From The Adventures of Jack

So, imagine you are three years old. You started walking at 10 months, you have a great vocabulary for your age and you are just a little clumsy, just like Daddy. In other words, you're a rather normal little boy, going to pre-school, learning to be self-aware and independent. Then, one night when you are 3 1/2, you wake and your arm is asleep. So, you get out of bed and go tell mommy and daddy who are still watching TV. But your arm isn't just tingly, it can't move. It's paralyzed. "That's OK," mommy and daddy say, "it's just really asleep. Let's go back to bed." A month later, no one really notices when you seem a little sleepier, or a little clumsier in the mornings. After all, you are only 3 1/2. Then, one morning, something happens and then you notice that mommy and daddy are asking if you are OK. They've just watched your right arm start shaking, while your eyes were open but blank. It lasted only about 30 seconds, and you don't remember a thing, but mommy and daddy look concerned and schedule a doctor's appointment. The doctor makes you jump up and down, move your arms in funny ways, do some high fives, touch your nose. He says you are probably OK, but if it happens again, mommy and daddy should call.

It happens again. Almost three years later, you are now in Kindergarten, and it's still happening.

Jack is my son, and he has a seizure disorder. Most people know it as Epilepsy. The doctors think it is a particularly kind of Epilepsy characterized by continuous or persistent abnormal electrical activity during "slow wave" sleep. ESES - Electrical Status Epilepticus Sleep. It's the same as, or slightly different than (Doctors disagree), CSWS - Continuous Spike Waves During Slow Wave Sleep. Jack may also have Landau Kleffner Syndrome. ESES/CSWS is a component of LKS. LKS is typically characterized by a loss of the ability to express or understand spoken language - or both. Some people with LKS, ESES, CSWS don't have visible seizures. Jack has had them all. And it is clear that his ability to express himself verbally has been effective, though not severely. The Doctor hopes that Jack's left-handedness is evidence that maybe his speech is controlled on his right brain.

Since May 2004, Jack has had each of the following kinds of seizures - appearing approximately in this order.

Complex Partial Seizures (with Todd's Paralysis)
Absence Seizures
Simple Partial Seizures
Simple Partial with secondary generalization
Myoclonic
Cluster absence seizures
Head droop seizures
Atonic Seizures (Drop Attacks)
Complex Partial again
Simple Partial again
Absence again
Droop again
Myoclonic
Tonic-Clonic (First ever full body seizure was this morning)

Since May 2004, Jack has been on the following medications. Usually, when the meds are changed, we see 4-8 weeks without seizures, then they return and we increase or change the medication and get another reprieve (except one mediciation that made things worse). Anyway, here goes.

Trileptal
Trileptal/Lamictal
Lamictal
Lamictal/Depakote
Lamictal/Depakote/Keppra
Lamictal/Depakote/Klonopin

(4 uses of diastat (valium) - 2 in last week).

So, there are the basics. How is a Kindergartener supposed to learn to write when his right hand is weak and almost useless and he left is unsteady and shaky?

Want to know how a 6 year old with no fine motor skills in his right hand (can't even hold a small object) plays XBox. He uses just his left hand, controlling one joystick with his palm and tapping the buttons at the same time.

Want to know how to tell if seizures are returning before you actually start seeing them? He loses interest in playing XBox.

Right now the Doctors don't know what to do. We have increased the Lamictal again and hope to see results so we can all have a fun and seizure-free Christmas. Otherwise, we'll return to the Epilepsy Unit at Wake Forest to be left, once again, with no clear idea of what to do.

Finally, I grew up knowing nothing about epilepsy, other than jokes about "get the spoon!" (bad idea, by the way). It's amazing that so many people are living with this, yet apparently, Epilepsy just doesn't have the high profile of much less common afflictions - mostly because Epilepsy takes so many forms and is often not debilitating. But sometimes, it is.

Now, imagine you are 6 years old. You're having breakfast when both arms start seizing and your whole body goes rigid. Mommy lays you down on the hardwood floor because, well, the kitchen has hard wood floors and a rigid 6 year old is hard to carry to the carpet or couch. Now imagine the big seizure ends but you start having a lot of little ones and mommy takes you to the couch. She calls daddy and puts him on speaker phone while mommy goes upstairs to get the diastat to give you a rectal dose of valium. And you know that's what's coming. Your shoulder starts twitching, eyes are dilating. And undilating. And dilating again. The seizures aren't stopping. And daddy asks you "Jack, how are you feeling?" You struggle to get the word from your brain to your mouth. Then you answer, as you always do, "Great!" Because you don't remember when seizures weren't a part of your life. And you are "Great!"

Guest Blogger!

I have invited a guest blogger, Winston, to share his first-hand experiences with a type of epilepsy called Electrical Status Epilepticus Sleep (ESES) and the Landau-Kleffner Syndrome. Winston is an avid blogger and will be doing a series of posts and updates about his son’s struggle with the condition.

NeuroPace

I did a little additional research on Neuropace and their Responsive Neurostimulator (RNS) The company is located in California and they have one product, the RNS, that is currently being tested in clinical trials. This is the product description from their site:

The Responsive Neurostimulator (RNS) system is designed for the treatment of medically refractory partial epilepsy. The RNS system includes implantable and external products, accessories and tools.

