Mens Health Blog. Medical Blog » Epilepsy

HELPING YOUR CHILD COPE WITH EPILEPSY: STAGES OF SEIZURES

admin — Thu, 09 Jun 2011 15:18:56 +0000

Grieving also occurs in children. Initially the older child or adolescent will think that life has ended, that he can no longer do the same things other children are doing. If you impose unwarranted restrictions, this may be self-fulfilling. This is one of the reasons why it is so important that your child be allowed to participate to the fullest extent possible. Even when restrictions are needed because of the frequency or severity of the seizures, it is important that you find activities in which your child can participate and achieve safely. These are very important ingredients in helping your child develop self-esteem.Here are a few examples of how children can be helped through these stages:Melissa is still grieving. This bright, articulate, theatrical teenager has staring spells for almost nine months. Although she had been to many doctors, we were the ones who finally told her that she had epilepsy. Even though she has now begun to take her medicine reliably and has had no seizures in two months, she feels sad. Seizures no longer interfere with any of her multiple activities. There are no side effects from medication. But she feels different, and she is still angry. We have helped her move toward acceptance by offering her an opportunity to meet with other young people who have seizures, youngsters who have already been through some of these stages. We can already see a difference—a willingness to channel these feelings in a productive way. We see a young lady who is beginning to believe that she is not handicapped by her seizures.Sean still feels sad. Although only nine, he coped with his seizures by talking about them incessantly to all his classmates and friends. Unfortunately this was not productive and resulted in negative reaction. Most children didn’t care and so they ignored him, or they were angry at him for bothering them. Understanding that there are lots of people who have seizures had a profound impact on him. We simply told him that we could fill the Orioles’ baseball stadium with people from Maryland who have epilepsy. And finally, meeting another child with epilepsy who understood his feelings has made it possible for him to begin to put his seizures into perspective. He no longer feels alone.Both of these children were grieving and had not accepted their epilepsy. Melissa had internalized the problem and withdrawn, while Sean had externalized his difficulties and was making himself a nuisance. Neither response was productive.*179\208\8*

COPING WITH THE UNCERTAINTIES OF SEIZURES AND EPILEPSY: THE POWER OF POSITIVE THINKING

admin — Mon, 11 Apr 2011 10:57:11 +0000

One way to achieve a positive approach to dealing with this uncertainty is to focus on the low probability of another seizure. A second way is to recognize that another seizure may occur and accept that possibility. It’s important to find what approach works for you and your child to lead you to acceptance.You might say to yourself: “She’s going to be one of the lucky ones with benign epilepsy who will, or has, outgrown it.” Or you might say, “Chances are that she will never have another seizure.” Never is a long time and it might be more useful to say, “She’s not going to have another seizure today.” If you said that to yourself, the chances are overwhelming that you would be correct. If you said, “I don’t think she will have another seizure this week or this month,” you still have an enormous chance of being right. Many people with epilepsy have only two, or three, or four seizures in their lifetimes.If you live your life as if your child is not going to have another seizure, then you can avoid the extra handicap superimposed by worrying about another seizure and its possible effects. If you allow your child to live as if another seizure will never occur, you can avoid the over-protection that may accompany the fear that it will. Thinking that another seizure will not occur can be called “denial.” But it is not denial that your child has epilepsy. For many people, at most times, denial that another seizure will occur will be realistic. Most of the time you will have been correct.*189\208\8*

COPING WITH SEVERE HANDICAP WITH EPILEPSY: COPING WITH SHATTERED EXPECTATIONS

admin — Sun, 23 Jan 2011 16:23:13 +0000

Parents of a newborn child have great expectations. These expectations are dashed when a child is diagnosed as having multiple severe handicaps. But such a diagnosis should not mean that expectations for your child must be abandoned. It means that your expectations must be modified, although your hopes may persist. Your expectations for your child need to be individualized. You should discuss them with your physician, but your doctor does not have a crystal ball. He may not be able to foresee with any great precision how well your child will be able to do.

Parents often tell us that their physician had said that their child would never walk and are angry that the doctor underestimated their child’s abilities. Their child is now walking. Others are angry because their physician did not tell them that their child would have troubles in school or be retarded. When a child is only one, it may be difficult to predict how well he will talk, walk, or learn. When your child is three, your doctor may be able to be more precise in making predictions. By age eight, you and he will have a much better idea about learning problems. The more severely handicapped the child, the earlier accurate predictions can be made. Betting on children is like betting on race horses; the more they’ve run, the better you will be able to predict their future success.

Virtually no child stays the same forever. All children make progress. The rate of that progress is a measure of the severity of the neurologic damage. For the parents of a profoundly handicapped child, progress may be measured in terms of smiling, feeding, head control, or reaching—or even just an awareness that you are there. These milestones that parents of more normal children take for granted can be major achievements for profoundly handicapped children and their families. When your child is severely handicapped it may be difficult to hold great expectations for the future. Take pleasure in small accomplishments, deal with the bad things, and then set them aside. If you cope in small ways, day by day and week by week, coping will become easier.

