Jackson’s Life Sentence is NOT Autism

Grrrrrrr.  So FRUSTRATING!  We went today to see a local Pediatric Neurologist.  Our appointment lasted about half an hour, and in that thirty minutes, the take home message was, “we’ll do some bloodwork to look for chromosomal abnormalities, as well as a 30 minute sleep EEG, but I’m pretty sure those will come back clean, so keep doing your ABA and behavioral therapies.  Jackson’s brain is wired differently, and he is severely Autistic.”  It makes me so angry that doctors can speak to parents of Autistic kids and give them no hope.  Yes, we have a lot of work to do with Jackson, but Autism is not his life sentence.  Yes, behavioral therapy is wonderful, but it is not the only answer.  Jackson has MEDICAL problems, and we need to deal within before he can heal and thrive.

We took the neurologist Jackson’s stacks of testing, his list of supplements and medications.  He browsed through them for about a minute and handed them back, not saying much about them, other than some people decide to try this “alternative” route.  We told him about Jackson’s GFCFSF, his friendly, non-tantrum nature, his amazing sleeping and eating habits, all the many doctors, and other professionals we’ve seen.  I brought up the fact that I didn’t think 30 minutes was enough for a sleep study…what if no seizures are detected in that short time…isn’t a longer sleep study better?  He agreed yes, a longer sleep study is better, but the standard is 30 minutes, so Jackson will do 30 minutes.  He continued, that if we need to retest, we can.  Whaaaat?  If I’m sleep depriving Jackson and he sleeps for 2 hours, why not continue the sleep study for the full 2 hours.  He agreed with the statistic that 30% of Autistic kids suffer from mini seizures, but he was pretty confident Jackson is fine.  Whaaaat?  Seriously?  As Sophie would say, “are you kidding me?”

This pediatric neurologist treats autism by treating the symptoms.  For example, to mask the ADHD-like hyperactivity of some autistic children, he prescribes meds instead of delving into the root of the problem.  Red flag!  I think you can tell, I won’t be returning to this pediatric neurologist.   The key to unlocking Jackson is out there, and if he’s not willing to delve into the underlying issues, I will, or I’ll find the right doctors that can help me.

I am excited about our July 16th appointment with another Pediatric Neurologist in Sacramento, Dr. Chandra.  http://www.checksutterfirst.org/neuro/autism/

I’m hoping here, at the Autism Medical Treatment Center at the Sutter Neuroscience Institute, that we’ll get more compassion, knowledge, and the drive for understanding Jackson’s brain and what may be going on inside that we don’t know about.

To all you parents out there that speak to your pediatricians and other medical professions, take what they say with a grain of salt.  They are not all-knowing beings with all the answers (as I used to think MDs were).  Autism is treatable, reversible and worth fighting.  All the “alternative biomed doctors” should not be completely written off.  Biomed has worked on other children and will work for Jackson.  We are staying the path, staying focused, finding the right treatments, and will keep going as long as it takes.

Autism Medical Treatment Center
Sutter Neuroscience Institute

 

As the only Clinical Autism Treatment Program in the Sacramento Region, and one of the only programs in California, the Sutter Autism Treat Center and Sutter Transition for Autism and Neurodevelopmental Disorders Clinic (STAND) takes great pride in treating an underserved population with compassion and clinical excellence.

We offer the latest in clinical diagnostic techniques and also medical and non-medical treatment recommendations that can offer relief for many symptoms of autism and autism spectrum disorders.

Our vision

To provide comprehensive care to patients along the autism spectrum, while continuing research that will provide a breakthrough cure for autism.

Our Team

Nalini Chandra, M.D.Child Neurologist
Nalini Chandra, M.D., board certified child neurologist and is certified by the American Board of Psychiatry and Neurology in Neurology with Special Qualification in Child Neurology. While her practice focuses on all aspects of child neurology, Dr. Chandra has a special interest in neurodevelopmental/cognitive disorders, autism and headaches. Dr. Chandra received her medical degree from the State University of New York, Brooklyn. She completed a residency in pediatrics at the University of California, Los Angeles, Mattel Children’s Hospital, and a residency in pediatric neurology at Albert Einstein College of Medicine, Children’s Hospital at Montefiore. She is a member of the American Academy of Neurology, Association of California Neurologists, Child Neurology Society and Autism Society of America. She is a Sacramento native and is excited to return and give back to the “community that raised her” after spending the last 15 years training and working with underprivileged urban communities. To learn more about Dr. Chandra or to make an appointment please call (916) 454-6667.

Michael G. Chez, M.D., Child Neurologist
Michael G. Chez, M.D., Director of Pediatric Neurology, has almost 20 years’ experience in the innovative use of drug and immunological therapies for refractory autism and in epilepsy research, treatment and epilepsy surgical monitoring. Dr. Chez received his medical degree from the Indiana University School of Medicine and served his internship and residency in Pediatrics at Johns Hopkins Hospital. He performed his fellowship in Pediatric Neurology at Children’s Memorial Hospital in Chicago and the Cleveland Clinic Foundation in Cleveland, and subsequently received his fellowship training in epilepsy at Rush Presbyterian-St. Luke’s Medical Center in Chicago. Dr. Chez has been certified by the American Board of Pediatrics, and the American Board of Psychiatry and Neurology, with special competence in Child Neurology. He is an Associate professor of Neurology at UC Davis Medical Center. Dr. Chez is the author of numerous articles and recently published a book entitled, “The Medical Management of Autism: A Guide for Parents and Professionals.” To learn more about Dr. Chez or to make an appointment please call (916) 454-6667.

