- Emma's Story – A Journey through Encephalitis
By Margaret and Ian Shaw
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- I read the book from cover to cover and was most impressed. Indeed I learned a great
deal that I did not previously know. I thought it to be an excellent piece of work
and that it would have been very informative and, to a great extent, comforting
had I been in a similar situation to that faced by Emma's parents. Luckily I am
incapable of imagining what it must have been like to be Emma herself. How fortunate
we are!
John FM Rodwell, Chairman, The Hedley Foundation, 9 Dowgate Hill, London EC4R 2SU
Many of you have sent us your story and we are pleased to be able to present some
of them below for the interest and benefit of visitors to this website.
Michael's Story
Michael was a restless, irritable baby and he cried a lot more than I thought was
normal. His head was very misshapen from the forceps delivery. We made
countless trips to the doctors for advice. We were told that some babies take
a long time to settle down, that he may be unlucky enough to have colic for a year,
we should try changing his milk or removing wheat from his diet and spend a long
time winding him. We still did not know why he was so irritable.
One afternoon in March 1993 when Michael was ten months old, he screamed all afternoon
apparently for no reason. Over the next few days he became very tired, increasing
his daytime sleep considerably. He developed flu-like symptoms, becoming listless
and running a high temperature. I called the doctor who gave him antibiotics and
told me to give him Calpol and sponge him down when his temperature became high.
He ran a high temperature all night.
The next day he was still increasing his daytime sleep and crying a lot. He
was also turning away from bright sunlight when I took him out which I did not realise
was a bad sign until later. I thought it was because he had been indoors for
a few days and was not used to the brightness outside. I did not think of
checking for a raised fontanel, a sign of serious illness, because I was so busy
looking for a sunken, dehydrated one. The following day, Michael became clumsy
and increasingly restless. We were up most of the night with him as he was banging
the side of his cot every 20 minutes or so.
The next morning Michael was subdued but seemed fine. Suddenly, he slumped
to one side as if he was having a silent fit. I phoned the doctor immediately
and he arrived within half an hour. The doctor gave him Valium and phoned
the Sick Children's Hospital where we went straight away.
Michael had a lumbar puncture, swabs were taken and he was given antibiotics and
acyclovir. He was still going in and out of fits about every five to
ten minutes and they were beginning to cause more obvious problems. His eyes were
rolling, there was involuntary movement of his left arm and he was shaking down
his side. He was also suffering from diarrhoea. I was becoming more upset
as each fit came because each one seemed to cause a little more damage to his left
side and they were getting longer. He was given phenytoin to stop the fits.
I was delighted because the fits stopped and he was able to settle. I felt this
was a turning point for the better.
By this time, the doctors did not think Michael had meningitis and encephalitis
was mentioned as a possibility. A brain scan was carried out which showed that damage
had occurred to the temporal lobe. Michael, still on phenytoin, continued to improve
as the week went on.
Six days after going into hospital, Michael came home. For the following months
he was very tired and weak and picked up every chest, throat and ear infection that
was going. His behaviour was more aggressive and he needed a lot of love and
attention. However, his left side made a rapid recovery and he learnt to crawl again.
Our main problems ahead were to overcome Michael's difficulty in going to sleep
and to build up his fitness once more. We asked the doctors what problems we might
face in the future. They could not say as Michael was a developing child.
However, they did say that the area of damaged brain was the area that controls
behaviour and emotions.
In the next months (still on phenytoin which was gradually being reduced each week),
there were days when he just cried and cried. Unprovoked, he would bang his
head on the floor. He was what I would call hyperactive. He could not give
in to sleep in the normal way and we approached our doctor for help after almost
a year of battling with him. She agreed to give us two prescriptions for Vallergan.
In the end we had to follow a fairly well-known sleep plan, leaving his bedroom
after putting him to bed, going back simply to reassure him but with minimum contact.
Michael would make himself sick to regain our attention. Eventually, this subsided
but we had to endure his night waking for a further six months.
When Michael gets too high during the day I think his emotional state is very much
affected. I decided a long time ago to try to keep him calm and I believe he copes
better with everything this way. I have problems pinning him down when he
gets high and he appears not to be in control. As a result he can become aggressive
and he has had many tantrums from the age of ten months to three years.
We attended the Sick Children's Hospital every three months initially and now every
six months. Michael had a second brain scan in October 1993 which showed that
the original area of brain damage had healed. The visits appear to be arranged to
allow the hospital to document Michael's progress through my eyes. Little or no
information is given to me about his progress or possible problems. I have
found this quite hard as he is my only child and have no one else to compare him
with.
He took a long time to settle at mother and toddler groups but I persisted in taking
him. He is now very good at mixing with other children and I put this down to my
going out and about with him every day, something that would not be possible if
I had other children to think of or work to go to.
I have started working at weekends as I find I need short breaks from him. His behaviour
is still of a slightly hyperactive nature and he seems to need to keep busy all
the time or he starts to get destructive or irritable. He needs to rest at
intervals or have a sleep to cope with the day.
We are one of the lucky families and cannot imagine what may so easily have been
a more devastating outcome. I am sure Michael's recovery is due in part to
the speed with which we got him to hospital and the doctors' team effort to diagnose
his problem and treat it with acyclovir. We still don't know if he will have
any problems in the near or distant future as a result of encephalitis.
Callum's Story
Callum was born on 15 December 1993. Karen and Andrew had desperately wanted children
for many years and he was their first adopted child. He was not only a very precious
gift to Mum and Dad but also a very special gift to all his family.
Callum's birth was normal, his weight, 6lb 9oz, was average and he was a well little
boy until 9 February 1994 when he had his first whooping cough vaccination. He was
admitted to hospital two days later, vomiting and with a high temperature. It was
thought that he just had a virus infection and he was allowed home after a week,
but he was poorly for two weeks. From the time of that first injection Callum was
never a well boy again. With hindsight, we should never have allowed him to
have his other injections.
On 30 March 1994 Callum had his second injection but two days later he was admitted
to hospital again with a high temperature and vomiting. This time he was in
hospital for ten days. He was sent back into hospital again with a swollen
fontanelle and, although he was seen by a number of doctors, no explanation was
given on that occasion.
We asked our doctor and the clinic doctor whether Callum should miss his final injection.
We were told that more children die of whooping cough than of the vaccine and the
chances of Callum being affected by his last injection were very slim. He was given
his third injection and we all sighed with relief when, after two days, all he had
was a high temperature which was put down to teething.
Six days later, however, his mother thought he was very quiet and went to check
on him in case he had fallen asleep while sitting up. Callum was blue. He
had stopped breathing and was as limp as a rag doll. After what seemed ages,
he started to breathe again and when the GP arrived he was happy and seemed none
the worse for his experience. However, as the doctor was leaving, Callum stopped
breathing once more and the doctor had to work very hard to start him off again.
After many tests in hospital, including a lumbar puncture and brain scans, we were
told that Callum had encephalitis. His brain was infected at the back left-hand
side which controlled his vision and balance. He was desperately ill for a
week but when he started to respond it soon became apparent that he had not lost
his sight. To be quite honest, after three weeks we took Callum home thinking
he was the same little boy we had taken to hospital.
Callum was diagnosed on 12 July 1994 and until September 1994 we thought recovery
from his illness would be complete. He then started having fits which were
treated with sodium valproate, but by February 1995 he was having 10 to 15 fits
per day. He was referred to Dr Wallace at the University Hospital of Wales where
he was admitted in February. He started on vigabartin as well as valproate
to try to control his fits.
