OTHER CHILDRENS' STORIES

Matthew was born perfectly healthy – he achieved his normal milestones, was learning to sit up etc. But the day he turned 6 months old, he seemed a bit off colour, like he had a cold but wouldn’t feed. That evening as I was putting him to bed, I noticed he had a twitch in his right check near his eye. When it hadn’t stopped by the time I’d got him changed, I knew something wasn’t right, and I went straight to the hospital.

A doctor said that the twitching was a seizure, and rushed us straight round to be seen to. Matty was kept in overnight and moved to a ward. In the middle of the night, a nurse came round and saw he still wasn’t asleep or feeding. She felt the top of his head, and moved us straight into isolation where I overheard the word meningitis.

The following day Matty had a full blown tonic clinic seizure which wouldn’t stop no matter what the doctors did. He was taken to intensive care and had MRI scans.

We spent 3 weeks in hospital, where Matty seemed to return to his old self, and we were allowed home. 

But a week later, he became unresponsive and not feeding again. I took him straight back to hospital where we spent the next 3 months.

This time I was told the word Encephalitis, probably caused by the herpes simplex virus, most likely by something as simple as being kissed by someone with a cold sore.

After another MRI scan, I was taken into a room where the consultant showed me two scans, he said the white areas were where the brain was permanently damaged. The whole scan looked white.

I had to tell my husband that our son was permanently disabled. Doctors couldn’t say how bad it would get until he grew older.

When we left hospital, we had a nasogastric tube to feed Matty – syringing high calorie formula milk down his tube, a feeding pump for overnight, a variety of positioning equipment as he was unable to move any of his limbs independently – including his head – and a suction machine because he was unable to swallow his own saliva.

Over the next few years, Matty made progress, slowly.  When he was one, his dad managed to teach him to suck a bottle again, and then later, purée off a spoon. Later than that, to take a bite of a sandwich.  Years of physio paid off, he regained head control and by the time he was 6, he could sit unaided.

However there were more problems. Matty developed epilepsy shortly after leaving hospital. He also had reflux due to the weakness of his diaphragm, which meant he wasn’t gaining any weight: he was constantly projectile vomiting.  This also meant further hospital stays with chest infections and pneumonia. He was then medicated because he developed an involuntary movement disorder which left his limbs jerking constantly.

Matty is 13 now, he appears to have grown out of epilepsy and the movement disorder. He is still non-verbal, and is a full time wheelchair user. He can sit unaided and weight bear, but he cannot balance or stand on his own. He attends a special needs secondary school where he seems happy.  He is very sociable and enjoys being around people, especially his siblings.

I had no idea what encephalitis was – I’d never heard of it and was too scared to ask. This was before smartphones, so it wasn’t until I nipped home for a shower that I managed to google it – 

the first words I found said high fatality rate.

Encephalitis is still so unheard of by so many people, yet it is just as life threatening as, if not more than, meningitis. Because it is difficult to see the total extent of brain damage in young children, parents are advised to ‘wait and see as they grow’ – it’s so difficult to live like this, always hoping but constantly uncertain of what the future holds for your child.

The support from people who have been there, The Eden Dora Trust  for children with Encephalitis, is genuinely invaluable. It’s not a faceless charity, you know their knowledge is first-hand, and it means the world to know that there are people there for you.

– By Leila, Matty’s Mum

Emily was born September 2016 after a healthy pregnancy, her first year of life was full of joy and she met all of her developmental milestones. Unfortunately, in 2017, she was bitten by a mosquito whilst holidaying in Spain, we thought nothing more of it and upon our return to the UK Emily developed a viral infection common in children: hand, foot & mouth disease.

Aged eleven months, whilst she had hand foot & mouth disease, Emily had her first tonic-clonic seizure. It took us by surprise, so we called 999 and requested an ambulance. The ambulance arrived and took Emily to hospital for observations, she was shortly discharged and we were told she had had a febrile convulsion due to her having a high temperature. We were told it is very common in infants to have a seizure with a high temperature.  

The following morning, Emily had another seizure, and again we called an ambulance. The ambulance took her to hospital for observations and admitted her. Unfortunately, Emily continued to have seizures and vomited repeatedly, she was losing consciousness and the doctors told us they suspected that she had a brain tumour and took her for an MRI scan. The MRI scan showed inflammation of her brain, and so they performed two lumbar punctures, which both came back clear.

