Tag Archives: epilepsy

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.

~

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.

~

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]

5 Questions for a Parent of a Child with a Rare Seizure Disorder

Hope for a Sea Change cover art

Sometimes Life in the Different Lane pushes you further than you ever thought you could go. I’m honored to interview my friend Elizabeth Aquino, author of the memoir Hope for a Sea Change and A Moon, Worn As If It Had Been a Shell, her blog. The exquisitely written Hope for a Sea Change chronicles the first year of her experience with her daughter’s life-long struggle with epilepsy. I am indebted to Elizabeth for her candor, openness, and generosity in doing this interview.

1. You had mentioned that you came to like people you “wouldn’t otherwise have dreamed of knowing or even liked.”  What other aspects of having a child with a disability have you experienced that you wouldn’t have if Sophie weren’t in your life?  

I honestly look on my life before I had Sophie as another one entirely, so everything that’s happened since seems marked by her presence. I know that I would never have made my home in California and discovered the part of the world where I am happiest despite however many hardships I face. I love the Pacific ocean and the temperate air and the easy access to desert, mountain and sea. I also love the accessibility of progressive ideas about health and natural medicine and acupuncture — alternative medicine in general — that I never would have learned about nor embraced had I not had Sophie and sought alternatives for her.

2.  What was it that caused you to feel “a strange sense of relief despite having handed my baby to a stranger,” especially since it sounds like you hadn’t gone into the room with her?

It’s difficult to articulate how powerful and life-changing Dr. Frymann was and became in our lives. She was old and very stooped and small, even then nearly twenty years ago, yet she exuded peace. I’ve very much learned to trust my instincts since meeting and entrusting Sophie to Dr. Frymann. I think she embodied all that was inarticulate inside of me, my dread at how Sophie was being treated, my intuition that she was being harmed and not helped, etc. When she took Sophie from me, I felt relieved somehow of the burden, that someone was finally going to help us.

3.  You had written if someone told you that you would eventually make California your home, and that you would have two more children there, you would have “shaken my head and laughed.” At what point did you decide to make the move?

I made three trips out to southern California for six weeks at a time over about two years when I was still living in New York City. The osteopath’s treatments were really helping Sophie, and I found going back to dark and cold New York harder and harder, even though I did love living there. Sophie seemed to thrive during her times in California, so my husband and I thought it might be good to just move out temporarily to give it a go and commit to treatments twice a week for as long as it took. When he got a transfer and promotion with his job, and his company actually paid for our move, it seemed destined. Still, we didn’t expect to stay forever, but one year turned into two and then three — and now we’re working on the seventeenth!

4.  Did Sophie’s disability affect your decision to have more children?

Yes, it did. I’ve written quite a bit about that, but deciding to have another child was both terrifying and entirely impulsive. I knew that I had to have more children. I wanted more children. When Henry was born and developed normally, I began to think that I should have at least another so that we weren’t always defined as the family with one disabled and one not — that sounds terrible to me now, but at the time I wanted Sophie to not only be a part of a larger family (more people to love her!) but also to give Henry support as we aged. That kind of thinking came much later, though, when it became more and more apparent that Sophie would be dependent on us for the rest of our and her life.

5.  If you could go back and tell your younger self anything to prepare her for the parenting experience ahead of her, what would you say?

Hell, I don’t know. Run away now to Bora Bora and don’t look back? In all seriousness, I’d probably advise my younger self to get marriage therapy and individual therapy sooner. I’d accept help — any kind — and I’d exercise more.

Thank you, Elizabeth!

The Few. The Proud. The Ineligible.

Dear US Marine Corps Recruiter,

First off, I wanted to express how much my family and I support and appreciate those who put themselves in harm’s way and sacrifice time with their families while serving in the military. We have a special Veteran’s Day tradition that Nigel started years ago, and we always remember that Memorial Day is not National BBQ Day. My great-grandfather served in World War I and my grandfather was a US Marine who served in World War II, of which I am especially proud. My father served in the military and so did my sons’ father. But Nigel, my older son, cannot.

When you called last night as we were finishing up dinner, I was slightly amused by how you said, “May I speak with Nigel, please?” For one thing, it’s very rare for him to receive phone calls outside of immediate family. Nigel has autism, and while I know that that alone does not make him ineligible for the military (I did my research), he’s been in special education since the age of three and has a documented six-year emotional delay. I completely realize that you didn’t know any of that, and that you would have had no way of knowing that. I wanted to see what would happen if I put him on with you.

And he did great, didn’t he? You guys talked for about five minutes! He very clearly stated that his after-high-school plans were to move to Los Angeles, go to film school, and work for Disney. And you didn’t miss a beat in telling him that he could film documentaries for the Marines! I gotta hand it to you, you’re good. Nigel, who loves military history, was pretty excited about that prospect, mostly because he thought that he could go straight out of high school to be a filmmaker for the Marines. That’s the way he thinks, and if you don’t tell him differently, how would he know? And he also didn’t know that having epilepsy makes him ineligible for being in the military. So that’s why he didn’t mention it when he was talking to you, and why, as he told me afterward, he was looking forward to talking with you again (since you told him you would call again).

