Case Studies of Students' Improvements Post-Treatment of a Sleep Disorder
Matt Luginbuehl -- Obstructive Sleep Apnea
From the time Matt was a toddler, he was hyperactive, oppositional and could tantrum easily due to a low tolerance for frustration. It was very difficult to get him to sleep, and he snored, kicked, and rolled around throughout the night, often awakening in the morning almost as irritable as when he fell asleep the night before. As he reached school age, he was evaluated by a school psychologist and placed in the Learning Disabilities program due to difficulty learning to read and write. He was diagnosed by a medical doctor as having ADHD, but the ADHD medication caused him to cry and become depressed. Later in high school as Matt became extremely tired and lethargic, often falling asleep in school and church, a psychiatrist diagnosed him as having severe depression and placed Matt on Prozak, which also didn't seem to help Matt much. Matt was placed on Homebound education, but that was not effective because Matt would fall asleep while his teachers were trying to instruct him via telephone, so Matt returned to school three months later. It was a nightmare for Matt's parents to get him awake of mornings because he was so tired and kept falling back asleep. Matt's father would drag Matt up and half carry him into the shower, turn on the water, and then leave so Matt would have some privacy. Matt would often lay down in the bathtub/shower, plug the drain, and fall asleep. He overran the bathtub several times, ruining the living room and garage ceilings twice! Matt barely graduated from high school even though his mother, father, and special education teachers' were helping him constantly, and even then he had mostly grades of D's. Matt wanted to have a part-time job to earn a little money and prove that he could do something successfully, but he would always get fired after 3-4 weeks for falling asleep on the job or coming late to work because he wouldn't wake up in time. Matt was fired from 11-12 jobs in about two years. Matt also had one motorcycle and one car wreck because he fell asleep while driving, so his parent's had to restrict his driving. Matt's self-esteem was about as low as it could go, and at times he even talked about killing himself because he was unsuccessful at everything he did. Throughout all these years of struggles, Matt's mother, Marsha Luginbuehl, who was a school psychologist, kept telling Matt's pediatrician, school psychologist, psychiatrist, and therapist about Matt's terrible sleep problems, but they all ignored the symptoms Luginbuehl kept describing and saying, "It's no big deal, he will grow out of it" or "Mrs. Luginbuehl, your son is tired because he has severe depression, and until you accept that, you are interfering with your son's therapy and making excuses for his depression!" In other words, "Butt out Mom because you don't know anything!"
Finally two professionals saw Matt falling asleep and recognized the signs of a sleep disorder. Matt's dentist had to put steel studs in Matt's mouth to hold it open because Matt kept falling asleep during a root canal and having apnea events. Also the vocational rehabilitation counselor witnessed Matt falling asleep during an interview and snoring. They both recommended a sleep study for Matt, but the insurance company would not approve because they said that teenagers don't have sleep disorders. The dentist and voc rehab counselor wrote letters to the insurance company and after six months, they finally approved of the overnight sleep study. Matt was diagnosed with moderate sleep apnea, and an adenotonsillectomy was recommended. However, the insurance company would not approve of this surgery because they said Matt's problems were cosmetic in nature and he didn't need the surgery. After a year of requesting a T & A for Matt, which resulted in denials, Mrs. Luginbuehl got the name of the insurance employee refusing the surgery and threatened to appeal this decision to the Florida Insurance Commissioner if they did not approve the surgery. The insurance supervisor came on the phone immediately apologizing and saying that an appeal would not be necessary because he was approving the surgery!
Matt's large tonsils, adenoids, and a small portion of his uvula were removed surgically. After about 10 days of healing, Matt transformed into a new person at the age of 19 years! He was out running several miles a day on Clearwater Beach when previously he was lethargic and unable to do anything requiring physical exertion. His irritable, oppositional behaviors disappeared and Matt became very even-tempered, kind, and considerate of other people's feelings. Matt changed from a very distractible, irresponsible, and unmotivated person to dependable, more focused, and motivated to do his best. After spending eight years in the military to rebuild his self-esteem, Matt entered college on the GI Bill and is now almost finished with his bachelor's degree in Finance with mostly A's and B's (without any help from his parents or special education teachers!). He does this while working fulltime in a stock transfer company to support his wife and three children. These changes were not possible with special education services, therapy, or ADHD and anti-depressant medications. However, correction of OSA can result in these wonderful changes if OSA is identified early and no brain damage has occurred due to oxygen deprivation. These amazing changes in Matt motivated his mother to return to the university to develop the Sleep Disorders Inventory for Students (SDIS) to help identify sleep disorders early in children's lives so they and their families will not have to experience the learning problems, disciplinary measures with teachers, embarrassment, and damage to self-esteem that Matt endured throughout his childhood and adolescence. Matt describes those years as the worst memories of his life and wonders what would have happened to him if his mother had not persisted with doctors and insurance companies to get him the help he needed?
