This is our NMO story – looking back to when Saffie was diagnosed at only 8 years old.
Saffie had always met her milestones growing up, with no major issues to cause any concern. Life was great, Saffie was enjoying school and her extra clubs: she led the normal life of a Primary Schoolgirl. Normal?! -Saffie
Looking back now, pulling all the little oddities into line, perhaps we can now see that the clues to something more sinister were there – we had visited the Doctor’s when she was only 6/7 years old with a sensation of pins and needles in her hands and feet; at meal times would often take an hour of encouraged eating; her reluctance to walk distances; playgrounds and outside toys would lose their appeal within minutes; she had meltdowns at small accidents or when she was pushed in a group – we just accepted this as our sensitive little girl. Playgrounds are dangerous – war zones with balls flying everywhere. – Saffie
One day in October 2015, Saffie complained of backache with no other symptoms. Road bumps would cause her to cry out in pain and her walking wasn’t right in the mornings, so I took her to our GP. The GP noticed a curvature of her spine and referred her onto the Orthopaedic team. Her back pain was gone within the week without anything more than Calpol. We were able to take a cancellation and the Orthopaedic Consultant reviewed Saffie, and her back X-Ray. The curvature wasn’t of great concern and it was suggested that the back pain was due to short hamstrings. Saffie was referred to a Physiotherapist. A review with the Physiotherapist seemed to show no areas of concern and we were sent home with a set of exercises to extend Saffie’s hamstrings.
December came with no issues, until the morning after the school disco. I thought Saffie was tired from the fairly late night, along with End-of-Term Blues. Saffie was infuriatingly slow to get ready for school for the next couple of mornings. I remember having to slide down my bed, slide to get out of bed, and crawling over to the landing bookcase to haul myself up to get up, as I just couldn’t get my legs to stand properly – they just felt too flimsy. – Saffie
Over the Christmas break we tried to take it easy, allowing Saffie to rest as much as she needed. She was reluctant to do most things. Before Christmas, I contacted the Physiotherapist to report that Saffie couldn’t do most of the simple exercises that we were trying, she had no power to do the exercises and that she had an odd walking posture. We were describing it as watching a Polio sufferer walk. Her left leg was lagging behind. After regular meltdowns for us all, we visited a different GP to express our concerns, but after checking her joints we were told that nothing was wrong, told to stop mentioning the walking issue to Saffie. The Doctor didn’t want to see her walk… apparently that wasn’t the issue. I, as the over-protective mother of one, was.
We changed tactics – getting Saffie to do normal activities to encourage walking and gentle movement. That didn’t help. Back to school: I had spoken to the Head Master and Class Teacher to express our concerns and to ask them to report back if there were any issues – no issues were reported then, so again it was suggested that she was only acting this way during time with us, her family. Walking the short distance from the car to school and across the playground was a real mission, daily. Saffie kept tripping, would be gripping onto my hand, desperately trying to act normally.
There were six weeks of what we now call her first NMO episode; and finally, literally overnight, as fast as it came, our Saffie was back to walking normally, feeling happier and less frustrated with life. See Mummy, it wasn’t Kindle-itis! – Saffie
Introducing NMO episode number 2… March 2016.
Near enough 6 weeks after the first NMO episode ended, Saffie was hit harder, literally overnight, again. This time it looked as though her right leg was dragging. It was then I noticed wiggly lines along the sides of the car and saw that Saffie was trying to walk but holding onto every surface possible, in between tripping and falling to the ground. As it was a weekend, we tried a small dog walk, only for Saffie to be carried back home after 50 metres. We went to a warm swimming pool hoping that would warm and relax her muscles, but she couldn’t even support her own body in the water. It was obvious to us: something was wrong with our baby girl. Looking back through her school books, we could see that her handwriting had declined significantly leading up to this time. My hand seemed to be too lazy to write properly. – Saffie
Monday morning arrived and we managed to get an appointment with a locum GP at our Doctor’s Surgery. Finally someone listened to our concerns and watched our daughter struggle to walk into the room, falling all over the place, grabbing at anything to hold onto. An immediate call was made to our local hospital, and we were told to pack an overnight bag… just in case.
Arriving at our local hospital, we relayed the story that outlined our concerns to the Paediatric Registrar. Neurological tests, Medical History, and many conversations later, Saffie had her first MRI and first set of blood tests.
Garth went back home to deal with everything in the house, agreeing that he’d call in the morning for a progress report. Night time came and we were taken off the ward and ushered into one of the small bedrooms for a couple of hours, before a new Doctor informed me that something on Saffie’s MRI was rather concerning and that the Bristol Children’s Hospital wanted her up there, immediately.
Our first trip in an Ambulance led us to a sheer overwhelming blur of confusion, concern and complete shock of an experience. It was the rattliest vehicle I’ve ever been in! – Saffie
Bristol Children’s Hospital felt a million miles away from reality, being shifted up to High Dependency where all the staff were super attentive and demonstrated reserved concern. Saffie and I were both beyond shattered. I’m sure I wasn’t talking much sense. You’re right there! – Saffie.
I kept asking all the ‘what and why’ questions about all the medications that they started pumping into our poorly daughter.
Having called Garth in the early hours to say that we were being moved to Bristol, he arrived in the more normal morning hours, probably having had minimal sleep too, to a sight I don’t expect he thought he’d see.