During the ten days Callum was in hospital he was given an EEG scan which showed
he was in seizure all the time. An MRI scan showed that he also had damage
to the top left and front of his brain. He was released from hospital with an increased
dose of valproate and vigabatrin.
To date, Callum sees Dr Wallace every three weeks at her epilepsy clinic.
He is now taking a new drug, lamotrigine, as well as valproate and vigabatrin.
His fits are still not controlled, although they are fewer.
Every day it becomes more apparent that Callum has special needs. He has been fortunate
enough to have been allocated a physiotherapist who comes to the house every week,
a speech therapist every two weeks and a development officer who works with Callum
for approximately two hours a week and leaves things for us to continue the work
with him.
Lauren's Story
Lauren was only two months old when she became ill with what we thought was a cold.
Over the next day or so she gradually became worse so we took her to our local doctor
who sent her to hospital with suspected meningitis.
After a few tests Lauren was released with what the hospital said was just a virus,
but the next day Lauren was much worse. She was rushed back into hospital
where she was admitted for more tests and was started on a course of acyclovir.
Later that day, one of the nurses noticed that Lauren's eyes were twitching and
informed us that she was having a fit. The fits lasted about ten minutes and
over the next few hours began to worsen. Her whole body was now in spasm and fits
were lasting 30 to 40 minutes.
Lauren was rushed to Addenbrooke's Hospital where she spent two weeks in the paediatric
intensive care unit on a ventilator. The doctors told us Lauren was suffering
from herpes simplex encephalitis. We were told to prepare ourselves for the
worst, that our precious little Lauren might not make it through her ordeal and
our nightmare, and if she did come through she may suffer some form of brain damage,
to what extent they could not say.
Lauren stayed in hospital for ten weeks. She was discharged in July 1994,
still having fits three or four times a day. We did not know how well she
could see or hear, if at all. We also didn't know what lay ahead for us as
a family trying to come to terms with what had been happening in our daughter's
short lifetime.
For the next 12 months she visited hospital on many occasions, all for different
problems. Her anti-convulsant drugs were changed regularly to try to find
a suitable regime for her, but for most of the time this left Lauren sleepy and
spaced out. She rarely made any noise and never cried.
Three and a half years on, our little Lauren is making good progress though she
is still unable to walk and talk. I think we find this harder to deal with than
she does. She loves to play with her toys and enjoys close contact with our
family. It breaks my heart to think that three and a half years ago we came
close to losing her, and now, to see her smile overcomes any disability she may
have.
Sometimes we do find it hard being good parents for Lauren. We are lucky that
her Nanny and Grandad are just around the corner to give us the respite we need
to cope with everything. Fingers crossed that Lauren will continue to make
good progress and we hope that all her hopes and dreams come true.
Natalie's Story
Natalie was born perfectly healthy but at the age of ten months she suffered a massive
stroke which baffled the experts. Her mother, Julie, told me the doctors had
no idea what caused it and they couldn't believe the severity of the stroke which
was as strong as an adult's. She was lucky to have survived it.
Natalie underwent numerous tests and was taken to many hospitals, including Great
Ormond Street in London, Alder Hey in Liverpool and Booth Hall in Manchester.
After the stroke, which left her right side paralysed, Natalie started to have epileptic
seizures which got gradually worse until last December when she contracted measles.
Natalie hadn't had the usual MMR injections like other children because of her fits
so this made her more prone to those viruses. The measles got so bad that Natalie
had to be taken into hospital and put on a ventilator. Julie said the doctors
kept telling her and Arthur to prepare for the worst and asked if they wanted Natalie
resuscitated in the event of her dying. They couldn't think of anything but
their little girl and how much they wanted her to survive, so they told the doctors
that, if it came to it, they wanted them to do everything within their power to
keep her alive.
Doctors told Julie and Arthur that the virus had got into Natalie's brain leaving
only a small proportion unaffected, a condition called encephalitis. Although
Natalie can't see she can hear very well. She has to be drip-fed because she only
has a slight swallowing reflex, but Julie says she tries to make the reflex stronger
by giving small amounts of food on a spoon, which Natalie can sometimes manage.
Natalie knows her parents, brothers, Mark and James and her grandmother, Myra. They
are always near her, giving 24-hour care. The Ridehalgh family have been told that
the chances of Natalie surviving past the age of 25 are pretty slim but they are
just taking life one day at a time and have welcomed the setting up of the Encephalitis
Society. Natalie has had a long and hard battle but she's a fighter
and, with the help of her loving and devoted family, it is hoped she will improve
in time.
Andrew's Story
Andrew was a perfectly normal little boy until just before his eighth birthday when
his younger sister was involved in a car accident. She fractured her right
arm and leg and dislocated her neck. She was in hospital for a total of ten
weeks and I had to spend a great deal of time with her.
Six weeks after this accident Andrew became ill with a tummy bug. He appeared
to recover from this, but began to sleep a great deal. He slept almost continually
for two days and then had his first epileptic seizure. He was admitted into
the same hospital as his sister – into the next bed. His seizures continued
despite increasing doses of anti-epileptic medication. A brain scan was arranged,
then an EEG test and the diagnosis of encephalitis was made.
Christmas came and went with the whole family, including my eldest daughter, resident
at the hospital. We couldn't have wished for better care and attention.
Eventually, on New Year's Eve, we were all discharged.
Initially, Andrew seemed to make a rapid return to normality. We hoped for a complete
recovery but now, two years on, we have to face the fact that Andrew will always
have problems. Encephalitis, or more properly, post-infectious encephalitis, is
a rare sequel to an infection. Andrew's tummy bug virus managed to pass through
his blood/brain barrier and infect his brain. Perhaps the stress of seeing
his sister, to whom he was very close, run over by a car and then not having Mum
at home for long periods, lowered his resistance.
Once the virus is in the brain, much of the damage is caused when the virus is attacked
by the body's defence system which results in inflammation. Long-term effects
depend on the areas of the brain which have suffered damage. This can be so
small that there is a full recovery or so severe that it results in multiple handicaps.
Andrew is somewhere in between. He has some damage in his left temporal lobe,
an area which is important for understanding and memorising what is heard. Although
Andrew is aware that he has been spoken to he has difficulty understanding what
has been said. It is as though his own language is a foreign one. He
also has some damage in the right part of his brain because he always fits to the
left. His lack of inhibitions point to some frontal lobe damage.
Andrew's epilepsy has been very difficult to control. Despite a high dose
of medication he still averages one seizure a week. He attends a special school
but, because of his severe communication problems, he finds it virtually impossible
to learn.
On the positive side, he appears to be unaware of his problems. On the negative
side, his communication problems are so severe that he no longer plays with other
children, not even his sister. He cannot read and has a great deal of difficulty
entertaining himself. This, coupled with a lack of inhibitions, causes many
behavioural problems. Shopping is a nightmare as he climbs everything
in sight, hides behind counters and clothes racks and walks up and down escalators
the wrong way. These naughty pranks are acceptable in a two-year-old but not
a ten-year-old. Coming to terms with Andrew's problems has been hard for the family
and we are still learning to cope.
Dean and David's Story
Our story starts with our eldest son, Dean. He was seen by our family doctors on
five occasions before being admitted to Newcastle General Hospital, fitting and
semi-conscious with what was thought to be dehydration. He was four and a half years
old.
A CAT scan diagnosed encephalitis. Dean spent his first night in intensive
care and was discharged the following day, described as the healthiest looking boy
they had ever seen. He was re-admitted three days later after a second CAT
scan showed hydrocephalus. He had an operation to remove the build up of water
and spent a further five days in intensive care. When he was discharged he
did not look like our Dean.
