Why is it so hard to get insurance coverage??? This is my dilemma these days. BlueShield is still denying Connor's visit with the neurologist in Big City in May. Below is the letter I wrote for the Level 2 grievance...hopefully this will do it since they denied my Level 1 grievance, I got smarter this time and requested a ped neuro review it...if not, it'll be $500 for our visit...ughh. Keep your fingers crossed for us.
I did not include the attachments here, but it was about 20 pages worth of research and supporting evidence. I also took out identifying info....don't want to be sued for slander!
Dear Sir or Madam:
This letter is in regards to the denial of services for Connor. The referral/case number is ####, reference number ####. I am appealing this decision. I strongly believe our situation and the medical facts support the necessity to seek Out of Network treatment at an In Network benefit level. A Family Medicine practitioner reviewed my Level 1 grievance. I feel that a Pediatric Neurologist, specializing in Epilepsy should be reviewing this case.
My family has been working with neurologists for over two years with our older son, Austin. Please let me explain his history. It was New Year’s Day 2004. We had a healthy 16-month-old little boy and I was 31 weeks pregnant with twin boys. It was supposed to be a happy time. My mother in law mentioned she noticed Austin making a strange movement. His head would dip down and his eyes would roll up. She saw it occur maybe once or twice in a 4-hour period. Within three days it was slightly more frequent and we went to see our nurse practitioner, in-network with BlueShield. She said it sounded suspicious and recommended we call a Pediatric Neurologist the next morning. She warned us that it could take a month or so to actually get an appointment. However, on the way home from the NP visit, Austin had a stronger head movement and he began to cry uncontrollably. I called the NP who suggested we go to the Emergency Room at Large Upstate Medical Center. She said we should be able to see a Pediatric Neurologist immediately.
In the Emergency Room we met Dr. KM. Until recently she was an in-network neurologist for BlueShield. She agreed his case sounded suspicious, even though we didn’t see any questionable movement at that time. Austin was admitted for an EEG the following day. The result of the EEG was a diagnosis of Atonic seizures. He was prescribed Phenobarbital and sent home. We were lead to believe this would be an easy thing to take care of and we’d have our little boy back to ‘normal’.
Within a few days, the mild, almost unnoticeable movements became violent head drops that would occur in clusters. The head drops then became full body movements. His tiny body would nearly fold in half. He soon had upwards of 100 seizures a day. He lost nearly all his speech and cognitive abilities. His MRI showed a brain lesion in his left occipital lobe. He had a spinal tap and extensive blood work. We tried changing medications multiple times. Nothing was working. The stress brought on premature labor. I was now the mom of twin boys and a 17-month-old boy that was cognitively 6 months and seizing constantly.
By March we had seen a Pediatric Neurosurgeon at Large Upstate Medical Center for the brain lesion found on Austin’s MRI. He suggested Rasmussen’s Disease and recommended we go to Big City Children’s Hospital. Dr KM agreed since she was having no luck controlling his atonic seizures. BlueShield approved our trip to Big City Children’s Hospital at an in-network benefit level.
The Pediatric Neurosurgeon at Big City Children’s Hospital felt it wasn’t Rasmussen’s Disease but an unidentified seizure disorder. He referred us to Dr. JR, a Pediatric Neurologist/ Epileptologist also at Big City Children’s Hospital (Please see attached reference material). BlueShield again approved our appointment at an in-network benefit level.
Little did we know at this time that Dr. JR would be our savior. He admitted Austin to the Epilepsy Monitoring Unit in late May 2004; almost six months after Austin’s seizures began. A week of video EEG monitoring, an MRI, a PET and two SPECTs revealed that Austin had Infantile Spasms/West Syndrome (IS), a severely debilitating form of epilepsy. The identifying features of IS are the hypsarrhythmic EEG pattern, developmental disability and seizures. (Please see the attached reference material from Epilepsy.com/Professionals and EpilepsyFoundation.org) Upon Dr JR’s review of Austin’s initial EEGs, it was determined that he had had a hypsarrhythmic EEG from the beginning. Dr KM and the EEG staff at Large Upstate Medical Center missed this diagnosis. With a disease like Infantile Spasms, it is critical to get an early diagnosis. The earlier the diagnosis, the better the prognosis for attaining seizure control and regaining developmental losses. However, like many neurological disorders, Infantile Spasms is not an ‘easy’ diagnosis to make, especially if the neurologist doesn’t specialize in treating Pediatric Epilepsy and Seizure Disorders. The identifying feature is the background pattern called hypsarrythmia. Most neurologists reading EEGs focus on the spikes and waves and don’t look at the background pattern. We were told this is why Austin’s diagnosis was completely missed.
Over the next two months, Dr. JR changed his medications to ones that were known for their efficacy in treating IS. By August 2, 2004, Austin had his first seizure free day in 8 months. We continued to test Austin for a possible underlying cause. In September 2004, we determined that Austin had a genetic mutation on his TSC2 gene. This gene is associated with Tuberous Sclerosis Complex (TSC), however this exact mutation has not been positively linked to the disease. Infantile Spasms, seizures and developmental delay are all symptoms of TSC. Although Austin hasn’t been diagnosed with TSC at this time, we continue to monitor him. It was eventually determined that my husband had the same genetic mutation and that there was a family history of neurological problems including seizures, narcolepsy, abnormal EEGs and brain lesions. Austin has continued to see Dr. JR for the past two years. Every time he has gone, we have obtained a referral and BlueShield has approved it. Austin is currently seizure free, but still has an abnormal EEG.
