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Many of these drugs have side effects, referred to by physicians as adverse drug reactions, ADRs for short. The ADRs of most drugs are well known and well defined, based on the experience of thousands of people who took the drug during its clinical trials, and on the experience of everyone who took the drug once it was on the market. Although anyone can develop ADRs, for some reason ADRs are more common in people with HIV infection. For instance, trimethoprim-sulfamethoxazole (Bactrim or Septra) causes ADRs in 10 percent of the people without HIV infection and 50 percent of those with HIV infection. ADRs are classified as either allergic or toxic. Allergic reactions mean that the cells of the immune system have recognized the drug as foreign and have responded by causing a rash, a fever, or both—like the rashes that penicillin causes in some people. In allergic reactions, the dose of the drug is unimportant: the immune system will respond similarly regardless of the dose. Serious allergic reactions often imply that neither that drug nor any related drugs should be taken again. Toxic reactions are caused, not by the immune system, but directly by the drug itself. An example is the drowsiness caused by Dramamine or other antihistamines or the kidney damage and anemia caused by amphotericin B. Toxic reactions are usually dose-related; lowering the dose will relieve the symptoms. People usually develop ADRs after they have been taking the drug for one or two weeks. Some people, however, will have a serious ADR after one dose; others will have no ADRs until after they have taken the drug for months or years; some develop ADRs after repeated courses of the same drug. Therefore, ADRs are unpredictable: because a drug was taken once and tolerated does not mean that it can be taken later and cause no ADR. Sorting out and controlling ADRs will be done by a physician. The physician will either give the person with a suspected ADR what is called a drug holiday—discontinuation of all drugs—or will stop drugs one at a time, starting with those that are most likely to cause ADRs and those that are most dispensable.*180\191\2*
“Too often doctors and even counselors get caught up with the parents’ concerns about their child’s epilepsy and the child’s own concerns about his seizures. We forget the brothers and sisters. Epilepsy is a family problem. It touches everybody. It’s important to let brothers and sisters express their concerns. It’s important to help them to ask questions that they can’t articulate easily. In our experience virtually every brother or sister has fears, misunderstandings, and resentments. It’s imperative that they talk about them and be part of the family’s acceptance of epilepsy.”When it was time to discontinue medication, Jeb was the one who was allowed to make the final decision. It was discussed with him and his mom. He went home to think about it and discuss it with the family. Even at seven, he understood that there was a risk of having more seizures and that he might have to restart medicine. I strongly believe that it is important to be honest with people, especially with children.”When he was scheduled to come back and tell us his decision, I was out of town, so Jeb changed his appointment because he wanted me to be there, too. He said that I was a part of all of this, and he wanted me to hear his decision.”I guess the important thing I want people to understand about counseling is that it is not a routine thing. It has to be individualized for each child, for each adult, for each family, and for each problem. Education about epilepsy underlies much of it, but understanding kids and family dynamics is probably the largest part. There is also a large element of common sense.”*230\208\8*
“Johnnie, your hair looks so nice today!” the receptionist exclaimed as he walked by. “Oh, Johnnie, your hair looks wonderful!” one of the secretaries echoed. When Johnnie entered the psychiatrist’s office, instead of sitting in a chair as asked, he crouched down and intently peered at himself in a thin strip of chrome on the chair. “What are you doing, Johnnie?” the doctor asked him. Johnnie didn’t answer. Instead, he tilted his head, examining his hair from different angles, patting it and smoothing it out. He also grinned at himself, examining and touching his teeth.Johnnie was excessively worried about his hair, which he thought “wasn’t right” or flat enough. He was also obsessed with his teeth, which he thought weren’t white or straight enough, and his “pot” belly. He frequently checked mirrors and excessively brushed his teeth. He often touched and groomed his hair, using special hair creams. If he couldn’t get his hair to look right, Johnnie cried, dunked his head in water, and started his grooming routine all over again. “I wish the whole world was bald,” he said, “including me, so I wouldn’t have to worry about my hair!”Over and over again, Johnnie asked his parents, “Is my hair okay?” “Am I fat?” His mother estimated that he spent at least three hours a day focused on his appearance and asking for reassurance. Johnnie was only five years old.*152\204\8*