When Abigail Horn and Richard Herr first noticed their son Ricky's tics a few years ago, they weren't quite sure what to think.
Abigail Horn, who has type 1 diabetes, cherishes time with her son, Ricky Herr, who has Tourette's syn
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Ricky Herr is a typical 7-year-old who enjoys playing outdoors with his friends, going to school and having fun. But his unusual body movements and vocalizations had them baffled.
"We kept asking him, 'What's the matter? Why are you doing that?' " recalled Horn.
Ricky, however, didn't realize what he was doing, and he wasn't able to stop. The more nervous he felt, the worse the tics would get. He blinked rapidly, shook his head, grunted and stuttered when he spoke.
"I feel terrible now, because we didn't know he had Tourette syndrome. We kept telling him to stop it, when he couldn't help it," said Horn.
The Mount Joy couple took their son to the doctor two years ago when the tics became more prevalent.
Ricky saw a neurologist at Penn State Milton S. Hershey Medical Center and that's when he was diagnosed with Tourette's.
"It could be worse," said Horn, about the identification of his health problem, which is not life-threatening. She, herself, has faced the challenges of juvenile diabetes all her life. [See related story, this page.]
But did her own medical condition, some wonder, contribute to her son's syndrome? There is no known connection, she noted, between her diabetes and her son's neurological disorder.
Some studies indicate that abnormal metabolism of the brain chemical dopamine might be connected to the development of TS, and it could be hereditary. No one else in the Herr or Horn families, however, is known to have TS.
Back to schoolAs Ricky faces a new academic year, he and his parents say it's important for people to know more about Tourette's syndrome; the more the public understands, Ricky's family believes, the more compassionate — and the less fearful of his facial and body movements — they might be.
According to Dr. William H. Trescher, division chief of the medical center's pediatric neurology department, Tourette's syndrome symptoms usually start between ages 7 and 14. "The tics are often worse during stressful times," the doctor said, "so that children might have more trouble at school than in the summer months when they can relax."
Ricky's friends have come to barely notice his tics, and teachers at his school — Donegal Springs Elementary — treat the boy well, the family said, although he has had some problems with others.
A substitute teacher who was not aware of Tourette's syndrome, for example, scolded him when he began stuttering, blinking and struggling to speak, they related. She thought he was fooling around.
And a clerk at a discount store made fun of him when he couldn't control his twitching and blinking. Ricky was so humiliated he started crying.
"I felt really bad. He was mean to me," said Ricky.
The more relaxed people are around him, the more relaxed he is, and that reduces the severity of his symptoms.
"My friends, Keyshawn and Ashton, never make fun of me," said Ricky. "They stand up for me if anyone does."
Ricky takes medication to help control his tics. It also helps when others treat him with respect and understanding.
According to Dr. Trescher (who is not the doctor Ricky saw; his doctor recently left the medical center), some drugs do have side effects. But, he noted, many children can learn to control their tics without the use of drugs. Relaxation therapies such as yoga and biofeedback are sometimes sufficient.
Some children's symptoms can get worse in puberty. "But many patients improve as they get older and learn ways to control the tics," said Trescher. "A few may recover completely after their teenage years."
"We don't know if Ricky will get worse," admitted Horn. "For now, he is doing very well." He and his family, which also includes a younger sister, Beth, 6, hope to continue to share what they have learned about TS, so Ricky and others like him will avoid ridicule and misunderstanding.
They've spoken with school officials in the past and have provided an educational Tourette Syndrome Assocation-produced video to the school.
Some backgroundWhile it was once considered obscure, it is estimated that as many as 200,000 people in the United States have Tourette's.
Ricky's condition is named after the doctor who first diagnosed it, Georges Gilles de la Tourette, a French neuropsychiatrist who successfully assessed the disorder in several patients in the 1880s. Prior to that, in 1825, French noblewoman Marquise de Dampierre was the first reported case of the as-yet-unnamed disorder. She suffered from various facial and motor tics that could not be explained, thus prompting study.
What Tourette discovered in his early research was that the syndrome is a neurological disorder that begins in early childhood or adolescence. The first symptoms are involuntary movements or tics of the face, arms, limbs or trunk. The tics are frequent, repetitive and rapid, and are likely to include eye blinking, nose twitching, grimacing, grunting, neck shaking and throat clearing.
SymptomsAccording to the Tourette Syndrome Association, many with TS have the urge to repeat certain motor activities, which might include hand washing, head scratching, rubbing their hands together, kicking or stamping their feet.
"There seems to be some connection between obsessive-compulsive behavior and Tourette," noted Horn.
"Ricky is obsessively neat and very compulsive."
The symptoms that cause the most trouble for those with Tourette's syndrome are involuntary vocalizations such as grunting, shouting and barking.
