Health news blog

“The doctor had him hyperventilate in the office. It didn’t cause a seizure, but could running hard and being out of breath cause a seizure while he is playing?”
No. Hyperventilation during exercise is balanced by changes in body chemistry and cannot produce a seizure. We took care of one young woman who was so sensitive to hyperventilation that with only a few deep breaths she would experience seizures we could show our medical students every time she came to clinic for her check-up. Yet she was a long-distance bicycle rider and never had a seizure while riding.
“Jennifer wants to go on the Outward Bound trip this summer. We still haven’t been able to get complete control of her absence seizures. They aren’t often, but suppose one occurred while she was on one of those rope swings?”
If a spell occurred while she was on a rope, she could fall and hurt herself. On the other hand, anyone in the group who fell from the rope could injure himself, so the group leader should be quite careful. Perhaps you and Jennifer should talk with the leader. Maybe she could join the trip but avoid doing some of the most dangerous things. The independence taught by the trip and the benefits of being part of the group might be good for her and might also help her to realize that everyone has some limitations, at times. If her seizures were under control, her risks of injury would be little greater than those of others on the trip, and she could participate fully.
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“I believe that everyone touched by epilepsy needs education and information. Each should understand the medical information about epilepsy and the social ramifications of the disorder. But many have a difficult time coming to terms with the diagnosis of ‘epilepsy,’ whether for themselves or for their child. For most, the diagnosis is overwhelming. The enormous amount of information initially given is hard for parents and children to comprehend. Often they find it difficult to stand back from the immediate situation and achieve a perspective. A counselor may be able to help them sift through the information the physician has provided, to explain it again, perhaps in different terms, and then to help them begin working on a process of coping. Parents, often numbed by the initial diagnosis and overwhelming amount of information, worry that in the numbness they appear unable to comprehend, unable even to think of appropriate questions. Parents voice concern that the doctor may think they are stupid. A counselor can step in when this numbness subsides and help them voice the questions they were too stunned to ask before.
“In working with people who have epilepsy, the counselor has to develop trust. In developing that trust, the most important ingredient is total honesty. I emphasize to them that I am speaking to them as a counselor, not as a person who knows what it is like to have a seizure, since I’ve never had one. I tell them that I don’t walk in their shoes but that what I offer are some tools, developed by working with lots of people, the tools which they need to deal with their epilepsy so that it does not take over their lives.
“What most people want is some control over their lives. What I want for every person with epilepsy is for them to have ownership and control over their seizure disorder. A counselor can’t give them complete control over the medical aspects of their disorder but can help them to gain the best control possible over their seizures. She can help them gain control over the social ramifications of epilepsy and of their own self-image.
“A referral for counseling can come from the family itself, recognizing their own need for help; it may come from the physician or anyone in contact with the child or family who recognizes that they need additional help in understanding or coping.
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Most referrals occur not because family doctors are uncertain as to whether a patient has had a seizure or not, nor because they are seriously concerned in every case about the possibility of serious underlying disease, but for the following reasons:

• People do not like being told they have had an epileptic seizure. One survey showed that this difficult task is left to the hospital doctor in about half the cases.

• People with epilepsy themselves very often feel that some sort of special test is necessary to ‘prove’ the diagnosis. It must be very difficult to accept the diagnosis, with all its social implications, when it is made on the basis of a 30-second description given to a doctor by a relative or bystander. Somehow it does not seem ‘scientific’ enough, and yet paediatricians and neurologists place enormous weight on the recounted stories.

• People with epilepsy are very concerned to discover the ’cause’ of their epilepsy. A cause is often not found, but most people think in terms of a single cause, which they believe, if eradicated, will result in the problem being solved once and for all. Occasionally, of course, an important treatable cause is found, and usually special tests are indeed necessary to show this. The difficulty lies in deciding which patients should be so investigated.

• Traditional medical textbooks accentuate the unusual and ‘interesting’ causes of epilepsy, at the expense of the more usual patients. Family doctors, educated partly by these books, tend to play safe and refer if referral centres are available.

• The necessary decisions are quite complex. There are three possible preliminary

diagnoses—seizure, not seizure, and may be seizure; two policies about investigation—to be arranged or not; and four possible outcomes—treatment, no treatment, adoption of a

wait-and-see policy, and referral to another specialist. We do have some sympathy with our colleagues in primary care, when all these combinations are considered, and can readily understand why so many patients are referred.

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