Patient stories & news

Read abou toddler Reed Berryman and the pioneering brain surgery he had at Bristol children's hospital. Read in full here. 

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 2 weeks with the all clear. After 6 months we were discharged from paediatric care and given the complete all clear. Charlie was a happy, healthy baby until he was about 2 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 6 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.