Matthew’s Story, Johannesburg, South Africa – Our 19-year old son’s story

January 2012 – September 2015

December 2011 was like any other holiday.  Great time spent at the coast with family and friends.  Our son was fit, healthy and very happy.  He had the world at his feet.  Life was great!

Towards the middle of January 2012 it all changed when he started feeling strange.  He kept complaining that his head didn’t feel “right”, he couldn’t think properly and was struggling to verbalise.  From being an outgoing, happy go lucky, confident, cheerful and independent 19-year old he became extremely anxious and withdrawn.  On Monday, 31st January the GP diagnosed him with depression and anxiety and prescribed the relevant medication, which would take 2 weeks to take effect. The blood tests also revealed that his thyroid levels weren’t great but as they weren’t extremely raised there was no need for treatment and this was also thought to possibly be the cause of the depression. Then began the long 14 days wait for the meds to start working.

Over the next couple of days his condition fluctuated but mostly got worse.  He didn’t leave my side and was unable to make the most simple of decisions or choices. He started seeing a psychologist to try and establish if there was a possible underlying reason/cause for all of this.  It was becoming extremely difficult by now for him to communicate as he battled to speak and wasn’t even able to type or write messages to us.  The words just didn’t come!  I was not convinced that he was depressed and needed to try more to help my son.

I requested a CT scan just to confirm that there was no other underlying reason for this complete change in personality.  The scan came back clear and after a short consultation with the neurologist he and I were told to go home and wait for the medication to start working and that he should get out and exercise as this was going to be very beneficial.  He lost interest in going to the gym and field hockey, his life’s passion, was becoming more and more difficult to play.  The warning bells were screaming at me and still we couldn’t get any definitive answers. On day 11 he had an anxiety attack in the psychologist’s office and became extremely distressed.  I was advised to take him to a psychiatrist as clearly something more significant was now taking place.  As it was Friday I couldn’t get hold of anyone and prepared myself for a long weekend of waiting to make the call on Monday morning.

Sunday we noticed a subtle change his demeanour.  He started to become slightly aggressive and more agitated.  By Sunday evening his mood had changed drastically and we knew that there was something terribly wrong.  He was behaving as if he had bipolar disorder with extreme highs and lows and his is eyes were vacant.

My husband and I raced to the hospital, with him chatting and singing in the car, what a surreal experience. By the time we reached the hospital he was coming down and was quite calm.  The attending doctor mentioned bi-polar. Our son was admitted to the psychiatric section and our long journey with anti-NMDA receptor encephalitis had begun.

The next morning we met with the attending psychiatrist, she was also thinking bi-polar but wasn’t convinced of it.  My husband and I made the decision to stay with him 24/7 as his behaviour was so erratic and we didn’t know how the staff would react.  Thus started our 12-hour shift rotation for 10 days.  The neurologist had been called in to consult as the psychiatrists weren’t convinced that this was a psychiatric case.  Questions, questions and more questions.  No medicine was working and through all of this he paced and paced and paced.  He walked for 10 days and slept for 10 minutes at a time.  It was exhausting, emotionally draining and frightening.  He “talked” to people only he could see, every now and then he spoke clearly to us, he hallucinated a lot and a lot of the time looked desperate.  He almost pleaded with his eyes at times for us to get him out of this.  No one could tell us what was wrong. The only definite was that his temperature became slightly raised within a couple of days.  The drugs he’d been given would’ve knocked my husband and me out together for a month and still he walked and didn’t sleep.  He was fighting a monumental internal battle and there was nothing any of us could do. If only we could get a name for this.  He had numerous EEG’s, an MRI, 2 lumbar punctures and a barrage of blood tests for everything possible.  He was having seizures and his restlessness ended up with him being physically restrained to his bed.  His white blood cell count was up slightly and an anti-biotic drip was inserted but removed after 2 days.  All the blood tests came back negative.  The neurologist had by now concluded it had to be an autoimmune condition. His CSF (cerebrospinal fluid) was sent to Germany for testing. In the meantime he was given a high strength course of steroids.

