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Hi, my name is Kelly Carnicle.
I am starting this “gofundme” page to help my daughter, Danielle, with her medical bills and expenses after 3 months of our terrifying ordeal with undiagnosed Autoimmune Encephalitis. I am also hoping to bring awareness of the disorder to as many people as possible. I am so grateful we have her home now and working on a long road to recovery and rehabilitation. This could take from 6 to 18 months. The possibility of reoccurrence and lasting side effects is still a concern and remains an issue.
Danielle before... she just finished her spring semester at Lone Star College and made the President’s List and was getting ready to spend a week at the beach for her 21st birthday. She was active, vibrant, creative and full of energy.
On 5/21/16 she was experiencing what we thought was an acute psychotic episode (something that has never happened before) and we took her to the ER. Over the next 12 days and after 2 spinal taps, several X-rays, CAT scans, MRI’s, 2 electroencephalograms (EEG), and many other lab tests, no one could tell me what was wrong. All they could say was it had to be a mental health problem and they released her to go home with me. Things continued to get worse from the newly prescribed anti-psychotic medication. We went to a different hospital, a week of the same tests, also giving them over 600 pages and a DVD of her medical records from the first hospital. The labs came back positive with antibody markers for autoimmune encephalitis. Finally a clue to the acute psychotic episodes and paralysis of her left arm. Afterwards another spinal tab was taken to run specialized labs to help diagnose which autoimmune encephalitis was attacking the tissue in her brain. This is also when a doctor told me about an excellent resource, the book “Brain on Fire”, to help me understand what she was going through and what we might be able to expect going forward.
On 6/24/16 the fear of a tumor was presented. Danielle had another MRI scan of her ovaries as it could be causing the autoimmune encephalitis response by the body. I was acutely aware this was a possibility as it was a symptom of NMDA autoimmune encephalitis (which causes severe inflammation of the brain tissue). All I could think was… could this be linked to the aggressive form of Breast Cancer that took her mom in February 2013. Once the test came back negative and no tumor, I knew we could get through this. After several more weeks of tests and treatment, which included chemotherapy (to suppress the immune system) and ATP (a blood transfusion to remove attacking proteins from the bloodstream), she was able to leave the hospital on August 9, 2016. It was a struggle during this entire process. This disorder leaves the patient in a mental state with delusional thinking causing them to be terrified of the people and events that surround them.
Specialized testing was done and her paper work was sent to the University of PA. A leading research team reviewed her labs. All tests have come back negative for “current” known types of autoimmune encephalitis. This puts her into a larger group of patients this “unknown cause” with “unknown reoccurrence”. It is shocking that most health care professionals barely know of (or nothing at all) about autoimmune encephalitis. I am so grateful we pushed for second opinion and they pushed for a cause. I fear how many people are misdiagnosed with mental health problems when they have a sudden psychotic episode and do not receive a proper diagnosis.
Danielle and our family are healing.
Thank you for working toward a future where families receive fast and effective healthcare!
Kelly Carnicle
Here are some useful links to help you understand this complex and serious disease that have help me through this process.
Susanna Cahalan "Brain on Fire"
http://www.susannahcahalan.com/
University of Pennsylvania
http://www.uphs.upenn.edu/news/News_Releases/2013/07/dalmau/
Encephalitis Global
http://encephalitisglobal.org/
Autoimmune Encephalitis Alliance
https://aealliance.org/
I am starting this “gofundme” page to help my daughter, Danielle, with her medical bills and expenses after 3 months of our terrifying ordeal with undiagnosed Autoimmune Encephalitis. I am also hoping to bring awareness of the disorder to as many people as possible. I am so grateful we have her home now and working on a long road to recovery and rehabilitation. This could take from 6 to 18 months. The possibility of reoccurrence and lasting side effects is still a concern and remains an issue.
Danielle before... she just finished her spring semester at Lone Star College and made the President’s List and was getting ready to spend a week at the beach for her 21st birthday. She was active, vibrant, creative and full of energy.
On 5/21/16 she was experiencing what we thought was an acute psychotic episode (something that has never happened before) and we took her to the ER. Over the next 12 days and after 2 spinal taps, several X-rays, CAT scans, MRI’s, 2 electroencephalograms (EEG), and many other lab tests, no one could tell me what was wrong. All they could say was it had to be a mental health problem and they released her to go home with me. Things continued to get worse from the newly prescribed anti-psychotic medication. We went to a different hospital, a week of the same tests, also giving them over 600 pages and a DVD of her medical records from the first hospital. The labs came back positive with antibody markers for autoimmune encephalitis. Finally a clue to the acute psychotic episodes and paralysis of her left arm. Afterwards another spinal tab was taken to run specialized labs to help diagnose which autoimmune encephalitis was attacking the tissue in her brain. This is also when a doctor told me about an excellent resource, the book “Brain on Fire”, to help me understand what she was going through and what we might be able to expect going forward.
On 6/24/16 the fear of a tumor was presented. Danielle had another MRI scan of her ovaries as it could be causing the autoimmune encephalitis response by the body. I was acutely aware this was a possibility as it was a symptom of NMDA autoimmune encephalitis (which causes severe inflammation of the brain tissue). All I could think was… could this be linked to the aggressive form of Breast Cancer that took her mom in February 2013. Once the test came back negative and no tumor, I knew we could get through this. After several more weeks of tests and treatment, which included chemotherapy (to suppress the immune system) and ATP (a blood transfusion to remove attacking proteins from the bloodstream), she was able to leave the hospital on August 9, 2016. It was a struggle during this entire process. This disorder leaves the patient in a mental state with delusional thinking causing them to be terrified of the people and events that surround them.
Specialized testing was done and her paper work was sent to the University of PA. A leading research team reviewed her labs. All tests have come back negative for “current” known types of autoimmune encephalitis. This puts her into a larger group of patients this “unknown cause” with “unknown reoccurrence”. It is shocking that most health care professionals barely know of (or nothing at all) about autoimmune encephalitis. I am so grateful we pushed for second opinion and they pushed for a cause. I fear how many people are misdiagnosed with mental health problems when they have a sudden psychotic episode and do not receive a proper diagnosis.
Danielle and our family are healing.
Thank you for working toward a future where families receive fast and effective healthcare!
Kelly Carnicle
Here are some useful links to help you understand this complex and serious disease that have help me through this process.
Susanna Cahalan "Brain on Fire"
http://www.susannahcahalan.com/
University of Pennsylvania
http://www.uphs.upenn.edu/news/News_Releases/2013/07/dalmau/
Encephalitis Global
http://encephalitisglobal.org/
Autoimmune Encephalitis Alliance
https://aealliance.org/
Organizer and beneficiary
Danielle Carnicle
Beneficiary