Emily stayed in hospital for one week, and even aged eleven months we knew our baby had changed. She no longer recognised us or giggled and splashed in the bath like she used too. Emily appeared vacant, a different child to her former self. After many tests and a week in hospital Emily seemed to make a good physical recovery so was discharged with a diagnosis of viral encephalitis.

We had never heard of encephalitis, and after doing some research and seeing how much of a devastating illness it could be, we were just over the moon to have our baby home and that she survived. We thought that that was the end of an awful nightmare.

Shortly after returning home, Emily continued to have tonic-clonic seizures and was given a diagnosis of epilepsy and medicated to prevent further seizures. Two years passed with no seizures, and we noticed that Emily was not meeting her developmental milestones. In particular, speech and continence. We raised our concerns with her epilepsy consultant, who acknowledged that she was behind and made referrals to community paediatricians and speech and language therapists, but ultimately they said that it is usual for children with epilepsy to be developmentally behind, and that it’s likely to be genetic. Emily was referred for genetic testing, which subsequently came back clear and was given a suspected diagnosis of autism due to her behaviours.  

In February 2021, Emily had another tonic-clonic seizure. At this point we had an instinct that Emily’s challenges were in fact nothing to do with epilepsy or genetics, and we wanted answers.

We stumbled across the Eden Dora Trust for children with encephalitis, and after a wonderful chat with them we believed that Emily actually had an Acquired Brain Injury from Encephalitis.

We were advised to broach the subject with Emily’s consultant and that it would help Emily if we had the diagnosis in writing for educational purposes. At that point, we felt lost, out of our depth, and nervous about questioning medics. With the support and encouragement from the Eden Dora Trust we felt able to challenge Emily’s medical professionals. Initially, we were told that Emily had autism or a genetic epilepsy syndrome causing her difficulties, but after several referrals and challenges, Emily has now received a diagnosis of Acquired Brain Injury from Encephalitis and referred for rehabilitation services. It is unbelievable that this happened four years after she was initially diagnosed with encephalitis.

The Eden Dora Trust for children with encephalitis have provided personal counselling support to our family, offered free advice, supported us with Emily’s EHCP application, provided vital educational training for Emily’s school, provided training for our family on how to best cater for Emily’s needs, and without the EDT’s support Emily’s journey wouldn’t look as prosperous.  

Without the Eden Dora Trust, Emily wouldn’t have access to the support she needs and would still be stuck on a waiting list for a suspected autism diagnosis.

Emily is currently in a mainstream primary school with 2:1 support, living her best life and we credit The Eden Dora Trust for Children with Encephalitis for supporting Emily and our family through such a challenging experience.

– Written by Emily’s mum, Charlotte  

It all started in February 2013.

Our four-year-old son Lewis came home from a weekend at his Grandparents house with what we thought was an ear infection. He had all the symptoms – pain in his ear, sickness, a temperature.

I took him to see a doctor the next day who gave him a course of antibiotics, he seemed to pick up over the next few days – but the symptoms came back.

Over the next three weeks, Lewis became extremely lethargic, developed sickness, a slight fever and headaches; he became pale and started to lose weight. Doctors were adamant that it was a viral infection- but deep down I knew there was more to it.

On the last visit, the doctor recommended we take Lewis to the hospital as soon as possible, and when we arrived, we were rushed up to the assessment unit where Lewis began to pick up.

It was decided to keep him in overnight and carry out some tests to see what the problem was, and from that night on – It was like a nightmare.

Lewis became unresponsive. It was like there was no life in him, other than the grinding of his teeth.

The doctors did a lumbar puncture on him, which didn’t show what was wrong and, over the next five days, they carried out test after test to try and find the problem.

Five days later, Lewis started to have seizures. They were horrific. He would go stiff and his pupils would become massive.

He was taken for a CT scan and then returned to the ward where he was hooked up to some medication to control the seizures which were now lasting for SEVEN minutes a time.

The next day he went for an MRI Scan which confirmed he had a severe case of A.D.E.M Acute Disseminated Encephalitis.

