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Alternative treatments for epilepsy.

Q Our 12 year old has hid seizures since she was two-years old. Her doctors do not know why she developed epilepsy. Over the years, she has had a number of EEGs, all abnormal. She has taken many medications. First phenobarbital when she was two, but it seemed to make her "hyper" and irritable. Her doctor changed her to Mebaral [TM] to decrease the irritability. This worked for a short period of time, then her seizures increased. We tried Mysoline [TM], then Tegretol [TM] which seemed to decrease the seizures for a while. Then Depakene [TM] was added to the Tegretol [TM] and this also worked for a while. CAT scans, lab tests and an MRI haven't shown anything wrong. Her pediatric neurologist says she has complex partial seizures which turn into generalized seizures. We changed to Felbatol [TM] which seemed to eliminate most of her seizures but I wanted it stopped due to a possible severe side effect. Her neurologist felt it was acceptable to continue it with close monitoring.

I am tired of all these medication changes and side effects. What other options are there? Are there newer medications that are more effective and have fewer possible side effects? I have also heard about some alternative treatments such as the ketogenic diet and surgery.

A I understand your concerns as I have seen it happen with some of my own patients. It is very upsetting to use a medication with good results for a while and then see control stop. It is a difficult choice to stop using an effective medication because of an adverse side effect or because of a severe, potential side effect. It is also frustrating not to know the reason for your child's particular medical problem. There are some newer anticonvulsants that you may wish to discuss with your daughter's neurologist. I have a few patients using gabapentin (Neurontin [TM], approved for use in 1993) in combination with other anticonvulsants. We've had fairly good results so far. I have less experience with lamotrigine (Lamictal [TM], approved in 1994), but my colleagues in pediatric neurology are using it more frequently. No doubt, more anticonvulsants will be available in the future. Nevertheless, it is always important to discuss the use and potential side effects of any medication with your daughter's neurologist

The National Institutes of Health define alternative medicine, or nontraditional therapy, (also referred to as complimentary, non-drug, unconventional, and unorthodox as an unrelated group of non-orthodox therapeutic practices, often with explanatory systems that do not follow conventional biomedical explanations. By that definition, I do not believe that the ketogenic diet or surgical procedures should be considered "alternative" therapies for epilepsy. There is a definite resurgence in the use of the ketogenic diet Any individual with epilepsy, especially if reasonable trials of anticonvulsants have failed to control frequent seizures, may want to try the ketogenic diet The current version of the diet is easier to start and maintain but still must be administered under the direction of an experienced physician with good dietary support services. The diet consists of high fat foods with limited amounts of protein. Sugars and starches are extremely restricted.

Once started, barring any major complications, it is essential that the child follow the diet strictly. Any cheating, whether intentional or unintentional, can result in restarting or increasing seizures. The ketogenic diet has controlled seizures in almost 50 percent of my patients who followed it and caused a significant decrease in about 20 percent more. Many of these patients were able to discontinue or limit the amount of medications they are taking. Potential side effects of the ketogenic diet include hunger, thirst, constipation, kidney stones and an alteration in how the body handles medications, causing a buildup. For more about the ketogenic diet, see my July 1995 Ask the Doctor column and "The Ketogenic Diet" (Exceptional Parent, July 1997).

Surgical intervention for epilepsy applies to only a small fraction of individuals with epilepsy, and probably does not apply to your daughter. This is only for individuals who have intractable, or refractory, epilepsy, that is, the seizures have not been brought under adequate control with medications or any other modality of treatment. This is definitely not a first line therapy for epilepsy and must be very carefully considered by a team consisting of professionals, the patient, and parents.

One form of alternative therapy is biofeedback I have no personal experience with it. Monitoring instruments "feed back" physiologic information, usually brain waves, to patients as they adjust their breathing or other physiologic or thought processes. The goal is to prevent the seizure from developing The instrument gives the patient immediate feedback that tells the patient how successfully they are changing their brain waves, usually through a sound or visual signaL Given your daughter's age and the type of epilepsy she has, I doubt this would be a worthwhile approach.

Vagus nerve stimulation is reportedly successful in some children with refractory epilepsy, though none of my patients use it. The vagus nerve is one of 12 cranial nerves which emerge from the base of the brain and facilitate functions such as smell, vision, eye movement, glandular secretion, chewing, facial expressions, swallowing, taste, phonation (vocalization), tongue movement, and head and shoulder movement The vagus nerve is essential for speech swallowing, and the function of many parts of the body, most important, the heart and stomach

The vagus nerve stimulator is surgically implanted under the collar bone, much like a peacemaker. A wire connects it to the vagus nerve in the neck. The stimulator periodically sends electrical impulses through the wire to the vagus nerve. The frequency of this stimulation can be changed by a physician using an external controller. Some researchers have reported a 20 to 50 percent decrease in seizures in certain individuals. Increases in seizures in a few patients have also been reported, however.

The other forms of alternative therapy my patients have used for epilepsy as well as other chronic conditions include traditional, folk and herbal medicine (these often have strong cultural connections), diets (other than the ketogenic), aromatherapy (more commonly used in Europe), chiropractic, naturopathy, massage, relaxation therapy, music therapy, brain stimulation techniques, and of course, prayer. I never recommend reliance on any of these therapies as the "sole" treatment for epilepsy because there are not adequate studies showing their efficacy. However, the use of these and other alternative therapies as adjuncts to more conventional therapies for epilepsy is probably helpful.

I commend you for continuing to search for ways to better control your daughter's epilepsy and improve the quality of her life. Alternative and nontraditional therapies are becoming more popular these days, partly because many physicians do not listen carefully enough to their patients or the parents of their patients. It is not surprising that many patients and parents believe their doctor, and today's medical system in general, is too technical and impersonal, or worse yet, uncaring. These individuals then seek treatments where they have more control.

Although not traditionally considered a medical concern, the overall treatment of epilepsy in adolescents should be balanced by an understanding of the issues and concerns that are unique to this age group. A smooth transition of care from pediatric to adult services is important, not only for epilepsy but for all chronic conditions as well. It is essential that you have a clear understanding of the benefits and risks of any treatment option which is proposed for your daughter. Alternative and nontraditional therapies, when appropriately used, may play an integral part in the treatment of your daughter's epilepsy.

In this column, David Hirsch, M.D., a pediatrician and member of Exceptional Parent's Editorial Advisory Board, answers questions from readers. Dr. Hirsch is a partner in Phoenix Pediatrics, Ltd., in Phoenix, Arizona. He specializes in treating children with developmental disabilities and chronic illnesses.

Since Dr. Hirsch has not examined the child in question, parents need to review his suggestions with appropriate professionals. Mention of specific products or medications illustrate suggestions; he is not endorsing any specific products.

Send questions to: Ask the Doctor, Exceptional Parent, 555 Kinderkamack Road, Oradell, NJ 07649-1517, (201) 634-6598 (fax).
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Author:Hirsch, David
Publication:The Exceptional Parent
Date:Dec 1, 1997
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