World renown pediatric sleep specialists Dr. David Gozal and Dr. Karen Spruyt assessed 183 pediatric sleep screening instruments for their psychometric qualities to determine if their authors/developers used the 11 recommended steps of instrument validation. They reported that only the Sleep Disorders Inventory for Students (SDIS) and one other Brazilian instrument were developed correctly according to the 11 designated steps of tool development. - Karen Spruyt, Ph.D. & David Gozal, M.D., University of Chicago. This information was provided in the article, "Pediatric sleep questionnaires as diagnostic or epidemiological tools: A review of currently available instruments", in Sleep Medicine Review, 15 (2011), pgs. 19-32.
Dr. Luginbuehl met with Senator John Barrasso, M.D., and Senator Mike Enzi (former accountant) in Washington D.C. in June 2011 to discuss the harmful effects of sleep disorders on children and adolescents' cognition, learning, behaviors, health, and safety. She also discussed with them the importance of universal sleep screenings for all children and adolescents before significant and irreversible harm is done.
The SDIS is an outstanding screening instrument for sleep problems in children. It has been evaluated and critiqued by many experts in pediatric sleep medicine from across the country. The SDIS is considered a major development in our ability to identify and treat children with sleep disorders and will have a national impact. Sleep disorders are a major contributor to behavioral and cognitive impairments in children and are currently not being appropriately identified. The use of the SDIS as a screening device by school psychologists, nurses, etc… will increase diagnosis and needed treatment. I personally have had the pleasure of seeing children referred for a sleep evaluation after being identified by the SDIS. The SDIS is extremely accurate and has led to appropriate treatment with significant improvement in behavior and cognition.
Dr. William C. Kohler, M.D., Director of Pediatric Sleep Services, University Community Hospital, Tampa, FL, and Medical Director, Florida Sleep Institute, Brooksville, FL
Sleep disorders were once considered a problem only in the adult population. Through her seminal research, Dr. Marsha Luginbuehl introduced knowledge of pediatric sleep disorders and their impact on the educational outcomes of youth to the fields of education and school psychology. Her research resulted in the development of the first screening instrument to be used in the school setting, the Sleep Disorders Inventory for Students (SDIS). The significance of her research and the SDIS is far reaching. Approximately 70 million Americans suffer from some type of sleep disorder. Until recently, medical personnel and educators paid little attention to the impact of sleep disorders on the educational outcomes of youth. The SDIS provides educators and other professionals an instrument to screen children and adolescents for symptoms of sleep disorders and prevent the collateral academic and behavior problems often associated with sleep disorders. Dr. Luginbuehl's research has impacted children and families struggling with sleep disorders across the country. Her contributions to sleep medicine and research are recognized both nationally and internationally.
Dr. Kathy Bradley-Klug, Ph.D., Associate Professor and Coordinator of the Graduate Programs in School Psychology at the University of South Florida, Tampa, FL
Congrats and all the best!! A Great Accomplishment.
Dr. Mary A. Carskadon, Ph.D., Director of the E.P. Bradley Hospital and Professor of Neuro and Biobehavioral Psychology at Brown University, East Providence, RI
As part of the assessment course that I teach, I encourage our students to use the SDIS to rule out sleep problems that may be influencing behavioral and emotional problems in youth. In my private practice, I administer the SDIS as part of the intake process. If we move forward with behavioral interventions without addressing possible sleep problems, we may struggle to facilitate positive change for the child.
Dr. Ellie L. Young, Ph.D., NCSP, Associate Professor at Brigham Young University, Provo, UT
The Sleep Disorders Inventory for Students (SDIS) is an amazing product that truly CHANGES LIVES for the better. You can quote me on that!
Debra Sales, Ed.S., School Psychologist in North Carolina
In my experience, it is rare for a doctoral student to develop and complete a research project that will have a significant immediate impact on the practice of medicine. The candidate must not only learn the research techniques needed, but must learn a new medical vocabulary. In addition, they must learn to work within the medical community and its bureaucracy. Dr. Marsha Luginbuehl has successfully done this and identified a deficiency in student evaluations for sleep disorders. Her dissertation, “The Initial Development and Validation Study of the Sleep Disorders Inventory for Students”, presents a significant advance to the evaluation of children with sleep disorders.
The questionnaire has been carefully developed and validated by experts from across the United States. The study demonstrates the presence of a significant number of sleep disorders in students that could impact their health and school performance. The preliminary data has been presented at the Academy of Sleep Medicine meetings in 2003 and 2004 and was well received.
