Monday, December 18, 2006

Epilepsy v. XBox

Over the years I have heard many stories of how caretakers can tell if their loved one is having or is about to have a seizure. Jack's story is the first of which I have heard where a lack of playing a video game has been cited. Now, through the combined power of Jacks experience, your post, and Google searches, you may make it possible for hundreds of children living with epilepsy to convince their parents to let them play more XBox games. Any time there is a pause in the sound of Covenant aliens (Halo) being destroyed, their moms should check on them!

It is really amazing that he is able to play. When I was younger, my refexes were so slowed from the Tegretol I was taking, that I was completely unable to play action games. It was not that I couldn't move the controls, but my reflexes were too slow. Like Jack, I now take Lamictal, and my reflexes are not impaired... in fact, so drastic is the difference that I often wonder if the medicine improves my dexterity.

This just hit me... If Jack can do well with one hand on an XBox control, I bet he could do wonders with the Wii controller - you only need one hand to use it!

Friday, December 15, 2006

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
Cluster absence seizures
Head droop seizures
Atonic Seizures (Drop Attacks)
Complex Partial again
Simple Partial again
Absence again
Droop again
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.


(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!"

Monday, December 11, 2006

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.

Thursday, December 07, 2006

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.

Monday, December 04, 2006


I have this blog set up on Feedblitz so you can get your posts via email. The link is the orange one on the sidebar... or, you can click here.

Sunday, December 03, 2006

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.

Saturday, December 02, 2006

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.