Marie Thon’s Story, Sydney, Australia

MY STORY:

Mid November 2013, I completed my Higher School Certificate (HSC). On the 10/12/13, I was suffering bad headaches, vomiting, photophobia and neck stiffness. I was admitted into Emergency room at Liverpool Hospital in Sydney. White cell count on CSF showed a mononuclear cell infiltrate. EEG showed slowing of activity consistent with encephalitis/meningitis. Initial testing for NMDA receptor antibody was negative. MRI brain was normal. Initially thought to be viral meningitis, so treated with acyclovir. By this time, family and friends were in great shock and sadness but were there for me as a great source of support. Their prayers and visits kept me positive and strong through my stay in hospital. Sadly, I turned 18 and celebrated my 18th birthday on the 12/12/13 in the Children’s ward where I blew out a chocolate cake that the nurses were kind enough to purchase for me on that day, this was blown out during lunch with a few nurses and my family. I was later discharged a few days after on 16/12/13 followed by readmission 17/12/13 with seizures. Repeat testing for NMDA receptor antibody on CSF revealed positive result, and hence, diagnosis. I was discharged from ICU on 13/02/14 and was admitted to the Brain Injury Unit.

Initial management was conducted for primary malignancy with CT scan and PET scan but both negative. Was initially on sodium valproate but seizures were ongoing so keppra was added. Rituximab commenced on 13/1/14. On the 15/1/14 I had an operation/procedure which was undertaken called a Tracheostomy. Lamotrigine added 23/1/14. Mycophenolate commenced 7/2/14. I was starting to experience behavioural issues on the ward and was treated with olanzapine and 20mg temazepam because I tended to get agitated at night. Bactrim was commenced. I suffered a URTI viral infection on 25/2/14. On 3/3/14, modified barium – which meant dysphagia soft diet and middy thin fluids were taken as food intakes. By this time, 1:1 special nursing required. Second MRI scan was still normal. I had no previous or past medical history of being this sick prior to this brain injury. Brief social and family history:

Single storey house with parents and brother in year 10 and younger sister in year 9.
Was to start business/law studies at UTS 2014.
Completed Year 12 at Mary Mackillop College.
Was driving
Was working as a casual part time employee at TOYS ‘R’ US at Westfields Liverpool.
Both parents work – Mum part time and dad full time.

I was transferred to the BIRU Liverpool Hospital on 25/3/14 for further management and rehabilitation. On examination, cranial nerve examination was normal, and power was 4/5 bilateral upper and lower limbs. Neurological examination was otherwise unremarkable. I was not orientated to date, day, but was orientated to month, year and place (Liverpool Hospital). I was not topographically oriented. I could not perform simple calculations. I could remember 1 out of 3 objects. I was inconsistent with 1 and 2 stage commands, I had poor auditory comprehension, limited verbal output and was moderately dysarthric. Skin integrity was good. I could mobilise independently indoors without aids. I required prompts in showering but could toilet independently. I was on mildly thickened fluids and soft diet. I was emotionally liable and would often behave in a childlike manner. Episodes of agitation and aggression were especially related to denied requests for food.

Therapy undertaken during this difficult time was physiotherapy and occupational therapy. I see my speech pathologist Karen, psychologist Dianne on Mondays as an outpatient, after being discharged on the 4/6/14. It’s been 2 months since I’ve been an outpatient and after visits with my neurologist, Dr. Alan McDougall, he says I’m 90% on my road to 100% recovery, which is a good sign. My Immunologist, Dr Catherine Toong, has reduced my medication such as Bactrim, Keppra as well as steroids. Recently, “Understanding your Brain” group has been run by Amanda and only I, Chris and Michael sit this meeting every Monday morning at 10:30-12pm now and every second Friday table tennis and art group is held which I do attend every time it’s held. So far, I’ve lost half of the weight I’ve gained during my time in hospital. I blame the medication and my Dad for my weight gain. However, it’s all coming off, with my daily gym sessions. Although I’m not the happiest girl on earth, I am a lucky girl to have who I have in my life and to be where I am today, so I thank God and the people who’s been there for me all this time. I love everyone who’s been with me throughout my journey dearly and my message for those out there going through something like me or might face this problem in the future, is to never give up on hope. Stay positive, believe in yourself, pray to God, appreciate those that support you through thick and thin and fight for yourself and what you believe in. Nobody’s perfect, everyone has a story, and this was mine.

Marie Thon