At the time I know friends and family thought we did not quite comprehend what was
happening. To us, Dean was recovering little by little and we were so happy. Even
the doctor asked if we thought Dean could understand us and of course we knew he
did, just as every Mam and Dad knows their child.
Dean's recovery was slow at first, but the real turning point was when we took him
for his first walk in his chair. He smiled for the first time when he saw
a group of children and the delight in his face was incredible. He quickly
learnt to walk again and then to run. His speech came back two weeks after being
admitted to hospital. It has always been clear but at first it was slow and
he paused between each word. This is now back to a normal speech pattern.
Dean's hands, (or his poorly hands as he calls them), were the last to come back.
We are waiting for occupational therapy for fine motor skills although he has good
control over his hands now and his writing is improving. When Dean was discharged
I was told to go home and not worry about encephalitis happening again.
Six weeks later our youngest son, David, then 20 months old, was admitted to hospital
with sickness and diarrhoea. He was admitted to intensive care, for my benefit,
I think, because of Dean's record. After 24 hours David had stopped being sick but
was lethargic, not speaking and needing constant holding. An encephalopathy
was diagnosed and this, we were told, was just bad luck and no coincidence.
David was discharged after a week, unable to stand, balance or speak. Previously
he was a marvellous little talker. He was not as poorly as Dean, I think because
the diagnosis and drugs were given sooner. However, his recovery has been slower.
At our insistence, tests into their immune systems and every other imaginable test
were carried out, but to no avail. It is now thought they both had influenza
A, although results from David's lumbar puncture did not support this.
I had a hard time trying to cope. Then I met a young man at the Great North Run
wearing an Encephalitis Society T-shirt. I introduced myself and my boys and
he introduced his father. Unfortunately, neither of us had a pen to take telephone
numbers. I thought that was it until the Meningitis Trust sent me an ESG newsletter.
It was not until I read the members' stories and the newsletter that I realised
how sorry for myself I felt. It is our boys who have been ill and I really
thought Eric and I were the only people in the world whose lives had been affected
by encephalitis. My spirits were lifted when I was put in touch with the North East
Contact. There really is someone out there who understands how we feel.
Our boys are great now, a fine five and two-year-old. They are a real handful,
but who's complaining? Not us. We are still busy with hospital appointments
and physiotherapy and we are waiting for an appointment with an educational psychologist
for Dean.
Encephalitis is not something we can just forget. We have to try and learn to live
with what has happened but I wish I'd known about your group six months ago. A letter
in the newsletter said Mams and Dads are also victims. It is hard trying to
gather information, especially when it's quite obvious that not a lot of GPs have
seen encephalitis.
Dean and David's Story Update
In May 1997 (almost eight months after Dean left hospital), we finally got our first
appointment with our newly appointed occupational therapist, Jo. The clinic
knew nothing about the effects of encephalitis and didn't know anything about Dean.
We had five one-hour sessions with Jo. If we had had this 18 months ago it
would have been invaluable, but I can only describe the situation as too little,
too late.
Jo was very enthusiastic. I told her we had learned the importance of a neurological
assessment on our family weekend. Having worked closely with neuro-psychologists
before, she gave Dean an IQ test. Although his IQ was appropriate for his age, he
was slightly below the appropriate age for his hand and eye co-ordination, which
explains his poor hand control.
In September 1997, Dean started in Year Two at school and David began nursery school.
Dean is now back with the special needs teacher for help with his handwriting which
has improved since September. I feel that any extra help he can be given will
be an asset.
We now have an educational psychologist based at our school. I have asked
to see him several times only to be told he is busy. As you may realise by
now, I do not like being put off. One day, when I picked up David from nursery,
I saw one of the mums talking to someone who was not a teacher. I asked who
he was and was told he was the educational psychologist. I introduced myself and
explained that I had been trying to see him for some time. He excused himself because
he was busy. However, I stayed outside the nursery for 15 minutes waiting
to see him. Dean is now on his waiting list and the psychologist knows all about
his case and how important an assessment is. Every teacher will now know Dean's
circumstances and realise that he needs a little more time to complete his written
work.
I am concerned about class discussions, because if Dean is not given enough time
to allow him to answer questions he may give up. It is good to know that every effort
is being made for Dean at school, but at the same time it is annoying to think he
has been back at school for almost two years and only now are we getting the help
we need.
The best advice I have been given is not to give up. Educational psychologist,
I now know where you are - I'll be back! The school is presently being inspected
and I have been told that Dean is entitled to have an adult to write down his answers
for him when he sits his Standard Attainment Tests.
Dean has now decided he does not want to play football when he grows up because
he can never get the ball and he said he might hurt himself, like Alan Shearer,
his hero. My kids are my heroes.
Luke's Story
Paul and I have three children, Claire, 20, Marc, 17 and 11-year-old Luke. We live
in Sutton Coalfield near Birmingham and were a very happy, ordinary family until
October 1986.
At the age of three, Luke suddenly became seriously ill with viral encephalitis
of unknown origin. His life was immediately at risk and he was ventilated
in intensive care for several days. He spent six weeks in hospital altogether.
Some of you may find a familiar tale unfolding.
Eight years later, Luke has severe learning disabilities, chronic epilepsy and autistic
traits. Aggressive, socially unacceptable behaviour has been a problem but
has improved with maturity. I could write reams about life with Luke over
recent years but there are a few things I would like to share.
When a child has had encephalitis the effects are not immediately evident.
Once strength is regained, parents are likely to want the child to return to school.
It was different for us as Luke was below school age. Attempts to return him
to nursery school failed miserably.
I was just not coping with caring for Luke at home 24 hours a day. He was
offered a place at a local special school just four months after the illness and
I took it gladly, for my own sanity. I really did believe he would only need
to stay there for a short time, but mainstream school was never to be on the agenda.
Admittedly, I was worried that Luke had special needs, but I soon realised it did
not have a detrimental effect on him because of his own problems. I know some
parents find the whole question of special school extremely difficult, especially
when their child is born completely normal, but a special school provides the level
of care needed and a sheltered environment. The change back to mainstream schooling
can be made at any time.
In the aftermath of encephalitis a child has special needs and the available support
services should be on offer for as long as necessary. It was explained to me very
early on that Luke may be mentally retarded (an old-fashioned term but an accurate
one) and that we would go through a grieving process for the child we had lost.
I don't think the grieving process or acceptance of the future really started until
two years later.
Through the British Epilepsy Association newsletter I heard of the David Lewis Centre
in Cheshire which specialises in helping children and adults with epilepsy.
The centre has its own residential school and facilities for a three month, multi-disciplinary
residential assessment for children with chronic epilepsy. We realised that this
was exactly what we wanted for Luke – a comprehensive, social, educational,
medical, psychological and therapeutic assessment with Luke under the microscope
for 12 weeks. What can a 30-minute session with an educational psychologist
on a day when Luke had a seizure, tell anyone?
It took us 14 months to get the funding for the assessment, half from the Education
Authority and half from the Health Authority. Some feat! The assessment told
us exactly what Luke's problems were for the first time in five years and autistic
traits were broached for the first time. It didn't tell me anything I didn't
know deep down but who listens to mothers? Now the Education Authority listened
and when they realised they could not find a suitable placement for Luke in the
Birmingham area, they agreed the funding for him to stay at the David Lewis School.
Luke has now been at the school since September 1991. This has made an enormous
difference to our lives. The stress just floated away and we had time for ourselves
and each other. Parents should not feel guilty or that they are failures if
their child goes away to a residential school as the benefits for all concerned
are many. I now find that school holidays are stressful but at least I know there
is an end to them.
