- Dillon’s Pen and Ink Drawing for Art
We’ve come a long way baby! Years ago, epilepsy was a death sentence. They used to take epileptics to the city gates and stone them to death. We’ve grown from that to denial of rights. 50 years ago, epileptics were looked upon with fear and trepidation. They were denied jobs, houseing, and the right to drive. With good reason I suppose – at least on the driving aspect – if the seizures were not under control anyway. My uncles lived through a lot of unfair and prejudical behavior because of their seizures.
One was bi-polar on top of having epilepsy and commited suicide: throwing himself off the Peace Bridge in Buffalo when he was 36. The other died at 17 by mixing whiskey with his phenolbarbetol. Not having my uncles to learn from or to talk to is hard.
Epilepsy is a dirty little secret that no one in my family talks about. Until now. I refuse to label it dirty, and I refuse to keep it a secret. My son has seizures and I wanted to know why. I also refuse to allow this bump in the road to limit him. Laws are changing. People with certain types of epilepsy are allowed to drive, provided of course that their seizures are under control. With the advances made in medicine, controlled epilepsy is probable and achievable.
Dillon has ADNFLE – or Autosomal dominant nocturnal frontal lobe epilepsy, a very rare genetic disorder that is only now being treated properly. In the past, ADNFL patients were treated as psychotic disorders. These types of seizures can range from mild to violent in nature and occur while sleeping or just before awakening. They were believed to be night terrors or part of a larger psychiatric disorder.
ADNFLE patients do not typically test well, which is probably why we had such a hard time with finding the right medications and a proper diagnosis. The EEG’s and MRI’s tend to come back normal. The only way to capture a truly abnormal EEG is to undergo a sleep study while wired for sound and hope he has a seizure during that time. It took two studies to finally capture his seizures on tape. Seizure activity can be dormant for months at a time, and rarely if ever during the day.
Dillon’s diagnosis went from it is epilepsy to we have no clue, for years. The spans of no activity and the palsy like side effects in the morning threw our doctor off. It wasn’t until we went to the Children’s Hospital in Fort Worth last summer, that we knew beyond a shadow of a doubt that it was epilepsy and what kind. I’ve also found out there is a name for that muscle weakness he some times experiences. It is called Todd’s Palsy.
These are things I did not know before this year. But they are things I know now and I’m happy for that.
Today is a very special day in the O’Hara household. Dillon has reached his six month mark of being seizure free for the first time in over six years.
What that means is Dillon gets to learn how to drive and he could not be happier.
Deana O'Hara - Speaker, Comedian, Writer 
”J” while in the Autism Spectrum Disorder category really doesn’t fit into any strict model. His problems are unique in that all his symptoms lumped together have never been seen in one individual, ever.
The steroids did stop the outward manifestation of the seizures but he has one or two an hour that have no physical signs and wouldn’t even be noticed if he wasn’t hooked up to a EEG. He’s on another med now and it seems to be working. I can’t remember what med that it is this time as he is always on so many meds, its hard keep track.
“J” did the high fat / high protein diet as well with no real results. Right now mom and dad are even trying procedures out of the country. He just turned 16 and they are running out of time before his brain is fully developed. A parent has to try everything…
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Thanks Ted and Frank.
Frank, I’m sorry to hear about “J”. That has it’s challenges to be sure. I’m sorry to hear about the seizures on top of that. Wow. I cannot imagine that. St John’s Children’s Hospital has great luck with the Ketogenic Diet. Our dr would not approve it because Dillon’s seizures were not frequent enough. And oddly enough – Dillon pretty much eats the high fat / high protein diet on his own. he’s always craved that. 😉 His body knows what he needs to stabilize the brain chemistry.
With Dillon’s seizures, we’ve taken a trial and error route over the years, using (I am a horrible speller – sorry) We started with forms of Carpobenzepim, but that made him violent so we switched to Depekote, which worked for almost three years. We took him off of all seizure meds for 5th and 6th grade because his doctor believed he’d outgrown it, only halfway through sixth grade he had three breakthrough grandmal seizures in one morning, so it was back on Depekote again, only this time it didnt’ work as well.
We had to wean him off the regular depekote last year and that was scary. When I read about John Travolta’s son who died doing the same thing we were doing, at almost the same age – it really bugged me. But.. Dillon tolerated the switch to new meds rather well. The only down side to these meds is it has the potential to cause liver damage so he had blood work done every year.
After going to the Children’s Hospital in Fort Worth TX last summer – we are now on Extended Release Depekote (ER) and a new drug called Lamictal, They have had a lot of success combining those two and so have we so far. We also have him on Concerta for his ADHD. I honestly hate pumping that much medication into him, but he needs it right now.
Do the Doctor’s know what is causing J’s seizures? That does not sound like autism to me, but I could be wrong. Meaning, I’ve nevered heard of autism causing seizures. “Epilepsy” is really just a generic term for seizure disorder and it rarely travels alone. I’m thinking this child has both issues maybe? Did the steriods work?
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Deana, how are you folks controlling the seizures? Are there a variety of treatments?
My experience with a teenager with autism had the doctors prescribing steroids to keep his 30 – 40 seizures a day under some kind of control. I know that the autism spectrum disorders are not epilepsy but this has my curiosity up. “J” had to be on steroids for five or six years which caused some severe developmental issues. He’s now on a regiment of growth hormones to play catch up.
Glad to hear the good news about Dillon learning to drive.
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God’s blessings on you and your family.
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