We are so impressed with this work that we are developing training initiatives for school psychologists. In addition, we are working on a way to get the students referred for evaluations in a timely manner when a sleep disorder is suggested. For these reasons, I feel this dissertation (SDIS) deserves your serious consideration of merit. It is truly a monumental work.
Dr. W. McDowell Anderson, M.D., Professor, Chief, Section of Pulmonary and Critical Care Medicine, College of Medicine, University of South Florida and Director of Sleep Clinics at James A. Haley Veterans Hospital and Tampa General Hospital, Tampa, FL
This letter is to recommend Marsha Luginbuehl’s excellent dissertation on sleep disorder diagnosis in pediatric patients and the SDIS. I am the mother of triplet boys who are now age 18 and have been diagnosed with sleep apnea in the past year. My sons were born 5 weeks prematurely and have been treated for many problems that all seem to be tied together. They have each had 5 surgeries for otitis media with tubes, as well as an adenoidectomy at age two, resulting in speech delays and learning disabilities. Allergies and learning disabilities have sent us to many specialists, etc… They have been on medication for ADD and depression, as well as social anxiety, since about third grade. We have done research and consulted diagnosticians and specialists all their lives, and realized that they were mouth breathers and did not sleep well, but NO ONE ever suggested a sleep study, even though part of the problem was that they couldn't wake up for school or early morning activities, even when motivated by rewards and fun.
Last year, when Marsha Luginbuehl asked me to fill out the sleep study questionnaire (SDIS) for her dissertation, I was happy to see what the results would be. She was quite concerned about Warren and Neil’s results, and asked a pediatric sleep specialist to consult with us. It has been so helpful and enlightening. We have had three overnight sleep studies, been placed on CPAP therapy (Warren and Neil), and are now in the process of working toward surgery to remove their tonsils. I am anxious to see the results on their learning disabilities and if the result of better REM sleep (they were getting almost none before CPAP) will make a difference in their ability to face the challenge of school and social life better, perhaps even change the need for so much medication daily.
I am grateful for the knowledge and help the sleep studies have provided, and have learned that the sleep disorder is also tied to growth hormones, anxiety disorders, learning disabilities, and allergies. I wish that we had found this intervention earlier. Even though we had excellent doctors, no one routinely screened for these types of problems. We hope in the future that this study (and the SDIS) will change that, and children will be saved some of the agony our family has had with this problem.
Virgina H., parent of triplets, from Clearwater, FL
P.S. Warren and Neil both underwent surgery approximately 3-6 months after this testimonial was written, and both boys are experiencing less anxiety and more success at work and school because they are able to wake up easier and are more alert and concentrated during the daytime.
My son was in high school and getting failing grades because he was very hyperactive and also acting out or talking back often to his teachers and classmates. The teachers and school psychologist were often meeting with us and trying to get me to take my son to a physician and place my son on ADHD medication. My husband and I only wanted to do this as a last resort. One day my son got into a fight with another boy and was expelled from school for three days. At that point the Supervisor of the School Psychologists met with my son and I, the Vise Principal, and several of my son's teachers. The School Psychology Supervisor started asking me about my son's sleep behaviors, which I thought was unusual since neither his pediatrician nor any other professional had asked about my son's sleep. However, my son had terrible sleep problems, often kicking and rolling around in the night, and difficulty falling asleep and waking up in the mornings. He was often late to school due to this problem and he was always very irritable and difficult to deal with. When I reported this to the supervisor, she recommended that I fill out the Sleep Disorders Inventory for Students, which I gladly did. Finally someone was trying to help my son with his sleep problems. It turned out that my son scored very high on Periodic Limb Movement Disorder and Delayed Sleep Phase Syndrome. The supervisor recommended that I take my son to a pediatric sleep specialist in Tampa, FL for a sleep evaluation because it might improve my son's behaviors if his sleep problems could be corrected. We did this and sure enough, our son had those two sleep disorders. The sleep specialist prescribed Neurontin before bedtime to stop the periodic limb movements throughout the night. The results were wonderful! Our son stopped having the limb movements, could fall asleep at a normal bedtime, and he was waking up to his alarm feeling refreshed and rested. Within one semester our son's GPA rose from "D's" and "F's" to "B's" and even an "A". For the first time in our son's school career, he made the Honor Roll! Even better, his hyperactivity decreased a lot, and he stopped having all the behavior problems at school. This was truly an answer to our prayers and it is wonderful to see our son experiencing success at school and getting along with his classmates for the first time in his life!
