“…in the midst of my panic, I asked him to smile at me.”
I remember it well—hearing a glass hit the floor of the bathroom in the early hours of the morning. I bolted out of bed to find Riley, my then seven year old son, frantic. I knew something was wrong, but he seemed unable to tell me, it was like he couldn’t find his voice. Eventually he was able to speak but there was an obvious slur as he spoke, he was drooling heavily and he was completely off balance. I don’t know what possessed me to do what I did next, but in the midst of my panic, I asked him to smile at me. When he did, only half of his face moved. It was then that it registered that he was paralyzed down one side of his body. In the terror of the situation that was unfolding, a 911 call was made and within moments I was opening the door for the EMT’s. He was assessed and taken by ambulance to the hospital. I can still remember the agony I felt as I watched the ambulance pull away with my son inside. And so it began a journey that we could never have imagined and still to this day wonder how we made it through some of the early days. This first attack rectified itself without treatment or medication of any kind. Riley’s body returned to fully functioning and the doctor indicated that it was likely a type of seizure that happens at night and that he would grow out of it. Further testing was ordered but we were released within about 36 hours of arriving at the hospital.
One month later – a second attack
One month later, our life was completely turned upside down again. Riley had been tired and had begun to complain of pain in his legs and arms which we assumed was just growing pains. One night the pain seemed to worsen and he was up every hour complaining of pain, but each time it was a different area that he was feeling pain in. We tried to get him to sit up to get him to the washroom at one point, and he screamed in pain. He couldn’t sit up. He seemed to be okay standing, but then when he began to walk, we witnessed the same off balance stagger that we had seen a month before. We took him to the hospital again where he became a complete mystery to the staff there. We spent two days with no answers and all the while, Riley’s pain was increasing. It was decided that he would be transferred to BC Children’s Hospital. As we were waiting for the ambulance, it was one of the hardest times I have had in this journey. This is the part of the journey that haunts me and replays in my mind still to this day. He screamed in agony for four hours waiting for that transfer ambulance and nobody did anything to help him or to relieve his pain. I cannot even describe in words what it felt like to be there that night and to not be able to take it away and make it stop for him. When the transfer ambulance finally arrived to take him to Children’s Hospital, what a sight we were. I was an absolute red faced, eyes swollen shut, mess. The EMT’s quickly assessed Riley and said almost immediately “This little dude is way under medicated for the type of pain that he is in.” God bless these two amazing men who within minutes had put morphine into Riley’s IV and he stopped screaming for the first time in over four hours. Moments later, I watched again as my son and husband rode away in an ambulance and then I drove home with my then ten year old daughter Myah.
Three days in the ICU
Unfortunately, my precious daughter had also been present for this horrific experience. Riley was given an emergency MRI in the middle of the night and it was about 5 am when the phone rang. They had found inflammation and lesions on Riley’s spinal cord and brain. When I arrived that morning at Children’s hospital, Riley was still experiencing huge amounts of pain and he was in the ICU. He was moved to a private room in the ICU with a cot. Normally parents are not allowed to stay in the ICU, but I think it was pretty clear I wasn’t going anywhere. We met with the Neurologist and his team shortly after my arrival that morning and I remember well the look of concern on his face as he explained the seriousness of the situation to us. Though we knew it was incredibly serious, there was something about this Neurologist that had been woken up in the night to assess Riley that brought peace to me. His eyes were so kind and I just knew that he would do everything he could do to make sure our son was well taken care of.
That doctor was a constant presence in our journey. He would appear on his days off and even on his vacation to check on Riley as we continued to battle this disease. He has since moved on to another hospital in Ontario, but I will never ever forget the way he handled our situation with such care. After three days in the ICU, Riley, although still in a lot of pain and unable to move much as he was paralyzed from the chest down, was stable enough to be moved from the ICU to the Neurosciences ward. During his three days in ICU, many causes were ruled out and he was started on high dose IV steroids which would target the inflammation in his body.
Initial diagnosis and recovering from the attack
Gradually over the course of the five days that the IV steroids were given, we began to see improvements. His arms started to move, then his legs and by day nine he sat for the first time and we put him in a wheelchair and left the room for the very first time. The IV steroids were followed by another four days of an IV treatment IVIG and he just continued to improve with each passing day. Assisted sitting became unassisted sitting, eventually there was standing and standing turned into walking, staggered walking but still walking. He was tested for so much and so we were without an official diagnosis for quite some time. Finally we were told that it was something called Acute Disseminated Encephalomyelitis (ADEM) and that it was a onetime brutal attack on the central nervous system and that he should fully or almost fully recover from it.
