Sharing the vision epilepsy: life’s turning point Gavin Dimitri

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THE EPILEPSY REPORT OCTOBER 2008

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                          THE EPILEPSY REPORT OCTOBER 2008

I

f you are reading this article, I 

assume that you are having problems 

with seizures or problems with side 

effects of medication. Take heart. You 

may feel like you are at the end of your 

rope, but most likely you are only at 

the end of your knowledge. In epilepsy, 

knowledge is power – and seizure 

control. 

In this article I am going to help you 

understand what epilepsy is and how it 

is diagnosed. The successful treatment 

of epilepsy depends upon an accurate 

diagnosis. You may be surprised to 

discover that for most children that 

diagnosis depends upon you.

I am sure you already know that 

epilepsy is more than just a medical 

diagnosis. Epilepsy affects the entire 

family. It affects the child’s development, 

social skills, and school performance. 

Here I will cover the basics, but you 

will find that understanding the basics 

can be very powerful in giving you 

more control and giving you back your 

family’s life.

The goal of treatment

The goal of epilepsy treatment is 

very simple: NO SEIZURES and NO 

SIDE EFFECTS. That’s it. In recent 

years, I have heard more complaints 

about medication side effects than I have 

about seizures (though I do hear plenty 

about seizures.) Treatment should not 

be part of the problem. Unfortunately, 

I have also discovered parents often 

do not bring up problems with side 

effects to the physician – or they barely 

mention them. Remember the physician 

does not live with you. If you do not 

provide full and detailed reports of the 

problems you are having, even the most 

expert doctor can’t make it better. Trust 

your own sense if you feel your child 

is overmedicated – and back it up with 

the clearest description of your child’s 

changed behaviors and appearance you 

can. If you feel the doctor is not listening 

to you, write your concerns down and 

hand it to the doctor. Keep a dated copy 

for yourself. You may discover written 

words get more response than spoken 

words.

The same is true for seizures. The 

physician needs to know in complete 

and accurate detail how many seizures 

your child has had and what type of 

seizures they were. Many children have 

more than one type of seizure, and it 

is important to know the time, date, 

number, and circumstances of each 

of them. Sometimes small changes in 

seizure patterns can give big clues to 

more effective treatment. If you go into 

the physician saying your daughter has 

“had about the same number as last 

time,” you aren’t providing the doctor 

with much help. Keep a seizure diary. 

Write both seizures and side effects 

down. Be sure to bring it with you when 

you see the doctor! There are several 

pre-designed seizure diaries out there. 

You don’t have to buy one, you can 

create your own. The important part is 

“do it.”

Robert J Mittan

Seizures and 

Epilepsy Program (S.E.E.)

www.theseeprogram.com

For  22 years, Robert J Mittan, PhD, has 

been helping people with epilepsy and 

their families. A clinical psychologist, he is 

recognized as one of the foremost epilepsy 

educators in the world. His work helping 

others has earned many awards and his 

research on epilepsy has resulted in new 

and important discoveries.

The S.E.E. program is designed to give 

people with epilepsy, parents of children 

with epilepsy and family members the 

information and skills needed to get the 

best chance of becoming seizure free – 

without letting treatment become part of the 

problem. 

Dr Mittan has presented this program to 

over 30,000 people with epilepsy and their 

families in Australia, Canada, New Zealand 

and the USA.

This article was published in Exceptional 

Parent magazine, Volume 35, Issue 6, 

pages 32-39,June 2005 www.eparent.com  

and is reprinted with permission. 

As the first of three articles forming 

S.E.E. Program Parents’ Manual, part 

2 addressing treatment options will be 

published in the next issue of The Epilepsy 

Report or you can visit the S.E.E. library at 

www.theseeprogram.com 

Beating bad seizures

 

part 1: diagnosis

Requests to the editor for more articles by Bob Mittan, 

confirms  that  his  frank  approach  to  understanding 

epilepsy  clearly  resonates  with  many  readers.  In 

response, The Epilepsy Report is pleased to present a 

further 3-part series called ‘Beating Bad Seizures’ which 

will  look  at  diagnosis,  treatment  and  what  to  do  when 

faced with difficult to control seizures.

What is epilepsy?

What is this thing we are dealing with 

called a seizure disorder or epilepsy? 

Epilepsy is the condition where a person 

has recurrent, unprovoked seizures. 

Recurrent means more than one. 

Unprovoked means that the seizures 

occur at a time when the body, and 

especially the brain are not clearly sick 

– there is no infection, stroke, or injury 

occurring moments before the seizure. 

The term seizure disorder is just another 

name for epilepsy.

What causes a seizure? Most people 

know seizures are due to an electrical 

disturbance in the brain. A lot of people 

have heard that a seizure is a “short 

circuit” or an “electrical storm” in the 

brain. I hate those explanations because 

they are wrong and they scare people. 

If you have ever seen a real short circuit 

in an appliance or wall plug, it is a 

frightening and destructive thing. POW! 

and a shower of sparks. The same with 

the example of lightning in a storm. 

