My son Sean Not many people understand what is in his control and what is not. My goal is to educate people to look beneath the tics, to see the little boy inside his world, that is not usually noticed. At age 4, Sean was a hyperactive child, who displayed many behavioral problems. He was unable to concentrate, sit still for more then 5 minutes, and always seemed distracted, no matter what he was doing. In nursery school, he couldn't follow simple directions, ran instead of walked, was loud, boisterous, and overpowering, even though he was a sweet little boy, nobody saw that side of him due to his behavior. That year he was diagnosed with ADHD - attention deficit hyperactivity disorder, and was put on ritalin. The ritalin worked well with the distractability, and gave him the ability to sit in a classroom and do his work. He was able to follow directions and wasn't in such a rush to do things as before. Finally the world saw Sean through a different light, and life seemed back to normal. But not everything subsided. What I know now to be tics, increased over time. I didn't know Tourette Syndrome existed, and had no idea the symptoms Sean displayed were not in his control. He hummed all the time, made animal noises, blinked his eyes, smelled money, sniffed, and cleared this throat. His doctor increased the ritalin. Now I was totally ignorant about TS, and therefore did not know ritalin was containdicated in children who have it. The tics got worse and we found another doctor. The second doctor took him off the ritalin and put him on cylert, also a stimulant but had less side effects. The cylert did not have the same ability to help with the ADD, and the tics and the behavior got worse. He was totally out of control at school and at home. He spent most of his school day in time out and most of his homelife punished in his room. This doctor decided that stimulants were not the answer and put him on melleril. This was a happy memory for me because he was a different kid for 5 days, then gradually the old sean came back. When we increased the dose it made him too sleepy to have a life, and we discontinued it. Extreme drowsyness occurred with benydryl and catapress and this doctor did not know what else to do. The third doctor decided that the ADD was so bad we should give ritalin another shot, but this time in slow release form. We had good results again with the ADD, but the tics had become increasingly worse. Then I read an article in Ann Landers column about Tourette Syndrome that changed my life. The article described Sean to a T and I immediately called his doctor and made another appointment. He listened to me, nodding his head, and said I was just being a worried mother and that he highly doubts Sean has TS - the tics I described were probably nervous habits he had developed when he was hyper, and they would go away with time. That was the end of doctor # 3. I did as much research as possible on TS, and called the TSA for a list of doctors who specialize in this disorder. Doctor # 4 agreed that Sean did indeed have TS and ADHD took him off the ritalin, and put him on clonidine. First sean became somewhat depressed and slept all the time.The doctor put him on prozac to help with the depression and then he started to talk about killing himself - the doctor increased the dose - he said prozac was an antidepressant and will help at a higher dose. Well sean got so bad he was cutting the furniture with knives, and scratching obsenities in the arms of the couch. The prozac was discontinued. Many drugs followed, over 35 in all, 15 doctors lined up all in a row. We were told we were doctor hopping by many but each doctor would try a few drugs then throw up their hands. As he grew older we added more diagnoses to his list of ailments. Obsessive compulsive disorder was added around the age of 10, oppositional defient disorder at age 12, and bipolar disorder at age 16. Sometimes seans tics got so bad he couldn't go to school or play at all. The sight of my little boy nodding his head till it hurt, hitting his chin to his shoulder until it bled, punching his leg making it completely black and blue, screaming obsentities for no reason at all then covering his mouth wondering where that came from with fear in his eyes made me want to cry. The desperation you feel while watching your son's body go so out of control was nothing I could ever describe to anyone. It was an extreme helpless feeling of dispair. At night when I tucked him into bed he would cry and say "why is my body doing these things????" I was determined to find a drug that worked and gave him his life back. Usually when we found one that helped with the tics the side effects were so bad we had to discontinue it, making it all the more frustrating. Trying to find a drug that helped all seans symptoms was a small part to dealing with this combination of disorders - the emotional part was much more intense. Sean grew up the baby on the block and was pampered by all the children for the first 5 years of his life. When he was diagnosed, our joy of finding a reason was knocked down by our neighbors reactions to it! They refused to let their children play with him anymore and no matter what I said or did they would not change thier minds. Now I had a child whose body was out of control, who couldnt fit in in school, who couldnt concentrate and was always getting repremanded by his teachers, and who just lost every friend he ever had. He was devestated - we all were. Sean was put in therapy for his self esteem, and we carefully picked up the pieces and moved on. Looking back that was probably the saddest time in my life. The teasing and the taunting by other kids left sean homebound most of the time - periods of depression followed.The rage attacks started at about age 16 and were by far the worst symptoms I had ever seen. Totally out of control, furniture flying, holes in the walls, screaming obsenities and wishing we were all dead was a daily routine. I had to tape record a typical evening in my house for the doctor to really understand what we were living with. He was put on lithium and the rages calmed down a lot. He still gets angry but not nearly as bad as it was. I had his school changed 5 times because of the harrassing he got in the halls and the lunchroom. Once when he was in highschool he was walking down the hall and some older kids shoved him in a locker and left him there screaming. After that he was homeschooled until we found the right placement. We found a school in the next district that mainly had children with tourettes and it was the best thing to have happen to sean in his entire life. No longer was he different - no longer was he teased - he finally fit in and made alot of friends there and is not depressed anymore. Societies reactions to this type of disorder can make the world of difference in how that person perceives himself and sean, for the first time in his life is happier with who he is. We are still searching for a drug that will work, but things have gotten so much better then they were that we thank God everyday for that. I have become a stronger person through all of this - in fact we all have - and I get great satisfaction from helping other parents deal with living with a child with tourette. I have learned 5 important things over the years 1. Have a good sense of humor, 2. Don't care what other people think, 3. Use your rough road to help pave the way for others, 4. love your child no matter what, and 5. You are stronger then you think you are! I am using this webpage to try to get people to understand the hardships parents and kids with tourettes deal with every day. I consider it an invisible disability because it is so misunderstood and the symptoms are so varied. So the next time you see someone grunting, blinking their eyes, nodding their head, stomping their foot or shouting obsenities for no reason at all - give them a break - they are doing the best they can |
