Non-Epileptic Seizures

Hi L.,

My son has petit mals and gran mals he hasn't had any in about 6 months but his medication is keeping them under control. He takes Keppra for them, 500 mg. Its the only medication that has worked. Before that he would have them once, twice or even more a week. Depending on how stressed he was or how much his migraines were acting up if he had skipped a meal any lil thing like the heat could set him off. Now its an occational petit mal every 6-8 months or so.
I was first told by his kindergarten teacher to get him checked out because he couldn't do one simple thing like Skip. She said children with neurological problems can't do basic things like that. So I had him checked out for a few fainting spells and the skipping thing and they said OH He's ok, if it happens it would be a fluke. Well a year and a half later it did happen and I was told it was a fluke and then it happened again and again and again. Until I took him to a new doctor and she sent him to a specialist.
It was hard. In the beginning you tend not to sleep much because you're at their bedroom door watching their every movement you tend not to let them out of your sight you're afraid something might happen while you're not watching, my son started with his at age 6 he's now 12. But with time and the right meds you relax more. And they get to lead a very normal life. Do what other kids do and its like nothing ever happened. Well until you have that occational one and you're back at the ER. But the kids bounce back so well. They're fine in a day or two you're the one with the shot nerves. So as you're watching out for him watch out for yourself, because I started faiting and flopping around like a fish out of water with all the medical problems I started having with my son around that time (he has other medical problems as well), and now they're thinking I'm suffering from seizures too.

Just know, it gets better. With time, it gets easier to handle.
Hugs
K. F.

Greetings L.~
I have 4 kids, my daughter is 7, my son is 6 and I have 14 month old fraternal twin boys. Non of my kids have seizures but I do. I was diagnosed over 10 years ago as having "non-epiliptic migraine induced seizures". They always occured before my cycle, would leave me very weak w/ a terrible headache and went away totally durring every pregnancy. It took over 2 years to find a Dr. who took me serriously. We were living in Bakersfield, Ca. at the time and we had Kaiser insurance and it was terrible!! None of their Dr.s would believe me and I was even told that I should seek counciling because what I was describing was impossible.
I had multiple EEGs, ECGs and blood work but the Dr I finally found tried out a few different meds and over time we found that virapamil (Calan) wroked as far as preventing the seizure. I still have the "aura".
While finding out possible control measures DMV took away my license so I was unable to drive for 2 1/2 years. I hope you are able to find what causes your child's seizures and are able to do something about it. It is such a helpless feeling to know what is about to happen and not be able to describe it so that someone can immediately help you. I simply tell people I work w/ that this sometimes happens, to let it pass and not to call 911. I don't know how I'd react if it ever were to happen to one of my kids...you're in my prayers.
B.

T http://www.epilepsynse.org.uk/PAGES/info/leaflets/factsne... I found the following information:

The words non-epileptic seizures (NES) are used to describe seizures that often look like epileptic seizures but which have a different cause. Unlike epileptic seizures they are not caused by changes in brain activity. NES can take different forms and can have a range of causes.

The term 'seizure' describes a sudden, short event where there is a change in a person's awareness of where they are or what they are doing, their behaviour or their feelings. The term is often used to describe epileptic seizures but there are many different types of seizure.

Seizures can happen for many different reasons. Some seizures are caused by conditions such as low blood sugar (hypoglycaemia), faints or by a brief change in the person's heart beat. Other seizures may be epileptic. Some people have more than one type of seizure. For example they could have both epileptic and non-epileptic seizures.

This may not help you all that much, but it may help those responding to understand just what your child has. ~J.

I have epilepsy and the only thing i can tell you is that I had an EEG and the neurologist said that there was seizure activity in my brain waves... what that means is that normally your brain waves look like say... a straight line and then all of a sudden it looks like a lightning bolt. This happens even when you aren't having a seizure. So i think that when they say he has non-epileptic seizures that its not happening in his brain all the time. I have gran mal seizures. I am on medication and it seems to be working fine. Just make sure you ask your doctor hundreds of questions and make sure you understand what he's talking about. Before i have a seizure i get a funny feeling and sometimes a really bad headache, so ask your daughter if she felt any of those things, Sometimes you may be able to know when one is coming on and make sure she's comfortable and doesn't get hurt when she has one. My dr's still don't know why I have seizures. They don't have any explanations for me and it can be frustrating, but you can live a normal happy life with seizures. I hope this helped a little. God bless ~ B.

my son has what I was told are called absence seizures. He is nearly 4 and we just found out last fall. I had no clue he was having them, we had just gone to see a neurologist for his speech delays and he ran an EEG. I almost cancelled the EEG I am glad I didn't because I would have never known. I still can't really tell when they occur or if they are happening at all.

Hi L.,

I'm not familiar with the term "non-epileptic", but am very familiar with epilepsy itself. My brothers and sister all have epilepsy. My oldest brother has never had a gran-mal seizure, but has petit mals; his eyes flutter to the back of his head and his speeech stops momentarily. My sister has both seizure types and my little brother has only Gran-Mals. I hope this helps.

There are several different disorders that cause seizure activity. My son has reflexive-anoxic seizure disorder, which are caused basically from an immature nervous system. There's a great website about it, www.stars.org.uk. This is too my knowledge one of the few groups actively doing pushing for more research. My son is supposed to grow out of his seizures, so we'll see. Good luck with your child!