Anonymous in Land 'O Lakes, FL
When my daughter, Maia, was 5 days old, we noticed her first spell of sleep apnea. She quit breathing, had purple rings under her eyes and her body was completely limp. I started working on her trying to resuscitate her while my sister called for an ambulance. Thankfully we were near a hospital when this happened and the EMTs arrived within a few minutes and were able to get Maia breathing again. Maia ended up staying in the hospital for one week while all kinds of tests were run on her to try and figure out what was causing the sleep apnea. They found absolutely nothing wrong with her, and they sent us home with an apnea monitor. It would periodically go off whenever Maia stopped breathing. Luckily none of the subsequent apnea spells were as bad as the first one. I would have to move her around and then she would start breathing again. At nine months old, Maia was taken off the apnea monitor because we thought the spells had ended. However, Maia had frequently occurring ear and respiratory infections and had an irritable temperament. The pediatrician kept giving Maia antibiotics for the infections, but that was his only solution.
At the age of five years, Maia had a sleep over at her grandparents house. Maia's grandmother slept with her that night and noticed that Maia would stop breathing for a short time and then as she took her first breath again, she would snore loudly. We were also aware that Maia had very big tonsils, but the pediatrician did not want to remove them. Finally I completed the Sleep Disorders Inventory for Students (SDIS) and discovered that Maia had scored high in the area of Obstructive Sleep Apnea Syndrome. I took these results to the pediatrician who then finally agreed to refer Maia to an ear, nose and throat specialist (ENT). The ENT told us that Maia's adenoids and tonsils were very large. She had both her adenoids and tonsils removed. This procedure stopped the sleep apnea and the snoring. Maia also reported dreaming for the first time after the surgery. The biggest changes that I noticed were the ones that occurred during the daytime. Up until this point, Maia had a very irritable temperament. The tiniest things would set her off on a screaming tantrum. She also still wet the bed several times a night. Almost immediately after the surgery, Maia became more cheerful. We were also able to train her to stay dry at night. It has been explained to me that the reasons for these changes are that Maia was battling all night to breath. Because of this she was never able to sink into the restful REM or dream state of sleep. She was also so focused on trying to breath, that staying dry was impossible. Due to her restless night's sleep caused by the snoring and apnea, Maia also woke up irritable every morning.
About three years after Maia's sleep apnea was corrected, we realized that Maia was losing her hearing in one ear due to all the ear infections she had experienced before the age of five years. Thank goodness the hearing loss could be corrected with surgery, but the hearing loss wouldn't have happened if Maia's sleep apnea had been identified earlier with the Sleep Disorders Inventory for Students, which gave the pediatrician enough evidence to agree to refer Maia for an adenotonsilectomy! It is important to screen your child early for any sleep disorders before long-term damage is done.
I am very grateful that Maia is able to get a better night's rest now and so is she! She is now in middle school and almost a straight "A" student. I wonder if she would be able to perform this well if her sleep apnea had never been identified and corrected? Thank goodness this problem was identified fairly early in Maia's life so that it hasn't impaired her school performance like it does to many students whose sleep apnea is not identified or corrected.
Nicole Sitter, Mother
Robert has always had difficulty in school. His teachers described him as distracted, unfocused, inattentive, and unmotivated. I sent him to several physicians, each with a different diagnosis. He's been labeled "Attention-Deficity Disorder", "Central Auditory Processing Disorder", "Obsessive-Compulsive Disorder", and "Oppositional Defiant Disorder". He's been on medication that either made him sleep through school or caused violent outbursts. He was morbidly overweight due to his lack of interest in exercise and developed an extreme paranoia of P.E. due to his weight and kids picking on him. His grades were never any better than a 'C' or 'D'.
Finally I mentioned to Marsha Luginbuehl my concern for Robert and she gave me the Sleep Disorders Inventory for Students. Following the survey, we visited Dr. Kohler. It was determined after a sleep study that Robert was having 67 apnea or apnea-like episodes per night, and that Robert was just plain tired all the time and unable to focus.
On July 16, 2004, Robert underwent a surgical procedure removing his adenoids and tonsils (to correct his sleep apnea). By September, 2004, Robert had dropped an amazing 26 lbs. and grew 1 1/2 inches! His self-confidence is out of this world! He is more popular in school; he is talking to girls, and the most astounding thing is his first report card - straight A's! His teachers are even talking about dismissing him from SLD (the Specific Learning Disabilities Program) because he is doing too good for those classes. His life is completely changed. I'm seeing a happier, more well-adjusted son."