Paul and I went to the launch of the Encephalitis Society in Leeds in October 1994.
The highlight of the day for me was listening to Dr Livingstone, a consultant paediatrician,
talk about the actual illness. I have always tortured myself with the thought
that, had we taken Luke to hospital a day earlier the long-term effects of the illness
would not have been so devastating. Dr Livingstone made me see that the process
of the illness cannot be changed and has to take its own course.
Basically, there is nothing the medical profession can do other than to use supportive
medicine, and this has improved over recent years.
I can see that the danger of a support group like the ESG could be that parents
might believe the effects of encephalitis for their child will be exactly the same
as for a child where the result has been devastating. All parents have to
understand that no two cases are the same and outcomes will always vary. The recovery
times also vary enormously and can take several years. What we have in common
is that we all have changed children.
Finally, I can only say that I was in a tunnel of despair for many years but residential
school and the process of time helped me to emerge at the other end. If anyone
wishes to contact me I would be happy to talk to them. My phone number can
be obtained by contacting the Encephalitis Society.
Mary's Story
In 1958, when I was two years old I contracted encephalitis. Mum said it was terrible.
I was in a coma for two weeks and in hospital for three months.
I went to school when I was five but I had problems learning, and retaining information
was very difficult for me. I went to two primary schools, then on to a convent
where I was quite happy and made a lot of friends, although I still found it hard
to learn. I felt as if my head was in an air bubble and I was very tired.
When I was nearly 11 years old the teachers had a meeting with my Dad. They suggested
that I go to a secondary school because I had learning difficulties and they said
it would be in my best interest. I remember my last day at the convent so
well. I cried my eyes out.
Then my real troubles began. I will never forget my first day at the new school,
the kids watching with a hard look on their faces, nudging and laughing at me as
I spoke because I was quite well-spoken with an impediment in my speech caused by
my illness. Then I found the class I was going to be in. I thought the kids
in my class were as bad as I was and couldn't read or spell properly. I asked
a girl if she could write and spell her own name and address and she said she could,
looking at me as if I was mad. I said I thought she was clever and all the
girls in the class heard what I said and laughed at me. I felt so hurt I just
wanted to go home to my Mum.
The teacher sat me down with a girl who smelt of urine and picked her nose and rubbed
it on her cardigan sleeve. Ever since that day I was bullied and hit.
There was one girl in the class who was very backward with a mental age of five.
Some girls made her hit me and she was much bigger than I was, even though I was
tall.
One day my Dad came to pick me up from school. He saw a lot of girls had formed
a circle and were shouting excitedly. When he intervened, he saw it was me
fighting with that girl, much to his surprise. This was a nightmare.
It was like that every day till I left. Originally, I was leaving in July
but I had to leave in May. The teacher left the class for a few minutes.
The whole class turned on me, hitting and calling me names. I managed to get
away and ran from the school and all the way home, seven miles away.
My Dad was a lecturer at a college. He got me on a hairdressing course which I failed
because I couldn't read or write properly, but I was much happier there than at
school. I went to drama school where I acted in a lot of plays. I met
my first husband there when I was 16 and married when I was 19. We split up
when I was 21. I then had quite a few boyfriends.
My Dad died when I was 28 and I was devastated. My best friend was gone.
Two years later I met my second husband who was 17 years older than I. I had
two children by him and we divorced four years later, leaving me to bring up two
children on my own. I had very good support from my Mum and brother but it
was so hard, bringing them up on my own.
I've been divorced for seven years now. I taught myself to read and write
over the years but I still have slowness in my hands which causes me to write slowly.
The speech impediment is still there but I am going to college studying computers
and have been working as a dinner lady at the kids' school for three years.
I feel at last that my life is going somewhere.
Rebecca's Story
Until December 1996 Rebecca was a loveable, ordinary young girl with moderate learning
difficulties. On Christmas Eve, she was jumpy but we put it down to excitement
although she had never been like it before. I remarked to my son-in-law
that if I did not know better I would think she was on speed. She did not
sleep properly and kept talking. I thought she was talking in her sleep, but in
retrospect, I wonder if she had actually slept at all.
Rebecca enjoyed Christmas Day but was a bit excitable. I gave her some Calpol before
she went to bed and I thought she had slept. We spent Boxing Day with friends.
When we returned home Rebecca went to get ready for bed, but when I went up to say
goodnight I found she had not started to get undressed. I realised later that
she did not know what to do. During the night, I heard her talking to herself.
She went to the bathroom where she stayed for a long time. I went to investigate
and found she had wet her bed, something she had not done since she was five years
old. I got her back into bed but I heard her talking to herself again.
Finally, realising something was very wrong, I fetched her into my bed where she
spent the rest of the night, talking all the time but not making sense.
The next day we took Rebecca to see our doctor and he sent her straight into hospital.
She was given various tests – lumbar puncture, brain scan, EEG and blood tests.
Her doctor, Dr Green, diagnosed herpes simplex encephalitis.
Rebecca was given two drugs intravenously, one of which was acyclovir. She
did not sleep until two days later – 60 hours awake, possibly more. She
was talking all the time but everything was jumbled. She was very anxious
all the time and had trouble getting in and out of bed.
By the New Year Rebecca had started to improve. She left hospital on January
3 and continued her drugs at home. We kept her very quiet. For three
weeks or so things seemed to be going along quite well until suddenly, Rebecca couldn't
remember how to operate the video. The following day she was very confused
and when I came home from work I found she had put her bra and pants on the wrong
way. I took her straight to hospital. We saw a doctor who did not know
of Rebecca's illness, and as we had an appointment to see Dr Green a couple of days
later, he sent her home again. When we saw Dr Green he kept Rebecca in hospital
for the weekend.
During the following year, Rebecca suffered panic attacks and could not go into
crowded places, even if she had been looking forward to going. She found the
school bus difficult and sometimes I had to drive her to school. She suffered
mood swings, depression, loss of co-ordination and concentration. After four months,
her teacher was so concerned about her inability to concentrate that he called in
an educational psychologist who issued a report. Nothing was done about getting
any extra support for her. A year later she seemed to be getting brighter,
smiling more and she started singing to her music again.
Rebecca saw Dr Green approximately every six months and was finally discharged 18
months later. Dr Green never told us what the repercussions of this illness
could be or what could happen in the future. The school doctor told us that
she could have been left physically disabled and have epilepsy so we should look
on the positive side. We were never told that epilepsy could happen over two
years later.
Rebecca's behaviour started to change in the summer of 1998. She became obsessed
with a boy called Mark who she had met at the beach. Her appetite deteriorated
and by Christmas she had lost half a stone. By March 1999 she had lost a further
ten pounds, putting her weight at less than eight stone. She seemed unable
to enjoy her food any more and she had always had a healthy appetite. She
seemed to have trouble swallowing and would feel full up when she had only had a
small amount of food.
Sunday – three days before the first convulsion, Rebecca could not sleep and
felt sick during the evening. She went to school on Monday and her behaviour
deteriorated. She was really unco-operative. Her whole body was shaking,
she became aggressive and she kept talking to herself. By this time she was
looking very unwell, her face had no colour and her eyes looked sunk in with dark
rings around them. Her temperature was normal, she did not have a sore throat
or cold and we could find no reason for her feeling and looking unwell. On
Tuesday evening she still could not sleep and I took her into my bed where she slept
for a couple of hours. We made an appointment for her to see our doctor and,
while Rebecca and her father were waiting in the surgery she had her first convulsion.
