Story about Seizures:
Story about Seizures:
(Mother) I had just put the baby down and went in to kiss my boys. They had gone to bed about 10 minutes before. I turned on their light and was relieved to see that at least one of them was still awake. He was lying on his side with one eye half open and his mouth pulled up on one side, in sore of a grimace. Oh, boys will be boys! He and his brother were always making gross faces and weird noises.
I had to watch where I was walking because so many of their toys were on the floor. When I reached the top bunk he was still playing, or so I thought. “That’s really a gross face….cut it out,” I said. I went on talking to him and then asked him a question. He didn’t answer me. “It’s not funny, cut it out,” and I grabbed him by the shoulder. His body was stiff and twitching so slightly that I had not even noticed until I touched him.
I screamed for my husband. He came running, alarmed at my voice. I told him our son was having a seizure or something. My husband was very impatient and said, “No, he’s not.” I then yelled hysterically. “Yes he is. Pick him up and you will see.” My husband pulled our son out of bed and found he couldn’t hold him over his shoulder or cradle him in both arms because he was so stiff. He had to hold him diagonally. He told me to stop crying and to pray. I tried, but as I saw my son becoming conscious, I walked out of the room so he wouldn’t see me upset.
Our pediatrician wanted to put our son on an anticonvulsant immediately. I had just read an article about a particular drug that could cause potentially fatal anemia. I refused to allow my son to take any medication, since he had only had one seizure. After all, I reasoned, he had been in a hot tub the night before the seizure. Perhaps he had gotten overheated.
After that, however, our son seemed rebellious. He didn’t do things he was asked to do, claiming that he didn’t remember, so he was disciplined. Eight months after the seizure I had witnessed, the school called us. Our son was wandering out of class and didn’t know where he was going. I knew immediately he must be having small seizures that we couldn’t see, and we were referred to a pediatric neurologist at my request. Nine months after his first seizure, he was diagnosed with a “seizure disorder.”
I felt guilty because I had refused to allow him to be prescribed the seizure medicine. And I unknowingly punished him for being unconscious! Although I had just weaned the baby in order to go back to work, I decided I didn’t want a nanny taking my son for the CT scans, x-rays, blood work, MRIs, and EEGs that he had to have. So I put off going back to work.
For the next 2 years my son was pumped full of all sorts of medications in the quest to find one that would stop the seizures. Every 2 weeks his little arm was poked to draw blood. At first, none of the medicines seemed to stop his seizures. One time he was standing, laughing uncontrollably with a friend. I could see that he’d wet his pants. I picked him up and carried him into the bathroom. He had defecated as well. I didn’t know what was happening. I had the baby and a 6-year-old to take care of as well and I felt overwhelmed. I started yelling as I pulled off his clothes. The poor kid had a seizure and I made him feel ashamed for something he couldn’t control.
He had never been allergic to anything. All of a sudden, he was allergic to every medicine we tried. In the middle of all this, we discovered he was now also allergic to sulfa! Every allergic reaction was severe, so the medication would be stopped instantly, and that often cause him to have another seizure. New drugs went into him to offset each allergic reaction, with trips back and forth to doctors dragging the other two kids with me. I had to keep him out of school because he had rashes even in his eyes and mouth. Eventually we found one that controlled the seizures. Unfortunately the side effects were only slightly better than the seizures. One of them was attention deficit disorder (ADD).
I struggled – alone and completely ignorant. Then during a consultation with a psychiatrist, the word “epilepsy” was used in reference to our son. I said, “No. He doesn’t have epilepsy. He has a seizure disorder.
But I stood corrected. Almost 3 years after that first seizure, I learned that it was epilepsy. Our doctor hadn’t told us because of the stigma associated with the word. But how do you find out about “seizure disorder?” It’s not listed in the yellow pages. I ran home and found the number of the Epilepsy Association in Los Angeles. They were the first group that sent me written information about epilepsy.
When the doctor recommended we have our child see a psychologist, the only reason she gave was that children with epilepsy often have behavioral problems. She should have insisted we all see one on a regular basis.
Our oldest son could no longer function as the oldest. The medicine sedated him. What a normal child could do in 3 minutes now took him 8. Appointments with specialists took up more of his time. The ADD made it impossible for him to remember much of anything until after the ADD medicine had taken effect. He could no longer meet the responsibilities of the eldest as he had before. He was struggling with the seizures and the effects of the medications on his body and personality. He not only had lost the 2-year lead that he had on his grade level, but he was now falling behind in school. I tried to encourage him by saying that if he worked hard he’d be rewarded for his efforts. He went to the school nurse weekly with stomach pains and nausea and headaches. She’d let him lie down and he’d sleep the rest of the day. I told the school to stop letting him lie down, give him Tylenol for the headache, and send him back to class. These were side effects of the medication and were not going to go away, so I felt that he had to learn to function with them. Still, it broke my heart, because the school thought I was being unreasonable.
