October 30, 2020 | By Dr. Robert Larry Reese-Johnson  

Read Part 1 here.

 Jan. 1, 2020 – It was a new year, and based on the progress that he’d made I emailed Dr. Tomatore regarding this progress and questioning, through my research, exactly what tests results were reviewed, what tests were done and how exactly the diagnosis of CJD was made? Dr. Tomatore never responded to this email, nor did he an acknowledge receiving it.

For the next two weeks, the medical team was re-evaluating Reggie’s care and treatment plan based on the progress he was making and with different symptoms. During this time new MRIs, blood tests, and EEG were ordered to determine what exactly was going on. 

I then got a call from the resident in charge of Reginald’s care for that time. Upon review of: the EEG, which showed NO EVIDENCE of the preliminary things they saw earlier; and the MRI, which showed evidence of clearing up the previous spots; and the blood tests, that were still to be determined, they were moving off the CJD diagnosis and agreeing with me that this this was AE. They were also moving forward finally with the next line of treatment, rituximab, and he was set to receive that treatment.

Rituximab had been denied by insurance from the first of December based on the CJD diagnosis, but now it was approved based on the correct diagnosis. There was also a family meeting around this time, at which they recommended sub-acute rehab for Reggie, asking me for facilities that I may suggest in the area for him to go, and the team moved forward with sending referrals. 

On Jan. 20, the blood test results came back and the CASPR2 antibody was identified as the cause of his AE. Reggie then went through a full-body CT scan as the creation of the antibody is known to fight off cancer. The results of the CT scan showed no traces of tumors or cancer anywhere, and the team would still try to move him to a sub-acute rehab. Two days later, the nurse case manager called to tell me that he had been accepted to a facility in Lanham, MD. There was concern on my part because I did some research and I was uncomfortable with reports on quality of care by that facility. Then there was a snafu with both time of discharge and dispense of medicine, which he never received. 

Upon arriving at the subpar sub-acute center, as Reggie was settling in I was talking to the nurse—there was only one of her for 13-plus patients—he fell twice against a cabinet with metal handles. Prior to his being admitted here, I had let them know he had to be restrained in both his bed and chair with a waist belt, as he attempts to get up and falls. They denied I said that, letting me know they would have never accepted him under those conditions.

Ultimately, I read the reports provided and they only stated that Reggie was agitated at times and would get up, which was a blatant untruth. As a result of two falls over 24 hours, they called 911 and he was transferred back to the PG ER.

Upon arrival at PG, Reggie was evaluated by the attending physician, who was familiar with him from his original admission. I informed this doctor of the AE diagnosis and what caused him to be brought back to the hospital. He let me know he would evaluate him and try to work with me regarding my requests moving forward. Reggie then checked out fine from the falls and that they had no medical reason to admit him. 

Knowing the situation however, the physician would try to complete a doctor-to-doctor transfer for him from PG to the attending doctor at Georgetown. While the doctor was doing this, two social workers told me Reggie had three options:

1. He could be discharged to me and go home.
2. I could transport him to Georgetown ER.
3. He could be taken back to the sub-acute facility, as I hadn’t given them a chance.

I was opposed to all options and I was not signing for his discharge, so I got a CareFirst case manager to talk with the social workers. They came back to me with the case manager on the line and it was determined that Reggie would return to the sub-acute facility, be evaluated by their medical staff and nurses, so they could determine he’d be readmitted to PG’s rehab. I agreed and he was medically transported back to the facility that evening.

Upon Reggie’s arrival for the evaluation, I was taken into the conference room to meet with their team. They told me they could not do an evaluation, as promised, and could not recommend acute rehabs for a patient. Also, they informed me that they could not keep Reggie, as they could not ensure his safety, as by law they cannot do any form of restraint. They advised for me to take him back to Georgetown ER on my own and that I not him leave there.

I replied that I was unable to take a medically fragile, immunocompromised patient, on a cold night in my car. They then agreed to have Reggie transported back to Georgetown in a van, but without medical personnel, to the ER at Georgetown. I got on the phone again and informed the case worker all of this, and the violation of the agreement worked out. The van then arrived and did not have a wheelchair in which he could be transported. The staff said that if he used their wheelchair, I needed to bring it back the next day. I agreed and he was prepared for transport. Just as he was wheeled out, they told me that the van had left and they could not contact the driver to come back. 

I informed the staff that as a last resort I would take Reggie to Medstar Georgetown in my car as HE COULD NOT STAY HERE ONE MORE MOMENT because this facility WOULD NOT BE A PLACE I WOULD WANT ANY LOVED ONE! Also, I informed them that if Reggie, because of his compromised immune system, got as much as a sniffle and this caused his recovery to be extended, I would be suing the facility. He was placed in my car and I began the took him to  Georgetown. All this time, Reggie wasn’t provided with the crucial medication that was prescribed for his condition.

As I was transporting him to Georgetown ER, I called ahead to inform them of the situation. I also called the supervisor of case managers and the case worker so that everyone was fully aware. During three conversations with the supervisor, I was told the sub-acute rehab hadn’t known about Reggie’s needing restraints on his waist and an alarm on the bed, prior to or when making the referral. 

He was admitted to the ER, where he stayed in a room for two days, despite needing an individual room because of his agitation and need of a sitter. I was also informed at this time that referrals would be made to Encompass Health in Virginia or Capital Region Physical Therapy at PG for acute rehabs. The director for Encompass called and let me know they would turn him down, but would re-evaluate if Reggie required only an alarm on the bed as an alert. 

