SILENCING THE SEIZURES - FREEMAN/PILLAS

[Guest guest]

Has this been posted on here before? Can't remember, it is from another list,

but there is an interesting part in there about medications and the diet

sometimes needing reducing to gain control amongst other info.....

.

Epilepsy: Silencing the Seizures-- Freeman, MD, and Pillas-

- 12/04/03

By Freeman, MD

Pillas

WebMD Live Events Transcript

Epilepsy has many forms, but fortunately there are many treatments to

control it, including medications, surgery, and diet. We discussed

the options for keeping seizures at bay with neurologist

Freeman, MD, and Pillas, co-authors of Seizures and Epilepsy in

Childhood: A Guide.

Member question: My daughter is 11 years old and starting having

seizures when she was 8. She has tried six or seven medications that

have either failed or she has become toxic on. We are considering the

ketogenic diet for her. What are the criteria there for starting a

child on this diet?

Freeman: We recommend that a child have difficult-to-control

seizures, and the child must have failed at least two medications. So

your child sounds as if she might be a good candidate for attempting

the ketogenic diet.

Pillas: I would say that one concern might be her age. We try very

hard to build in rewards and some kind of system that will work for a

child who is attempting the diet and is discouraged by not being able

to have french fries and their favorite cereal. We have to find

alternative rewards to allow these kids to work in the framework of

the diet themselves. That's a big psychological issue and a big

component to the whole diet.

Member question: I want to bring her directly to s Hopkins. Is

there a waiting list there?

Pillas: Yes, there is a waiting list. If you are interested, you are

free to contact me for further discussion. Our phone number is 410-

955-9100.

Freeman: We have trained a number of other centers around the country

on doing the diet, and the diet is done well at some centers that

have not been trained by us. Ms. Pillas can often recommend a center

closer to the individual, so they do not have to come to Hopkins.

Member question: Are there any seizure types that would make the diet

less likely or more likely to be successful?

Pillas: I think in the early days of the diet people felt that

children with myoclonic seizures and drop seizures did better than

other patients. However, we have found in the more recent years that

we have had success with all types of seizures, and therefore are

willing to try the diet regardless of the seizure type.

Freeman: Let me add that people often think that if you start the

diet you can stop the medications immediately. This is not true. When

you go on the diet and your seizures are controlled, then one

medication at a time may be slowly discontinued -- again, under

medical supervision.

Pillas: If a patient is on many medicines, four, five, at the start

of the diet, frequently our physicians will discontinue or taper at

least one to start with.

Member question: What is your opinion of an adult trying a ketogenic

diet for simple, partial seizures?

Freeman: There are not a lot of studies of the diet in adults. It is

a more difficult diet for them to comply with. It might be a

reasonable thing for the patient to attempt under medical

supervision. The diet should never be done without supervision of a

physician and a well-trained dietician.

Pillas: I would concur. The other potential alternative, under the

auspices of the doctor and dietician, might be the Atkins diet.

Member question: How can the Atkins diet help with epilepsy?

Freeman: We do not know, and it has not been studied; however, we

have some patients while waiting to do the classic ketogenic diet who

have used the Atkins diet, not for losing weight, but for learning

how to restrict the foods they take. And during that process they

have had dramatic benefit for their seizures.

Member question: Is anyone studying the effect of Atkins or a similar

low-carb diet on epilepsy?

Freeman: We are planning to study it and are beginning to study it.

Pillas: At the appropriate time we would publish a report of that

study, but that will be a time away.

Member question: So you could use the Atkins maintenance plan?

Freeman: We do not know the answers to that or many other questions

about the Atkins diet, but we have had a small number of patients who

have initiated the Atkins diet, have had a dramatic response in their

seizures, and have continued on the Atkins diet and have never needed

the more formal ketogenic diet.

But I cannot emphasize strongly enough that this is a very small

number of patients.

Pillas: To be clear about it, as well, we have little knowledge about

their products and their effects on people with seizures, so there is

a lot to learn before we would say more about that.

Member question: What are the learning challenges associated with

epilepsy, and how does a parent best deal with them?

Freeman: The learning challenges are not of epilepsy per se, but they

are the challenges of children who have some brain dysfunction. This

can be severe brain dysfunction or minimal dysfunction or none at

all. The seizures themselves rarely interfere with learning, but the

brain dysfunction that cause the seizures may interfere, and the

medications you use for treating seizures may interfere with learning

as well.

The important thing is to be sensitive to whether the child is having

more problems learning when they start a new medication.

Pillas: To add to that, I would say that parents should be diligent

about their child's learning issues and address those specifically

with the classroom teacher, allowing them to know that the child does

have seizures, even if they don't occur in school. Some children may

have a learning disability aside from the epilepsy.

So it is important to work with the classroom teachers to identify

the child's strengths and weaknesses, to get the appropriate testing,

if necessary, to figure out how the child learns best, and then to

implement a plan that can be followed both in the classroom and at

home when the family is working with the child on educational issues.