Lewis was kept in a Psychiatric Intensive Care Unit for five more days where he was given a cocktail of steroids, three different antibiotics, pain relief muscle relaxers and epileptic medicine. Later he was taken to a neurologist ward for children to recover.

Lewis just did not seem like my boy anymore. He was completely different. For the first few days he couldn’t remember any of us, he just turned his back and ignored us all.

But then he started to come round. He had intense physiotherapy, occupational therapy, the works! There was so much going on – Lewis had to learn how to drink out of a cup again, eat, crawl, walk, everything.

It honestly just didn’t seem real.

After seven weeks in hospital, we were allowed to take Lewis home to continue his care. And two months later, he was walking and running around again. It was lovely to have him home again.

But encephalitis has completely changed our boy!

His personality is totally different now – he is extremely impulsive, he doesn’t recognise dangers anymore and he can’t control his anger or emotions. All of this is something we are working on and getting help and support with in order to help Lewis in his recovery.   

Now, in 2016

I managed to push so much that we finally got a repeat MRI on June 16, it showed a lot of scarring, white matter and signal loss in the parietal lobe, temporal lobe and the cerebellum.

Lewis is now very impulsive, emotional, gets easily frustrated, he doesn’t understand personal space – which affects him massively at school, trying to make and keep friends – he has very inappropriate behaviour, tics, and really struggles with his concentration at home and school, he just cannot concentrate on one thing.

The fight for support for my Lewis has been so so hard! He’s on melatonin at night to help him go to sleep – he can’t sleep with out it. He has so many nightmares it’s unreal & they are really very disturbing too! We now have a disability social worker on board and school have become extremely helpful over time!

Now, I hope that Lewis’ story – and others – will help us to get the word out about how incredibly life changing encephalitis can be.

– Written by Kaye, Lewis’s Mum

It all started on the day I gave birth to my fourth child – Annabelle’s little brother. Annabelle came to the hospital  with our other two children and her dad, she was thrilled to meet her new baby brother, but didn’t quite seem her usual self. I couldn’t put my finger on it but her cheeks were bright red and we thought perhaps she was coming down with a cold. She was a healthy, happy four year old and we had no reason to ever suspect it was anything other.

Myself and our new born baby Ted arrived home looking forward to Christmas and the new year as a happy family of six. However, over the next few hours Annabelle worsened, she drained of all energy, complained of her legs hurting and became incredibly pale. I knew something wasn’t right so I called our doctors for advice – the doctor said to give her Calpol and Nurofen, as

it just sounded like a virus.

So that’s what I did, but she never improved. Days later, she was finally able to sleep so I decided to try and freshen up her mouth with her toothbrush – but however crazy it sounds – I couldn’t open her mouth, it was like it was being clenched together. I called NHS Direct and an ambulance was called. I didn’t think we needed an ambulance – we didn’t want to waste their time.

Two paramedics came and it was immediately seen just how ill she really was.

We arrived within minutes and Annabelle was carried in, no sooner had he laid her on the stretcher she brought up lots of green fluid and went into a massive convulsion (seizure). By now she was unconscious and I was starting to realise that perhaps this wasn’t just a simple cold after all.

As the hours ticked by and we waited for answers, Annabelle was still having seizures and the doctors were having trouble stabilising her. The following day she went for a C.T. which showed possible meningitis. We stayed in hospital for 2 long weeks, where Annabel underwent a lumbar puncture, MRI scans and CT scans while we still didn’t get a definitive diagnosis.

Then during the early hours of one morning, Annabelle’s breathing became erratic and she had another seizure lasting an hour and forty five minutes, doctors struggled to stabilise her and we were warned if the seizure couldn’t be stopped she would need to be transferred to a specialist hospital for life support.

We were crushed. Never did we ever imagine things would come to this, how could our  child, our Annabel, have to go on life support?

Hours later we followed the ambulance carrying our daughter to the Evelina Children’s hospital in London. She was placed on life support in PICU (paediatric intensive care unit) and that’s where she spent the next few weeks.

After more detailed MRIs, we finally got the final diagnosis of ADEM – Acute Disseminated Encephalomyelitis.

We struggled to take in and understand ADEM – which is a rare form of Encephalitis that affects the brain and spine.