His plight touched patients’ and nurses’ hearts alike and everyone was desperate to help him and us to find a solution.  Some days were good, others not so good.  We all functioned on autopilot.  He was “awake” at times, other times he was in his own world. On day 10, Wednesday, February 22nd, the day of his second LP he had a seizure in front of the neurologist.  The decision was then made to move him to the ICU for 24-hour monitoring.  Off we went to the ICU for the next part of our journey.  This was a completely new environment and I got quite a shock on entering for the first time.  My head knew this was the best but my heart was breaking at the sight and sound of all the machines and really ill people.

Our son spent 7 long weeks in the ICU.  Within 2 days he had to be sedated as the seizures were really bad.  He was on a ventilator, and mostly sedated, had a tracheostomy and PEG (feeding tube).  EEG’s were still being run, blood was still being taken.  Eventually the results were returned from Germany and our son had tested positive for anti-NMDA.  Finally we had an answer to some of our questions.  A course of plasma exchange was started and finally he was given 3 courses of iVig to restore his immune system.  During the 7 weeks, his blood pressure fluctuated, he contracted pneumonia, had to have surgery on an aneurism and to reinsert his PEG which he had removed. He also managed to contract a blood infection. He had daily physical therapy and lost a total of 15kgs.  The day he managed to walk a full circle around the unit we all cheered.

Finally his attending specialist declared him medically fit and he was transferred back to the general ward.  What a shock for us.  No more 24-hour individual care and support. This was a rather scary time as we were told that he was ready to be released from hospital and we knew he couldn’t come home.  He still had a long way to go.  He wasn’t even able to speak and was very thin and frail. His short-term memory was barely there.

We managed to find him a place in a rehabilitation centre where he stayed for a further 9 weeks and underwent intensive therapy (physical, psychological and occupational).  He would have his therapy sessions from the morning until lunchtime, after which he slept for a few hours.  We visited in the afternoons and played games, did puzzles, went for walks and stayed until he retired for the night.  When he went into the rehab he wasn’t able to count to 5 or name the days of the week.  Each day we had to tell him where he was and that he’d been sick as his short term memory still wasn’t great.  He remembered all of us but had a problem remembering events. We stuck photographs and notes up on the walls of his room to remind him that he was on the road to recovery and that we loved him. He worked hard at his therapy and made good progress. Gradually he started speaking again and remembering words.   The day he said to me “you’ve told me that story mom” was such a happy day and I knew he was on his way back to us.  He picked up the 15kgs he’d lost and went on to gain another 15kgs due to the medication he was taking.  We had a tough time getting him to understand that he didn’t normally eat so much.  The therapists were very happy with his progress and finally he was discharged.  After 18 long weeks our boy was coming home!

It was all very well having him home but what to do next?  He was still not fully recovered and we knew we had quite a way to go. The neuro-psychologist ran some psych tests with him, in order to establish his level of competency and set up the next therapy regimen.   He then started outpatient therapy and went twice a week for a further 4 months. We also sent him for a PET scan as one final check for a teratoma (as most often this is the underlying trigger).  It came back clear.  In November of 2012 he was given the all clear to start driving again and was declared medically fit.

All of 2013 He spent working on his recovery.  Physically he worked hard to lose the weight gained and to get his fitness levels back to where they should be.  He started training on the hockey field again and worked tirelessly on perfecting his skills.

In December 2013 our son was chosen to represent his country at the under 21 Junior World Cup in Delhi, India.

He has returned to his studies at university and continues to play hockey at a high level.  He is now 23 and is living the normal life that he should be.

We were blessed with amazing doctors and caregivers.  This condition is awful and the road is long and hard.  Our prayers are with the families and patients who are currently suffering and those who have been through it.  The only advice that we can offer is to make full use of the support groups and The Foundation.  Unless you’ve experienced it you cannot understand.