Jan. 24-Feb. 5 – Reggie received a room assignment in the post-surgical unit. I was impressed with the care as he was receiving PT and OT every day, and he was walking and progressing with less agitation. They were actually working with Reggie to devise a plan for him not to be restrained by the waist belt, and he was right outside the nurses’ station and they available to assist him immediately.

The social worker and the rehab physician for the unit, though, had no clue that Reggie was a returning patient to the hospital until I told them. The rehab doctor actually offended me by saying, “I would suggest or recommend a sub-acute rehab because that would get the most bang for your buck from insurance.” This was based on getting things out of insurance and not on the patient’s quality of life. The last time rehab was suggested and tried, Reggie went to acute rehab then to sub-acute rehab, both of which were cleared by insurance, and this would have been a total of 10-12 weeks or less, if they would have done it correctly?

Feb. 5 – Reggie moved back to the neurology unit and the care varied as they attempted to get him to be less agitated so he’d be accepted by acute care rehabs. There was no family meeting regarding this plan or any plans moving forward once Reggie was readmitted to Georgetown. When he was there previously, he received PT, OT and speech daily, and the nursing staff was walking him and getting him up to the bathroom daily, as he showed the interest. This no longer happened in the neurology unit. Most everything that Reggie did and attempted to do was prompted by me when I visited, or when I showed the nurses who agreed to do it and tried when I was not able to be there.

Feb. 15-22 – While visiting him in the evenings over two weekends I assisted him in eating of his meals. I then noticed he was not chewing as well as he had been previously. I inquired of the nurse and tech if this is what they had experienced during the previous meals, and they confirmed it.

I later noted that Reggie’s bottom row of dentures were not in his mouth because someone had removed them and placed them in a green cup. I alerted the nurse of this on Feb. 16, as my concern was that this could have caused choking or other problems with his lungs. Her response was that she did not know he had a bottom row of dentures, but said she’d write it in his record chart. Imagine my surprise when I came in the next weekend and discovered the same thing was happening and his bottom dentures were removed again; when I was assured that all would be informed? So, I took the action of writing on the chart, in his room to ensure dentures are in before eating, and that he has both top and bottom.

Feb. 27 – I was contacted at 2 pm by the attending physician that Reggie had experienced a fall while trying to get out of his chair. Because the footrest was in the up position, he got stuck and fell. Though the chair’s alarm sounded, the nursing and tech staff didn’t arrive in the room, and he fell on his knee and head. It was our experience that the nursing and tech staff were inconsistent in arriving in the room after Reggie or I hit the call button. All staff were aware that if Reggie tried to move or grabbed himself, he was letting them know he needed to use the bathroom and attempts should be made to get him up. The connections within his brain are being encouraged to promote independence. Right now, though, he needed assistance because I didn’t want the habit to form of just urinating or having a bowel movement on himself while trying to go as he normally would.

Mar. 2 – A meeting with the medical director and others of Georgetown was held regarding “next steps” and where they were planning to send him. The doctors gave me a great deal of information and I respectfully allowed them to speak. But they contradicted previous statements from other doctors. I stopped them from talking and said, “Reggie will not be going anywhere except Medstar National Rehabilitation Neurorehabilitation Acute Rehab or Encompass Health and Rehabilitation in Virginia!” If they proposed anything else, they would hear from a team of lawyers that I had contacted with all the prior information. Within the next hour they had a new PT physician evaluate Reggie and he was then set to move to Medstar NRH on Mar. 5.

Mar. 5-Apr. 1 – Reggie was admitted to Medstar NRH and made great progress there receiving an hour everyday of speech, OT and PT. I was there daily until I wasn’t allowed to because of COVID-19. Reggie finished his 30 days in acute rehab and was transitioned to sub-acute rehab at Largo Nursing and Rehabilitation Center. 

Apr. 1-28 – Reggie was admitted and continued sub-acute rehabilitation at Largo Rehabilitation and Nursing Center and even though this facility was just a 10-minute drive from our house I could not visit him, because of the Covid-19. I was able to talk on the phone or Skype with him daily. This absolutely killed me, as I knew what we had gone through in the past and I wanted to be with him to ensure the maximum was being done. As we were battling AE, limited knowledge of healthcare workers and therapists have of both it and COVID-19 caused concern.

Apr. 28-Jun. 28 – Reggie was discharged from the sub-acute rehab for home-based rehab through the Medstar VNA. He received 10 sessions of PT and OT and 14 sessions of Speech throughout this time, and he improved every day. 

Jul. 27 – Reggie was taken to Georgetown because he had a two-minute seizure at home. It was determined this “breakthrough” episode was caused by Reggie’s not following his medication protocol, i.e. not taking anti-seizure medications as prescribed. Even before his bout with AE, Reggie was non-compliant with medications and argumentative about taking anything, even vitamins. While in the hospital, he completed his second round of rituximab infusion.

Aug. 13- Oct. – Reggie is now an outpatient who receives OT and speech therapy at least twice weekly. He is making great strides and progress and I know will continue to recover with these therapies. I am impressed by these therapists, as they are trained in the field and have a neurological background. The OT and the speech therapists work together to help Reggie with his aphasia and apraxia toward reaching his stated goals. At the time of this writing, I am hopeful and joyful of what is going to be a better than before recovery!

Conclusion – This is the entire saga to this point with Reginald Johnson. As you can see, we have been through much that is both heart-wrenching and frustrating. At times, we not only have had to fight this disease, we have to fight the medical community so that they would not stop searching, treating, and taking proper care of him.

Reggie appears to get better every day. I have faith that full recovery is possible and will happen. I wrote this so all who choose to read it can be helped and assisted in any way. More importantly, understand to fight for your loved ones—especially when they cannot fight for themselves! 

Your generous Donations allow IAES to continue our important work and save lives! 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.