Brenen Hornstein Autism Research & Education

Seizures and Epilepsy

A seizure results from a temporary electrical disturbance in the brain. Epilepsy is simply the term used for anyone that has more than one seizure in his or her lifetime. Epilepsy is considered a disease, while seizures are the symptoms. Unfortunately, autism and epilepsy are common as coexisting diseases. Approximately 20-30% of autistic individuals will develop seizures at some point in their lives. Certainly there is a connection between the two, one that science has yet to discover.

Types of Seizures
There are many types of seizures, but for simplistic purposes only a few will be discussed. Febrile seizures occur generally in infants, and result from a rapid increase or spiking of a fever. It is the rapid rise in temperature, not the temperature itself, which brings on this type of seizure. For the most part these seizures are not dangerous and most doctors believe this type of seizure does not cause any long-term harmful effects. While scary to witness, these seizures require little treatment.

Generalized seizures are categorized mainly by tonic-clonic (grand mal), or Absence (petit mal) seizures. Grand mal seizures occur when a person has their entire body contract or flex all their muscles at once (the tonic phase). Then the body will jerk and twitch (the clonic phase) as the person shakes. Drool or foaming of the mouth can occur. The person may moan or make unusual noises and perhaps lose bladder control. The seizure generally last less than one minute and is followed by a post-ictal state in which the person usually sleeps. Petit mal seizures are often viewed as “zoning out” or starring spells, which usually last five to fifteen seconds. The person is still conscious, unlike the grand mal seizure, but is unable to answer questions or move. This person usually recovers fast and may be unaware the seizure took place. If the electrical activity spreads to impair the person’s level of consciousness, then the seizure is termed complex partial. Or if the seizure causes convulsions, then the name partial seizure with secondary generalization is used. Please visit other web sites to learn more about the many other terms used.

Treatments
Most people with epilepsy are treated with anti-epileptic drugs (AED). For easily controlled epilepsy, a Neurologist may be a good choice to use as the individual’s doctor. However, for those people that are unable to get their seizures under control, or for someone simply looking for another opinion, an Epileptologist should be consulted. It would be prudent to seek a pediatric doctor in either case if the patient is a child. Studies vary as to the success of seizure control from medication. The best studies, in terms of success of medication, state approximately 70% of people with epilepsy will gain control of their seizures using medication. The other 30%, by necessity, will be forced to try other methods. The goal with medication should be seizure control with minimal or no side effects. Some medications work well to stop seizures, but can have very negative side effects that can cause the person to switch medications. Parent surveys from the Autism Research Institute have shown that Tegratol and Depakote were rated the most effective drugs in controlling seizure activity and improving behavior. It would obviously be smart to try these two drugs first in treating seizures with a person with autism. Note however, that all medications work different in different individuals. Thus, some seizures and behaviors are made worse by these same medications. Recently, Lamictal has been touted as a great new drug for seizures with autism. The BHARE Foundation has numerous reports from parents that agree with that assessment, but also an equal amount of reports that state Lamictal made their child worse. Medication is but one choice of treatments to attempt. If medication fails, or the side effects are too significant, there are other options.

The first logical option to try if medication fails would be the Ketogenic diet. Perhaps the Ketogenic diet is even the first step to try, before medication. Most doctors would disagree with that statement, but it is certainly an option. The Ketogenic diet, in simple terms, is a very high fat, low protein, and low carbohydrate diet. The body produces ketones from this diet, which many believe to have an anti-seizure protective measure in the brain. The diet is calorie restrictive so the person does not gain a lot of weight. Studies have been extremely promising thus far for this treatment. It should be noted that this diet MUST be done under the direct care of a doctor AND especially a good dietician. This is not a diet to try without medical supervision. If an autistic child is already on the GFCF diet, then the transition to this diet should be relatively easy for both the parents and the child. This treatment has been used successfully since the 1920’s. After the movie “First Do No Harm” with Meryl Streep came out some years ago, the diet treatment has become a mainstream medical practice. Many doctors do not have the facts right on this diet and as such, do not recommend it until all other treatments have been exhausted. Even though younger children seem to benefit more from the diet, even adults can attain seizure control from the Ketogenic diet. More studies need to be done so we can learn more about this treatment option. The BHARE Foundation feels that this diet may be an option not only for epilepsy, but also for autism as well. That being the case, The BHARE Foundation may in the future, fund such a study.

If medication and the Ketogenic diet are unsuccessful, then the next step that should be explored should be the Vagus Nerve Stimulator (VNS) or surgery. Surgery can be a good option, but only for certain patients. Various factors must be present for surgery to be considered. There are a few different surgical options that are performed for the control of seizures. The VNS therapy is similar to a heart pacemaker; in that a small device is implanted into the patient’s chest (or in the case of some children, the back) and electrical impulses are sent to the vagus nerve. Scientists are unclear as to why the VNS works, but many people have had positive results from this newer anti-seizure treatment. Doctors use the rule of “thirds” to explain the success rate of this device. 1/3 have significant improvement, 1/3 have moderate improvement, and 1/3 see no changes. Most people that benefit will still need to take medication while using this device.

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