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Epilepsy Foundation of America
Epilepsy Unit at Massachusetts General Hospital
According to the NTSA Clinical Manifestations of Tuberous Sclerosis brochure, epilepsy is one of the most important and frequent neurological problems of TS, occurring in 80-90% of the recognized patients. Below, Dr. William M. McClintock, a pediatric neurologist at the Virginia Neurologic Center and medical director of the Virginia TSC Clinic, answers frequently asked questions. For further questions call Vicky Whittemore at NTSA or contact the Epilepsy Foundation of America at (800) 332- 1000. You can also call the Epilepsy Information Service, a hotline for questions regarding seizures at (800) 642-0500.
If my child has seizures as a baby will he experience seizures all his life?
Not necessarily, this depends on the seizure type. If the child has infantile spasms, for example, they are more likely to have life long seizures.
When a doctor tells me my child has simple partial, complex partial, or generalized seizures, what is he referring to?
A simple partial seizure occurs in a localized area of the brain and does not alter consciousness. For example, a seizure that causes one hand to twitch will not affect the child's alertness. Partial complex seizures also are localized in the brain, but areas that control consciousness are also involved, and the child therefore experiences alteration of consciousness. The symptom seen depends on the location of the seizure in the brain. A generalized seizure involves the entire brain all at once with alteration of consciousness.
If my child's seizures are not controlled, will he be brain-damaged?
No, but uncontrolled seizures can cause the brain not to function as well. If there are prolonged seizures (over 30 minutes), this may cause, but not necessarily, brain injury.
Is it okay to let my child have a few seizures throughout the day or should we try to get complete control?
We always try for complete seizure control, but this is often impossible. In such cases, we make judgements about the relative risks of increasing or adding anti-epileptic drugs or other treatments versus allowing a few seizures per day. Frequently, we choose to allow a few seizures per day.
Do certain drugs work better on children with TS?
We treat seizures in children with TS the same as other children with seizures. Seizure medications are usually selected on the basis of seizure type. Occasionally certain drugs seem to work better in children with TS such as vigabatrin with infantile spasms.
Do seizures cause behavior problems?
Occasionally seizures cause a change in behavior. Oftentimes, a child is more irritable just because they are tired from the seizures. Seizure medicine also can cause behavioral change. Obviously, the child's underlying brain difficulty can be associated with behavioral problems as well. As you can see, this is a very complex issue.
Will anti-epileptic medications cause problems with my child's growth and development?
There is very little evidence that anti-epileptic drugs cause change in either mental or physical development. However, these medicines can cause lethargy or behavioral change that will cause a child to appear less alert. We need to watch closely for those changes.
Is epilepsy surgery an option?
Epilepsy surgery could be an excellent option for the TSC patient with a definite seizure focus in an operable area. However, many TSC patients have multiple foci with generalized seizure activity. Unfortunately, this type of patient would not be a considered a good surgical candidate.
What is an EEG, and how frequently should it be administered?
An EEG (electroencephalogram) is a test to monitor electrical activity of the brain by placing eight to sixteen electrodes on specific areas of the scalp. The test evaluates seizure activity and determines seizure foci. Children will need to be reassured that the test is painless, and the electrodes cannot shock them.
The frequency of administering EEG varies from patient to patient. Usually, an EEG is done only when the patient starts to exhibit seizure activity. Medication decisions are often based on the evidence of the type of seizure activity displayed on the EEG. Follow up EEGs may be necessary if there is a change in seizure activity, there is a need to determine effectiveness of medications, or if the seizures are uncontrolled.
Should I put my child on the Ketogenic Diet?
Nancy Elling, the nurse coordinator for the Ketogenic Diet program at INOVA Hospital for Children in Fairfax, Va., says most Ketogenic Diet Centers across the country will place children on the diet if at least two anti-epileptic medications have failed to work and if they have more than two or three seizures per week.
What factors do I need to consider in deciding to put my child on the Ketogenic Diet?
A parent should not enter into the diet with unrealistic expectations. The diet is more difficult and requires more time than a medication. The diet is a major life-style change and requires a great deal of time and commitment by the parents. Many of the parents report good seizure control with elimination of some medications and a heightened alertness in the child. However there are also side effects noted with the diet such as constipation, kidney stones, and elevated liver functions. The diet is not a healthier way of controlling seizures, just another tool in the fight against seizure activity. Most parents do not regret having tried the diet.
Is my doctor necessarily prejudiced against the Ketogenic Diet just because he says no?
Nancy Elling says she cannot imagine a neurologist who would say no to the diet. News media and efforts by the Charlie Foundation have heightened awareness of the Ketogenic Diet, and its credibility is no longer questioned. "The only reason why a doctor would not want a patient on the diet is if there is an underlying medical condition which may be aggravated by a high fat diet or if he feels that a family may have difficulty administering the diet. If the family comes in with a great deal of enthusiasm, most neurologists are willing to give it a shot."
What questions should I ask a neurologist to screen for the best doctor possible?
How many patients with TS do you follow? Have you been in contact with NTSA, or are you familiar with it? Do you have access to investigational drugs or are you in contact with an investigational drug clinic? (Investigational drugs aren't necessary for many TS patients but could be important for some.) Nancy Elling also advises you to contact local parents because they know better than anyone else does. NTSA will be able to provide you with information of any members in your area who have volunteered to provide others with information.
Also see Another Approach to Seizures for more information.
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