At day 19, two days before my birthday, he was released from the hospital and allowed to come home. In the days leading up to his discharge, we were unsure if he would come home with us or be transferred to a rehab facility. It was decided that his rehab would take place at home. For several months, we had Occupational Therapy, Physio Therapy and Rehab Therapy at our home to help him recover from the things that the brutal attack had affected. We had ordered a wheelchair for him and some help aids for getting in and out of the bathtub, but he improved so quickly when we got home, that we never picked up any of it. He worked so hard on his fine motor skills and his balance and before long, he had made huge leaps and bounds in the area of recovery. He very quickly wanted to return to life as it was. He had missed the start of his Grade 2 year and desperately wanted to go to school. He was still weak and the attack had left him with some bladder issues, so I went with him to school for several weeks so that he could be a part of his class. Being back at school seemed to push him forward in his recovery. We were so pleased with this and then…another attack.
A new diagnosis
"I wondered if he would recover or if I was going to lose my son."
This time it was different. Riley had thought that he had poked himself in the eye with his pencil at school and so he was having horrible eye pain. Over the next couple of days, he began to lose his vision and by the time we got him to the hospital, he could not see out of his eye at all. An eye test indicated inflammation of the optic nerve. We were told that sometimes an ADEM attack can occur over a month or so and that this was likely the same attack that was attacking a different part of the central nervous system. Just three days of the IV steroids this time and his vision was completely restored. After a five day stay in the hospital we were home again. One month later…another big attack.
We thought he had the flu. It made sense that is was the flu, because I had the flu too. He was not well for a couple of days and one morning woke up with absolutely no balance at all and increasingly slurred speech. It was not the flu, but yet another attack and a very scary one. This time the attack was on his brainstem. He was so sleepy and was in and out of consciousness. It was so scary and for the second time since this journey began, I wondered if he would recover or if I was going to lose my son. The five days of IV steroids followed by four days of IVIG, once again brought him from a very scary place to walking out of the hospital on his own two feet. It was during this ten day stay at the BC Children’s Hospital that the diagnosis was changed from Acute Disseminated Encephalomyelitis (ADEM) to Neuromyelitis Optica (NMO) also known as Devic’s Disease. A very rare disease for which there is no cure.
Treatment for Neuromyelitis Optica (NMO)
Since the diagnosis of Neuromyelitis Optica, Riley has had two more optic nerve attacks. One attack was treated with five days of IV steroids at the hospital and the other attack we were able to treat at home with an increased dose of oral prednisone. He was also started on a daily immunosuppressant called, Imuran. This is the baseline medication used to help ward off or lessen the severity of attacks. The medication had worked very well, however, we discovered at this time that every time he was weaned completely off of the oral prednisone, he would have another attack.
He started to take the oral prednisone in a very small dose every other day and that has held him relatively stable. He had a brief time of blurring vision just prior to Christmas, but it cleared on its own and did not require further treatment. It was during this brief overnight stay that we had the privilege to meet four of our Vancouver Canucks during their yearly visit to Children’s Hospital. It was an exciting time in the midst of a difficult time. I was very impressed with how they chatted with the kids and posed for pictures for doting Mom’s like myself. They were awesome and we were thrilled to have met them, but even more thrilled to receive our discharge papers shortly after.
Living with the disease and advocacy
“ …he is a living, breathing, walking, running MIRACLE”
Riley is eight, almost nine years old now and for the most part, functions much like any other boy his age. He has some ongoing issues with his bladder which was damaged during the second attack. He gets tired easily sometimes, he rages sometimes, but all that aside, he is a living, breathing, walking, running MIRACLE. To fully understand that statement, you would have to have been in this entire journey. Twice I stood by his bed and wondered if he would still be there in the morning. It has been such a hard journey for all of us. There are still days that are excruciatingly difficult. There are lots of appointments that vary from easy, to some of which are very difficult. We try to live each day as it comes and on the hard days we have to live moment to moment. I know as I write this that this is not the end of the story. We turn the page on what has already happened in this story and we take what it has taught us and we do something about it, something that may change the direction of this disease.
Advocacy has become a huge part of this journey. To educate others, I have had to educate myself. Because of its rarity, I have had to explain what NMO is numerous times while sitting in an emergency room knowing that Riley is having an attack. In this journey, I have, after much battling with myself, found my place. I am an Advocate, an Awareness Runner and a Mom on a Mission. I won’t stop until we see the cure for this disease. This is my child, what would you do if it was your child? Everything you could, I imagine!!!! We fight on and hope and pray for the cure.