Help McKenzie
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WTHR 13 News Story McKenzie is in some ways just like your daughter. She loves Frozen, princesses and riding her bike. She likes to play school and watch movies with her family. The thing that is different though is how her brain is wired. What you and I can control, she cannot control. She knows that she is "different", and wants to get better, but how can she when the professionals do not seem to understand? McKenzie has visual and auditory hallucinations that put her in a state of fear. She is terrified when this is happening; shaking, sweating, screaming out for help and not realizing where she is.
McKenzie has had an MRI, CT Scan, EKG, Brain Mapping, and Genetics Testing, all of which have come back abnormal. The doctors here in Indiana cannot explain why, or what that means though. There is something else going on with McKenzie that we desperately need to find out. When our story aired we were flooded with emails about possible leads. We reached out to a Dr. Rosario Trifiletti located in New Jersey. He thinks he can help us. Finally, a doctor that wants to help and not just say, “her needs are too severe or complex”, someone who wants to bring our little girl back. After watching and reading the news story, getting her history and speaking with me over the phone, this is the email I have gotten back from Dr. Rosario Trifiletti:
"After reviewing Mckenzie’s history l feel it is imperative that she come see me in my office located in Northern New Jersey, so that I can examine her. l strongly feel based on her clinical history that Mckenzie suffers from a condition called P.A.N.D.A.S/Pediatric Autoimmune Neuropsychiatric Disorders Associated Streptococcal Infection.As you are aware I am pioneer in this field and feel confident that I will be able to help her as well as your family."
Dr. Rosario Trifiletti MD,PhD,LLC Pediatric Neurologist/PANS Expert
Since there are no doctor’s in Indiana who specialize in this, we have no choice but to travel to New Jersey. The problem is that nothing is covered by insurance. We have an emergency appointment scheduled for January 11. The costs associated with this trip are as follows:
Appointment $600: This will cover a 2 hr or more appointment by an expert in genetics, as well as a well renowned child neurologist. He will order multiple labs and cultures while we are there.
Plane Tickets: $350
Cab Fair: $200 round trip, (This is from, time we are landed, to time we are going back to the airport. The closest airport is 45 minutes away) Greenburgh Taxi Cab, Jersey.
Hotel: $259 Covers hotel stays on the way there and back
Follow Up: $400
MRI with/without contrast: 4,000.00 (Sedation not included)
Microarray: $3,520 Genetic testing
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) and its associated PITAND (Pediatric Infection Triggered Autoimmune Disorder), are medical disorders that are becoming more and more prevalent throughout the state and country. Many researchers, including the National Institutes of Health and the International OCD Foundation believe that PANDAS/PITAND/PANS occurs in some children when antibodies produced to fight an infection mistakenly attack the brain and trigger an onset of behavioral disorders, such as Obsessive Compulsive Disorder (OCD) and/or TICS. Symptoms can also include, multiple psychiatric diagnoses, hallucinations, rages, separation anxiety, prolonged bed wetting and more.
Healthy Place Article
WTHR 13 News Story, Featuring McKenzie
Dr. Rosario Trifiletti
Help McKenzie Facebook Page
McKenzie has had an MRI, CT Scan, EKG, Brain Mapping, and Genetics Testing, all of which have come back abnormal. The doctors here in Indiana cannot explain why, or what that means though. There is something else going on with McKenzie that we desperately need to find out. When our story aired we were flooded with emails about possible leads. We reached out to a Dr. Rosario Trifiletti located in New Jersey. He thinks he can help us. Finally, a doctor that wants to help and not just say, “her needs are too severe or complex”, someone who wants to bring our little girl back. After watching and reading the news story, getting her history and speaking with me over the phone, this is the email I have gotten back from Dr. Rosario Trifiletti:
"After reviewing Mckenzie’s history l feel it is imperative that she come see me in my office located in Northern New Jersey, so that I can examine her. l strongly feel based on her clinical history that Mckenzie suffers from a condition called P.A.N.D.A.S/Pediatric Autoimmune Neuropsychiatric Disorders Associated Streptococcal Infection.As you are aware I am pioneer in this field and feel confident that I will be able to help her as well as your family."
Dr. Rosario Trifiletti MD,PhD,LLC Pediatric Neurologist/PANS Expert
Since there are no doctor’s in Indiana who specialize in this, we have no choice but to travel to New Jersey. The problem is that nothing is covered by insurance. We have an emergency appointment scheduled for January 11. The costs associated with this trip are as follows:
Appointment $600: This will cover a 2 hr or more appointment by an expert in genetics, as well as a well renowned child neurologist. He will order multiple labs and cultures while we are there.
Plane Tickets: $350
Cab Fair: $200 round trip, (This is from, time we are landed, to time we are going back to the airport. The closest airport is 45 minutes away) Greenburgh Taxi Cab, Jersey.
Hotel: $259 Covers hotel stays on the way there and back
Follow Up: $400
MRI with/without contrast: 4,000.00 (Sedation not included)
Microarray: $3,520 Genetic testing
PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus) and its associated PITAND (Pediatric Infection Triggered Autoimmune Disorder), are medical disorders that are becoming more and more prevalent throughout the state and country. Many researchers, including the National Institutes of Health and the International OCD Foundation believe that PANDAS/PITAND/PANS occurs in some children when antibodies produced to fight an infection mistakenly attack the brain and trigger an onset of behavioral disorders, such as Obsessive Compulsive Disorder (OCD) and/or TICS. Symptoms can also include, multiple psychiatric diagnoses, hallucinations, rages, separation anxiety, prolonged bed wetting and more.
Healthy Place Article
WTHR 13 News Story, Featuring McKenzie
Dr. Rosario Trifiletti
Help McKenzie Facebook Page
Organizer
Amber Becker
Organizer
Mooresville, IN