Hannah G. -- Sleep Disorder of Periodic Limb Movement Disorder (PLMD) & Restless Legs Syndrome (RLS)
When Hannah was 4½ yrs. old, she had been kicked out of three preschools and was being considered for expulsion from a fourth preschool due to extreme ADHD, aggressive and oppositional behaviors toward peers, and poor mood regulation (temper tantrums & frequent crying). Although Hannah was on medication for the ADHD, it wasn’t enough to help teachers manage her behaviors at preschool. Furthermore, Hannah was only going to sleep between midnight and 2:00 a.m. and waking up several times per night even though she had to rise early to get to preschool because her mother was a school nurse. On several occasions, Hannah managed to open doors with several locks and sneak out of the house in the night while her parents were asleep (parents’ home was on the Gulf of Mexico waterways). When her parents awakened, they had to get their neighbors and the police to search for Hannah, fearing she had fallen into the Gulf and drown. They found Hannah about three blocks from home playing! After the mother screened Hannah for a sleep disorder with the SDIS and found she had a high probability of Periodic Limb Movement Disorder (PLMD) and Restless Legs Syndrome (RLS), she took Hannah to a ped. sleep specialist (Dr. William Kohler) for an overnight sleep study to verify the results and get treatment. Hannah did have PLMD and RLS. The sleep specialist took Hannah off her ADHD medication and placed her on a nighttime medication (Neurotin) to stop the PLMD and RLS problems. Hannah started sleeping several hours more per night, and her irritability, aggression, defiance, and ADHD behaviors decreased significantly. When we checked with her mother two years later, Hannah was no longer exhibiting behavior problems and was making good grades in general education classes.
Robert W. - Obstructive Sleep Apnea (OSAS)
Robert was in middle school, over-weight, had low self-esteem and was getting poor grades even though he was receiving special education services for a learning disability. Robert's mother, a student services secretary, came to Dr. Luginbuehl asking if she could complete the SDIS because she feared Robert had a sleep disorder. She said Robert snored loudly and was difficult to awaken or motivate to do chores or homework. She reported that Robert had received many different diagnoses over the years such as ADHD, a learning disability, Bipolar Disorder, Depression, and an Auditory Processing Disorder. Physicians and psychiatrists had placed Robert on various medications, some of which made Robert lethargic, sick, or suicidal and depressed. After screening Robert with the SDIS and discovering that he had a high probability of having Obstructive Sleep Apnea, Mrs. W. took Robert for an overnight sleep study, which verified that Robert was having many apnea events (stopped breathing) per night and was very tired each day. Robert’s OSAS was corrected a month later with an adenotonsillectomy. Mrs. W. reported that Robert lost about 20-25 lbs. in six weeks post-correction, was no longer depressed and lethargic, and started improving steadily in school. By the end of a semester, Robert’s grades had risen to A’s and B’s. A year after Robert's T & A, teachers were discussing the possibility of dismissing Robert from special education due to his academic improvements. Mrs. W. reported that Robert was also much more cooperative with chores and homework at home.
Mali E. - Narcolepsy
Mali was doing fine until her late teens when she started having difficulty falling asleep when she was sitting down watching TV or doing other sedentary activities. She didn’t think too much about it until she gave birth to her daughter. She was alarmed to discover that she was not only falling asleep frequently, but she would often lose control of her arms and drop, or almost drop her baby, especially at times when the infant would be crying and need to be held. Mali was scared to death she was going to do serious harm to her baby if this kept occurring. Mali was tested for various neurological disorders until specialists at Stanford Medical Center reached a diagnosis of Narcolepsy. This is a sleep disorder that not only causes excessive daytime sleepiness (EDS), but also cataplexy (loss of muscle control of the arms, legs, speech, etc... when the person is experiencing strong emotional feelings of fear, anxiety, laughter, anger, etc…). The cataplexy is very dangerous, and these individuals are not allowed to drive a vehicle unless the cataplexy is under control with medications. After Mali was placed on medication for her narcolepsy, she quit experiencing the extreme EDS and cataplexy, and has been able to work part-time in a sleep clinic and raise her daughter to adulthood. Mali says she has to be careful to pace herself and not work too much, and even take planned naps during the daytime, which is common for many people with narcolepsy. However, with proper treatment, she now leads a much higher quality of life and enjoys career success that was not possible when her narcolepsy was undiagnosed and debilitating. Most narcolepsy has onset sometime between 9 yrs. and 25 yrs. of age and is very debilitating if not treated.
