What do you know about epilepsy?

[my3dogs]

Not canine...but the human variety.
 

[Nina]

I know a little bit about it. But not a whole lot.

[Summer]

Children diagnosed with epilepsy frequently outgrow it.  There is also a diet that has helped children overcome it.  My sister has seizures, not triggered by epilepsy but because of a high fever as a child, so I understand how scary it is.  You can email me directly if you like.

Tina

[newflvr]

I don't know much about the human variety, but I know there are online support groups.  Cowboy, obviously, has the canine version, and there are great groups for us.  He's also on human meds, so am somewhat familiar with the medications. 

Maybe do a search and join one of the support groups!  They have been SO helpful with dealing with Cowboy!  I know how awful and scary seizures are  and you have our love and support if you are dealing with it with someone close to you!

[Leah-n-boy-os]

My 9 year old son is an epileptic.

It all depends on which type you are referring to: Grand Mal, Petite Mal, Absence, Cluster... This list is pretty long.

Jon has Absence Seizures. Difficult to detect, and hard to treat, as there are some in the Medical community that refuse to accept them until you pull the tests out in front of their nose. Luckily, my son's neurologist is one of the best, and Jon's are pretty much under control with Meds and sleep regulation. (The sleep is MOST important, as deprevation is a main trigger.) Jon was first diagnosed at the age of 1 1/2, so it's been a long road for us. The good news, he lives a *pretty* normal life, and there's a darn good chance of the disorder "remissing" at Puberty. Granted, the likelyhood of it coming back in his 30's is almost guarenteed, but we try not to dwell on that.

Jon is on a great medication called Tegretol, it's one of the best for children....no zombie effect like Pheno.

If you need more information, a sholder to cry on, an ear to rant against, shoot me a PM and I'll be there. It's frustrating, the look in your baby's eyes makes your heart hurt, and it seems some days that you just want to run away....but the good days are just around the corner, and they make it all worth it.

[Summer]

What are absence seizures like?  When my sister was first diagnosed (20 years ago) we thought there were only Grand and Petite Mal...which is all she seemed to have.  In the past year it has been changing and we were told she was having partial seizures.

She was on Tegretol when she was younger and I do believe it worked for her at that age...not sure what she is on now.

[NoDogNow]

A friend of mine developed epilepsy in high school, so I know what I learned from him.

There are different kinds of epilepsy; the two I'm familiar with are petit mal (more common) and grand mal.

Petit mal seizures are sometimes not even visible to people who don't know someone is epileptic--the person seems to just zone out, or maybe their eyes go unfocused and their eyes may seem to roll.  This incidence can last from a few seconds to several minutes; I've heard that it can last longer, but I've never seen it happen.  However, if you happen to have a petit mal episode while you're doing something attention critical, like driving, it can be EXTREMELY life threatening to you and people in close proximity to you.  That's why people with epilepsy can have such severe driving restrictions unless their doctor can show that their medication is preventing episodes over a substantial period of time.  It varies from state to state what the time frame is. 

Grand mal is what most people think of as epileptic fits--people falling down or shaking uncontrollably, biting their tongue, etc. 

Epilepsy can be caused by a lot of factors, but the most common ones include genetics, drug abuse, and physical trauma, or more usually, a combination of these and other things.

Most of the time epilepsy can be readily controlled through medication, and very occasionally, when there's an actual physical lesion in the brain, thru surgery.  That's what happened with Kevin; his seizures were much improved after his second surgery (the one to revise the lesion), and since then he's only had a handful of minor petit mal episodes, always related to his meds--a change in prescription, or missed doses, that kind of thing. 

It can take a long time to get epilepsy under control, but once it is, most people are able to manage it very successfully for the rest of their lives.   If the seizures are grand mal type, the people around the patient will need to learn how to help protect them during the seizures--making sure their airway stays open, making sure if they flail that they don't bang their head against a hard surface, that kind of thing.  It can be REALLY intimidating to kids, but if it's approached with confidence and facts, it can be handled. 

