A Story of Epilepsy

The following story is true. This is one of those "the names have been changed", etc.

"On March 20, 1983, my son was seven years old. He was home from school, sick with a bit of flu... nothing serious, just a low-grade fever and some intestinal problems. At any rate, he was lying on the window seat in his room while a friend of mine and I were in there, straightening up and keeping him company. All of a sudden, he was glassy-eyed, turning blue, and shaking violently. What the hell was happening? Had my son choked? Was he dying? I screamed at my friend to run get my husband from next door. Within moments, he was there and uttered those first damning words, "he's having a seizure".

A seizure. With those two words, our lives had changed irrevocably.

You have to understand, I had never in my life witnessed a seizure. Knew nothing about them. I can look back now and say "this is what happened" or "that was wrong", but I was ignorant and helpless at the time.

The next four days and nights were events from some twisted nightmare.

My son (we'll call him "Michael"), my 7 year old little boy was immediately admitted to the hospital. The room into which he was placed had a tape-wrapped tongue depressor attached to the wall beside the bed. I have no clue why that horrified me so much that the memory stands out to this day, but it did.

My husband and I got about five hours of sleep each throughout that time. We had to constantly watch Michael so that we could alert the nurses whenever a seizure occurred. And they happened. Oh, God, did they happen!

They'll tell you that during a seizure, the patient is not cognizant of what's occurring. Not in this case. Michael was fully aware during each and every one. His seizures were usually violent, what they called at the time "grand mal". And he would scream "Mommmmmmy!"... I'd climb behind him in the bed and try to support him, keep him from harming himself on the rails of the bed.

A typical seizure will last just a few minutes. Not Michael's. His would begin "gently", then progress to the violent "grand mal" that most people associated with epilepsy. One particular seizure was going into 45 minutes before serious action was considered... An injection of Valium.

The nurses couldn't get a hep-lock in due to the spasms, so they ended up shooting the Valium straight into his vein. I'm told that it's like liquid fire. All I know is that his screams pierced my heart. Later I would ask myself "why didn't they simply insert one upon admittance". Hindsight is 20/20.

And so those four days passed... Either my husband or myself drowsing on the uncomfortable little sofa while the other was beside Michael's bed. Neither of us slept much, too frightened to consider it.

During that time, he had an average of probably 3 seizures a day and was put through the typical gamut of tests. It was finally decided that he did, indeed, have epilepsy. It was the neurologist's opinion that Michael had had an encephalitis-type virus and that the seizures would shortly disappear. He prescribed Dilantin for him and we all went home.

You know how when you're really tired, you experience those annoying jerks? They're called hypnic jerks and are a type of myoclonus. It seems that the more tired you are, the worse they are... neatly keeping you from the rest you so desire. That's what it was like for us when we all finally reached our beds. A few days of rest and we were okay in that respect. Now, our lives had simply adopted a new surreal aspect. Simple? Not really.

With the use of AEDs (anti-epilepsy drugs), there comes a new term called a "level". It determines how much of the drug is in the body's system at any given time. "Trough levels" are usually the go-by. It's a blood level drawn and measured during the period of time just before a dose and defines the lowest level of the drug present.

The liquid Dilantin that Michael was prescribed was difficult to keep properly maintained. We gave him his doses religously at 6am and 6pm. Hell, we even set an alarm to make certain they were never a second late, much less missed.

After many adjustments, we finally DID maintain a proper level and, after some time had passed (I doubt if it was a year), our GP told us to simply stop giving him the Dilantin... which caused Michael to seize. We put him back on it. Sometime later, again the GP told us to stop the Dilantin and, again, a seizure.

It occurred to my husband, a pharmacist, that something was wrong with this protocol and researched it (we had never before thought to question a physician's orders). Should a person without a seizure disorder take an AED for a certain period of time, then suddenly stop, they'll have an episode. It's just the nature of the beast. So, when Michael was nine years old, we slowly eased him off of the medication and everything was fine. The seizures seemed to have stopped and life returned to what it should be.

During Michael's sophomore year in high school, he was sick a lot... complaining about his stomach and "feeling funny". He missed so much school that he was place on home bound... That's when the parent has to come to the school each day for the student's assignments and he has to go to school only for his tests. He had an upper and lower GI done, but all they could find was a potential duodenal ulcer.

Then, one day when we had gone to the grocery store, he was helping me load the bags into the car and he suddenly froze. I called his name and he answered in some sort of nonsense language. I said his name again with the same result. Finally after a few seconds that seemed to last forever, he was back to earth and tired.

In October of 1991, I took him to a different neurologist than the one we had used years ago and she told me that what I described to her was a complex partial seizure. She prescribed Dilantin again and, again, we had difficulties maintaining a level. It was changed to Tegretol. The dosage had to be raised several times, but control was finally attained...