Annabel spent two months in total in hospital. And after weeks on life support she began to spend time in a Paediatric Neurology ward before eventually being transferred back to our local hospital for rehabilitation.

With intense physio and occupational therapy, lots of medicines and copious amounts of tlc, Annabelle started making a good physical recovery, walking, talking, eating, swallowing – even smiling again. It took around a year and we were thrilled, we hoped this would be the end of our nightmare, however…

…we had no idea of the severity of our little girl’s Acquired Brain Injury (ABI) – we didn’t realise just how complex illnesses of the brain are and just how much of the child can be affected.

As the physical recovery continued, her emotional and mental recovery wasn’t as good – she was referred to CAMHS (childhood and adolescent mental health service)for assessment and as time went on, Annabel developed problems with her hearing and her vision. She also developed issues with her legs and had physiotherapy on a weekly basis and was given insoles to wear in her shoes.

After what was deemed to be a good recovery for the first year, things started to go downhill again

We were always that family that had our lives ahead of us – that typical run of the mill family that never thinks anything like this can happen to them…well it can, and it did. Through all of this, although Annabelle was so grossly unlucky to get sick in the first place – we still consider ourselves extremely lucky that we still have her here with us, as so many do not.

If telling our story helps just one other person to become aware of encephalitis, it will have been worth it. Please try to spread awareness, and to support the Eden Dora Trust for Children with Encephalitis: the work they do is truly amazing. Thankyou.

– Written by Charmaine, Annabelle’s Mum

Joshua was born in 2009 at home and developed typically until 2011, when just after his 2nd birthday he caught chicken pox.  Weeks later Joshua had what appeared to be a tummy bug: he was vomiting, unhappy and wanting to be cuddled.  Hours later he became unresponsive and was rushed to hospital. 

He was put on life support, we were told he was unlikely to make it through the night. 

Joshua was a fighter and despite the odds, he survived. A week later we were discharged. It was another three years of fighting for someone to listen before he was diagnosed with an ABI as a result of chicken pox encephalitis. 

Joshua now has a complex speech and language disorder, dyspraxia, sensory processing disorder – he is both a seeker and avoider, fatigue, insomnia, mood swings, frustration, gross and small motor skills problems.  He is academically around four years below his chronological age.

He really enjoys practical and outdoor activities. He joined Beavers when he was 6 and earned every badge there is; he’s now earned his Chief Scout Silver Award and Pre 2015 Chief Scout Award – he even visited the Palace of Westminster as a Scouting representative for Suffolk.

Despite this, nothing is getting easier, and life remains a constant battle for Joshua and us. We’re still struggling every day, even now, to receive the vital help we need to help Joshua’s life improve at all.

– Written by Joshua’s mum Judy

It was just a couple of weeks after my final exams that my life changed forever. Instead of being able to celebrate, I found myself beginning a nightmare that would become my life for years to come.

On June 20th 2011, I was watching television at home and I had my first seizure. An ambulance was called, I went to A&E, and I was sent home. I had another seizure. I was kept on the stroke ward for two weeks, where my health seriously deteriorated.

No one knew what was wrong with me.

The only way to describe what I became in those weeks were to think of ‘The Exorcist’; hallucinations, seizures, loss of movement, erratic behaviours, dyskinesias.

One day I stopped breathing, and was sent to ICU. Once there, I continued to decline and eventually was put into a coma. Thankfully, my consultant had, just the previous week, been at a lecture on rare forms of encephalitis.

They diagnosed me with Anti-NMDA-R encephalitis, autoimmune encephalitis – where the body decides to create antibodies to attack its own brain.

They kept me in a coma for fourteen weeks, until they finally allowed me to wake up.

I had to relearn every single aspect of what makes us human, from walking and talking, to reading and writing, and eventually I started to make some progress.

Once I could walk around the nurse’s station, my time in hospital was finally over. I was moved to a rehabilitation centre where I spent the next three months, until I was finally allowed home. 

Since then, my recovery has been somewhat of a learning curve. I have had my ups and my downs, and made some huge life changes. People found it difficult to relate to the new me; the old Liz had died, and in her place was someone very different.

I can only imagine what it must be like for someone that is still developing relationships in an educational setting. Children usually understand more than you may think, but when it comes to brain injuries, they seem to struggle in comprehending the trauma that they have been through – which I really can’t blame them for.

