Kenny – ‘Rockin their Corner’

March 20, 1983: Kenny was seven years old. He was home from school, sick with a bit of a flu….nothing serious, just your typical kid’s stuff. He was laying on the window seat in his room while a friend of mine and I were straightening up and keeping him company. All of a sudden, Kenny was glassy-eyed, turning blue, then shaking violently. I screamed at my friend to run get my husband from next door. When my husband hurried in the door, Kenny was still shaking and Kenneth said, “He’s just having a seizure”. “Just having a seizure”… I felt like dying.

We took our son to the hospital where he was admitted for observation. During the four nights that we stayed there, Kenneth and I got five hours of sleep each. We had to constantly watch Kenny so that we could alert the nurses whenever a seizure began (there were several, usually at night).

Looking back now, I think of the gauze-wrapped tongue depressor taped on the wall by his bed and the vague responses from the medical team and think that, although I knew nothing of epilepsy and had no idea what was happening, they were clueless as well. Something that’s still true today in most of society. Scary thought.

Kenny would start out with a “light” seizure which would progressively get worse and worse, going through perhaps four or five stages, and that the seizures lasted a long time, one more than 45 minutes before it was stopped with Valium. Eventually, the physician put him on Dilantin and sent us home. It was the neurologist’s opinion that Kenny had had an encephalitis-type virus and that the seizures would shortly disappear.

It was difficult to maintain a stable blood level with the liquid Dilantin. We gave him his doses religiously at 6 am and pm… setting an alarm to make certain we were never even a minute late with any dose. Finally, we DID maintain a level and after some time had passed (I doubt if it was a year), the GP told us to simply stop giving him the Dilantin….which caused Kenny tostart having seizures again. We put him back on. Sometime later the GP told us once more to stop the Dilantin. Again, a seizure. It then occurred to my husband, a pharmacist, that the doctor was wrong in simply discontinuing the Dilantin, that the dosage needed to be slowly decreased (we had never before thought to question a physician’s instructions). At the age of nine, Kenny was seizure-free and off of the medication.

During Kenny’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 placed on home bound (that’s when the parent would pick up the child’s assignments each day and he only had to go in for tests). He had both an upper and lower GI done, but all they could find was a “future duodenal ulcer”. One day when we had gone to the grocery store and he was helping me to load the bags into the car, he suddenly froze. I called his name and he answered in some sort of nonsense language. Then after a couple of minutes, he was back to earth and tired.

I took him to another neurologist on Oct. 10, 1991 and she told me that what I had witnessed was a complex partial seizure. Dilantin was prescribed again. The Dilantin was difficult to maintain a level with, so his prescription was changed to Tegretol. The dose had to be raised several times, but control was maintained until Oct. 9, 1992, when Kenny experienced a tonic clonic seizure at school. The months after that were times of constantly changing doses with only temporary results, and then his AED (anti-epilepsy drug) was changed to Depakote with the same result. Before we realized that Kenny wasn’t going to achieve any control on this specific regime, he was taking the Depakote SIX times a day.

Looking back, I think Kenny’s seizures probably never stopped when he was a child, they merely changed to something unfamiliar. There was no available literature for nonmedical personnel, so we didn’t know that epilepsy was anything other than the grand mal seizure that most people consider epilepsy to be. Kenny had been complaining for a year of “feeling funny” at times, but we all placed the blame for that on his allergies (he’s allergic to just about everything that lives, breathes, or grows). I now believe that he was having seizures each of these times….on almost a daily basis.

I turned to the web in desperation and discovered something incredible… That there was a presence called the Epilepsy Foundation of America.

In March of 1993, I called the Epilepsy Foundation of MS. I was hysterical. Kenny was seizing almost every day, had gained A LOT of weight from the Depakote, and was severely depressed. We were at the ends of our ropes. She recommended two neurologists to me, one at Oschner’s and one at UMMC. When I called, the neurologist at UMMC said that he would see us almost immediately. He’s been our friend since April of that year.

Unless you’ve experienced both sides, you have no clue what a world of difference it makes to deal with people who actually understand epilepsy. The people at the Foundation and the Epilepsy Research Center at UMMC know that it isn’t “simply” a disorder. They understand the psycho-social aspects of it as well. They understand that it effects not only the patient, but the family and friends, the work place and school, EVERYTHING.

Our new neurologist changed the rates of the Depakote and had the seizures controlled right off the bat, but Kenny continued to gain weight and developed tremors due to the med, so his AED had to be changed. We went back to the Tegretol. After some time passed, it failed again. Then we tried Neurontin. It made Kenny sick. The Felbatol was fantastic for its lack of “slowness”, but the chance of aplastic anemia wasn’t an option. One last stab was made at the Tegretol. No luck. So, it was back to Dilantin. Lamictal was added on not too long afterwards……I think that I have the order of AEDs correct. It was a confusing time. So it was that Kenny was on “toxic” levels of two meds along with an antidepressant to help deal with the ill effects. It was also determined that we should watch for signs of suicidal behaviors.