The side effects affected him in many other ways. He loved the piano – now he couldn’t remember the notes. He was great in sports – now he couldn’t concentrate on the game, then he tired too easily, and eventually he was just too small and frail. His mind wouldn’t work right and his hands shook. His pupils were always dilated. There were 2 years during which he was so depressed that he wanted to die. He begged me not to send him to school. He said it was like going to hell. I held him while he cried and sent him anyway.
Our middle child became the one everyone relied on to one degree or another. He was 6. During those years when his brother’s seizures were not controlled, he had to stop whatever he was doing to follow his brother whenever he went out the front door. He had to help with his baby sister because I was helping his brother and trying to get dinner. One summer, at camp, he joined the other boys in their cabin in ganging up on his brother. If he defended his brother, the boys turned their hostility on him, too, and he couldn’t take it. Besides, he said his brother was acting like a jerk. (The counselor did not give the drugs for the ADD.)
Until I went back to work, my daughter got nothing but hand-me-downs because of all the extra costs relating to her brother’s needs. She learned to be very independent. I had no time to baby her. My oldest had become the baby. She was disciplined for copying the same behavior that her oldest brother got away with. How do you explain to a preschooler the difference between behavior due to an illness that is treated with medications and behavior that is done on purpose? From her perspective, her brother looked normal, and therefore he wasn’t sick. So why didn’t we punish him?
My husband didn’t want to talk about our son’s condition – not with his family, our neighbors, or anyone. He was not interested in hearing from me anything about epilepsy and didn’t want any written information. He didn’t seem to remember who our child was before the epilepsy and ADD developed. He did not understand what an aura was and how it could turn into a complex partial seizure. He could not distinguish the change in our child’s personality and ability due to the medications, and felt that our son should be able to completely control his behavior. He didn’t think we should spend any money on therapy.
Everything became so difficult. There were so many problems and somehow, in my husband’s mind, our son, and not the epilepsy, was the problem. My husband was very angry with the way our child did or didn’t do almost everything. So he passed him over and asked our middle son to help out, because he could accomplish the task better and more quickly.
This dynamic within our family cause our son to “learn” helplessness, shame, anger, withdrawal, and isolation. All of these were devastating to his self-esteem.
Dealing with the school was particularly hard, I could hardly wait to take the pamphlets from the Epilepsy Association to my son’s school. I handed them to the teachers and to the principal. I thought that they would be understanding, helpful, and compassionate. I was wrong. They were ignorant and fearful. Even knowing that my son’s seizures were still uncontrolled the school officials would not give my son any consideration, saying that to do so would be unfair to the other children. Even though the fifth graders were studying brain cells, the school refused to talk about epilepsy or to mention that my son had it. I knew instinctively that if they would, then my son’s classmates would be more supportive and less cruel. But the principal wanted us to put him in a school that my son was “better suited for.” After all, he said that my son “is ruining our national test scores and I don’t want my students witnessing a grand mal.”
I knew that my son had a chance of outgrowing epilepsy, so despite the principal’s “advice,” I decided to keep my son in normal private schools. That way, he wouldn’t think of himself as handicapped. Still, I had my moments of doubt. Was I putting too much pressure on him? Was I unrealistic in my expectations?
Although the educators in the next school were sweet, loving people, they also would not educate the other students about epilepsy or give my son extra time on tests. As a result (I believe), my son was teased, tripped, and hit repeatedly just about every week. He begged me not to interfere. All I could do was talk to the teachers, quietly.
When the time came for him to go to high school, we applied to four schools. As part of the application process, he was time-tested even though I had supplied documentation regarding his two learning disabilities. Three of the schools rejected my son’s application. They said that we should put him in a “special” school.
But a neuropsychologist did not agree. She felt he should be mainstreamed because of his above-average intelligence and his incredible tenacity and desire to do well. Fortunately, the fourth school accepted my son and agreed to give him extra time on tests if he needed it. By his second year he made the honor roll. Still, his tutor and I had to intervene many times. We had to educate each new teacher – they never read the report that was in his record. But our son wasn’t hit once at this school, and he finally made friends his last year. In spite of everything, our son managed to graduate with his class.
By some miracle, I had done the right thing! I only wish he himself could really understand what he accomplished.
Description
Read the document and once you are finished please answer the following in a reflective writing.
1. From the standpoint of your specific discipline, is there anything you could offer this family? Think of all family members.
2. What other interventions or supports would help this family? Again, think of all family members.
3. Discuss how much of a stigma remains related to the word epilepsy. Do you think society is more accepting of calling it a seizure disorder instead?
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