At some point over the next few days, after more MRIs, bloods, tears, questions, and of course pumping more drugs into our baby, we were called in for a ‘little chat’ in a small room with two Consultants and the Head Nurse with a box of tissues. It fills me with anxious dread every time I think of what was discussed in that room. It felt like hours were swallowed up in those moments. I’ve never felt so weak and fearful as I did then. Here I was, with the love of my life, hearing the worst news ever.
Glossing over the cavern that was expected to swallow up my world, we agreed to a spinal biopsy to determine what kind of Spinal Tumour they thought Saffie was suffering with. That day came, our baby went into theatre, Garth and I walked around Bristol in a daze, feeling sick, gathering a random wish list of treats for Saffie… prawn sandwich, sushi, Krispy Kreme doughnut and a balloon. The operation took longer than expected, but they gathered all that they needed in that one procedure.
Our baby came back, having been instructed to lie flat for 3 days. The days went by, waiting for the results to come back. Acting as normal as can be, friends came to visit, and new friendship bonds were created with fellow long-termers of Ward 38! All had unique stories full of surprises. This was a new world to us, one that I never knew existed, in full flow. The nursing and neurological staff were fantastic throughout and tended to our daughter’s needs expertly.
Saffie’s results were in… this was NOT the suspected inoperable spinal tumor. The relief was overwhelming, but going back to the unknown held its own curse. The remaining spinal samples were to be sent all over the place – including to the US – to help determine the cause of Saffie’s illness. More MRI’s and blood tests were ordered, a Lumbar Puncture, different tests for TB, exotic disease tests, Lyme’s disease testing, many more tears shed, more information shared. Questions were asked back and forth. We were getting nowhere and were informed, that we might never find an answer, we might never name the illness our daughter had been suffering with.
After a few weeks of being bed-bound, Saffie convinced me to talk to the Physios to allow her to stand as she felt she could walk. Just like a switch again, she had the power to be able to stand and attempt to walk. Weeks of rehabilitation followed but she progressed so well. Saffie reported that the pins and needles feelings she had felt for years had gone and she was far less hyper-sensitive. Meal times were a far less time-consuming activity and Saffie admitted she liked to eat food! Thank you steroids! I still get £5 for finishing dinner quicker than you Mummy… but I don’t think either of us will be beating Daddy! – Saffie
Results were coming in, mainly inconclusive, to identify or rule out what her illness might be, but she progressed well. Out of the blue, we heard that there was a positive result for ‘AquaPorin 4’…but no one… no one… knew what this meant! I needed information, so I Googled it and found out that this could mean NeuroMyelitis Optica – whatever that was! I shot emails off to anyone who claimed to know anything about NMO – I was on a mission! Thankfully I came across Tony from the NMO Charity and I spilled my heart out, pleading for any information to help our daughter. I was grateful to be informed about the NMO team in Oxford and I placed a call with them.
Having read all the information on the NMO Charity website and referring our Consultants to our recent finds, valuable information was shared and a treatment plan agreed.
Saffie was progressing steadily and we were allowed to come home for weekend leave, and, eventually, after 2 months at Bristol Children’s Hospital, we came home for good! How we had all missed our home.
Settling back into home life, being responsible for Saffie’s care and cocktails of medication was daunting. Attending all the appointments seemed impossible at times, but with such great support from friends and family, our GP, the multiple Consultants that Saffie has, the NMO Oxford team, NMO Charity Information Weekend and the support we’ve also found through Facebook groups, we feel as though we have had a fantastic service.
Saffie has had another relapse since being on her management plan – sneaky but significant. For Saffie, we believe that tummy pains (a referred pain for children) along with ‘shoulder blade shelf’ pains are signs for us to communicate her symptoms to the NMO Oxford team for support, along with our Bristol Neurologist and Bristol Rheumatologist, for treatment.
We are always on the alert for any new neurological signs, visual disturbances, previous signs… and have a great network within the NHS to support our concerns whenever they arise. Without the great flow of information, we wouldn’t have such seamless treatment and support.
Yes, it was (and sometimes still is) a horrific time for us all, but with the ability to share and collate information that not only helps us, but, hopefully, helps spread the NMO story far and wide. The next new person to suffer with NMO might just get diagnosed a bit quicker and have fewer short or long term issues as a result.
Had our Neurologist been aware of NMO and how it might present, or the Orthopedic Consultant… or even all the additional Consultants we saw at our local hospital or Bristol, or even our GP (spotting Transverse Myelitis symptoms would have helped) our experience could have been cut a lot shorter, and perhaps Saffie wouldn’t have had any episodes after the first. Wouldn’t it have been great if one of the student Doctors had read about NMO and suggested the simple blood test?
Saffie’s recovery would have been quicker, she might not have had to suffer through so much rehab, and wouldn’t have missed so much schooling, instead growing up in line with her friends. She wouldn’t have had to endure the horrid sights, tests, experiences, fears, worry, and all the distress that, at 8 years old, she had to go through. These are just some of the reasons why it’s so important to fund research into a cure, or even different management techniques, and to spread the message about what NMO can look like to avoid cases being missed or treatment delayed.
We can all help spread our NMO stories, raise some funds to help support the NMO Charity with its information awareness campaign – which I am sure we have all used, and help fund and direct research into a valued cure not just for NMO, but for other auto-immune illnesses.
If I could have one wish, I’d wish for my daughter’s life to be as fulfilling as she aspires, free from the troubles of NMO.