Two and a half years have passed since Austin started having seizures. Austin still receives Speech and Special Education services and will soon begin Occupational Therapy services. It has been a daily struggle to try and regain all the months of development that he lost. You can imagine the fear we felt when we realized Connor was not developing on par with his peers. Then we noticed the shakiness in his limbs. In November 2005, at 21 months of age, I took Connor to his Pediatrician’s office. She was aware of Austin’s medical history. Because we had seen no obvious seizures with Connor, we decided to pursue therapy through Early Intervention. We hoped that by giving his development a little ‘push’ things would be okay.
About a month into Speech Therapy, Connor had a major regression coupled with disturbed sleep patterns. We took him to see Dr. SB, a Developmental Pediatrician, in network with BlueShield. He determined Connor has Pervasive Developmental Disorder, Not Otherwise Specified (PDD, NOS). Dr. SB felt that in light of the family history it was important to have Connor tested for seizure disorders and Tuberous Sclerosis Complex (TSC). I have attached Dr. SB's treatment summary for your information. Seizure disorders (and other diseases, such as TSC) can lead to developmental delays and a PDD/Autism diagnosis. While we had not seen any definite clinical seizures, there are enough clinical signs to warrant looking for some of the lesser-known seizure disorders. With disorders like Infantile Spasms, and Landau Kleffner Syndrome, background EEG disorder and developmental delays can precede clinical seizures. (Please see attached report from Dr. SB and attachments on PDD from childbrain.com)
On April 26, 2006, Connor had a 30-minute EEG at Upstate Hospital. Dr. NM read the EEG. His impression was “The EEG recording is within normal limits for age. There is no definite potentially epileptogenic activity present throughout the recording.” This says to me, that there could be something and it wasn’t clear. I sense hesitation in his findings and feel that Dr. NM may not have the clinical knowledge to accurately assess my son’s EEG (maybe I am an overly concerned mother, but I have been down this road before). Also, the report doesn’t mention if the background graphings were normal or if they were even examined. As I mentioned earlier, this is a critical element in pediatric EEGs.
According to the website for his practice, Dr. NM specializes in neuromuscular diseases. He is a participating physician with BlueShield; however, he is not approved as a Pediatric Neurologist. I have learned over the past two years that it is vitally important to see a physician who specializes in exactly what is wrong with the patient. For instance, you wouldn’t take a horse to a small animal vet. Yes they know the anatomy, and they know the basics of treatment, but they have never specialized in the care of horses. (Please see the attached reference material on Dr NM and Connor’s EEG report)
We were able to arrange a visit to see Dr JR on May 10, 2006. Austin already had an appointment scheduled and Dr. JR was able to see Connor as well. He also felt Connor’s symptoms warranted further review based on Austin’s history.
The reason I wanted Connor to see Dr. JR is I truly feel he ‘saved’ Austin. He was kind, compassionate and extremely thorough in his diagnosis and treatment. He specializes in Pediatric Neurology and is part of their Epilepsy and Tuberous Sclerosis Complex programs. He is board certified by the American Board of Psychiatry and Neurology in Child Neurology and is a professor at Renowned Medical School. He is involved in the most current research for Epilepsy and Anti-Epileptic Drug treatments. I don’t believe any of your in-network providers have credentials that match those of Dr. JR.
Dr. JR feels that there are no neurological issues at this time. However, based on family history, he recommends genetic testing and close observation. His recommendation mirrors Dr SB’s. If Connor shows any more periods of regression, a 24 hour EEG and a sleep study should be completed. It is possible that the 24 hour EEG didn’t capture night time events.
Although it appears Connor, may not have any neurological impairments at this time, I couldn’t take the chance of wasting five months of Connor’s young life having him treated by someone who isn’t aware of the family history and isn’t up to date on seizure disorders. I want Connor to receive the same level of care that you have approved for his older brother. Also, it is known that a normal EEG does not rule out Epilepsy, nor does an abnormal EEG conclude a person has Epilepsy. It requires taking all developmental and neurological factors into account as only someone specializing in this field of Pediatric Neurology can do. Please see the previous attachment from the Epilepsy Foundation’s website for more information.
I hope BlueShield will reconsider and approve Connor’s visit with Dr. JR. I wish that the Capital Region had a stronger Pediatric Neurology program. I don’t like having to travel 3 hours to receive treatment, and our family is not alone. In my two plus years experience, I have encountered many families that can’t get the neurological treatment that their children need. This is not a poor reflection on BlueShield, but a reflection on the Capital Region’s medical community as a whole. BlueShield offers 3 Pediatric Neurologists. Dr. HK is fabulous and would be my first choice. She is Austin’s secondary neurologist and specializes in Epilepsy. However, Dr. HK is not accepting new patients unless they have already been diagnosed. Even then, she only will take a secondary role because she is only in the Capital District 2 days a month. I have discussed Connor’s case with her and while she feels I have made the best decisions, she can’t ‘go on record’ as saying that because she is not Connor’s doctor. Your other two options, Dr. LV and Dr. TF, while very competent neurologists, do not specialize in Epilepsy.
No mother wishes their child has neurological/developmental issues and certainly no mother wishes two of her children have problems, however, I am facing this head on and fighting for the best care they can receive. BlueShield has always afforded our family the best care possible, please do so again. Thank you for taking the time to read through this extensive medical history. Please do not hesitate to contact me if you have any questions regarding the information I have included herein.