Member question: My 7-year-old daughter with intractable primary

generalized epilepsy has either failed or had to stop seven

medications due to not working or side effects. She is not a surgical

candidate at this time. We have thought about the keto diet for her,

but she is lactose intolerant. Is there a lactose-free version of the

diet?

Freeman: Yes. We have had very good dieticians who can accommodate

almost anything. We have Chinese ketogenic, lactose free diet, and

almost any variation that you could ask for. You should talk with

your dietician before starting the diet so the dietician can tailor

the diet for your particular child.

Member question: Is it possible that seizure meds, such as depakote,

can cause more seizures? I just had all of my son's meds stopped

because he was on 2250 milligrams depakote and the higher the dose

the more seizures he had. Now he has none and he is sub-therapeutic

level of 5 on dilantin with no more seizures. He was up to 10 to 15 a

day.

Freeman: The answer is yes. Sometimes medications, as they get to

higher levels, can increase seizures. The only way you know that is

to reduce the level or eliminate the medication. Too many medications

given simultaneously may have the same effect. So it is not unusual

to see people who have fewer seizures on less medication.

Pillas: Parents know their children better than anyone else. So if

they believe or see that seizures increase with either higher doses

or medicines or with multiple medicines, or whatever the situation

might be, they should always feel comfortable speaking to their

doctor and asking to negotiate a change so that they can see if it

makes a difference.

One thing that I might mention, though, is to be cautious about

making too many changes too quickly. We see that as a problem very

often.

Freeman: That is a very important point. Often, medications are

changed too quickly, and new ones are added, so you never have the

chance to find if a medicine is working. Medications should rarely

either be changed or even increased more often than two or three

weeks; it takes the body that long to get used to a medication.

The other thing I would like to emphasize is that the management of a

child with seizures is a dialogue, or should be the result of a

dialogue, between the parent and physician. In the book that

Pillas, Eileen Vining, and I have written for parents, called

Seizures and Epilepsy in Childhood, A Guide, by the Hopkins press,

now in its third edition, has been very useful in helping parents

know more about epilepsy and what questions to ask of their doctors.

Pillas: While I know very well that parents are often frustrated

because seizures are not controlled quickly, it is a process, and

sometimes physicians feel pushed to make changes more quickly than

should be done, because they feel the need to be doing something

because parents expect it. It's difficult for all of us to be patient

if we are concerned about the child. So I caution everyone to try, as

best you can, and as difficult as it is, to take it a day at a time.

Member question: Is there a way to take elements of the keto diet and

make them work (i.e.: Will it help to introduce certain parts of the

diet to a child?).

Freeman: Probably not. The diet is very carefully calculated in terms

of its number of calories and in terms of its composition. We have

found that a few extra nuts or even suntan lotion may sometimes be

enough to change the effectiveness of the diet. Our experience would

suggest that you either do the diet very rigidly, or not at all.

Member question: I just had a seizure last night, and it seems that

every time I have a seizure it's during my sleep. Why is that?

Freeman: I don't think we understand why people have seizures at some

times and not other times, or indeed why people have seizures at all.

Some people clearly are prone to have them during sleep, some in the

early hours of sleep, some in the early hours of the morning. We

don't know why that happens.

Member question: My wife has been an epileptic since early childhood.

Her epilepsy is under control with the help of drugs like Epanutin.

She has taken 200 milligrams every day for the last 30 years. Doctors

have tried to wean her off the medication after every three to five

years, but her seizures come back. So she is on a continuous diet of

Epanutin and is symptom free for four or five years. I want to know

if she has to continue this medication and whether long-term use of

this medication will have any adverse side effects.

Freeman: If she has been on that drug for 30 years it is unlikely

there will be side effects. She can always try again, under medical

supervision, discontinuing the drug. If she has done well and not

having side effects, it would not appear the chances of having more

seizures outweigh continuing to take the drug.

Member question: Can epilepsy affect memory over time or would meds

be most likely to blame?

Freeman: That's a very complex question. Epilepsy, in general, does

not cause memory loss over time. Medications do not usually cause

memory loss over time, but too much of one medication or some

combination of medicine may cause memory loss.

If memory loss is occurring, that should be brought to the attention

of the physician and perhaps one or more of the medications should be

decreased to see if there is improvement in memory.

Member question: I have contracted a simple partial seizure disorder

via traumatic brain injury, co-morbid with attention defect. The

paradox I face is that the stimulants that allow me to function at

the level I view as acceptable trigger the seizures themselves. My

team of neurologists has told me that this is something I will just

have to accept if I wish to keep the level of cognation that the

stimulants give. Do you have any experience with a stimulant that is

more conforming to a person with a seizure disorder?

Freeman: In our experience, which is primarily with children, the

medications that are effective for attention deficit disorders do not

usually increase seizures. I think there are other drugs that are

effective for attention deficit that are not stimulants.

Member question: My child was tested in April to see if she was a

possible candidate for surgery. She had a four-day VEEG, PET scan,

and MRI. It was found that she was not a candidate. Have there been

many cases where the testing was done again at a later age with

different findings?