When we first met with the epileptologist, he had spoken of the surgeries now performed for epilepsy. Ever since, that had been a conversation that Kenny kept in mind. He continually asked to be considered for it, but his father and I weren’t ready for such a drastic path. April 8, 1995 changed all of that and will be forever engraved in my memory.

We had all been asleep for some time when I awoke to a strange sound. My immediate thought was that the kids had fallen asleep again with the TV on. I started to drift back to sleep, but something urged me to get up and check it out. It was 12:30am. I followed the sound into the living room and jumped into action. Kenny was lying on his back having a seizure.

He was convulsing so hard that his body was jack-knifing off of the couch at least a foot. He was blue 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 from his blue jeans in my efforts. I was screaming for my husband the whole time. Finally, the two of us succeeded in rolling him over and fluids poured from his nose and mouth… Kenny was literally drowning.

He continued to seize for about 25-30 minutes before I thought to call 911. Several minutes later, he became postictal, but in a stage that was really more like another complex partial….it may have been, I don’t know. He was stumbling around with our support and touching things, his actions sometimes violent. Another 25-30 minutes passed and I called 911 again. By the time that the ambulance DID arrive, Kenny was okay, just very, very tired and with a severe headache….we sent them away.

He had four more seizures as violent and long, the last one being July 28, 1995. After that, Kenny had a seizure of some sort occurring about every two weeks. The first episode caused my husband and I to agree with Kenny, life couldn’t go on in this vein, constantly waiting for another seizure. Kenny went to Jackson on August 4 for a telemetry EEG and all went well. His seizures were identified as right temporal lobe. October 23, the Wada test results were proved that the procedure would be possible. His surgery was Dec. 11, 1995 and all of the doctors felt quite positive about the outcome.

I can’t express how frightening it was to watch the nurses roll Kenny down the hall that day. In my head were “Far Side” images of the doctors going in with an ice cream scoop and arbitrarily removing bits and parts of his brain. This was MY SON… Would he be the same person when he returned from the operating room? Would he somehow die on the table? To have these questions pinging across my brain and to know that regardless of the answer to those questions, we had no choice??? It’s a fear I wouldn’t wish on anyone.

The surgery was a moderate success. While it didn’t “cure” Kenny (our hope), it enabled him to have control on a single med at a “normal” dosage, a first for us. The recovery from the craniotomy was rough.

I don’t have great documentation of the years since that time in our lives. I know that there have been changes in meds here and there when seizures became active again. That’s the problem with epilepsy… there are no rules. Epilepsy can change with the stages of development any human transitions through. We know that. It can get better, get worse, or sometimes even go away. But a person can do this right and that and sometimes the seizures just start again of their own volition. It’s the dark shadow that has moved into our family room and refuses to leave.

Thanks to the fairly new Lamictal XR, not only are his seizures mostly controlled, but he feels better, more alert than ever before.

Life is tough. We all know that, too. For some people, it’s even tougher and for some it seems impossible. I was once asked how I do the things for Kenny that I do. My response was simple. He’s my son. How have we survived the incredible lows?

Individuals with epilepsy become socially isolated because the masses understand so little about it and it scares them. It’s a huge responsibility to ask young adults to take on someone in the situation that Kenny was in. The result is that most avoid the individual. Kenny happened to have an incredible friend who helped to carry him through, Charlie. Without that young man, I don’t know what would have happened with Kenny. Charlie made sure that Kenny had a life… He would drive 12 miles or more to pick Kenny up, take him another 12 miles or so to do something, then bring him back home. Charlie’s family has adopted Kenny as well, expecting him at any and all family events… and it’s a HUGE family!

In the midnight hours, music has been the balm to Kenny’s soul. He’s a self-taught guitarist and I could listen to him play for hours on end.

And there’s the Epilepsy Foundation of MS… I feel as if the women there moved the heavens to do whatever needed to be done to help us. Controlled or not, epilepsy will always be a part of our lives. I want to make certain that the EFM is always there for us and other families.

Recent cuts to mental health funding have caused the Foundation to lose its main source of funding. It’s my chance, OUR chance to give back to them. Kenny had always wanted to have some sort of music event to help the EFM and last year we had the first ever Rockfest for Epilepsy Awareness. We were able to raise a decent amount of money, mostly thanks to friends of mine and Kenny’s. Pretty good for a first year. More important than the money we raised, we were able to announce our presence to a few people who need us. We were able to raise our voices and scream “we’re here and ready to do whatever we can to improve your lives”.

This year we have Rockfest for Epilepsy Awareness 2011 and I’m excited because this year we have the most incredible musicians that want to make this the best music event possible. We have people across the country donating items to auction… even from the UK. There are so many in the various artistic communities that understand the task we’re undertaking in order to bring this much-feared disorder out of the darkness and myth that’s always surrounded it.

Saturday, November 12th, 2011… Write that date on your calendars. If we can’t rock the world, we’re going to at least rock this little corner of it and raise money for the EFM, raise awareness of what epilepsy is as well as who it affects, and we’re going to educate anyone who’s brave enough to take it on.

From my heart… Thank you to the Epilepsy Foundation of MS and the most incredible epileptologist in the world!