Rebecca was taken to William Harvey Hospital and her doctor this time was Dr Williams.
She had various tests, including a brain scan and lumbar puncture. During
the next few days she was holding her hands in a peculiar way, her fingers tight
together, her thumb and wrists bent. She also had trouble holding her bladder.
On the second evening in hospital she was sick all evening. She had headaches
from the time of entering the hospital, no appetite and could not comprehend letters
of the alphabet. She kept making gulping sounds and had a nervous cough.
She said the same thing over and over again. He speech did not always make sense,
she had difficulty in understanding easy instructions and became aggressive when
we had to keep repeating them. She did not sleep for the first few nights.
All Dr Williams said when he discharged her from hospital was that she would need
psychiatric help. The only drugs prescribed were for Rebecca's headaches.
When I said I thought the dramatic change in Rebecca was caused by the convulsion,
Dr Williams seemed to think this was very unlikely.
Things gradually went downhill from then on. On returning to school after
the convulsion, her teacher told us she could not do things that she would have
found easy to do only days before. Her handwriting became enormous when previously
it was small and neat. She would spend hours in her bedroom on her computer
writing letters to herself and then she would tell us they came from her boyfriend.
Rebecca became very aggressive and violent, both at home and at school. She
was not affectionate anymore. She was prescribed carbamazapine to try to calm
her down. The doctor was so concerned about the change in Rebecca that she
arranged for us to take her to see Professor Taylor at the Maudsley Hospital in
London. Professor Taylor and Dr Alexandra Lewis explained that what had been
happening to Rebecca was all due to encephalitis.
Although it helped us enormously to understand what had been going on, things got
worse. When we were out shopping with Rebecca, she would go up to total strangers
and start talking to them. After a while we were unable to go out with her.
She would shout at us for no reason and would not co-operate in any way. We
just could not reason with her. At school things were very bad. Rebecca
would not sit down in class and kept wandering about the classroom. She could
not concentrate and someone had to be with her all the time in case she lost her
temper. She hit out at her classroom assistant who she liked very much.
Her language was awful and she was constantly swearing. Rebecca had never
been known to be violent at any time, even when she was cross and she had never
used bad language. When she came out of hospital she started constantly rubbing
the right side of her face, next to her right eye, and biting her nails until there
were hardly any nails left.
The doctor changed Rebecca's medication to Tegretol Retard as her whole body was
stiff. When she held your hand she could only grip it really tightly and her
whole body shook at various times. Soon after this she had another convulsion,
this time at school. She was unconscious for three minutes. After a
couple of days she had another small convulsion.
A couple of months later, Rebecca tried to jump out of a moving car. We had
told her we could not go swimming in the sea as it was too cold. After this,
we decided the only thing we could do for her own safety was to take her straight
to hospital.
Rebecca was admitted to William Harvey Hospital who arranged for her to be transferred
to Ticehurst House Hospital. She stayed there for three months. When
she was due for discharge the doctor told us that things had been a lot more severe
for Rebecca due to her having learning difficulties before the illness. Epilepsy
had caused further memory loss.
For the first two months in hospital, improvement was very slow but in the last
month there was great progress. Rebecca became calmer and her weekends at
home were fine. She was still unable to work the video and had great trouble with
ordinary things like getting dressed and putting her shoes on. She had also
forgotten how to spell her name.
Since leaving hospital there has been no aggressive behaviour or any bad language.
We can reason with her again and she has not lost her temper since she came home.
The gulping sound she was making has stopped but she still has a nervous cough and
sometimes she stammers. But she is back to being her old affectionate self.
Duane's Story
I am 22 years old, father of four-year-old Duane. My son became violently ill with
herpes encephalitis in January 1994 when he was 18 months old. When the doctor came
he told us not to worry, gave a prescription for him and told us he would be fine
in a few days.
Early the next morning, Sarah, my partner woke me because she thought Duane was
trying to be sick. I put the light on to discover that Duane was in fact having
a fit. I told Sarah to watch him while I rang for an ambulance. Duane
spent some time in hospital and, as a result of the encephalitis my little boy has
left temporal lobe brain damage.
Duane seemed to have made a complete recovery until just after his second birthday
but since then he has gradually got worse. He now has epilepsy and autism and has
also lost his speech and all understanding. He has been on many medications
for epilepsy, all of which have failed to control his fits.
My reaction was to drink heavily which led to the breakdown of my relationship with
Duane's Mum. I continued to drink until I ended up in a fight which has landed
me in prison with a three-year sentence.
I now feel I have let my son down and I am ashamed of myself. Prison has opened
my eyes and I realise what I should be doing with my life. I love Duane with
all my heart and want to become a better person for him. I'm struggling to
come to terms with what has happened to my son but I am now prepared to face my
problem head- on. My ex-girlfriend, Sarah, put me in contact with the Encephalitis
Society for which I am very grateful.
Stuart's Story
I am 19 years old and I have a little boy called Duane who is now three. We
live in a normal house with Duane's father and lived normal lives until January
1994. Duane was just 18 months old when he woke up very poorly. We phoned
the doctor who told us not to worry, it was a virus and Duane would be all right
in a few days.
In the early hours of the morning Duane started fitting. I was terrified.
We took him straight to the hospital where we were told he'd had a febrile convulsion.
An hour later he had another fit and was sent for a lumbar puncture as the doctors
suspected meningitis.
I was terrified and nearly crazy with worry. Everyone has heard about meningitis
and what it can do. I thought I was going to lose my boy. Later that
day meningitis was ruled out and Duane was sent for a CAT scan. The results told
us Duane had encephalitis. I had never heard of it so thought it wasn't anything
serious. Little did I know that this was only just the beginning of an ongoing
nightmare. Duane survived. He could hear, see, walk and talk and we thought
he had fully recovered but a brain scan showed damage to the temporal lobe and to
other parts of the brain.
Just after Duane's second birthday we noticed he was staring into space a lot, his
head was flopping forward and his eyes were rolling. It took us over six weeks
to get anyone in the medical profession to recognise that there was a problem.
Some doctors laughed and said children pick up strange habits. One doctor
made me feel paranoid, as though I was wasting his time. When Duane's
funny turns started lasting longer and were coming more often we demanded that he
should be admitted into hospital. An EEG showed he had epilepsy. We
were amazed that the doctors hadn't realised this sooner, especially as he had had
encephalitis, and that we had been fobbed off for so long.
Our heads were spinning with unanswered questions so I read books and became an
expert on encephalitis and epilepsy. I found out that, because of the brain damage,
Duane's fits would be very difficult to control. One year later, after having
Epilim, carbamazepine, vigabatrin, lamotrigine, phenytoin and ethosuximide, all
in different strengths and mixtures, Duane still has at least three fits daily which
are now stronger and longer. Not only have we had to deal with this alone
but since November 1994 Duane has also gradually lost his speech. From being
able to hold a conversation with us, he can now only say about three words and he
doesn't understand what we say. He is very clumsy, uncooperative, has difficult
behaviour and temper tantrums. In the last year the little boy we once knew
is lost and has been replaced with a changed child. We love him to bits but he needs
round-the-clock care, love and attention.
We found the British Epilepsy Association (BEA) in the Thompson Directory and they
told us about Dr Livingstone at Leeds who specialises in epilepsy. He gave
me some Encephalitis Society leaflets and put me in touch with you. I am very
angry that I was never told about the BEA or the support group and was not referred
to a specialist by Duane's consultant.