While I am left with a brain injury, which affects my life every day, what I always have to remind myself of is this:

I am one of the lucky ones.

– Written by Liz Oldershaw

Louis was 6 years old: a ‘normal’, active and healthy boy. He developed a sore throat and temperature for 2 weeks – during which I had taken him to the GP 3 times. I just had a very unsettled feeling about it.

Then, on Thursday 25th Aug 2011 Louis woke up early, extremely poorly, confused and unable to stand up. I took him to A&E in our pyjamas, and knew it was serious. He was admitted with suspected meningitis, and my world went dark.

Lumbar punctures showed cells that shouldn’t be there, and treatment began. He was allergic to antivirals and was on IV antibiotics, when he was transferred to another hospital for an urgent MRI scan. The results were put in a taxi to Birmingham children’s hospital for a paediatric neurological consultant to look at. The diagnosis eventually showed viral Encephalitis … I’d never heard of it, so I had to Google it.

The internet said my son has a brain inflammation. He couldn’t talk, he just slurred, and he was now paralysed. I hadn’t slept, changed, showered or eaten for 5 days: I never left his side, I even ran to the toilet and back so I wasn’t gone for too long. Slowly he was able to sit again, but he had Ataxia and Tremors, and we were told our son may never be able to return to the Louis we knew, he may never walk again, but I just wanted him to be alive so we could try and face whatever we had to deal with.

After 3-4 weeks I wanted to take him home. The hospital allowed this, knowing I could return if needed. Louis was talking more coherently, and was sitting unsupported. Eventually, when he managed stand up alone, I burst into tears. He began walking, though unsteady, for a month or so; and, one day, he finally walked into his first Physio session, where the woman looked at her notes, then at Louis, and said “is this louis?! I expected him in a wheelchair.”

But my son’s spirit and determination was part of his amazing recovery. He missed a year of school, during which I tried to home-school him. When he returned to school part-time he began the battle of catching up with work, and his peers, after such a devastating illness.  8 years on, Louis still struggles greatly with anxiety and PTSD. He’s also very highly-sensory and can have aggressive tendencies, as well as suffering the much slower information processing speed that so many children with Encephalitis also experience.

Every day is a battle: he sits in a grey area as mainstream schools lack the understanding of being able to meet his needs, but he’s unable to go to a ‘specialised school’ as he’s capable of mainstream education levels. It’s been the most terrifying experience I could imagine, and I’m traumatised by it, but we try to be as positive as we can and every morning I say thank you that he survived.

– Written by Louis’ mum, Sammi

On the 28th of September 2018, Alice, then 4, became ill with viral symptoms. She complained of a headache, ear pain and had a high temperature. I kept her off school to be on the safe side, she stayed with her grandparents and I went to work. She seemed to perk up after having Calpol during the day. Later that evening she began being sick. On the Saturday morning when we awoke the left side of her face didn’t seem right, it appeared to have a slight droop, so I took Alice to A&E of the children’s hospital.

The Doctor on duty said he thought she ‘just had a virus’ and recommended pain killers and rest.

Alice seemed to continue with the same symptoms all that day and I struggled to keep her temperature down. The following morning, the unthinkable happened and Alice’s body contorted and she had a seizure. I was frantic and the ambulance was here in record time. Alice seemed to come out of the seizure confused and with memory problems.

The same Doctor we had seen the day before, again, tried to send us home.

Through refusal to move, Alice was handed over to the general medical team. A lumbar puncture was attempted, but was unsuccessful and it was decided she would be put under GA and an MRI would be given at the same time as a lumbar puncture. I was terrified. My little girl laying there, suddenly not able to speak properly, confused and so poorly.

Within an hour of the procedure, Alice was diagnosed with Encephalitis caused by the herpes simplex virus.

We were told the outcome for Alice could not be predicted. I sobbed in fear that I may lose my precious little girl. Encephalitis was an illness I knew nothing about and I feared the worst.

Slowly but surely and with several setbacks I was lucky to watch my daughter get better and improve. It was day 3 when I was told by the wonderful staff at the Sheffield Children’s hospital about the Eden Dora Trust. I read each child’s story and realised the full impact of this terrible illness and its devastating effects.