Until October of the following year when Michael had a tonic clonic (grand mal) seizure at school. That was the year that we all began our visit to hell. The months following that seizure were a time of constantly changing dosages with only temporary results. His doctor changed him to Depakote. Before it was realized that he wasn't going to achieve any control with it, he was taking the medication SIX times a day.

Looking back, I think that Michael's seizures probably never stopped when he was a child. In fact, I think that the first seizure we witnessed may not have, in fact, been his first. That maybe they were something that we didn't recognize as one. There was no literature out there for people outside of the medical community, so we didn't know that epileptic seizures were anything other than the grand mal people acquaint with the disorder.

Michael had been complaining for a year of "feeling funny" at times, but we all blamed it on his allergies (he's allergic to almost everything that lives, breathes, or grows). I now know that he was having seizures at these times... In other words, on a daily basis.

In March of 1993, I finally called the Epilepsy Foundation. I was hysterical. Michael seized almost every day, had gained A LOT of weight from the Depakote, and was severely depressed. We were exhausted and held little hope... We were at the end of our figurative ropes. The Foundation listened and gave us the name of two neurologists who specialized in epilepsy, "epileptologists", at two different hospitals, both within 150 miles of us. We chose one and were immediately granted an appointment. The doctor there has been a part of our lives ever since. In fact, I'd feel honored to call him "friend".

Doc changed the rates of the Depakote and had the seizures controlled right off the bat, but Michael continued to gain weight and developed tremors from the med, so it had to be changed. We went back to the Tegretol, but it eventually failed again. It was on to Neurontin, which made Michael sick. Felbatol was fantastic because it didn't slow Michael like the others, but the possibility of aplastic anemia wasn't an option... One last stab at Tegretol and it was back to Dilantin. Lamictal was added not too long afterward.

When we first met with Doc, he had spoken of the "new" surgeries being performed for epilepsy and that was a conversation that Michael kept with him always. He continually asked to be considered for it, but his father and I weren't ready for such a drastic step. April 8, 1995 changed that for us all.

We had all been asleep for some time when I awoke to a strange sound. My immediate thought was that one of the kids had left the tv on. I started to drift back to sleep, but something urged me to get up and check it out. It was 12:30 am.

I followed the sound into the living room and was jolted into action. Michael was lying on his back on the sofa having a seizure. He was spasming so hard that his body was jack-knifing off of the sofa at least a foot. He was cyanotic and, when I put my hands on him, he was icy cold. I tried and tried to pull him over on his side, ripping the loops off of his blue jeans, all the while screaming for my husband. Finally, we succeeded in rolling him to his side and fluids poured from his nose and mouth. He was still seizing 30 minutes later before I thought to call 911.

Several minutes passed and he became post-ictal (that's the stage following a seizure that can be quite similar to a mean drunk... at the very least, it's a time of disorientation and confusion) or perhaps the episode has morphed into a complex partial... I don't know. He was stumbling around with our support and touching things, his actions sometimes violent.

Another 25-30 passed and I called 911 again... seems they were having difficulties finding us. By the time the ambulance finally DID arrive, Michael was okay. He was just very very tired and had a severe headache. We sent them away.

That was the first of many, thus defining this new phase of Michael's seizures as "status epilepticus", seizures that don't stop. However, that first eerie episode made us know that our son was right, life couldn't go on like this. It was time for the surgery.

In August of that year, Michael was admitted to the hospital for a telemetry EEG. All went well and his seizures were identified as originating in the right temporal lobe. In October, the Wada Test results were definitive. His surgery, only the 4th to be performed in our state, was scheduled for December 11th and all of the doctors were quite positive about what the outcome would be. As I watched them roll my son down the hall, I didn't know if he would survive the surgery or if he would perhaps be somehow different from the young man I had raised and loved. But I knew without a doubt that whatever happened, it was the only choice we COULD make.

That surgery was 12 years ago now. Has he had any seizures since then? A few, but there was always a reason that his threshold had dropped.

ANY person can have a seizure under the right circumstances. One's susceptibility is called a "threshold". If a person is ill or injured or stressed unduly, that threshold can drop. An individual with epilepsy? You can pretty much bet that a seizure will occur when it happens.

The good new is that, so far, these episodes are few and far between... as much as two years have passed without one. The bad news is that they happen at all."

It is SO hard to live your life waiting for the other shoe to drop. It's like a constant knot in the pit of the stomach. And it doesn't affect just the person that has epilepsy... It affects the family and friends, work, school, and any social settings.

We need to educate people about it... take it out of the closet and put it on the table. So, let's do just that, people. It's time.