As for the future, LaJoie believes that magnetoencephalography, a technique that records the magnetic activity in the brain and helps determine the origin of the seizures, may be beneficial. “Well-designed research protocols are needed in order to better evaluate the effectiveness of various therapeutic interventions,” she says. “With more research we will be better able to determine which patients should be referred for surgery quickly. I believe that we will be more aggressive in treating these patients and possibly intervening surgically much sooner, thereby optimizing their neurological outcome.”
The outcome for LKS kids is decidedly varied, but aggressive speech and language treatment is a course of action that all specialists seem to agree on. The later the onset of LKS, and the more language development they achieve in their early years, the better. Children who have learned to read and write before the onset of aphasia can sometimes continue reading and writing even after their verbal skills seem to have disintegrated. Some children develop communication akin to sign language. “For children who are nonverbal as a result of Landau-Kleffner syndrome,” says Sharon Willig of ASHA, “speech-language pathologists can recommend and provide assistance with the use of augmentative or alternative forms of communication, such as sign language, communication boards, or speech-generating devices. These communication systems are used in conjunction with verbal language treatment.”
Patricia Prelock, professor and chairwoman of the Department of Communication Sciences at the University of Vermont, conducts treatment research for children with autism spectrum disorders, focusing on supporting their social skill development, a theory of mind, and peer interactions. Her approach is to avoid a prescribed therapy for every child and make things personal. “As opposed to looking at LKS alone, we found it very useful to consider who the child is in the context of their family, school, and community and what the child’s strengths and unique challenges are, building on their strengths while accommodating their challenges.”
The enigmatic nature of LKS leaves parents scrambling for answers their doctors can’t provide. Working to alleviate that problem is Friends of Landau-Kleffner Syndrome (FOLKS), a U.K.-based nonprofit organization dedicated to providing information and promoting research studies, which they publish online. Run by a volunteer committee of parents with LKS children, FOLKS aims to fulfill the need for LKS information among parents and medical professionals worldwide, serving about 300 members. Richard Budnyj took over as the secretary of FOLKS in 2003. “The biggest issue,” Budnyj says, “is that unlike with many illnesses, our children look ‘normal’ and therefore are mistaken as children with a behavioral problem.” Budnyj should know. His own son’s LKS was diagnosed at age 3. He went through four regressions of speech and language, losing every word he knew. To control the boy’s severe epileptic seizures, doctors put him into a coma. It seemed to help. Four years later, he’s a happy sports lover with a fantastic sense of humor. “He may still be behind about two years on speech and language, and he may never end up being the brightest child,” says Budnyj, and then, gratefully, “but he has gone four years without further regressions. His next few years will be crucial to his development and what the future holds. All we can do is hope he continues to progress.” Budnyj believes in accentuating the positive: “I don’t know what the future holds for any of the children with LKS, but we can look to examples that give us hope.”
Somewhere in the middle of Montana, a 52-year-old mother of two is proudly in the midst of her second career, as a cattle rancher. Her first, motherhood, garnered two accomplished children now in their midtwenties; the elder, a daughter, is now a practicing attorney, and the younger son is still in law school. “I’ve had a very lucky life,” she says in a strong, affable tone. Though she prefers to remain unnamed, LKS researchers would know her best as “patient #7” from Mantovani and Landau’s follow-up study. At 5 years old she was a talkative child, but then at 5½, at the onset of LKS, she began to stutter. “It’s strange,” she says, her voice clear with an enviable resonance, like that of a broadcaster, “this ‘brain thing’ happened so long ago, and it’s still a part of my life.” She remembers that time as mere “snatches” of memory and sensations. “It was as though I could hear things—they would come in, and come out garbled,” she describes. Performing the EEGs then was a “very pokey” process—harsh tips were pressed into her young scalp. Her treatment took place at the Central Institute for the Deaf, where she attended weekly sessions to learn how to read, write, and talk, a frustrating challenge she remembers well. “I still have the notebooks and the flashcards with pictures of a chair or meatloaf—I had to relearn how to speak,” she says. She was treated by Landau until she was about 16, then attended a Missouri state school and married her college sweetheart. “I had a relatively normal life,” she says, and then, introspectively, “but I knew I was different. I felt different from the other kids I went to school with.”
Truth be told, LKS children are different. They are as mysterious as they are rare, stumping medical science and allowing half a century to race by with few definitive answers. However, there’s a lot to be learned from these children and the saintlike disposition required to treat, approach, and care for them. “We all take spoken language for granted,” says LaJoie. “We wake up, say good morning to our family, and are able to express our wants, needs, and emotions. Communication allows us to form connections with one another. Imagine that one day you were unable to connect with your loved ones with spoken language. Think of the feeling of being locked in without any clue how to get out. Think of the anxiety and frustration that you would feel. This is what these children go through. Often, these children are dismissed too quickly. However, with a modicum of time and attention, one can see a young child who desperately wants to be heard. The impact of the depth of their impairments not only on the child but on their entire family underlines the need to find a permanent treatment and cure for this condition.”
As for Cody, seven years after the onset of LKS, doctors haven’t noticed any significant progress, and as of now, his family is planning to put him in adult handicapped housing when he finishes school at age 21. “I have a picture of Cody when he was a little boy at Kids’ Cove climbing up the big chain-link fence that surrounded the playground,” Beth says. “Now he doesn’t even know what a fence is.” It’s still too early to determine if Cody will follow in the footsteps of many LKS kids or if his EEG will return to normal around age 15 and, even if it does, what the effects of living with LKS will be. For now, those who love Cody are remaining hopeful and taking each day in stride. “At 11 years old, he still loves for me to rock him on my lap, just like when he was a baby,” says his grandmother with a smile.