[Leah-n-boy-os]

What are absence seizures like?  When my sister was first diagnosed (20 years ago) we thought there were only Grand and Petite Mal...which is all she seemed to have.  In the past year it has been changing and we were told she was having partial seizures.

She was on Tegretol when she was younger and I do believe it worked for her at that age...not sure what she is on now.

Absence seizures are very different from the Grand and Petites. They differ from person to person, but here goes.

Instead of the standard collapse and convulsions that you expect with the other types, Absence means exactly that. One  minute they're there....talki ng, drawing, riding a bike...and the next they're gone. You'll talk to them, but the vacant look is there. There's no responce to outside stimuli, be it verbal or touch. Sometimes, they'll tremor, (Jon does, as well as his tounge will twitch in his mouth.) other times they'll have a repetative motion. (Like ear-rubbing or finger tapping) They can last anywhere from 2 to 15 minutes, most times, their body will stiffen, some people will collapse, but not frequently.

Just like the other types though, there will be time-loss, meaning they will have no memory of what happended. Jon will pick up the conversation at the exact moment he "left", even in the middle of a word. Moving them during the episode creates severe disorientation and panic, so it's important that if they are not in a dangerous spot, to leave them be until they recover. Sometimes talking to them during the episode will help them recover quicker, but there's no conclusive proof that this is the case.

The good thing about this type, there's a better chance of it remissing when they hit puberty than the other forms of the disease. They don't know why this is, but I'm for one not going to argue with it.

For the most part, Jon lives a completely normal life. He rides bikes, has a tree house, and goes on fishing trips with Mom. He can't play certain video games, and all movies have to be pre-screened (flashing/strobe lights and certain "movie magic" are triggers for seizures) but other than that, he's not too put-out by the whole problem.

He takes his meds in the morning and evening with his meals, and has medication at school for the "just in case".

[Summer]

Hey Thanks!

Interestingly enough I think my sister has run the gamut in terms of types of seizures she has had.  The absence seizure sounds like something that she had the last time she had an episode, we had never seen anything like it before.  Her doctor is very good, but seems more interested in approaching her problem with surgery, I know it can be very helpful to some, but he's not even that confident that it will help her.

Do you by any chance know of a good website or discussion group about epilepsy that you could recommend.  I'm also interested in the cluster seizures which is probably what she had last fall...where she would have a number of petit mals in the space of a day or two.  Always at the same time of the month, which is something that we found interesting but her doctor doesn't care about.

[Leah-n-boy-os]

WOW! It sounds like your sister nneeds to find a new Doctor!! I would think it VERY important that she had that many in such a short period of time, and at the same time of the month!

I've got a couple of great info sites bookmarked at home, when I get there this evening, I'll PM you with some links.

Seriously, your sister needs to find a second opinion! It can never hurt, and more often than not, can do tremendous good!

[my3dogs]

Here's what I know about people on bigpawsonly.co m.....
You are all so wonderful!   Thank you for the responses.  Without even knowing what I might need you've offered friendship and support. Thank you.

Here’s why I asked….

At the beginning of Oct I went to Dr. to discuss tiredness & the fact that I had fallen asleep while driving.    She restricted me from driving and ordered a sleep deprived EEG.
The EEG took about an hour and was finished by noon.  At 1:45 my doctor called to tell me that they found an area of my brain with increased electrical activity…an area that is causing seizures.  I was scheduled to see a neurologist the following morning. 
The neurologist ordered a 24 hour EEG. Basically there is an area on the left side of my brain that repeatedly showed up on the eeg as abnormal electrical activity.  Left untreated the area will expand, cause more seizures and overtime will damage my brain in irreparable ways.   The doctor compared it to taking a sharp knife and dulling it over time.
Treating with meds can control the seizure activity and keep the problem area in check. The medication process is trial and error until the right med and level is found.  I started taking a med at a low dose and will ramp up over the next few weeks as long as there are no issues. 
I'm scheduled for a MRI on 11/7 .....well...it was 11/7....they called this afternoon and rescheduled it for tomorrow morning. 
This test will look at the problem area in depth.  Hopefully all they will see is a normal brain. The next likely thing would be a congenital abnormality that is just showing up now or even scar tissue from a prior injury/accident.   Lower on the list are things like tumor, stroke, & cancer. 
Maine law states that a person being treated for seizure disorder cannot drive until 3 months after their last known seizure.    The last one that I was aware of happened on Oct. 15. 
Fortunately I am able to work from home for the next few months and my husband is my willing driver for errands.
Although he did mention that he's been to walmart more times in the past few weeks than in his entire life.   