Parents who hear those explanations 

are afraid seizures might be just as 

destructive to their child’s brain cells, 

with each seizure causing further brain 

damage.

Our brains do operate using electricity, 

but in very, very tiny amounts. Not 

only that, these small electrical charges 

stay inside each brain cell. The charges 

are much too small to jump from one 

brain cell to the next. Brain cells “talk” 

with each other with chemicals, called 

neurotransmitters, not with electricity. 

So what is a seizure in the brain? A 

seizure is like the “wave” you see in the 

stadium at a football game.  Normally 

everyone in the crowd is doing their 

own thing – talking, eating a hotdog, or 

questioning the referee’s eyesight. Then 

along comes a cheerleader who wants 

the crowd to do the wave. Suddenly, 

each person stops what he or she was 

doing. Whole groups suddenly stand up 

together and sit down again. The wave 

spreads from one group of people to the 

next until sometimes it goes around the 

entire stadium. That is what a seizure is. 

Normally brain cells are all doing their 

individual thing. Then something comes 

along that causes them to stop doing 

their individual thing and instead join 

with others to do the “wave.” Depending 

upon where this “wave” starts, how far 

it spreads, and how quickly the brain 

cells “stand up and  sit down,” you get 

different kinds of seizures. The brain’s 

electrical and chemical systems are 

required for the “wave” to occur.

Diagnosis

Differences in seizure types are very 

important. The medications used to 

treat seizures often differ for different 

kinds of seizures. If the seizures are 

not correctly diagnosed, the wrong 

medication could be chosen. So, the 

starting point for effective treatment is 

an accurate diagnosis. However, there 

are several real challenges in coming 

up with an accurate diagnosis. The 

biggest one is what I call the First 

Cosmic Law of Epilepsy. This law is 

“Thou shalt never have thy seizure in 

the doctor’s office where he or she can 

see it!” Most children are very good 

at obeying this law (they should do so 

well with some other rules, right?) As 

a result, the doctor must depend on a 

description of the seizure from family 

members who are inevitably frightened 

at the time – and who have no training 

in seizure observation! Often the doctor 

can guess correctly, but this is not a 

formula for diagnostic accuracy. This 

is not the parents’ fault or the doctor’s 

fault. We find on average that about 40 

percent of parents who go through the 

seizure observation training part of the 

S.E.E. program discover that their child 

has a different kind of epilepsy than they 

thought.

Seizure Observation

What should you look for when 

observing seizures? There are three 

important observations to make: What 

happened right as the seizure was 

beginning, what happened during the 

seizure, and finally, what happened after 

the seizure was over.

There are two main families of 

seizures. One of those families is 

generalized seizures. The electrical /

chemical disturbance begins throughout 

the brain all at once. There are several 

different kinds of generalized seizures. 

(See Table 1, Common Seizure Types.) 

Because the whole brain participates in 

the “wave” from the start, there is never 

a warning that the seizure is about to 

occur. It just suddenly happens. The 

second family of seizures is partial 

seizures. These seizures are called 

“partial” because they start in a specific 

part of the brain, not in the whole brain. 

Unlike generalized seizures, partial 

seizures can have a warning before they 

occur. Sometimes this warning is called 

an aura. Auras are actually a kind of 

seizure (called simple partial seizures.)

What happens at the very beginning 

of a seizure is often the most important 

thing to observe. Carefully watching 

the beginning of a seizure can give 

important clues as to whether the seizure 

is a partial seizure or a generalized 

seizure. This is important because the 

medications used to treat generalized 

seizures tend to be different from the 

ones used to treat partial seizures. If 

the diagnosis is wrong, it is easy to 

choose the wrong medication. In true 

generalized seizures, there is never a 

warning before a seizure occurs. Partial 

seizures, however, may have a warning 

rarely, often, or all of the time. Another 

clue that a seizure is a partial seizure 

is it starts in a specific part of the body 

or begins with an unusual movement, 

sensation, smell, emotion, or thought at 

the start of the seizure. The spot in the 

brain where the partial seizure starts is 

called the seizure focus. Since different 

parts of our brain do different things, 

what happens at the beginning of the 

seizure depends upon where the seizure 

focus is located in the brain. This 

means the first movement or sensations 

that occur at the beginning of a partial 

seizure are important clues as to where 

in the brain the seizure focus is located 

(See Figure 1, Seizure Focus and the 

Brain.)

Often the second most important part 

of the seizure to observe is what happens 

after the seizure. After certain types of 

seizures are over, the child is confused. 

It may take minutes and sometimes 

hours for the child to become completely 

himself or herself. This is called  post-

ictal confusion. “ Post” means “after,” 

“ictal” is the medical term for a seizure 

or event, and “confusion” refers to the 

fact that the child may temporarily not 

know where he or she is or what was 

happening right after the seizure. Post-

ictal confusion is caused by a temporary 

memory disturbance. Even when the 

child has returned to full consciousness, 

the memory disturbance can last for 

hours after. This can make things like 

learning in school or test taking difficult, 

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