Other Children's 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

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

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