Dr Livingstone answers all our questions in a straightforward way and does not lie
to us and give us false hope. We have now found that Duane has lost his speech
due to the scarring on his left temporal lobe, the part of the brain that operates
speech and understanding. He has speech therapy and is due to be assessed
for special needs education as he will be of nursery school age in six months' time.
We don't know what the future holds but knowing that we are not going through this
alone is a great help.
Nikky's Story
My daughter Nikky was born perfectly healthy on 21 April 1995. She developed
croup at the age of eight months while cutting her first tooth. She was admitted
to hospital and discharged two days later.
On Christmas Day she had trouble breathing and her lips turned blue. We took her
straight back to hospital where she was put on oxygen. Within two days she
would not feed. One of her lungs collapsed and she was put on a ventilator,
tube fed and transferred to the intensive care unit where she spent two weeks on
a ventilator and a further two weeks in hospital.
As she did not respond in any way, mentally or physically, she was tested for meningitis
which proved negative. After further tests we were told she had suffered viral
encephalitis. The doctors said only time would tell the extent of her disabilities.
Before the illness Nikki was walking around the furniture and saying Mum and Nan,
but when she was allowed home she was like a newborn baby and we had to start to
feed her and teach her all over again. I was lucky to have the support of
a loving family. Without it I would never have coped.
When Nikky was 20 months old I had my second daughter. Nikky adored her.
Ten months later Nikky walked unaided but kept falling over. She had to be helped
up as her motor control was not working properly and her arms and legs were not
strong enough. She had regular physiotherapy.
When Nikki was four she went to nursery and still had to crawl to a table to pick
herself up. Progress from then on was slow. Every time she had croup she was
re-admitted to hospital for checks. Now, at the age of ten she is having occupational
therapy to improve her gross and fine motor skills. She copes in a mainstream
school with the teacher's support and joins in all physical lessons, but at her
own pace. In the last six months Nikki has achieved an award for progress
in her class and, having starting swimming lessons a year ago, she has just got
her certificate for swimming five metres.
I take one day at a time with Nikki. I am very proud of her and have a positive
attitude towards her progress. She is going to be a bridesmaid at her cousin's
wedding soon. She is very happy but worried in case she falls over going down
the aisle but, because all my family understand, it will not be a problem on the
day.
Nikki has just become aware of her differences and it has been very upsetting for
me to cope with as she feels it's her fault and doesn't like being different to
other children. I keep telling her she is special and, although she doesn't
fully understand, I feel it helps.
Sarah's Story
When Sarah was 16 she was ill for a week with a throat infection. She had just started
college, learning to be a nursery nanny. The week after this I noticed she was very
emotional and became vague. One morning, she decided to stay at home and lay
on the settee. At about 10am she needed to go to the toilet, but as she stood up
she stepped forward on her left foot and fell over. My boyfriend, Chris picked her
up, thinking she was mucking about, but Sarah again stepped forward on her left
foot and this time she fell into the fireplace. We did not know what had happened.
The doctor came and immediately called an ambulance.
At first the doctors were unsure what Sarah's illness was so they gave her
a scan on her heart. The next day they thought she had had a stroke and almost immediately
started physiotherapy. She had lost nearly all the use of her left side. Then they
decided to give her a lumbar puncture as they were worried she had meningitis but
luckily she had no extra white cells. After a CAT scan and ECT the doctors informed
us that Sarah had a form of encephalitis. The consultant took us into a room and
told us that he was unsure of what was going on and didn't know whether Sarah would
get better. It was a very worrying time for us.
During the days leading up to Christmas 1994, Sarah's illness became worse. She
started staring and banging the bed with her feet and hands and pulling her hair
out. This was a terrible nightmare for me. No one had any idea what was going on.
The day before Christmas Eve they decided to do a brain biopsy and warned us of
the seriousness of the operation. The diagnosis was de-myelination of the brain.
They gave Sarah strong steroids and this seemed to do the trick. By now she
had lost all use of her left side and had to be helped in and out of bed, bath and
wheelchair with special hospital equipment.
Sarah got a little better but was confined to bed most days. She had visits from
speech therapists, physiotherapists and occupational therapists, all trying to get
her motivated again. She was having difficulty with speech and her left side was
useless.
In the middle of January Sarah's condition worsened. Her brain was being attacked
again. They gave her stronger steroids and it was very worrying again but the steroids
did the trick. In late January Sarah began to show more signs of awareness.
The physiotherapy was working very well and she was also eating a little bit every
day.
In early February we saw Sarah try to walk again and it was absolutely brilliant
to see the courage of this girl now coming to her 17th birthday. She steadily improved,
and although she was mainly in a wheelchair, her speech and walking were getting
better. Sarah eventually came home in late March 1995 and made a brave effort to
overcome this terrible illness. She carried on going back to the hospital for physiotherapy,
etc as the weakness on her left side was still a worry. We were still very much
in the dark about encephalitis.
In October 1995, while Sarah was on the road to recovery, she had a massive fit.
Back in hospital, she was told she had epilepsy and her left side became very weak
again. Chris and I were shell-shocked that this poor girl who had fought and fought
through her original illness now had another battle. After finding the right medication
she was home again and had to have more physiotherapy.
Today this 18-year-old girl is battling on. Chris and I were very unsure of Sarah's
future until we joined the Encephalitis Society. After reading some of the letters
in the newsletter we are aware that there are people just like Sarah. If there are
people who have been through what Sarah has, or a couple like myself and Chris who
have been to hell and back, we would love to hear from them.
Isn't encephalitis a terrible illness.
Mrs Tapes' Story
I am 32 now but in 1973, at the age of 11 I caught chicken pox from my younger brother
and subsequently developed encephalitis. Until I was ill I was bright, loved
school and had no problems academically.
My parents took me to two other doctors before the third who diagnosed my illness.
My mother thought I had died because I was so cold. I was not admitted to
hospital but had two visits to an outpatients' department. I was told to touch my
nose with my finger and they said I would be fine.
It took time to recover from my illness which left me tired all the time. It was
three months before I was allowed to return to school where a bed was made available
as I found it hard to stay alert for long. My illness left me with a personality
change, from being bright and happy to not being able to keep up and not wanting
to go to school. The only good thing to come out of this was my ability to
read very fast. Half the time my teachers could not believe I had finished the books.
I now have four children of my own and my main fear was that they might catch chicken
pox. I watched them very carefully.
This is the first time I have ever written about my illness to anyone. As
there was nobody to support my parents through my illness, I hope this letter is
of some use to others. I finally know what encephalitis is and hope other
children struck down with it have as good a chance of pulling through as I did.
Emma's Story
My daughter, Emma had encephalitis in 1984 and was treated at Great Ormond Street
Hospital. After very acute care during her stay there and then at our local
hospital for three months altogether, Emma came home, still quite poorly and extremely
dependent.
Emma's post-encephalitic recovery was quite slow with intensive physiotherapy while
still in hospital and speech therapy after discharge. Her long-term recovery
has been good, in my opinion. She has no speech at all, is physically able
but suffers mild co-ordination difficulties. Her academic achievements have
been average to just below, which I feel is a lot less than she would have gained.
My daughter's recovery, which I am very proud of, is beyond all medical expectations.
Initially Emma was only given a 30 per cent chance of living. Then it was thought
she would be severely physically impaired. The facial area was the first and
worst affected area. Apart from having no speech, Emma has no lip closure
or tongue movements and barely any gag reflex, all of which makes eating quite difficult
but she manages solid foods well. She has blink reflex but cannot close her
eyes.