Mr. Recruiter, if the school district allows the US Marine Corps to obtain a list of private citizens’ phone numbers so you can call them during the dinner hour, would they not also allow you to ask for a list of any students who have a Seizure Protocol on file? It certainly would have saved a lot of disappointment on my son’s part. He can’t drive, can’t take baths, has to limit screen time (which, as an aspiring filmmaker, is incredibly disappointing), and now he finds out he can’t be in the military. I know, he needed to find out anyway. I just wish he hadn’t gotten excited about it beforehand. So I told him last night, and he said that he wanted to tell you himself the next time you call. Because he still has his pride, even if he can’t be a Marine.

Thank you.

Nigel’s Mom

Things That Go Thud in the Night

They happen at night.

Sometimes it’s a resounding thud, the unmistakable sound of a body hitting the floor. Other times, a series of repetitive thumps, as rigid limbs strike the wall or pieces of furniture. My blood runs cold. I never understood that figure of speech before, but now I do. And my heart beats wildly out of control as I run down the hallway to help my son.

Because I know, before I even get to him, that he is having a seizure. Of course, I didn’t know the first time. But from that day forward, a sort of PTSD kicked in, and now, whenever I hear thuds or thumps in my house at night, my body reacts. I leap out of bed, even out of a sound sleep (although since my boys were born, I’ve rarely slept soundly), or I bolt upright if I’m sitting at my desk or on the couch. I’m on high alert as the end of the day creeps near.

*

It’s been a year now since Nigel’s first seizure. He went for six months without having another one, and then for the past six months he’s had several. They have all been very similar – classic tonic-clonic (grand mal) with loss of consciousness, eyes rolling back in the head, labored breathing, frothing at the mouth, rigidity and convulsing of limbs, lasting approximately two minutes. Two minutes is a long time to be watching your child’s body betray itself, to be praying it will stop soon, to be wild with fear, wondering if you should run and get the emergency medication which must be administered rectally for seizures that last five minutes. Nigel’s most recent seizure lasted an agonizing four minutes.

And all of them were triggered by screen time – either watching movies or working on his computer. So now, we’ve had to adhere to a new house rule – no screen time after 9:00PM. And for a sixteen-year-old who has loved watching movies all his life, that’s really hard. With all the difficulties he deals with throughout his day, he always had his evenings to relax and do his favorite thing. Now that has come to an end. He can still watch movies, of course, but he has to schedule them so they end by that time. The time when his brain starts misfiring and he is more susceptible to the trigger of images on a screen.

I tell myself that at least there are the two constants of the trigger and the time of day. I tell myself that chances are good he won’t have a seizure while he’s riding his bike to school or taking a shower. I tell myself these things, but the 24-hour EEG he had recently tells us differently. The results indicate “frequent, random” spiking, and his neurologist warns that he could have a seizure at any time of day, in any activity. Nigel started taking an anticonvulsant medication recently, and I’m hoping that as the dosage gradually increases, he won’t experience any of the negative side effects associated with it (among them, dizziness and double vision – not good for those who ride bikes and take showers). Per his doctor, Nigel can never take a bath again, something he had always enjoyed.

The diagnosis of epilepsy, which affects 25% of people with autism, has been a difficult blow for us. As with his autism diagnosis nearly fourteen years ago, our lives are forever changed. I find myself, as I did so long ago, diving into books and searching websites (at least there are those this time around!) and contacting my wonderful blogosphere friends who have lived with their children’s epilepsy for many years. They have been such a comfort to me as I navigate this new territory in special needs parenting.

*

A few nights ago, I awoke to the familiar, unwelcome sound of thumping against Nigel’s bedroom wall. I bolted out of bed, somehow had the presence of mind to glance at the clock (3:15AM), and ran out into the hallway.  It’s a horrible way to wake up – shaking, adrenaline pumping, heart pounding, leaping out of bed. But worse was the realization that he was seizing in his sleep, which had not happened before. I opened his bedroom door and turned on his light. His body had stopped convulsing, which was good (this one lasted less than a minute), but he was on the edge of his bed with his arm hanging down to the floor. His breathing was heavy, but regular. I waited to make sure he was fine, and then, not sure what else to do, I dragged my still-shaking self back to bed. I tossed and turned, unable to sleep the rest of the night. I debated if I should tell Nigel and ultimately realized that I should. For one thing, I consider myself very blessed that I can tell him, that at his age and level of development, he can comprehend what I say. And I want him to know as much as he can about his seizure disorder and how it affects him.

In the morning I go to his room and sit on the edge of his bed after he’s woken up. Gently I say, “Nigel, you had a seizure last night in your sleep.” Immediately he says, “No, I didn’t.” I tell him that I heard thumping against the wall last night and came in and found him on the edge of his bed with his arm hanging over the side and his eyes moving under the lids. “No, I was just having trouble sleeping and was rolling around in bed. I remember when you came in and turned on the light, and I was just trying to keep my eyes shut so you wouldn’t know I was awake.”

Relief washed over me. Thank God! He didn’t have a seizure in his sleep. And thank God I decided to talk to him about it, and he could tell me, or I wouldn’t have known, and the worry would have plagued me. Oh, the worry will still plague me for many reasons, of that I am sure. No doubt we will face plenty more hurdles as we continue our journey with autism and epilepsy. But at least for now, sleep is still sacred, and seizure-free. I am hoping it will always be so.

(image courtesy of Wikipedia)