David - Delayed Sleep Phase Syndrome (DSPS)
I received a phone call from David’s parents who were distraught because their son, who was a freshman in high school, was no longer eligible for the high school football team due to a sudden drop in grades. This was a big deal because David was a great athletic, the star of the football and basketball teams, and had also been a straight A student until his freshman year. Now his grades had dropped to D’s and F’s and his parents’ dreams of their son getting a college football scholarship or playing for the NFL were jeopardized. David's parents wanted me to find out what was going on with David because he was telling them he didn’t know what was wrong, except that he was tired all the time. I called David into my office and asked him what had changed in his daily life from middle school to high school that was making him so tired. David thought about it a while and finally said, “I got a cell phone for my birthday.” As I inquired further, David told me that he was getting numerous phone calls and text messages from cute, popular girls during the nighttime between 11:00 p.m. and 3:00 a.m. that were keeping him awake half the night (David was very good looking besides being the most talented athlete in 9th grade, so he was quite a catch!). David said he was afraid to turn off the phone at night because these girls might get mad at him and think he was snubbing them. He also didn’t want to tell these girls not to call him after 10:00 p.m. for fear they wouldn’t like him anymore. He said his parents had no idea what was going on at night. After talking to David about the importance of a good night’s sleep for his GPA and future in sports, and having his parents take away his phone and computer access from 9:00 p.m. until 7:00 a.m., David’s grades went back up, he was able to play sports again, and he was still the most popular and sought after guy in 9th grade!
Maia S. (Granddaughter of Dr. Luginbuehl) -- Obstructive Sleep Apnea (OSAS)
When Maia was one week old, her mother and aunt were driving home from the grocery store when Maia's mother realized that Maia had quit breathing and was turning dark blue. The aunt instantly pull the car to the side of the road and ran to the nearest house to phone 911 while Maia's mother desperately worked on Maia, trying to get her to breathe. Fortunately they were near a hospital at the time, so the EMT's arrived in about five minutes. They were able to get Maia to breathing again and rushed her to the hospital. Miraculously, Maia not only survived, but she is a very intelligent teenager today. However, the oxygen deprivation resulted in mild cerebral palsy, which is hardly noticeable unless Maia is doing some gross-motor activity. Hundreds of tests were conducted on Maia after her near SIDS event, and it was decided that Maia had a severe sleep apnea event. She was sent home with an apnea monitor and her mother was told that Maia would out grow the apnea. Maia used the sleep monitor until about one year of age although she still had mild apnea events. In spite of having huge, split tonsils, enlarged adenoids, and frequent ear and respiratory infections, Maia's pediatrician refused to remove her tonsils and adenoids, so Maia continued to have apnea events and was a very anxious and irritable preschooler. Finally Maia's frustrated mother completed the Sleep Disorders Inventory for Students (SDIS), which showed that Maia probably had pretty severe sleep apnea. Mrs. S. took the inventory to the obstinate pediatrician and demanded that he remove Maia's tonsils and adenoids to correct the OSAS. Upon seeing the severity of the SDIS, he referred Maia to an ENT to do an adenotonsillectomy. Maia's anxiety and irritability improved after the T & A and she was doing much better until her little sister died in her sleep in Maia's bedroom at 3 1/2 months of age. This resulted in a resurgence of Maia's anxiety because she knew that she had almost died in her sleep also. After some grief counseling the family seemed to recover. However, the delay in removing Maia's large tonsils and adenoids had resulted in so many ear infections that damage had occurred to Maia's left inner ear and she gradually started losing her hearing. Reconstructive ear surgery was undertaken when Maia was about 8 1/2 years old or else she would have totally lost her hearing in that ear. As a 13 year old teenager, Maia is making good grades in accelerated/gifted classes, although she stills struggles somewhat with anxiety because she knows all too well that death is real and might only be one breath away.