Science Life]

At the Threshold

Tomorrow, Nigel and I are going to tour a local supported living facility that is a potential home for him in seven months. Now that he’s 18 and approved for adult services, he’s eligible. How did we get to this point?

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There is a part of me that is elated, I am sorry to admit. I have been his primary parent for 14 years, and a co-parent for four.  And I don’t have much left in me to give. I have been to every single goddamn IEP meeting for 15 years. Not just the annual ones – they happened more often than that for him. Add to that all the extra meetings and conferences with teachers, principals, therapists, and specialists. All the emails and phone calls. God help me. The phone calls – that there was a behavioral problem and I needed to leave work and pick him up. So.Many.Times. The doctor appointments. The blood tests. The changing of medications. The seizures, the horrible seizures and my resulting PTSD. The MRIs and EEGs. The picking up of prescriptions and their not being ready and my time being wasted. The forgetting to take his medication and me having to drive to his school to get it to him. The bullying. The bullshit of dealing with the teachers and school district about the bullying. Having to homeschool him because the school district suggested he be bussed to a different school district. And moving farther back, there were the years of screaming and bolting in grocery stores, restrooms, parking lots, restaurants, almost any public place. The extreme sound sensitivity. The not talking. The echolalia. The explaining/apologizing for his inappropriate behavior. The fear of the future.

But I am also elated about the prospect of him moving out because the past two years, since his epilepsy started, he has been very difficult to live with. By that I mean, as I mentioned in my last post, that he has become aggressive. He has also been verbally abusive to me. He has yelled at me and frequently says incredibly disrespectful things. I realize that a large part of that could have been due to his undiagnosed, untreated bipolar, which we are still jockeying meds to manage. But I am near the end of my proverbial rope. I am holding on – trying to – for seven more months until he graduates from high school with his modified diploma. I feel that I owe him that – staying home with me until then. He has worked as hard as he could to graduate with his peers. That’s all he ever wanted – what he said to me when he was 10 years old (and again at 12) – I just want to be like everyone else.

And it pains me to still see the differences. It pains me to think that, after everything we’ve been through, placing him in a supported living facility is the best I can do for him. He’ll still be able to take GED classes at the local community college. But I’m not elated about that. I’m also not elated that I’m having to “think of the future,” as my mother pointed out. “What would we do if something happened to you?” To be honest, unlike most special needs parents, I don’t think about that. I’m not sure if it’s because, as a long-term single parent, something has already happened to me: I’m a burned out shell of myself. I’ve had to do more than double duty for too long, and the thought of some other entity taking over soon is the only thing keeping me going. Or, the fact that I don’t worry about what would happen in my absence might also be because of a different something, something that parents of children with epilepsy try not to think about but that keeps us awake at night (check out #10 at this link). I may outlive my child.

Regardless, we are at the threshold of the future I previously feared. We are here – transition is now. In childbirth, as many of us know, transition is the period of labor that comes right before pushing. It’s the most intense part of the process and the contractions are the strongest. And the pangs I am experiencing now, before the last push in June, are incredibly strong.  I want to do right by him, because I love him fiercely, as much as I ever did, but his behavior is making me think I will not miss him! I know, it’s supposed to happen that way. Some birds need a little nudge out of the nest. But somehow this feels different. Probably because he’s such a different bird.   

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I tried so hard to ensure the best possible future for him. Understandably, I was crushed when what I thought he needed didn’t happen. But during this time of transition, I am realizing that what I thought he needed for a successful future might have been mere wishful thinking on my part. Even before he could talk, I have always thought that Nigel would succeed on his own terms. Sometimes, I just need to remind myself of that.

image courtesy of http://www1.cgmh.org.tw