Encephalitis Cases
Dean
United Kingdom
Posted: July 4, 2000
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Encephalitis Cases
Dean
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It still feels as though it was an oppressive nightmare when this
happened. Our son Dean had his sixth birthday January (1999)
whereupon he and a friend had a joint party where they invited
the whole of their class, plus other friends making a total
of 40 children.
The first case of chickenpox arose the very next day so we were
aware that it was going around and indeed his friend who had
shared his party came down with it a few weeks later.
It was mid-February and Dean was on half term and was going
to his Nanny's to stay for a couple of days . The following
morning she rang to say that Dean had stomach pains, having
heard that you can get pains from chickenpox we asked her to
check him for this. She then rang back and said that she thought
he had two spots behind the ear. By that afternoon she rang
to say that she was bringing him home and that we should ring
the Doctor because he was doubled up in pain. On arrival back
home he was doubled up and could hardly walk.
We took him to the Doctor, he thought the spots were chickenpox
but he said he wasn't aware that stomach pains could be part
of it. The Doctor advised us to take Dean to the local District
General Hospital. They sent us home confirming chickenpox. That
night, we were up all night with Dean crying out in pain, he
had a very high temperature and was also being sick. We called
out the on-call Doctor, who seemed concerned and told us to
take him straight back to the Hospital. By now the spots were
coming out rapidly and he was covered from head to toe. He was
still crying out in pain. In Hospital, Dean underwent tests
and scans etc. The Hospital said that they couldn't find anything
adverse apart from an enlarged spleen. After two days with him
crying out "its killing me", we were told by a nurse that they
thought he was putting it on because once they gave him an enema
he quietened down. Well you would if you fell asleep. So Dean
was discharged home, still unable to walk, we actually had to
take him out in a wheelchair to the car.
The following day the spots began to look very sore and very
black, he was covered in spots and also appeared to have them
in his mouth and around the eyes. His grandparents came to visit
him and they were shocked to see how ill he was. After they
had left he asked me if he was dying and I told him that it
was only chickenpox and that he would soon be better.
The following day we were still concerned about Dean and asked
if the Health Visitor could come and see him. She took one look
at him and said that she would get the Doctor to come and see
him because she didn't like his colour and the look of the spots.
Half an hour after she had left his temperature soured to 104°,
we tried to give him something to bring down the temperature.
He firmly shut his mouth and then started to jibber and then
suddenly went into a fit. The only experience of fitting that
we have had before was with our daughter, Stacey who had suffered
on two occasions with febrile convulsions. We therefore assumed
that this was what Dean was having. We immediately telephoned
the Ambulance Service, who arrived very swiftly, although to
us it seemed like an eternity. They immediately took him away
in the ambulance. Upon arrival at the Hospital, I went straight
to the A&E Department, whereupon I was showed in to a side room.
My husband, who had travelled with Dean in the ambulance, walked
towards me and said that one of the Doctors had informed him
that it was unlikely that Dean was going to make it as he had
suffered a cardiac arrest on arrival at the Hospital. Well as
you can imagine our world fell apart and time just stood still.
After about three minutes, which seemed like an hour, someone
walked into the room and said that they had managed to stabilise
Dean and that he had been taken to the Intensive Care Unit.
We were taken up to the Intensive Care Unit, at that point the
word "meningitis" was mentioned but this was very shortly dismissed.
We were taken in to see him and it was a shock to see him lying
there with all the wires and tubes he looked so small and frail.
He hadn't eaten for days and he had lost an awful lot of weight,
weight that he really could not afford to loose as he had always
been very skinny. We were then advised that a retrieval team
from Guy's Hospital in London were coming down to collect him
take him back to their Paediatric Intensive Care Unit. They
arrived and we had to make our own way from our home on the
South Coast to London by train. One of the worst journeys we
have ever had to make.
We arrived at the Paediatric Intensive Care Unit at Guys before
the retrieval team and the Hospital had not heard from them,
but we both still sensed that Dean was still with us. Dean arrived
approximately half an hour later. He was put in a side room
because he of his chickenpox, he was highly infectious to the
other very ill children within the Unit. The nurses there were
absolutely magnificent in both caring for Dean and looking after
us. On his arrival they did a brain scan and we were advised
that the brain was not swollen which we understood to be very
good. The following day Dean underwent a lumbar puncture. We
also learnt that he had pneumonia on both lungs as well. He
was on the ITU for six days, when he came to he seemed very
confused, very quiet and to a degree I wasn't really sure he
really knew who we were. He started to hallucinate. We were
advised that this was the medication but it was very frightening
from a parents prospective.
After four days we were transferred back to our local Hospital.
We were not keen to return to the Hospital but we wanted to
be nearer home so that we could see our family, especially our
little girl who was unable to come with us to Guys. She had
been staying with her nanny and she had also contracted chickenpox
whilst we were up in London.
Two days later Dean was allowed home. Just before leaving the
Hospital I asked him to write his name on a piece of paper,
all he could do with the pencil was jab it on the paper, he
didn't remember how to write. Although the night before he had
read a book with me as consistently as he had before his illness.
He couldn't remember the alphabet or simple sums, but he could
remember the controls for the playstation.
Although whilst at Guys Hospital encephalitis had been mentioned,
they gave the impression that they didn't think it was this
that Dean had experienced. It was only at a follow-up meeting
six weeks after Dean left the Hospital that it was confirmed
that Dean had indeed suffered with encephalitis. We had never
heard of this illness before then.
Dean's ability at School has dropped. He doesn't like writing
because he finds that hard; his math (which he was very good
at) is improving but not quite to the standard he had achieved
before. He seems to have problems, for example with d's and
b's, he finds it difficult to differentiate between them, something
he had mastered beforehand.
It seems almost as if his ability has dropped back a year and
half, his ability fluctuates daily, his concentration wonders
and he does go off into his "own little world". They find at
school he works a lot better with one to one tuition. In the
early months of his recovery we found that if a question was
asked Dean would answer but with the answer to the previous
question. He also used to have a very pained look on his face
when asked a question, as if it really hurt him to think. It
took five weeks after coming out of Hospital for Dean to have
the strength to climb up onto his bed on the top bunk.
The school has been extremely good throughout the period following
his illness. In fact, whilst Dean was in Hospital the whole
school made a get well card with individual messages from every
child in the school. It was very encouraging for us to know
that we had the support back home.
One aspect of change we have noticed is that Dean is a lot more
vocal than he used to be almost as if he has lost his volume
control. We did wonder whether his hearing had been affected
but following tests we understand that it is fine. We were advised
that he may suffer with seizures but to date he hasn't had any
since the day he was rushed to Hospital. Dean seems to be a
lot happier than when he first came out of Hospital, in fact,
the school noticed when he returned following his illness how
quiet and sad he was. Now they see him returning to his happier
and brighter self, laughing and smiling.
We feel that we have won the lottery because he is with us today
when he was nearly taken away.
We would be pleased to hear from anyone who wishes to contact
us.
Linda & Tony United Kingdom Posted: July 4, 2000 |
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