Lynne Lukes has been a licensed speech-language pathologist for over 20 years. Four years into the marriage, Lynne and Ken started a family in December 1996 when their first daughter, Delanie was born. Their family continued to grow when Rileigh was born in July 1998. Although Rileigh was born with a low birth weight, she caught up with her peers by age 6 months and hit all of her developmental milestones on time. However, at the age of 3 1/2 years, she began regressing. She stopped asking questions that all three-year-olds ask and seemed to be in her own world. Rileigh was taken to a neurologist, as well as several other specialists, who did not see any reason for concern. Six months later, that same neurologist diagnosed her with Autism, or PDD. Although Rileigh’s language was very characteristic of children with autism, she remained very social and often behaved like a typical child. However, life in the Lukes’ house was far from typical. Every day was a day of home programs and driving to various therapy centers so Rileigh could receive OT, PT and Speech Therapy. Obtaining the services Rileigh needed was always a struggle.
Like many families whose children are affected by autism, the Lukes family researched the latest treatments. Rileigh was put on the gluten-free, casein-free diet and responded. Later, the Defeat Autism Now protocol was used and each day Rileigh’s autistic behaviors diminished. However, the ability to comprehend language and express herself continued to be very difficult for Rileigh.
In 2004, Rileigh was seen by a neurologist in San Diego who diagnosed with her Landau Kleffner Syndrome (LKS). LKS is caused by an abnormal EEG characterized by continuous spike and wave forms during a specific phase of sleep. These types of seizures are silent with no outward appearance, but cause speech and language impairments called “epileptic aphasia.” The Lukes family also found out that Rileigh’s pineal gland had an enlarged cyst growing on it. They were told it was an incidental finding and that it had nothing to do with her seizure disorder. Rileigh underwent a series of medical treatments in an attempt to stop the seizures, including the use of high doses of steroids and the Ketogenic diet. However, nothing would maintain a clear EEG.
After moving to Temecula, the Lukes family had difficulty finding a pediatric clinic that offered the therapies Rileigh needed. There were only a few clinics in the area and none of them offered all the services under one roof. The family drove to San Diego, Oceanside, Encinitas and Orange County to obtain the services for Rileigh. Ken and Lynne became determined to create a therapy center in Temecula that offers multiple therapeutic services at one location. They also wanted to offer the quality of services children often do not receive in the public school system. They wanted to share their knowledge with other families and help them, so that their children can receive the services that will make a difference in their lives. So, in 2008, Lynne and Ken opened Temecula Valley Therapy Services.
In spring of 2009, the Lukes family traveled to Boston, MA to seek the medical advice of Dr. Frank Duffy, a neurologist, and Dr. Peter Black, a neurosurgeon, at Boston Children’s Hospital. After being admitted to the hospital for a week of testing, Rileigh was placed on high doses of Valium, Depakote, and Keppra. This “medical cocktail” began to reduce the number of abnormal spike and wave forms on her EEG. Dr. Black informed the Lukes that Rileigh’s pineal cyst was growing but that it was inoperable and not causing any of Rileigh’s deficits. After returning home and waiting six months, Rileigh’s EEG was clear and has remained clear for the past two years.
In August 2011, the Lukes family was faced with yet another medical crisis. Rileigh’s pineal brain cyst was actually a brain tumor andhad finally grown so large that it was enlarging the ventricles in her brain and was causing hydrocephalus. The Lukes were told Rileigh would need a shunt or a procedure known as an Endoscopic Third Ventriculostomy (ETV), and eventually neurosurgery but only when her hydrocephalus was life threatening. Rileigh’s neurosurgeons were unwilling to remove her tumor stating that it was inoperable and would most likely cause severe brain damage. The Lukes family refused to believe that this was the only solution. After many days of searching the internet, reading articles, and speaking to neurosurgeons, they found Dr. Shahinian of The Skull Based Institute (www.skullbaseinstitute.com). Dr. Shahinian reviewed Rileigh’s MRI and determined that he could remove Rileigh’s tumor endoscopically. On August 10, 2011, Rileigh underwent endoscopic skull base surgery. It was the scariest day for the Lukes’ family knowing they had taken a risk trying to ensure a better future for their daughter. After less than two hours of surgery, Dr. Shahinian was able to remove the tumor and reported that everything went very well. Rileigh spent two days in the hospital and returned home making a full recovery. The Lukes Family believed that had witnessed a true miracle and feel forever indebted to Dr.Shahinian for saving their daughter’s life.
Although Rileigh is a happy, loving and determined little girl, she has been through a lot for a fourteen year old. The whole family has. Autism, PDD, LKS, whatever you call it, affects the entire family. Rileigh is still on her road to recovery and Ken and Lynne continue to advocate for Rileigh whenever necessary so that she may have all that life has to offer.