 

[newflvr]

Wow!  What a story!  Please know that you have our support and will be cheering you on to get only good news.  The meds are so much better.  My only experience is with Cowboy but he's gone from having full blown grand mal seizures daily to have NONE since June!!!  I'm sure you'll get on a good med and never have to think about it again!  Thank heavens you have a good and understanding hubby!

[Leah-n-boy-os]

Well, bless your hubby!! What a sweetie!

I can imagine how scary this is for you and him right now. Do you have any warning that the episodes are coming?

My son can usually tell about 10 minutes before-hand. In his 9 year old vocabulary "Mom, my head feels dizzy". He knows when that hits that he needs to stop whatever he's doing and head for a place he can lay vertical. Not so much for during the episodes, but for afterwards. He's very nauseous, and absoltely exhausted after one hits. He'll go to sleep for at least 8-10 hours after one hits.

Here's a funny - My son's Doctor, in order to describe to Jon what was happening in his head when all this is going on:

Jon, think of your brain like a car's engine. (my son's big into cars/hotrods!) What you have is a sparkplug problem. What we're going to do, is use this medicine to fix your sparkplug.

Best of luck to you, and again, if you need a sympathetic ear...we're here.

[NoDogNow]

That's a very scary thing to be told!   I'll join the chorus that if you're not 200% confident in your neurologist, you should get 2nd, 3rd, 4th, even 20th consultations until you find someone you completely trust is interested in helping you live as healthy and whole a life as possible. 

In your spot, the thing I would want to know as soon as possible is what's triggering these episodes of abnormal electrical activity.

Here's why:  I get migraines, sometimes several times a week.  I've had several cycles of agressive testing, trying to lock down what's going on with my headaches, because they can be downright disabling.  The testing has revealed what some of the "triggers" are that result in my having a migraine--not all of them, but many of the most common ones.

Knowing what some of the triggers are helps me eliminate or mitigate. For example, one very quick trigger for me is smoke--my parents had to give up the fireplaces in their house,  and I have to avoid smoke (cigs, pot, whatever); even campfires and barbecue grills can cause me to have to lie down in the dark with a hot pack on my head followed by a cold pack on my neck.  Fire season in California is miserable, to say the least. 

If your dr. can help you identify what's triggering your electrical anomalies, it will go along way toward giving you some control.  And feeling like you have some control is critical to avoiding depression.  Trust me on that.

You might also talk to your drs. about a service animal.  Some animals are sensitive to neurological disorders, and can give you some warning, sometimes quite early warnings, of an oncoming episode, like Jon is able to tell his mom that his head is dizzy. 

Stay positive.  You can work with this.

[my3dogs]

The MRI is the next step.   I'll be glad to hear I have a normal brain.  You can imagine the things I've been thinking.

As far as warning......n o, I don't have any. 
Imagine leaping ahead in time and the confusion that results if you are riding in a car and your surroundings are different.   One minute I was waving at a woman who had just picked up her mail ( i was a riding in the car) and the next there was a road where there shouldn't be.  I didn't recognize anything around me.  It took a few minutes for me to recognize where I was.   
We made an interesting discovery when we explained the situation to our children.  My 14 yr old son said, "Mom, is that why you don't answer me sometimes?"     After a lengthy discussion we discovered that my son has witnessed my seizures and assumed I was ignoring him.  How sad is that?   Poor kid. 
At least he's old enough to understand what's been going on.
The hard part is that if I'm home alone working on the computer and I have one I won't notice it.  If nothing changes around me then I won't notice anything other than some nausea and tiredness. 
One day at a time and tomorrow is the MRI.   Crossing fingers for a nice normal brain.