Patient story: Charlie. By his Mum, Fiona and Dad,
James.
Charlie's illness all started around 7 months old when he
contracted Meningococcal Meningitis B. He fought for his life,
suffering with febrile seizures that were 3-4 hours long. He
battled hard and he won.
We were discharged from hospital after two weeks with the all
clear. After six months we were discharged from paediatric care and
given the complete all clear. Charlie was a happy, healthy baby
until he was about two years old.
He started suffering multiple daily seizures. We battled long
and hard with doctors to get a diagnosis. At one point being told
it was behaviour issues. Charlie had undergone all the various
tests required, EEG'S, Video EEG's, MRI, CT, ECG. 
It was November 2014 when a wonderful doctor sat down and
reviewed every test that he had ever done and found the scarring on
the left side of his brain - epilepsy was finally diagnosed. We
were relieved, worried, scared all in one hit, we finally could
say, it was epilepsy, it wasn't us seeing things, making things up
- it was real.
It was hard from day to day, Charlie would only go to someone he
knew well (Mum, Daddy, Grandparents) if he was having a seizure.
Someone always had to be with him. We would have to stay at
birthday parties, school discos, and on school trips he would have
to sit with a teacher.
Seizures were a big part of his day to day life. They were
handled very well by the school and we were so grateful to receive
an anti-suffocation pillow from Epilepsy Sucks UK. This gave relief
at night time along with a baby monitor.
Charlie always got a warning when he was going to have a
seizure, he would find a safe place with a person he felt
comfortable with, this did help especially when he was in places
like the swimming pool or the bath.
He had many tests performed at Bristol Children's Hospital. The
longest was six days for a video EEG. We would travel to Bristol a
few times a month.
Charlie had a left temporal Craniotomy and Mesial temporal lobe
resection at Bristol Children's Hospital. Today on 19 October 2015,
Charlie is 13.5 weeks seizure free.
His scar has healed well, all his stitches came out without any
intervention needed - he's even had his first haircut since the
operation. He's gone from 3 or 4 (sometimes more) seizures a day to
nothing.
We sat and had a chat about it the other day. He just turned and
said "Mummy, I don't have any funnies [seizures] anymore." For us
all, it's been life changing. He's become more confident. We
don't have to worry (as much) when he's over tired or poorly -
these were all triggers for seizures. He can sometimes have a late
night without having to worry about the implications the next
day.
Charlie is such a smiley happy boy. He loves anything outdoors,
parks, walks, football and anything with a racket. His favourite is
golf. He wants to be like daddy and become a golfer, he would
happily spend hours at the driving range with daddy and his clubs
hitting balls. He loves to swim, he is a member of the local boys
Brigade troop. He loves spending time with his cousins - 4 boys
together! He loves school, I think we will have a maths whizz on
our hands.