Implantable components include the responsive neurostimulator (RNS) as well as depth leads and cortical strip leads. The RNS is a programmable, battery powered, microprocessor-controlled device that delivers a short train of electrical pulses to the brain through implanted leads. In treating epilepsy, the RNS is designed to detect abnormal electrical activity in the brain and respond by delivering electrical stimulation to normalize brain activity before the patient experiences seizure symptoms. The RNS is implanted in the cranium and connected to one or two leads that are implanted near the patient's seizure focus.

Check out the brief description of the clinical trials that have been done. The device looks very promising.

A brief overview of the company can be found here.

Wake Forest University Baptist Medical Center To Test New Epilepsy Treatment

This is a new research study on experimental epilepsy treatement being conducted from the Wake Forest Baptist Medical Center (in my home town!) It appears that you can still enroll in the study. There is contact information at the bottom.

Wake Forest University Baptist Medical Center To Test New Epilepsy Treatment

WINSTON-SALEM – Epilepsy specialists at Wake Forest University Baptist Medical Center are testing an investigational device designed to control seizures in patients with epilepsy. The device is a responsive neurostimulator (RNS™ System) which is implanted in the brain, detects abnormal electrical activity in the brain and sends out electrical impulses to prevent seizures. Wake Forest Baptist is the only center in North Carolina, Tennessee and South Carolina to test the device made by NeuroPace.

“This technology offers new hope to patients who have not responded to other treatments currently available and continue to have seizures,” said William Bell, M.D., an epileptologist and principal investigator for the study at the medical center.

Unlike the vagal nerve stimulator, another implantable device to treat seizures, the RNS treats the exact area of the brain affected by seizures. These are often areas of the brain that cannot be safely removed by epilepsy surgery. Patients are unaware of the electrical impulses used to control their seizures.

To enroll in the study, patients must be between the ages of 18 and 70 and have had an average of three seizures per month for the last three months, despite being treated with medication for partial epilepsy.

Over 240 people will be enrolled in the study at 28 medical centers nationwide for a two- to three-year period. Patients will be asked to keep a diary of their seizure activity and use a laptop and data transmitter to send information from their device to neurologists at Wake Forest Baptist to analyze.

The device is surgically implanted in a patient’s head by Steven Glazier, M.D. a neurosurgeon at the medical center, and can be turned on and off by the patient’s neurologist. For the first four months, 50 percent of patients will have the device turned on and 50 percent will have their device off. Researchers will track each participant’s progress during this phase. For the last 18 months of the study, all patients will have their device turned on and will record their health status on a routine basis. Patients will continue to receive their current epilepsy treatment while participating in the study.

“In order to determine if the device is effective, we have to turn off the devices in one group to compare with the group with the devices that are turned on,” Bell said. “After a four-month window, then we will turn all the devices on and see what the benefit to the patient is.”

“We hope this will be a new option for patients with epilepsy who continue to have seizures,” Bell said.

Other colleagues participating in the study include: Neurologists Cormac O’Donovan, M.D., Maria Sam, M.D., and Mary Campagna-Gibson, M.D. Jo Shuping is the research coordinator for the study.

For more information about the study, call Jo Shuping at 336-716-8694.

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Off Topic: A Knock on the Duir

I rarely post anything like this little gem. But the artwork was pretty cool and the poetry inspiring. Check out: A Knock on the Duir
I found it in a post at the VNS Message Board.

Sharing Our Days

Sharing Our Days is a blog dedicated to helping people with ongoing health conditions, including epilepsy. There is a small community and a collection of blogs for many different contitions. Check it out.

Verge of spiritual epilepsy

I always check out what people search for in order to get to this website. Recently someone got here by searching baptists epilepsy. Along with this site, a number of others were in the search including the letter to the editor of The Baptist Message. I have read over the message post several times, but am completely confused as to what the writer is trying to convey, much less how this relates to epilepsy....

Verge of spiritual epilepsy
August 25, 2005
Southern Baptists are on the verge of spiritual epilepsy! The reason is the decrease in baptisms.
When two people love each other, the normal result is children. Let us give up the fightin’ and learn to love each other. Then, the world will say, “Behold, how they love one another” rather than “Behold, how they fight.”
If we exalt Jesus and his love, he will draw the people.
Roy Remont
Hot Springs, Ark.

Jeanne A. Carpenter Epilepsy Legal Defense Fund

The Jeanne A. Carpenter Epilepsy Legal Defense Fund was created to assist people living with epilepsy with legal matters related to the condition.

They have a page where you can submit questions and review a FAQ about legal questions related to epilepsy. In addition, it appears that you can submit requests to have them help you find an attorney with experince with epilepsy matters.

Man arrested for having a seizure

This article from ABC is absolutely insane. A guy got tasered and beat, when the police tried to arrest a man who was having a seizure. It is very sad that the level of epilepsy awareness is so low in this country. Here is a brief excerpt from the article.

