As a child, Jack Peters always had the shakes, but his mother Lisa and father Jeff thought he was not coordinated. “When he unwrapped presents, he shook really badly,” Lisa recalls. “I thought he was just excited.”
Jack was 6-years-old when he was eventually diagnosed with essential tremor (ET). “His kindergarten teacher first brought up his shaking to me, but I dismissed it as just his being uncoordinated,” says Lisa. Then, the teacher contacted the school nurse and a psychologist to meet with Jack. “I never knew this until the school nurse tracked me down at a summer swim class that Jack was in. His summer school art teacher was also concerned that Jack would cut himself with scissors.”
Jack’s shaking hands led Lisa to have her son diagnosed by a pediatrician. “We were totally surprised by the diagnosis having never heard of ET.”
The Peters were fortunate to quickly find a pediatrician that had other patients with ET. Lisa says, “While Jack is his youngest patient with the most advanced signs, Dr. Scott Johnson has always been very helpful with trying different medications and suggesting physical and occupational therapy. Jack didn’t think much of it except he now had to take medications.”
Within the Peters’ family, Jack’s paternal great-grandmother also had severe symptoms of ET but the signs didn’t develop until she was in her seventies. Lisa and Jeff faced a different set of considerations for their young son. At the time, Jack attended a small rural school with only a dozen kids in his class. “The kids never gave him any problem,” says Lisa. Jack progressed to a larger school with 125 kids in his class. Lisa contacted a teacher to discuss her son’s social interaction with his classmates. “It had taken the other kids a while to get used to him, but once they got to know him all was good.”
Lisa acquired school materials to aid her honor roll student. “He has tried weighted pencils, Dr. Grip pens, and wrist weights.
” She also met with his teachers and the school psychologist to prepare a 504 plan (see sidebar) for her son. “Jack did not really qualify for a 504 plan or IEP, but the school set up a modified 504 plan for him that the teachers had to follow,” she explains. Jack’s plan allows him leeway in matters of neatness and keyboarding skills with school work. “It gave him extra time to complete written assignments if needed. Grading points could not be deducted for neatness. Last year, a teacher’s aid was assigned to him to write out his term papers as he dictated to her. This year his hand writing seems to have improved enough that the teachers have no real problem reading it.
I took a copy of the IETF pamphlet ‘Teachers of Students who have Essential Tremor’ to each of Jack’s teachers this year. They were very receptive to reading it.” Jack takes 500 mg of primidone and 20 mg of propranolol in the morning, 500 mg of primidone at noon and 250 mg of primidone at bed to manage his ET symptoms. “They do not make a time-released version of primidone so he has to take it throughout the day,” says Lisa. “Primidone along with propranolol work the best of all the meds he was tried, but there is still shaking.”
Jack, now 13, is undaunted by ET, despite some limitations with balance and coordination. He rides on bike trails,
Snowboards and undergoes Nautilus weight training to strengthen his body. He also gets a lot of help from his dad. Jeff and Jack shoot archery and target practice with .22 rifles. Jack is involved with woodworking and, like most teenage boys, video games. Currently in 7th grade, Jack has just joined the VEX robotics team at school.
While a professional career is years away, Jack’s mother doesn’t foresee ET interfering with his dream job. She says,
“His career aspiration is to work for the LEGO Group as a toy inventor or video game inventor.” By nature, Jack is outgoing and friendly. His personality shines first and foremost and he isn’t shy about telling people about ET. Lisa says, “Few people have ever had an issue with his ET. Kids don’t notice it as much as adults. Those that know him see him as creative, sweet, funny, and loving.” As parents, Lisa and Jeff are proud of their son and eager to share his story with others. Early diagnosis is important when possible. Lisa emphasizes that and one with ET should not be ashamed. Neither they nor family members should avoid discussing the condition.
“Don’t find it too sad to discuss. My husband’s family knew of ET in their family. For years, they saw the symptoms in Jack, but thought it ‘too painful to discuss.’ They decided not to tell us,” she says. “We could have treated Jack sooner. Thanks to information from IETF and a wonderful pediatrician who is always willing to help, Jack has been doing much better.”