Acute Disseminated Encephalomyelitis (ADEM) Support Group

A severe case of ADEM


My son aged 31 was admitted to the emergency room late April 2015. He was very confused and agitated prior to going to the emergency room. He was unable to remember passwords, could not find his way home, did not remember that he had a job, complained that the car was broken and on further inspection he found out that the car had no gas. He threw his cellphone away thinking it was broken but it was not charged. After being admitted to the emergency room a CT scan revealed spots on the front and sides of the brain. MRI results revealed multiple lesions on the brain. Blood tests also revealed an elevated white blood cell count. After testing for cancer, meningitis, West Nile virus, HIV and a battery of other tests all the results came back negative. He was given anti viral, anti bacterial and anti fungal medication with no improvement in fact by the third day after being admitted he did not know who he was, who we were, could not speak, eat, became incontinent and just starred into empty space.

It was then decided to do a biopsy on the brain to conduct further testing. Before the biopsy another MRI was done it revealed that the amount of lesions had doubled and a lesion on the left side of the brain and grown from 3cm to 5cm within a week. The neurosurgeon prematurely made a diagnosis based on the MRI results that he had Progressive Multifocal leukoencephalopathy (PML) commonly known as the JC virus. The neurosurgeon said he probably had one to five months to live. He was given a dose of steroids the night before surgery he was able to say a few words. His condition had slightly improved on the day of the biopsy. In hindsight we realized he had responded better to steroids than the antibiotic treatment.

We got a second opinion and we were advised to transfer him to a University hospital. The University hospital did not want to accept him without the pathology report. When the pathology report came back it was confirmed that he had the JC virus. The University Hospital based on the test results immediately agreed to the transfer. At the University a neurologist, one of the best in the United States I believe (according to my research) was assigned to his case. The treatment he received here was very aggressive and prompt. They however, did not think it could be the JC virus because he was physically very strong. His condition did not meet all the criteria of a JC virus diagnosis. Besides the confusion he started losing his ability to speak, he could not comprehend any instructions, was not able to understand how to stand or sit, he was not able to walk either. He had the physical ability but could not understand anything. After a battery of questions from doctors, the pathology report and additional testing his diagnosis was changed to him either having MS or ADEM. He had the flu prior to getting so confused they believed as with the body was fighting the flu virus and his body started attacking itself. . They started treating him with high doses of steroid treatment for a week. With hardly much improvement another MRI revealed that the lesions were still active. It was then decided to do five plasma exchanges every alternate day. They increased the plasma exchange to seven. After the plasma exchange another MRI revealed that the lesions were still active. It was then decided to start chemotherapy. The treatment plan was 3 rounds of chemotherapy. He would do chemo every 3 weeks. He was given a high dose of Cytoxan. The neurologist believed that because of my son’s age he would be strong enough to handle the chemotherapy.

Once chemotherapy was completed he was transferred to a Cognitive Rehabilitation center. He was able to walk a little more steadily was able to understand sit and stand commands if we showed him. After about a month at the Cognitive Rehabilitation center he started getting very angry and continually tried to run away. Some or one of the medications he was caused his hallucinations. He was admitted to the emergency room where another MRI was done which revealed that the lesions were still active and they then decided to do another round of chemo. The fourth chemo treatment was Rituximab

All the drugs he was on was taken away and new drugs were reintroduced to see what works best for him. Every patient reacts differently to psychiatric medication. The one is on seems to be working for him. He also takes 10 000 units of Vitamin D because test results revealed he was vitamin D deficient.

We now have confirmed diagnoses that he definitely has ADEM based on further testing done at a University in Boston. He currently is doing outpatient rehab. In September 2015 the neurologist told us we should expect a 70% recovery within the next three months and a 100% recovery within a year. (September 2016). The treatment plan at present is that he will receive chemotherapy everything six months for the next two years in order to prevent a relapse. He also has to take a flu shot to prevent him from getting flu. With diet and exercise we hope to strengthen his immune system.

We however, should encourage him to read as much as possible according to his neurologist because this will help the brain make new connections. He is physically fit he exercises five times a week he can read any word he sees but he hardly has any attention span. We find getting him to just focus a few minutes quite challenging so he is not reading as much as he should. He can do very basic arithmetic and does not always understand what he reads. The Cognitive rehabilitation Center has diagnosed him with Wernicke’s Aspasia, the largest lesion is on the left side of the brain. The lesions will first have to heal before the myelin sheath starts re growing. He has to be constantly monitored. His long-term memory is much better than his short-term memory. We see very slight improvements on a weekly basis and yes they are very slight.

We have good and bad days. He is predominantly on a Pescatarian diet. We listen to music every night; it helps memory and enhances his mood. We also pray every night, listen to meditation music and vocalize positive short and long term affirmations to assist with his healing. I have done extensive research on his condition and how the brain can heal. Dr. Greenberg has videos on u tube where he discusses ADEM. They have been very helpful. Dr. Norman Doidge has written books on “The brain’s way of Healing” and “The Brain that changes itself.” The latter book has many videos on u tube. One video even summarizes the book “The Brain that changes itself” There is apps like “Tactus Therapy” that help to improve cognitive skills.

I remain hopeful that he will become the intelligent man he once was. He worked as a Computer Engineer working on baking applications and was also experimenting with building innovative Microcontrollers and writing software in his spare time. We will be doing another MRI this week to see if the lesions are still active or to see if amount or size of lesions has decreased. I am hopeful most of the time but sometimes about 10% of the time I fear that he may not fully recover. We celebrate every slight change and every week is better than the last. I remain grateful to his Neurology team and all the caregivers and professionals at the Cognitive Rehab center.