March 8, 2005 "Robert is still maintaining an 'A' average, and behaviorally, he is doing awesome! He's been a pleasant adolescent and chips in with housework (something he's never done before). His sleep pattern is consistent and he says he feels good in the morning."
Naomi Wipert, Secretary of Student Services, Pasco County School District, FL
Looking back at my late adolescent life I can now say that the discovery of sleep apnea has changed my life for the better. As a teenager in high school, I struggled with this physical disability or sleep disorder. At the time, doctors did not naturally look to a sleep disorder for the first source of my problems. Of course being misdiagnosed multiple times was not only frustrating for both my parents and myself, but also obviously did not help to solve the sleep apnea that I was struggling with.
In high school you could say I was an underachiever. This was not something that I was by choice, but a hand dealt to me and caused by my sleep disorder. Grasping information and reasoning were things I was good at, but still learning was difficult, tiring and simply impossible for me to excel at. I was unable to focus long when studying. This was blown off by teachers as a lack of interest, and I believed it. The information was often dry and of course I would immediately want to do something else, or simply fall asleep. In class, many teachers would swiftly give up on me. I frequently fell asleep during their lectures, which was disrespectful, and made my teachers believe I did not care to learn. It was apparent that school simply wasn’t for me. I was not good at it, and eventually I became totally disinterested. Throughout this time my parents relentlessly tried to find out what was wrong with me. They wanted the best for me, and tried to do whatever it took to help me be successful in life. The first time I was examined, I was misdiagnosed as having Attention Deficit Disorder (ADD). This diagnosis came along with the prescription medication, Ritalin, and the learning disability label. I was horrified, humiliated, and ashamed. Now not only did I not enjoy school or excel at it, but I was also subjected to special treatment and lowered expectations. My parents started to look for a trade that I would enjoy, and transferred me to a vocational school. Taking me away from mainstream classes however did not work well. Slowly my confidence dropped, and I became willing to accept any reason to justify my failures. My next visit to a psychiatrist resulted in a diagnosis of depression, another misdiagnoses. I was given Prozak this time to help cure me, and another excuse for why I was not performing at school. This lack of awareness of sleep disorders kept behavior specialists, the education system, and my parents from finding the root of my problems for many critical developing years of my life.
Luckily for me during a visit to the dentist’s office my sleep apnea and excessive daytime sleepiness set in. I fell asleep in the chair while having my teeth drilled on during a root canal and even gasped for air at times due to the apnea. The dentist noticed the abnormal behavior and recommended that my parents have me tested for a sleep disorder (sleep apnea). I did not like the idea of being tested for another disorder at first, but understanding my parent’s good intentions, I went along with the tests. An overnight sleep study found that I suffered from obstructive sleep apnea. I was referred to an ears nose & throat (ENT) specialist who explained that this problem could be cured with a single surgery (an adenotonsillectomy), and this might solve the other behavioral problems that I was having (ADD, depressive tendencies, daytime sleepiness, etc.). This discovery and surgery changed my ability to be who I am today.
After the surgery, I was able to focus better almost immediately, but it still took me some time to recover. Sadly, it was late high school and I was far behind other kids who were college bound. Even though I was able to function normally now, I still lacked confidence in my abilities stemming from my lack of success in the classroom. Once I graduated from high school, I was able to join the Marine Corps. Only with the correction of my sleep apnea was I able to do this. I went through rigorous basic training where physical stress was high and sleep was short. I then worked 24 hour shifts as an ambulance driver, and was even able to excel intellectually as a legal aide. Through years of success in the military I slowly rebuilt my confidence that I lost during the many unnecessary years of struggle with sleeping disorders. After eight years of military service, I finally gave school another chance. This time around I was able to succeed. School was not normal for me, but I now had the ability, focus, and confidence needed. I graduated with honors from a local college with an associates degree, and am now finishing up my degree in finance from a university. I am thankful for the discovery of sleep apnea, and my parent’s determination to find help for their son. I now have the ability to fulfill my dreams. I am married to a wonderful woman; I am blessed with three beautiful children; I am able to provide for them, and I am successful in a developing career that I enjoy. I do not believe that my life would be the same without the discovery of my sleep disorder. I strongly suggest that parents who suspect their child of having a sleep disorder look to a proper screening and evaluation. Finding the proper cure will change their child's life forever.
Land 'O Lakes, FL