The Real Problem

S.E.E. Library

Information about epilepsy

Robert J. Mittan, Ph.D.

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			the S.E.E. program

	What really makes epilepsy so difficult? (You may be surprised - or not!) Many think seizures are the biggest problem in epilepsy. Certainly seizures are a problem and we want to stop them completely if we can. But if you are a person with epilepsy, a family member, or a parent of a child with epilepsy, what is it about epilepsy that makes your life so difficult day-by-day? Is it seizures? Or is it the fear you have of the harm the next seizure might bring? Do seizures keep you up at night – or are you robbed of sleep by your mind worrying about what will happen next? While seizures seem like the source of stress in epilepsy, I have known hundreds of families who were at wits end with just one seizure in an entire year. Other families enjoyed themselves without reservation despite daily seizures. It is not just the seizures; it is our emotional response to the seizures that can make life with epilepsy so miserable. Here is a small, but profound observation: Seizures last minutes or less. Worry about the next seizure can last a lifetime. Twenty-five years ago my research at UCLA found that for most people, fear and worries about seizures were far more disabling to their emotional health, family adjustment, and social success than seizures themselves. Yes, there were exceptions for those few persons who have truly frequent and severe seizures. For the majority of families the greatest need in epilepsy care was help for their worry and fears. Unfortunately, therapy for the emotional toll of epilepsy is rare in medical care. If you are living with epilepsy, I’m sure you know this all too well. What the National Institutes of Health did about it A nationwide study for the National Institutes of Health (NIH) discovered patients’ and families’ needs for psychological and social care were seldom fulfilled - even in the most advanced medical treatment centers. Even back then (1978, Commission for the Control of Epilepsy and Its Consequences) it was clear doctors and medical centers could not afford the staff and resources required to deal with these care needs in traditional ways. NIH realized a new, completely different, and affordable treatment program was required to solve the problem. That is why NIH funded the development of the Seizures & Epilepsy Education (S.E.E.) program at UCLA and the Sepulveda Veterans Administration Medical Center. S.E.E.’s mission was to treat the person and the family, not just the body. S.E.E. was to relieve the fears caused by epilepsy. S.E.E. was to reverse the harmful emotional consequences epilepsy might have on your mind, your family, your child’s development, and your ability to function at your best in the world – whether you were a person with epilepsy, a family member, or parent of a child with epilepsy. S.E.E. was designed to give you your life back. How does S.E.E. work? S.E.E. is a two-day seminar that puts fear under the control of knowledge. How? First, S.E.E. teaches you what you need to know to get the best seizure possible (see Program Contents 1.) It is easier to be worry free if you are seizure free. You learn about seizure diagnosis. Correct diagnosis is often the key to success, but many patients are misdiagnosed because the family does not know what to look for during seizures. S.E.E. teaches detailed seizure observation and reporting. Then S.E.E. teaches which treatments fit which diagnoses. You learn about cutting-edge treatments. This includes new choices in surgery, brain stimulation, diet, even new research in genetic therapies. You learn things you can do in your day-to-day life that can help reduce or even eliminate seizures – including some things many doctors don’t know about. Some examples of this can be found on the S.E.E. Library web page under “Beating Bad Seizures.” The goal is NO seizures. Second, S.E.E. teaches you about medications. Many families complain more about the side effects from treatment than they do about the seizures. This problem seems to be growing with the introduction of so many new medications. S.E.E. teaches you the details about medications – what they are, what each is good for, how they work, what their side effects are, and how medications may interact. You learn what you can do minimize side effects and maximize effectiveness. You learn how to become an active partner with your doctor to get the best result. The goal is NO side effects. Third, most worry and stress is caused by misinformation or misunderstanding. Ideas that seizures cause mental illness, loss of intelligence, or even death are often greatly exaggerated. Parents worry about their child’s future. Epilepsy is not without risk (neither is living), but here is what’s so important: There are things that you can do each day to greatly reduce or even eliminate certain risks. S.E.E. teaches you those things. Confidence shows when you know how to protect yourself and your loved ones. The goal is NO fear. Epilepsy – or more correctly – your emotional response to epilepsy can severely damage your quality of life. It can damage your family. If you are constantly stressed by epilepsy, problems with irritability, fatigue, and depression are soon to follow. It becomes hard to find the emotional energy to do other tasks in life – even the important ones. Does this sound familiar? Family relationships suffer when everyone is on edge. Fears about seizures and social stigma discourage families from going out, causing persistent “cabin fever.” The emotional needs of husband, wife, brother, or sister get neglected when so much attention is focused on the person with epilepsy. Epilepsy not only causes a medical disorder in one person; it creates a family disorder. S.E.E. teaches you the sneaky ways epilepsy does this. More important, S.E.E. teaches you what you can do to stop epilepsy from harming you and your family (see Program Contents 2.) Some examples of how you can stop epilepsy are found in the S.E.E. Library web page under “How to Raise a Child with Epilepsy.” The goal is to get your life back. How do I know S.E.E. really helps? So does S.E.E. really work? Most psychosocial treatment programs die when grant funds run out. S.E.E.’s grant ran out 23 years ago. S.E.E. is still going strong. Over 30,000 people have attended the program in four countries. S.E.E. has won five national awards and an international award for excellence (visit S.E.E.’s Awards web page.) More important, S.E.E. has been the subject of two independent outcome studies. The first one by Helgeson et al used a randomized control design to measure long-term outcomes for adults. The second one by Shore et al looked at long-term outcomes for parents of children with epilepsy and adolescents with epilepsy who attended. Each study found significant long-term gains in quality of life for the people who attended S.E.E. Each study found significant long-term improvement in ability to manage seizures. Dr. Shore found families participating in S.E.E. had a reduction in their healthcare costs following the program. Further information is available by clicking on the study links (Helgeson, Shore.) You can also find evaluations of the program by over 1,200 people with epilepsy and 500 health professionals on the S.E.E. Evals web page. Interested in more “personal” stories on how S.E.E. helped? Read what S.E.E. program participants and sponsors have to say in their own words. The bottom line If what you read on this website makes sense to you, then S.E.E. may be helpful to you and your family. Only a few programs are given each year, so you may have to travel some distance to attend. If you are like the thousands who have attended before you, you will find the program is an uplifting investment that will pay you and your family dividends for years to come.