Sep 15, 2020 Latest post:
Jan 28, 2021
Welcome to Payton's CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
April 2020- Payton came home from Hamline University to do virtual learning due to the Covid outbreak. She was excited to start her nanny position for the third summer and eventually move back to Hamline to live with five of her closest friends in a house that they rented for the 2020-2021 year. Unfortunately, that plan did not happen due to unexpected medical issues. She had to back away from her nanny position which made her and us very sad leaving that family without a nanny for the summer. She was also eventually told that she couldn't attend college this fall, participate in track or live in the house she rented with her friends.
May 2020- Payton experienced, migraines, vertigo and a couple of infections that were not common to her normal health patterns. One morning she work up with minimal short term memory and was experiencing panic attacks of some sort. On June 16 we took Payton to Mayo Clinic. They performed an MRI, which showed two areas that were swollen so they ordered a spinal tap to see what was causing the swelling on the brain. Her spinal tap was normal but she had a lot of fluid on her spine so they removed 30mg of fluid from her spine. Payton was diagnosed with Limbic Encephalitis, which means her autoimmune system was attacking the portion of her brain that stores short term memory.
They took 25 vials of blood to determine what was causing the swelling on the brain. This is where they determined Payton's antibody called the Gad 65 was the cause of the swelling. Typically the Gad 65 flares up because of a noncancerous tumor or Simplex Herpes. They performed a CT scan on her abdomen and chest area looking for a noncancerous tumor but all scans were normal. She was also tested for Simplex Herpes which all tests came back negative.
Dr. McKeon and his neuro team started a very aggressive treatment approach right away. Prescribing seven plasma transfusions within a two week time period. They also prescribed steroid infusions - once daily for five days then weekly for 6 weeks moving them to every other week in August completing these infusions August 23. With these treatments her memory improved some and her panic attack episodes were few and far between. We returned home July 2 and continued steroid treatments in Fargo at Essentia Infusion Center.
Around the first week of September we noticed Payton's memory was slipping and her panic attack episodes were beginning to worsen. We spoke to her doctors at Mayo and they put her back on weekly steroid infusions until we returned to Mayo for her follow up appointments on Wednesday, September 9 which would include blood work, MRI, EEG, overnight oximetry test, and Neuro Psych testing.
EEG - We met with Dr Burkholder on 9/11 he noticed there were irregularities that he feels indicates seizures but typically with seizures there are sharp points in the readings and these were not present on the report but he is still convinced these panic attack episodes are seizures. He would like to diagnose Payton with Epilepsy but I insisted that she completes an Epilepsy Monitoring study prior to being diagnosed. If diagnosed she will lose her drivers license for 6 months at a minimum. He agreed so she is scheduled to do this study September 22 and 23 at Mayo Epilepsy Center.
Neuro Psych test- She scored very well in all areas but struggled in the delayed memory area, which is normal for what she's going through. He said once a couple of hints were given she could figure it out so he wasn't concerned with her score at this time. He thought with proper treatment and therapy she will back to herself within time. The Psychiatrist said Payton is a very intelligent young lady and is very hopeful she will recover. She meets with Dr. Schultz on Monday to determine the necessary brain therapy schedule.
We met with Dr. McKeon, Payton's neuro specialist, he is pleased with the improvements so far but there are two areas that they are still concerned with so he wants to continue with another form of treatment. He said her body is reacting well to steroids but he doesn't want her brain to become dependent on them. So he is having her do two infusions of Rituximab, along with steroid infusions for the next four weeks. He also agrees with monitoring for Epilepsy. They would like to get them recorded so they can diagnose and treat her properly.