Undersheriff Michael McCabe of the Oakland County Police Department said that the officers tasered Beloungea because he lunged at one of them. Beloungea and his lawyer say the more police got physical the more Beloungea got agitated and aggressive — typical behavior, according to the Epilepsy Foundation of America, for a person restrained while having a partial complex seizure. Beloungea's wild motions and inability to communicate were not defiance or resistance, but classic symptoms of epilepsy


The officers put Beloungea in jail, citing assault of a police officer and resisting arrest. Throughout the incident Beloungea, was wearing a medical alert bracelet identifying him as an epileptic, stating his name and the contact numbers of people who can be reached in case of an emergency.

U.S. National Election v. Epilepsy

I got this info in an email update from the Epilepsy Foundation:

The Epilepsy Foundation is particularly pleased that Rep. Steny Hoyer (D-MD) has won election to be the House Majority Leader. Rep. Hoyer and his late wife Judy Hoyer (who once served on the Foundation's Board of Directors) have been steadfast champions for epilepsy and other disabilities. The Foundation will be counting on the Majority Leader to carry forward the agenda for restored funding the Centers for Disease Control and Prevention Epilepsy Program, restoration for the American with Disabilities Act and a commitment to research to find a cure for epilepsy.

The Foundation is also pleased that Ed Perlmutter (D-CO) will be serving in the House of Representatives. Representative Perlmutter has a daughter with epilepsy and has been an active member of the Epilepsy Foundation of Colorado.

Many other supporters of epilepsy from both the Democrat and Republican parties will remain in key positions like Senators Specter (R-PA) and Harkin (D-IA) and Representatives Ferguson (R-NJ), Lewis (R-CA), Wicker (R-MS) and Abercrombie (D-HI).

Cyberonics CEO & CFO Resign

The CEO and CFO of Cyberonics resigned. Cyberonics is the maker of the Vagus Nerve Stimulator. The resignations come in the midst of investigations into stock option back-dating. It is unclear how these investigations will affect the company... but stock prices are up. Check out the article.

Welcome United Kingdom!

I've gotten a ton of hits from the United Kingdom over the last few days, so I thought that I would show my gratitude and fly the Union Jack for a day!


The National Epilepsy Society is the largest epielpsy based chairty based in the UK. They have an epilepsy FAQ page that has a lot of information on a wide varity of epilepsy subjects. Has podcasts too!

No more seizures

I have not had any more tonic-clonic seizures since the last one I had at work. Since then, I printed out about 200 seizure first-aid cards and the director had them passed out to all of our staff. Hopefully if I have another one, my co-workers will be better prepared to take care of me. That, and another 200 people will have received detailed information about taking care of people who have sizures. I'm sure they will run into more than just me...

The Connection of Mankind

I found this interesting poem on the Epilepsy Ontario website. Hope you enjoy.

The Connection of Mankind

By Daniel North


I remember chasing the aura
Being weakened at the limbs
In the fading world that surrounds
Memory is now living on empty whims.

Convulsing violently as the mind suffocates
Into the hand of a neurological reverie
Constantly running around in a field
It seems a lifetime since my mind was clear.

I can not remember half of my life
Where did I get this scar?
Must people run in fear
Just because of a cruel stigma?

I'm so petrified to look at the light
There's panic erupting in my chest
I need to overcome this disorder
As I juncture towards rest.

I've had so many EEG's and scans
What is real or what is a side effect?
We just need to forget the dark ages
And learn for mankind to connect.

Daniel North has more of his poetry online at his website: New Dawn Poetry

Increase seizure activity

In the last couple weeks since I had a tonic-clonic seizure, I have noticed that the number of aura-seizure events have increased some, although nowhere near as high as they were before my VNS. Possibly I have not been getting less seep than I should. Probably from taking my meds too late in the day. I'm going to definitly try to rest a lot this weekend.

I 'm going to do a week or so of the more "popular" posts on epilepsy over the next week. There are certain searches that people do that take them to a number of key posts. Re-posting will just make it a bit easier for them to find the info.

Vote

Although most polls in the East Coast of the US have closed, there are probably some still open in the West Coast. If you have not voted yet, please consider voting for a canidate that supports federal funding for epilepsy research.

As if I didn't have enough to do...

Ok... so I started another blog... on antique furniture. I know, not exactly exciting stuff. But I find it interesting. This blog is exclusivly on the furniture of George Hunzinger. So, unless you have some great desire to learn about American furniture manufacturers of the Victorian era, you may just want to skip it. If you do like pictures of cool antiques, click away!

Dispelling Myths About Epilepsy

Yesterday I was asked a few questions about my epilepsy. One lady was concerned that the screen-saver on her computer may have caused me to have a seizure. Another lady thought that a piece of candy she gave me may have caused the seizure. Both fortunately were false. Although flashing lights within a certain Hz can cause some people to have seizures, the moving screen-saver she had would not meet the criteria. As for candy, I have not found any information on candy ever causing seizures.

Feedblitz...

Ok. At my wife's insistance, I set up my blog to run Feedblitz so she can get her posts via email. Anyone else may also to subscribe. :) Currently I have the sign-up thingy down on the far right sidebar. Please let me know if it does not work!