Emma was almost four years old when she had encephalitis. She began her education
in a speech and language unit, moving to our local, mainstream junior school with
an augmentative communication aid after a lot of fuss with our local educational
authority. She has maintained an average ability, gaining her GCSEs
last summer and is now in the sixth form doing a GNVQ in business studies.
Her ultimate ambition is to work with animals
When Emma had encephalitis in 1984 there was very little information or support
available. Just knowing my daughter is not alone, as I once believed, is a
relief although I am aware that everyone seems to recover with vastly varying degrees
of disability.
I am very interested in the information available in your new education pack.
Even after 13 years I still feel very bewildered and confused at times. When
Emma was discharged after such acute care in hospital, I felt extremely isolated.
I wondered at times if anyone would ever really understand the trauma of what had
happened and what would happen during recovery. Now I wonder if anything else could
occur. Well, time will tell.
At the moment Emma leads as normal a life as possible. She has a Saturday
job at our local Sainsbury store. She goes swimming regularly with her friends and
is quite independent. I would like to offer support by letting people know
that although your life goes through great adjustments there is light at the end
of the tunnel. Yes, lives change and I'm sure many people have had to adjust more
radically than we have, but you can cope day to day by concentrating on the present,
not dwelling in the past.
Sue's Story
I had encephalitis when I was 11 years old. I recovered with memory loss being
the only noticeable residual after-effect. I missed several months of school
but my schoolmates brought me work to study at home. When I finally returned
to school I was still quite spaced out and had a tendency to stare through people.
The kids and teachers all tried to be friendly but I didn't know or remember any
of them and it didn't seem to matter much to me. I was in sixth grade.
I kept up with my studies by focusing all my energies on them. I didn't realise
then that I didn't have the ability to focus on more than one thing at a time so
I pretty much tuned out everything else in my life. The only way I could focus
on my studies was to be left alone in a quiet environment. I did know that
I was highly sensitive to bright lights, noises, sudden movements and touch, but
people would think I was whining if I told them how the things they did bothered
me. What I didn't know was that I also had scotopic sensitivity which made
understanding the words I read a very tedious task. It took me a long time
to learn. I found I couldn't learn while I was in school so I spent a lot
of time daydreaming. I had no idea it was the florescent lights that made
me fidgety, irritable and highly distracted when I sat for long without some kind
of physical break.
I was quite a celebrity because I had survived my encephalitis but I gradually lost
the 'friends' who had initially sought me out when I returned. They claimed
I didn't talk to them. I didn't realise that I had trouble in processing what
people said as well as in filtering other sounds so that I could stay focused on
what they were saying. This made socialising very difficult for me.
They claimed that I didn't even wave to them in the playground but I wasn't aware
that my vision had changed and I couldn't see properly. I didn't remember
what it was like to see properly and would just squint to pass the vision tests.
I told you I was spaced out!
I gradually came out of my fog by eighth grade, (at least I have more consistent
memories of that and future years), but the hidden disabilities that no one (including
myself) realised I had, remained. What is sad is that I missed experiencing
my adolescent years. I was compensating as well as I could for something I
didn't know I had. People expected me to be like other adolescents of my age
and I wasn't. I couldn't.
I chose a career as an occupational therapist because it gave me the chance to learn
more about the brain and how it works. I very much wanted to figure out why
mine didn't seem to work like others. I now work in a school system with lots
of students who have some of these hidden disabilities. I have learned, and
am teaching my students to understand, that the reason these disabilities are hidden
is that other, higher functioning areas of the brain take over for those areas that
have not developed or are damaged. I realise now that I am using the thinking
(intellectual) area of my brain to do what others do using the automatic (subconscious)
area of their brain. We both accomplish the same thing except they do it easily,
without thinking. I have to think my way through most tasks which requires
more energy and time. Unfortunately, because I am able to accomplish the same
as everyone else, others think I function as they do. They don't understand
how hard I am working to do what they do and why sometimes I just can't keep up
and don't even try some of the things they do so easily.
I am successful in my career and have been happily married for 30 years. I
know I am a little different to other people and need to do things in a slightly
different way, but I am quite happy with who I am. I also feel good about
how resourceful I was in getting where I am today, especially considering how little
support there was available when I was growing up and needed it. I wish you
the best in your endeavours to find the person you are, so that you can respond
to those who insist that you be who you are not.
David's Story
On 26 April 1998 my husband, Paul, myself and our two sons, David (aged six) and
James (three) were sitting watching a video. David had been ill for the previous
five days with a high temperature and sickness. The doctor had been out to see him
twice and just said his glands were swollen.
David suddenly rolled off the sofa and on to the floor. We thought he was
messing about when we suddenly realised he was having a seizure. He went blue
and was thrashing his arms and legs about.
It seemed forever until the ambulance arrived. He was rushed to the local hospital
where he had to be resuscitated. Eventually he was put on a ventilator and
we were told he must go to the Queen's Medical Centre in Nottingham. During
the five days he was in intensive care he had numerous seizures. He had a
lumbar puncture, EEG, CAT scan and MRI. He was then returned to our local
hospital in Mansfield. No diagnosis had been made at this stage.
His condition worsened. He was having many seizures which were difficult to
control. He was hallucinating and looked so very, very ill. He was sent
back to Queen's Medical Centre where, ten days after his first seizure, the doctors
diagnosed encephalitis. We were informed that he had been given acyclovir
from the fourth day and this would have helped to prevent any further damage to
his brain. We were very lucky that he had survived.
David was in hospital for five weeks and it was a very difficult time. He
was having three to four seizures a week. His behaviour was dreadful as was his
language. He had frontal lobe damage.
Before he was ill, David was an extremely bright, intelligent, lively little boy.
I was taking home a little monster. In the last two years David has tried
nearly every anti- convulsant but they have a terrible effect on his behaviour.
He has at least one seizure a week now as his anti-convulsants are still not right.
He no longer goes to school. Although he is still bright his behaviour is
uncontrollable at times, and even with a full-time classroom support teacher the
school could not handle him. He is now on his fourth home tutor. The
others found him too difficult. He lacks social skills, can be aggressive at times
and does not know how to behave appropriately in certain situations. But he
can be so loving when he's having a good day.
It has been a long, hard trek and it still is. We are so uncertain of the
future. Will David ever go to school again, where is the right school, is
there a right school? I do not want to lock him away but at times there seems
to be no one who really knows what is best.
I still sometimes want my other David back. When I see other eight-year-old
boys playing and enjoying being together and having their freedom, then I shed my
tears, knowing that my David cannot be the same.
At the moment we are waiting for David to have a neuro-psychological assessment
and I am going to see another neurologist so he can put everything into perspective
for me. My husband no longer works. He stays at home with David and
I know that he has very difficult days at times.
I hope and pray that my son will show signs improvement and that someday he will
have his life back.
Susan's Story
I was five and had been at school only a few weeks when we went to visit my grandmother
in Streatham one weekend. I felt strange and couldn't sleep a wink for two
days. Then, one afternoon Dad peered closely at my face and said he thought
I had measles. We all rushed home and I was put to bed. I remember the
doctor coming twice a week to examine my chest, the pink penicillin he gave me and
the orange squash, which was all I could take.
Everything became more distant, rather as it happens in a bad case of flu, but it
carried on getting distant until I found myself on a bright path leading gently
away from the life I'd known. All around me was dark except the path.
The process was not unpleasant and I was quite calm. Eventually I came to
a fork in the path. One path led further away much more sharply but the other led
gently back to the life I'd known. I knew as I stood there that the choice
was mine and I also knew that I could never go back on my decision. It was
curiosity that made me take the path to life for I had hardly seen any. Had
I known then what it would be like I might have thought twice.