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COPING WITH SEVERE HANDICAP WITH EPILEPSY: COPING WITH SHATTERED EXPECTATIONSParents of a newborn child have great expectations. These expectations are dashed when a child is diagnosed as having multiple severe handicaps. But such a diagnosis should not mean that expectations for your child must be abandoned. It means that your expectations must be modified, although your hopes may persist. Your expectations for your child need to be individualized. You should discuss them with your physician, but your doctor does not have a crystal ball. He may not be able to foresee with any great precision how well your child will be able to do.Parents often tell us that their physician had said that their child would never walk and are angry that the doctor underestimated their child’s abilities. Their child is now walking. Others are angry because their physician did not tell them that their child would have troubles in school or be retarded. When a child is only one, it may be difficult to predict how well he will talk, walk, or learn. When your child is three, your doctor may be able to be more precise in making predictions. By age eight, you and he will have a much better idea about learning problems. The more severely handicapped the child, the earlier accurate predictions can be made. Betting on children is like betting on race horses; the more they’ve run, the better you will be able to predict their future success.Virtually no child stays the same forever. All children make progress. The rate of that progress is a measure of the severity of the neurologic damage. For the parents of a profoundly handicapped child, progress may be measured in terms of smiling, feeding, head control, or reaching—or even just an awareness that you are there. These milestones that parents of more normal children take for granted can be major achievements for profoundly handicapped children and their families. When your child is severely handicapped it may be difficult to hold great expectations for the future. Take pleasure in small accomplishments, deal with the bad things, and then set them aside. If you cope in small ways, day by day and week by week, coping will become easier.*209\208\8*

SPECIAL CARE FOR THOSE WITH THE WORST EPILEPSY

admin — Tue, 28 Apr 2009 12:40:27 +0000

Most people with frequent seizures are looked after at home by devoted parents or partners. Sometimes a fragile situation breaks down and it is clear that a person with epilepsy cannot cope at home. Obviously if it is believed that this is a purely temporary setback likely to be improved by modification of anti-epileptic medication, then the family doctor will arrange a short stay in a neurological unit or in a special centre for epilepsy. Occasionally, however, it is obvious that neither the domestic situation of the person with epilepsy, nor their epilepsy, is going to improve in the foreseeable future, and long-stay care has to be arranged. The precipitating factor is very often the illness or death of the last surviving supporting relative.

In the middle of the last century, an increasing social commitment to those less fortunate than the majority resulted in the establishment of ‘colonies’ for people with epilepsy. The general plan of such colonies in Europe was of a totally self-contained institution. During the day, the people with epilepsy would work in the open air, in arable and stock farming, and at night they would return to dormitories, or, in the more advanced colonies, to small houses in which some semblance of a family circle was maintained. Many people with severe epilepsy spent the greater part of their lives in such institutions. Unfortunately there is still a need for such long-term care. In the UK there are approximately 2000 people with epilepsy in the former colonies, now called centres for epilepsy, and perhaps another 3000 in other types of residential accommodation supported by local authorities.

An intriguing fact is that about one sixth of those in the epilepsy centres have rare

seizures—less often than once a year. Some of these epilepsies have, as it were, burnt themselves out, but the subject has been so long in the institution that they have no base or family circle to which they may return, and the centre is a much-loved home. The other explanation is that epilepsy, although a ‘required’ disorder for admission to the centres for epilepsy, may not be in itself a great problem—the major reasons for admission being associated impairment of intellect or major physical disability due to brain damage, of which epilepsy is only one symptom. By and large, those in special centres for epilepsy have what has been termed ‘epilepsy plus’—epilepsy plus some other major handicap.

The role of the former colonies has gradually changed over the years. First, the word colony, with its implications of dependency, has been dropped, and the name ‘centre for epilepsy’ has been adopted. Secondly, the centres have established much closer links with university departments of neurological sciences. Indeed much of the best research work in epilepsy in Europe emanates from the former colonies. Thirdly, the centres have taken a greater role in the assessment of patients with severe epilepsy, admitting them for neurological and occupational evaluation for a short period of a few weeks. Fourthly, they are more outward-looking in the employment of people with epilepsy. Sometimes the centre is used as a hostel to which people with epilepsy who can almost, but not quite, manage on their own can return at night.

All this activity does mean that the primary role for which the colonies were established—a sheltered residential home for those people with epilepsy unable to cope outside—is in danger of being submerged. We can tell when this is happening to a centre, because my letter requesting admission for a patient received a reply that the patient ‘would not benefit’ from residence in the centre. In a small proportion of cases, one has to accept that benefit is not likely to occur, and all that is wanted is a clean, quiet, and kind place to live.

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