Freeman: I think that's a very difficult question to answer. In order

to be a candidate for surgery the seizures have to come from one area

in the brain, and that area has to be in a place that is safe to

remove. If your child has seizures coming from multiple areas or

sides of the brain, she will not, in the future, be a candidate for

surgery.

Member question: My daughter's last VEEG showed slowing in the

background consistent with diffuse cerebral dysfunction, generalized

spike, and poly spike discharges in combination with five frontal

spike discharges. Can you explain to me what this means? I have never

heard of diffuse cerebral dysfunction.

Freeman: Lots of children have diffuse cerebral dysfunction. This may

be due acutely to medication, toxicity, or infection affecting all

over the brain, it may be something the child was born with, or

development problems. All of these can cause dysfunction all over the

brain, called diffuse cerebral dysfunction.

You would have to know how the child got to this point and what

medications she was on before you could say anything intelligent

about her case. The diagnosis of epilepsy and the diagnosis of brain

dysfunction are not made on the basis of an EEG alone.

Member question: Why is it necessary for people with juvenile

myoclonic epilepsy to take medications if JME is a subtle form of

epilepsy?

Freeman: That is a very good question. JME, or juvenile myoclonic

epilepsy, is often characterized by just jerks of the body early in

the morning. These are subtle and often are not important, but they

may be a prelude to having a generalized tonic-clonic seizure. Those

bigger seizures are important, and therefore you need to treat both

the subtle and the bigger seizures with medication.

Pillas: On a more practical note, a reason to treat as well is that

one may not drive a car or have a license unless their seizures are

controlled, and that includes seizures that may occur only in the

early hours of the morning. So it would be important, particularly

for those of driving age, to be medically treated.

Freeman: Does every seizure need to be treated, ?

Pillas: I would say no, but then I'm not the physician. The

definition of epilepsy is two or more seizures, so the question often

arises, when a child has a single seizure, " Do they have epilepsy and

should they be treated? " There are different schools of thought, and

generally the philosophy in most epilepsy centers is that a single

seizure does not require medical therapy.

Freeman: In our book we talk about the consequences of seizures and

epilepsy. These vary with age. For example, an adult who has a single

seizure may not drive a car until they have been seizure free for a

certain time, which varies from state to state. So a single seizure

has more impact on the quality of life on an adult than it does on a

child.

Member question: In the summer my son, at age 14, will go through

tests for brain surgery, along with trying the diet. He is going

through puberty. He suffers with grand mal. Do you think puberty can

make seizure worse, and how do you feel about surgery?

Freeman: At puberty, one third of people's seizures get better, one

third get worse, and one third stay the same.

If your child is a candidate of surgery, if the seizures are coming

from one place in the brain that can be removed, that is the best

thing that can happen, because the seizures can be cured with

surgery. If it can't be removed, then you have to treat with

medication, because you have no other choice.

You mentioned trying the diet. I should mention that children who are

candidates for surgery rarely respond to the ketogenic diet.

Pillas: I would clarify that not all children who have brain surgery

are seizure free. There is certainly no guarantee if one has surgery

that seizures will all go away. That is an important thing to discuss

with the physician so that you have a realistic view of the potential

outcome if surgery is recommended.

I would add that this child's age might also prove difficult for him

to adhere to the diet because of its restrictions.

Member question: You said children who are candidates for surgery

rarely respond to the diet. Can you explain?

Freeman: Because the people who are candidates for surgery often have

a lesion. This can be a tumor, cyst, or maldevelopment of the brain.

Those lesions cause a more active kind of epilepsy and seem to be

less responsive to the ketogenic diet.

Member question: Before you close, can you tell parents of children

with refractory seizures if there's anything in the 'pipeline' that

we can look forward to?

Freeman: Ten years ago, when we wrote the first edition of our book,

we did not anticipate the number of new drugs. We were just beginning

to explore the ketogenic diet and its effectiveness. In our more

recent edition we've gone from a couple of pages on epilepsy surgery

to a whole chapter. Things are changing rapidly. Diagnostics are

better and therapies are better. It does not happen as fast as

parents or physicians would like, but enormous progress has been made

and more and more people are having a better quality of life than in

the past. There is much hope for the future.

Pillas: I tell parents all the time to draw an imaginary line and to

put a foot on either side of the line. One foot should always be in

hope, because if you don't have hope you don't have anything, and the

other foot should be in reality.

I think that we all agree that epilepsy is both a medical condition

and something that needs to be looked at as having a very clear

psychosocial impact, and that quality of life is extremely important

to everyone. We believe that things will always get better, slow as

it may be.

Moderator: Thanks to Freeman, MD, and Pillas, from the

M. Freeman Epilepsy Center at s Hopkins, for being with us.

For more information on controlling epilepsy with diet, read The

Ketogenic Diet, By Freeman, MD. And for more help and support,

please visit the WebMD message boards, including the Epilepsy Support

Group, where you can post questions and comments for fellow WebMD

members like you.