A personal post : I want to share what I have been up to these past few months, and why I am taking further leave. But also my aim in sharing this story is to help others who are struggling with a diagnoses and treatment of a disease that many know so little about. In my quest to find information, I found so little in google searches – and I know how helpful it can be to hear others stories. I also what to take this opportunity to thank the many people who reached out to us in our time of need – thank you. So much.
And so it starts.
My daughter, aged 13 has Anti-NMDA Receptor Encephalitis. This is her journey and the story of how we put out her fire.
It all started with the rather simple and slightly odd question, “Can you guys hear that music?”. To which of course, we laughed and told her she is probably spending too much time with her headphones in. Then about a week later we woke to what we thought was an intruder in the house. The sound of footsteps making their way quickly across the wooden floor. Up jumped my husband to discover it wasn’t an intruder, it was in fact our daughter having a seizure. Her body rhythmically banging on the wall next to her bed as she shook. Having never seen a seizure before we were in complete and utter shock. Nothing prepares you for the first time you see your child having a grand mal seizure.
This was to the the first of approximately 10 over the next 3 days.
She was transported from our small town hospital to a bigger one, and given a slew of tests. MRI came back normal and an EEG came back with slowing, however no seizure activity. So she was sent home with anti-epilepsy medication and told to only come back if she had more then 3 a day or if they were over 10 minutes long (previously 5 minutes, now extended to 10 minutes). Let me say, that I completely ignored this advice, and am in no way saying this is the advice I would recommend.
Within a few days, she had yet more seizure activity. I returned to the local hospital to be turned away and told that she has Epilepsy, there was nothing more they could do. By this stage, she was starting to loose weight and become extremely tired, a symptom of the medication they said. She was also complaining of tingling up her arm, involuntary arm movements and after her seizures she was sometimes be paralysed down one side of her body for up to an hour. They decided this was Todds Paralysis, a side effect of Epilepsy and not anything to worry about.
But worry we did. So much so that prior to going to the Emergency Department, yet again, I contacted the biggest Children’s Hospital in Australia and cried. Like a baby. We lived miles away, but something told me this was more then epilepsy. I literally begged for help, and thankfully the receptionist put me through to a Neurologist Registrar. She listened to all that has happened and told us to head down to our local hospital, get a referral to a neurologist and swap medication. And also that we would receive a letter in the mail with an appointment to see the Neurologist, which she said can take up to 6 months.
And so we waited. During this time her seizures stopped, we were so thankful. However, since her very first seizure she had been unable to return to school because she was just too tired. It had now been over a month so we decided to take her to a private Neurologist, and travelled up to Sydney for an overnight EEG. It was here that things became extremely dangerous. He diagnosed her with Pseudo seizures – and recommended she see a psychiatrist and reduced the anti-seizure medication. Again, we completely ignored this medical advice, and wanted a second opinion.
And that is when the story became clearer. Thankfully, the original neurologists appointment was set, and within that week she had a grand mal seizure that was over 10 minutes long. She was tired and confused, often staring into space and at times unable to answer simple questions – such as “What is my name”. The local hospital again turned us away after hearing her last seizure was over 10 minutes long, and told us to return only if she had one longer then 15 minutes. In desperation we sent a video to her new neurologist and he called her in to hospital immediately. So back in the car we went, a long drive to Sydney.
From here, it only got scarier.
EEG readings showed seizures that were clustering and back-to-back, sometimes up to 30 minutes long. Overnight she became catatonic – unresponsive, staring into space. We got her to the right place, just in time as a new symptom appeared – delirium. She began to repeat words over and over again, speak of colours, gods and things as a mum I can never speak of. And worst yet, the medications couldn’t stop her and she ended up in ICU.
It was here that we were told she might not make it. Something a parent never wants to hear uttered about their child. They told us they suspected NMDA Encephalitis and that her disease had progressed to a stage that was extremely serious. They immediately started first line treatment, IVIG and steroids.
It felt like her life was slipping away. Within a week she had lost all ability to talk. Her memory was in and out – often forgetting the names of her closest family members and unsure of where she lived. She also lost her ability to walk. As soon as they had the official diagnoses they started her in a treatment called Rituximab. I mention the names of the medication for anyone out there who is looking for treatment and what has worked. Because at this stage, this is the answers I was searching for. I can not express enough the importance of getting to a good neurologist and getting on the correct treatment as quickly as possible.
They saved her life.
Over the next two months her symptoms began to slowly improve, and change. Every day different. Lots of delirium, some seizure activity and hallucinations but most of all every day, a little better. And after a two month stay in hospital she returned home.
It is now a month later, and she is doing so wonderfully. It will likely be a few months till she is able to return back to school as she is struggling with cognitive fatigue along with a few other symptoms. But fact remains she is with us, her brain was on fire and they put it out.
I want to thank the Westmead Childrens Hospital. Our family and friends for all your amazing, amazing support. All the wonderful support we have received from our online friends and family. Hand to heart. Thank you.
I also want to send out this message : As a parent, never back down if you believe there is more to your child’s condition. If your gut tells you, “My child needs help”, yell it to the roof tops.
And as a side note : My daughter received an immunisation months prior -HPV Vaccine. It is not scientifically proven, however, there is research being conducted on a possible link, especially as my husband and I both have the HLA gene, and my husband has an autoimmune disease, Ankylosing Spondylitis. I want to clearly state that there is no proof that this was the cause, however no other cause has been found. I vaccinate my children, but due to this we will not be vaccinating our youngest daughter with the HPV just in case. I believe the HPV vaccine needs more research. I’m not posting this to start a immunisation debate, or to make this about immunisations. I’m sharing this story to hopefully shed light to ANTI-NMDA RECEPTOR ENCEPHALITIS as I know there are many people out there suffering from symptoms similar to my daughters who have not yet been diagnosed, and maybe, just maybe, it might help save a life.