Alice has been left with an Acquired Brain Injury as a result of the swelling on her temporal lobe, but I consider this lucky when I think of how she may have been left. She’s a funny, vibrant and beautiful little girl and her fiery spirit I believe is what helped her survive this. She is now approaching 6 in April and to say we’re blessed is an understatement. I would like to thank the Neuro team and the general medical team for saving our little girls life. And a special thankyou to Petrina and The Eden Dora Trust for Children with Encephalitis for their continued support for Alice and me.

On the 15th December, my dear son Yossi, age 5, developed symptoms of fever, vomiting, and being sleepy and quiet. A sickness bug was going round his school, but after a few days his fever would still not go down, and we became worried and called our GP. At first, the GP said Yossi’s symptoms did not sound alarming, but by the time he saw him Yossi was even too weak to get out of his buggy, and the GP ran a few tests before rushing him in to the closest hospital as a critical emergency. I was told to go directly to hospital and not wait for an ambulance.

The hospital got Yossi on a bed and took some blood tests, then once he seemed stable he was transferred to another room. We requested he be put onto a drip or given some medication, but once Yossi was transferred we were left without any information or support on what was happening, and had to wait a long time for a consultant to see us. Eventually, when the consultant was free, he moved Yossi again, but this time into isolation – fearing Meningitis.

Before all of this, he was a completely typical child, but now, Yossi couldn’t speak anymore, and he was incredibly uncomfortable: crying and moaning and still with a high fever. 

After more medications were given, lots more blood tests were taken, which came back saying he has flu type B. It was after this that Yossi was sedated and taken for a lumbar puncture, which ruled out Meningitis. Yossi was still unresponsive at the time and wasn’t aware what was going on. An MRI was then taken, but Yossi didn’t even need to be put to sleep as he was so weak, so as a precaution that he would not move in the scanner we just wrapped him up in his blankets.

The MRI showed the doctors Yossi had signals of swelling of the brain – Encephalitis. Finally, the doctor was able to treat Yossi confidently, and no longer had to treat him ‘blindly’ without knowing what was wrong.

On the 4^th day in hospital, Yossi finally said his first word: “mummy”. It was so special to hear, and was such a beautiful moment. We know that in these situations, every little step is really a big step. Slowly but surely he gained some strength back, and even started moving alone in his bed and being able to drink from a straw (but not a cup as he couldn’t hold it).

By day 6, Yossi was counting and singing, even though his speech was still very poor, but the tune was still there. And, after 6 days, we were discharged and able to go home, on December 24^th.

As a mother, I was physically and emotionally shattered by this point. I found it so hard to talk about the whole ordeal, and I was an emotional wreck. Yossi was my first son and was so very precious to me, so it hurt so much for this to happen. At home when I did the laundry I would cry, hoping it would not be the last time I was washing his clothes.

Since coming home, Yossi has had to see so many professionals, like Occupational Therapists, Physiotherapists, Speech and Language Therapists, and Neurological Consultants. It has been so difficult, but has made some good progress. We were told not to work the brain too much, as Yossi gets mentally and physically tired much easier now, he used to climb on my kitchen sides to get all the goodies but now he can’t as his muscles are weak. For a long time his speech was poor and slow and unclear, and he’d regressed and forgotten all previous education like his ABCs and colours.

After 2 months he was finally allowed to return to school for a short while. He slowly integrated back, and it was exiting but also very difficult for him and he had lost his friends.

Since his hospital stay, Yossi had to go back into hospital a few times, and in July 2018 fell over randomly in the house. Again, he was vomiting a lot and we took him to hospital, where he had a CT scan that showed he had had a seizure.

Yossi has still been struggling educationally in most areas, and whilst we and school help as much as we can, he still does not have a EHCP. They are so difficult to obtain.

Sadly, during lockdown in 2020, just as Yossi was making some amazing progress, his education has regressed and fallen behind again. But honestly, I am just happy he is still here and healthy and a happy child.

When I found the Eden Dora Trust for Children with Encephalitis, it was lovely to know there was a dedicated organisation out there who were providing the information and support that is so important to parents in our situation. Being able to reach out to them, and knowing they are on the end of the phone whenever we need their support, is so reassuring.

– Written by Yossi’s mum, Rachel