Epilepsy: Silencing the Seizures-- John Freeman, MD, and Diana Pillas-- 12/04/03
By John Freeman
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 John Freeman, MD, and Diana Pillas, co-authors of Seizures and Epilepsy in Childhood: A Guide.
The opinions expressed herein are the guests' alone and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
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 Johns 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 Diana 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, Diana?
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 John Freeman, MD, and Diana Pillas, from the John M. Freeman Epilepsy Center at Johns Hopkins, for being with us.
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