| Literature >>> |
|
|
|
A high school sophomore, Ashley was diagnosed with HSS three years ago after being hit by a car. That seemed to bring out the symptoms of the disease. She now gets botox injections every two months. Ashley first got them in her jaw area but also receives them now in her tongue, left hand and neck. “We have seen a lot of improvements,” said her mother, Donna Helton. “She can now open her hand and pick up things. Before, she kept it in a closed, clinched position and turned up towards her shoulder. She also kept her head turned to one side, which has improved.” Botox, however, is a controversial drug made of the poison that causes botulism. Its efficacy in treating HSS has not been proven, although it has been used as a therapeutic tool since the late 1980s. While botox has gotten attention recently because it is used to smooth out wrinkles in the skin, it also is used therapeutically to relieve dystonia. Botulism toxin is injected into specific muscles where it acts to reduce the involuntary contractions. The injections weaken muscle activity sufficiently to reduce a spasm but not enough to cause paralysis. Ashley is under the care of a physician, who administers the injections. It is important that a trained doctor give the shots. The physician should be familiar with the clinical features of dystonia and the involuntary movements of the person being treated. Some physicians use an electromyograph (EMG) to locate overactive muscles and to measure and record muscle activity. Injections with the overactive muscle are done with a small needle, with one to three injections per muscle. Discomfort at the site of injections is usually temporary, and a local anesthetic may be used to minimize any pain from the shot. The effects on the muscle usually start within days of the injection, peaking in approximately four weeks and lasting three to four months. Ashley might be able to benefit from the injections indefinitely. Based on more than a decade of clinical experience, patients who respond well to botulinum toxin may continue treatment over the course of many years without side effects. In some cases, a patient who has previously been successfully treated begins to experience a loss in benefit, possibly because the nature and pattern of muscle contractions may change over time. It’s also possible that a person may develop antibodies that “neutralize” the injected toxin. In general, side effects are temporary and clear up on their own. Depending on the part of the body treated, some side effects include muscle weakness, difficulty swallowing, flu-like symptoms, and soreness at the site of the injections. Adjusting the dosage or site of injection for future treatments may help avoid these side effects. Ashley still has muscle spasms in her legs. Recently she broke both of the foot pedals on her wheelchair made of solid metal with the force of her muscle spasm. She wears braces to help her walk and keep her feet from turning in. She is also fed through a g-tube and is in a wheelchair 80 percent of the time. She communicates by using a Vanguard Communication device. She is a happy child, always smiling and giving hugs, her mother says. Her parents have programmed her computer to mention her favorite singer, songs, friends and so on. She attends high school full-time and has an aide, Debra Raban, who assists her and a teacher, Noreen Frame, whom she loves. Her favorite activities include listening to music, watching TV, playing with her dog, Bandit, and most of all, shopping. Ashley goes to physical therapy and occupational therapy at Memorial Hospital in Belleville two times a week. “We keep everything pretty much on the up side,” her mother says. “We are constantly joking around and laughing all the time. I think that is what keeps us going.” Botox information for this article was provided by the Dystonia Foundation. You can visit the Web site at www.dystonia-foundation.org |