In severe cases, the verbal tics might consist of the involuntary use of obscene words, which is known as coprolalia, as well as obscene gestures. While these types of tics are rare, they can have dire social ramifications.
Symptoms of TS can vary from mild to severe. Associated conditions can also include attention-deficit and other learning disorders. Tourette's syndrome occurs in all ethnic groups; it is more likely to manifest in males than in females.
On the bright side, those with Tourette's syndrome can lead full and productive lives, with a normal life expectancy. There are lawyers, doctors, athletes, teachers and persons in all professions with TS, and there is no impact on intelligence.
An important concern for Horn, right now, is education.
"You wouldn't make fun of someone with diabetes or asthma," she said. "We had to learn about Tourette syndrome for Ricky's sake. And we want others to learn, too."
The Tourette Syndrome Association has a teacher's guide, documentary and lesson plan, "I Have Tourette's but Tourette's Doesn't Have Me," that helps teachers and students learn about TS. Check the Web site www.tsa-usa.org.
Type 1 diabetesSix-year-old Beth Herr watched her mother intently, almost protectively.
When Abigail Horn quietly asked for a glass of orange juice and sat on the sofa, the little girl rushed to pour it and handed it to her mom. As Horn took a sip, her young daughter stroked her cheek and asked, "Are you OK?"
Horn assured Beth that she was feeling better and thanked her.
Other children might balk at such a request from a parent. Some might even refuse. Beth knows that getting that juice, or calling grandma for help, could mean life or death for her mother.
Horn, of Mount Joy, is only 27, but she has had juvenile diabetes — or type 1 diabetes — since she was 5. Although she tests her blood sugar many times a day and takes insulin and other medications regularly, her blood sugar varies widely from hour to hour, even minute to minute.
Normal blood-sugar levels are around 80 to 100. Horn's blood-sugar levels are so erratic that they dip as low as 13 and climb dangerously high — to as much as 600 — all within the same day. When her blood sugar is low, she feels weak, tired and dizzy. She can pass out, unless she balances her blood sugar with juice, peanut-butter crackers or another snack.
When her blood sugar rises too high, she feels anxious, jumpy, thirsty and has trouble breathing. This is especially risky and she needs insulin immediately before she goes into a diabetic coma. She wears a bracelet so that medics know she has diabetes.
"But they know anyway. The ambulance comes to my house a few times every three or four months. They all know me," said Horn.
Changed mindTwo years ago, Horn was in line to receive a pancreas transplant that she hoped would end the roller coaster of diabetic complications. She qualified as a candidate and was put on the waiting list at the University of Maryland Medical Center in Baltimore. She was optimistic that a match would be found for her type O negative blood, but that didn't happen.
When her blood-sugar level dropped to 16 at the hospital and she passed out, she said, she became wary of going through a pancreas transplantation, which carries the serious possibility of organ rejection. "I changed my mind and now I'm no longer on the [transplant] list," said Abigail. "I realized how risky it was."
For now, she continues to live life on a precarious balance. Her boyfriend, Richard Herr, who is the father of her children, Beth and 7-year-old Ricky Herr, keeps a watchful eye on her. When Richard Herr is at work, Horn's father, Edwin Horn, is around to help his daughter.
Both Beth and Ricky are aware of what to do if Mom needs something. They rush to get her juice or her insulin kit. If she is alone with the children, they will call her mother, Rebecca Horn. Both know how to dial 911 and they have done it on a few occasions.
"When Mommy needs help, we help her," said Beth.
Horn is a regular patient at Norlanco Medical Center and she also attends a program at Hershey Medical Center for diabetics.
Most diabetics have type 2 diabetes, or late-onset diabetes, which can often be controlled with diet, weight loss, exercise and medication.
Type 1 diabetes is much harder to control and is known as juvenile diabetes because it typically occurs in younger people. Over time, damage can occur to the heart, kidneys and other organs.
Highs and lowsRebecca Horn recalls being told that her little girl might not live a long life. Yet, she has continued to carry on. Abigail Horn even took a chance when she had her two children — without complications. Neither of them shows any signs of diabetes.
For Horn, being sick is just a fact of life. She is unable to work because of her disability. She sticks close to home so that help is always nearby. Her arms, legs and fingertips are scarred because of all the pin-prick tests and insulin injections. A trip to the mall or shopping at the grocery store can be scary.
"I used to be able to tell if my blood sugar was getting low or getting high. Now it just fluctuates all the time. I can't always tell," she admited. "That makes it hard to go out."
Still, she tries to live a full life with her boyfriend, children and family. She has lots of friends, who check in on her regularly. Her endearing personality and hopeful outlook keep her going. Her mother calls her a "trouper," who has won the hearts of friends, family and medical personnel.
"It's not ideal and, yes, it's a struggle. But I can't complain," said Horn, with her two children looking up at her. "I do the best I can."
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