Shawn Kile, M.D., Adult Cognitive-Behavioral Neurologist
Shawn Kile, M.D.Shawn Kile, M.D., is board certified by the American Board of Psychiatry and Neurology and works with the Sutter Autism Team to treat adults with autism and neurodevelopmental disorders. Dr. Kile has a special interest in treating cognitive disorders and has published on topics including neurodevelopmental aggression, traumatic brain injury, encephalopathy, complex partial seizures, neuropsychiatric disorders, and dementia. Dr. Kile received his medical degree from the University of Texas Medical Branch. He completed a neurology residency as well as a psychiatry residency (neuropsychiatry track and forensic fellowship) at the University of California, Davis. He was chief resident in neurology and has recently completed subspecialty training in Cognitive and Behavioral Neurology at the University of California, Davis. He continues to have an affiliation with the University of California, Davis serving as a member of the Volunteer Clinical Faculty in the Department of Neurology. To learn more about Dr. Kile or to make an appointment call (916) 454-6850.

Amer Khan, M.D., Child Neurologist
Amer Khan, M.D., is a child neurologist with special interests in pediatric sleep medicine and general child neurology including epilepsy and headaches. Dr. Khan has been certified by the American Board of Psychiatry and Neurology, with special competence in Child Neurology. Dr. Khan received his medical degree from the University of Karachi, Pakistan. He completed his residency in pediatrics at Cook County Children’s Hospital, Chicago, and fellowship in child neurology at the University of Minnesota School of Medicine, Minneapolis. With each new patient, Dr. Khan collaborates with the child and family to explore all their concerns and neurological symptoms. He works with them in creating an individualized plan of treatment with the goal of improving their quality of life. Dr. Khan also offers many cutting-edge treatment options, including ones for headaches, epilepsy and spasticity. Dr. Khan is an active member of the Child Neurology Society, the American Academy of Neurology and the American Academy of Sleep Medicine. He has been a Sacramento resident for more than eight years. To learn more about Dr. Khan or to make an appointment please call (916) 454-6667.

Christopher A. Lepage, Psy. D., Neuropsychologist
Christopher A. Lepage, Pys. D.Christopher A. Lepage, Psy. D., is a fellowship-trained psychologist with, special training in the autism spectrum and neurodevelopmental disorders. He conducts neuropsychological assessments and autism diagnostic observations for children and adults, and consults with team members including neuropsychology, neurology, social workers, physicians and nurses on each patient’s individual treatment path. A neuropsychological evaluation assists in better understanding of an individual’s functioning in areas such as memory, attention, language and behavior. Dr. Lepage received his master’s in clinical psychology and doctorate in clinical psychology from the Wisconsin School of Professional Psychology. He completed a pre-doctoral internship at Golden State Psychology Internship Consortium and a post-doctoral fellowship at Kaiser Permanente Northern California, South Bay Consortium.  Dr. Lepage is a member of the American Psychological Association, California Psychological Association, International Neuropsychological Society, and National Register of Health Service Providers in Psychology. To learn more about Dr. Lepage or to make an appointment please call (916) 454-6667.

Renee Low, Ph.D., Neuropsychologist
Renee Low, Ph.D.Renee Low, Ph.D., is a fellowship trained in neuropsychologist with specialty training in understanding the relationship between brain function and behavior. Dr. Low has more than 10 years experience working with children and parents affected by autism. Active in research, Dr. Low has participated in trials on executive functioning and autism, and is currently involved in autism research study with Michael G. Chez, M.D. Dr. Low conducts neuropsychological assessments for patients of all ages and consults with team members, including physicians, social workers and nurses. A neuropsychological evaluation assists in better understanding of an individual’s functioning in areas such as memory, attention, language and behavior. This can help provide diagnostic clarity, determine if cognitive functions have been affected by illness or injury, monitor changes in cognitive functions over time, provide a baseline of functioning prior to treatment or surgery, and provide individualized recommendations. Dr. Low received her master’s and doctorate degrees in clinical psychology from The California School of Professional Psychology at Alliant International University in San Diego. She completed a neuropsychology post-doctoral fellowship at the UC Davis Medical Center with the Department of Physical Medicine and Rehabilitation. Dr. Low is a member of the American Psychological Association and the International Neuropsychological Society. To learn more about Dr. Low or to make an appointment call (916) 454-6850.

Ashutosh Raina, M.D., Child Neurologist
Ashoutosh Raina, M.D.Ashutosh Raina, M.D., is board certified by the American Board of Psychiatry and Neurology with special qualification in Child Neurology. Dr. Raina completed a Residency in Pediatrics at Brookdale Hospital, Brooklyn, NY, and a Residency in Pediatric Neurology at Wayne State University; Children’s Hospital of Michigan, Detroit, MI. He is Fellowship-trained in Clinical Neurophysiology with special interest in refractory epilepsy. Dr. Raina is a member of the American Academy of Neurology. Dr. Raina believes the key to a successful relationship with his patients and their families is to see each new case through the patient’s eyes. His practice philosophy is to care more for the individual patient than for the special features of the disease, and he goes above and beyond by offering kind words, a cheerful greeting, or sympathetic look to better connect with his patients.

We work with a number of specialists to provide ancillary care and treatment to our patients, including:

  • Clinical Psychology
  • Gastrointestinal
  • Genetic Counseling
  • Neurosurgery
  • Pulmonology
  • Sleep Consultations
  • Social Work
  • Speech and Occupational Therapy
Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s