Family & Friends Rally for Scott the "Riddle Man" Blanchard

Danbury, CT 06811- May 13 2016 A 46 year old, and lifelong Danbury resident Scott the “Riddle Man” Blanchard’s life changed quicker than you can snap your fingers, or blink your eyes. Scott’s life began to worsen week after week. What you’re about to learn is mindboggling. For 3 months Scott underwent several CT Scans, blood tests and an endoscopy all which came back “Normal.” This all came after multiple trips to the Emergency Room, doctor appointments with Vascular Surgeons, GI Doctors and Surgeons, countless Emergency room doctors, and even different emergency room doctors at Yale New Haven Hospital. It was upsetting and discouraging as some doctors came just shy of saying Scott “It’s all in your head.” What Scott didn’t know was that on March, 25, 2016 within 45 minutes of performing a short neurological exam, reviewing his past medical history and current symptoms Scott’s neurologist had a preliminary diagnosis. Scott’s neurologist then ordered a MRI of his cervical and thoracic spine. He underwent a spinal tap without any difficulties, but it was the results from that moment on, that changed his life forever. Scott’s spinal tap showed an elevated protein level. Finally after three long painful months he also had a diagnosis. Guillain Barre Syndrome.

What is Guillain Barre Syndrome? Is there a cure? Will he ever get better? Could he die?

Guillain-Barré syndrome (GBS) is a disorder in which the body’s immune system attacks part of the peripheral nervous system. The first symptoms of this disorder include varying degrees of weakness or tingling sensations in the legs. In many instances the symmetrical weakness and abnormal sensations spread to the arms and upper body. These symptoms can increase in intensity until certain muscles cannot be used at all and when severe, the person is almost totally paralyzed. In these cases the disorder is life threatening, potentially interfering with breathing and, at times, with blood pressure or heart rate and is considered a medical emergency. Such an individual is often put on a ventilator to assist with breathing and is watched closely for problems such as an abnormal heart beat, infections, blood clots, and high or low blood pressure. Most individuals, however, have good recovery from even the most severe cases of Guillain-Barré syndrome, although some continue to have a certain degree of weakness.

Guillain Barre syndrome can affect anybody. It can strike at any age and both sexes are equally prone to the disorder. The syndrome is rare, however, afflicting only about one person in 100,000. Usually Guillain-Barré occurs a few days or weeks after the patient has had symptoms of a respiratory or gastrointestinal viral infection. Occasionally surgery will trigger the syndrome. In rare instances vaccinations may increase the risk of GBS. After the first clinical manifestations of the disease, the symptoms can progress over the course of hours, days, or weeks. Recovery can take weeks, months or as much as 3 years or longer.

After being diagnosed with GBS Scott was admitted for treatment. He started 5 days of IVIG treatment and then was discharged to in house therapy to work on building his strength and ability to balance, so he could walk with the assistance of a walker. Scott had daily Physical and Occupational therapy for 14 days, and was then discharged to continue home therapy. He begged the hospital staff to allow him to stay another week for therapy but was discharged against his will. He was evaluated by his home therapist who recommended 4 days of therapy a week until he could be seen on an outpatient basis. The very next day his therapist arrived and assisted him to get out of bed. Scott had an increase in pain, a 15 on scale of 1-10. He also had a new symptom, bilateral facial tingling. Scott could not do any therapy because the pain was too intense. He called the doctor because his therapist stated she was concerned about his new symptom and the fact that his pain could not be managed to a level where normal ADL’s could be carried out even with assistance. The doctor on call suggested Scott go to the emergency room. Based on his past experiences Scott decided not to go and with the help of the on call staff from his neurologist office, his appointment was changed from April 27th to the 18th.He wouldn’t have made it if his Mom didn’t drive him to the neurologist’s office.

Scott went over his discharge and why he thought it was too soon. Scott was carefully reexamined and sent to the Emergency Room to be directly admitted. This was his first relapse within nineteen days of diagnosis and just “Four days after discharge”.

Scott soon began his IVIG treatment; again Scott didn’t see any change after his second round of IVIG. He was informed on day 2 by the Residential teaching team that they were advising him to go home to finish his last three treatments.

Scott was dumbfounded, saying, “What if I have a reaction?” The team emphasized that a nurse would be with him throughout the process, checking vitals to make sure they were within normal limits. Scott replied clinically there was no way to be 100 % sure; since each batch of IVIG is assigned a unique lot # which could cause a new reaction. Finally after some in depth questioning by Scott, the real reason was revealed. He was not shocked to learn that it was not that the insurance company did not want to pay for the remaining treatment, but rather because of “Administrative Reasons.” This was very discouraging since Scott thought he was let down by Western CT Health Network’s decision. Scott finished his final three days of IVIG treatment and was discharged to Glen Hill Rehabilitation Center, where he would be having both Occupational and Physical therapy. After only one week of being admitted to Glen Hill Rehabilitation Center, Scott relapsed yet again. He was now in a wheelchair, and unable to walk. Exercises now needed to be done with the assistance of the therapy team

By now his family and friends were noticing his insurance bills coming in and on the rise. One of his best friends who is like a sister decided to start a go fund me campaign so Scott’s family, friends, co workers and anyone else that wanted to help him, could on this secure site...

Most recently, and because of the changes in his ability to walk an EMG was ordered by his neurologist and the results puzzled him, so he referred Scott to a neuromuscular Doctor from the UCONN Medical team in New Britain, CT. Most likely other exams and blood tests will be ordered routinely to determine if this is a part of his GBS or something else that has yet to be diagnosed.

Those who do not know Scott; or someone that has been diagnosed with, or taken care of someone with GBS will never know what “Hell on Earth” they go through. Looking at someone diagnosed with GBS, you will say, WOW you look GREAT, and we do, but the pain we are hiding behind that beautiful smile is unbearable we are holding back to protect you the family, friend, co-worker or care giver from something so debilitating that thinking of it alone terrifies us. Despite all this we stand tall and experience it every second of every day of our recovery.

In the end, a person with GBS may eventually fully recover from their motor function to the level it was before their affliction with the syndrome. While they may be left with no physical reminders of the disorder, their family and friends will always remember their sudden incapacitation. The emotional scars from such an incident can last a lifetime.

If you would like to learn more about Scott’s Walk through these difficult and trying times please visit his gofundme page at https://www.gofundme.com/awalkwithscott

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