I was off school for a long time. I was desperately weak and always had some infection
or other. There were other problems I didn't understand and they terrified
me. Some mornings when I woke up I couldn't move at all, not even my eyes.
It felt as if I went through all the right moves but nothing happened. I felt
trapped and isolated and for a five year old it was terrifying. I do not remember
anyone ever asking me how I felt so it never occurred to me to tell anyone.
The incidents grew less frequent with time, and though I suppose they never lasted
very long it always seemed a lifetime to me. The last time it happened was
two or three years after the illness when I tried to turn to talk to a friend and
found I couldn't. Another problem happened sometimes when I smiled and only
the right side of my face responded. At the moment when I consciously realised
this, the other side caught up. This was sporadic and lasted five or six years.
Other minor problems (usually visual or co-ordination) took longer to sort out but
they did ease with time, though to this day I avoid ball games!
My return to school, however, brought one little visual difficulty to the fore.
I was miles behind the others at reading and writing. We were taught to write
our names first and the most common letter in my name is 'u' but my 'u's' came out
upside down and back to front as 'n's'. Well my teacher smacked me hard in
front of the whole class. My family have teased me mercilessly for years about
it, but since I thought what I wrote was identical to the card I was copying I could
do nothing to help myself. My other blind spot was drawing. Whenever I drew
people they lacked arms. One picture I drew so alarmed my Mum she took it
back and asked the teacher about it. This lasted for two to three years.
Everything that happened in the three years after the illness seemed distant to
me, as if it were happening to someone else. I went through life in a daze,
unable to react to anything. Shortly after I returned to school they held
a sports day. I could not take part as it had all been arranged when I was
ill, but the school still insisted I sat in a field all day with the rest of my
class, dressed only in vest and knickers. It was a cold spring day and
I sat there feeling more and more cold and ill. Naturally I became very ill
again and Mum was livid, but that made little impression on the school. They
said they could not make any exception for one child, an attitude which I
hope has now changed. Being cold reduces me to tears to this day.
Another effect of the illness was floating. I could remember floating down
the stairs quite frequently and this puzzled me greatly. I can remember standing
at the top of the stairs at the age of eight trying to work out how I used to do
it. It was not like a dream as it was too vivid. This used to happen
frequently. Fortunately I never felt inclined to try it as I was sure there
was a knack to it that I had forgotten! I also suffered from a persistent
nightmare concerning paper aeroplanes.
I noted the term "bad behaviour" in your newsletter. Well, I suffered
from most of the things listed, but the most embarrassing thing was a tendency to
wet my knickers. This led to me being disowned by most of my classmates for
the rest of my schooling but I did have a few good friends.
The doctors lost my notes when I was ten and afterwards treated me as if I had been
found under a gooseberry bush at that age. My depression as an adult was treated
with more and more powerful drugs and I was regarded as neurotic. My memory
was like a jigsaw puzzle, difficult to piece together. The drugs either had
no effect or made me worse. One of the drugs was caffeine based and eventually
I gave up caffeine. Too much of it still makes me ill today.
I know now that it was my Mum who refused to let the doctor take me to hospital.
At that time she would not have been able to stay with me and she had already lost
one baby in hospital.
My remaining physical problems are extremely minor and I can overcome them easily.
I have obtained a degree and a PhD in genetics and biochemistry to try and prove
to myself that I am as good as others. However, the emotional scars have
never healed. I live alone because I cannot trust other people, something
I learned very young and have not been able to overcome no matter how hard I try.
Pam's Story
I write to tell everyone that I had encephalitis very badly when I was five and
was in hospital for a very long time. The doctors told my Mum that if I did
pull through I would be a vegetable and no good to anyone. They said that
the best thing she could do was have me admitted to a mental hospital. My
Mum was made of sterner stuff and never gave up on me.
In time I went to a normal school. I have worked in shops, factories, with
the council and helped out at spastic youth clubs. I write letters to pen-pals
and can do everything for myself. I just hope other mums whose children have
had encephalitis don't give up on them. Doctors do not know everything!
Sarah's Story
I am the step-father of Sarah who was 17 years old when she had the first signs
of the illness. Sarah had a virus at first with headaches and weakness.
In the second week she attempted to get up from the settee where she was lying,
but as she put her left foot forward she fell over. I helped her up and told
her to get herself moving. Then she put her left side forward. This
time she fell into the fireplace. My girlfriend
and I were astonished at what had happened. We called a doctor and Sarah was
taken straight into hospital.
The first month was distressing because the doctors were unsure of the diagnosis.
I became very worried and wanted to do more to help Sarah. I was looking up
books and attending a class at the hospital to see if there was more I could do.
Sarah had a brain biopsy which confirmed she had encephalitis. I would sit
and watch her have many bad attacks, pulling her hair and banging many times all
over the bed. At times I had to walk away and cry. It was only the marvellous
guidance and help of the nurses that got me through. They would sit with me
and talk about Sarah.
I had a good job, but I had to take at least two months off work. They were
very good to me. The management would always ring to ask questions about Sarah's
health. It was very hard to return to work. I was always aware there could
be a phone call from the hospital. During the three months Sarah was there I became
so worried that she would not make it that I often prayed at night. I must say I
have never believed in God but it did help, and of course it worked as Sarah got
better.
I had been with Sarah and her Mum, Brenda, for 11 years so I was well and truly
involved, so much so that I felt like her Dad. At times it was very emotional
for me. Brenda and I spent many evenings together, talking and looking at
books. It made our relationship very strong and we were able to build up strength
for the weeks and months ahead, looking after Sarah.
I think it is a terrible thing that, while at work you argue over pay and conditions
and you feel so wonderful that you have a job, but there are always people worse
off than you. It really hit me while Sarah was in hospital when I saw so many
young children suffering. It made me really think of how lucky some people
are and we should not forget those parents and children who are suffering today.
Two years on Sarah has improved. Her Mum continues to look after her and I am continuing
with my work.
For My Special Boy
Tears of laughter,
Tears of joy,
Shed many a tear
For my special boy,
A child so different,
More loved than any other,
In a world of no names
his curious eyes,
A long time ago I stopped asking why.
An infectious laugh and his funny little ways,
A simple thing
Can make his mother's day,
So innocent is he,
Never done wrong,
Grasping little fingers
Need a hand to help him along.
Now the tears are drying
For a little boy so lost,
For my little boy
From the one who loves you the most.
Amanda's Story
My husband recently suffered with ADEM and was extremely ill. His diagnosis was
all the symptoms mentioned plus he also had a rash all over his body, my doctor
sent him to hospital with suspected viral meningitis but the hospital said that he
didn't have it, they kept him in for observations but never put him on any antibiotics,he
had a CT scan which was normal he also had a lumber puncture which showed high protein
but they thought that this was an error in the lab and discharged him, when i asked
about the rash the doctors reply was maybe a reaction to tablets and when i explained
that he had not had any tablets she then said maybe reaction to migraine, he came
home on Friday and by Monday couldn't remember Saturday or Sunday , i took him back
to hospital where they then diagnosed meningo encephalitis and put him on antibiotics
and an anti viral drug, they gave him another CT scan and again it was normal, he
started to get worse after that and the delusions became more severe, he eventually
had a MRI scan which showed lesions on the brain in the white matter and another
lumber puncture which again showed high protein, we were told the different treatments
he would have to have but thankfully the steroids that were given to him did the
trick. He was also given haliperidol but he had a bad reaction to it and couldn't
control his body.
Against all odds my husband fought this disease and has a made a full recovery and
is now back to his old self.