An inquest into the death of a popular and bright 12-year-old boy from Kettering has heard that his epilepsy medication had been stopped less than three months before his death.
Latimer Arts College year seven student Alfie Stone had his first seizure aged just 18-months, and had many similar episodes in the first few years of his life.
But the first day of an inquest into his tragic death which opened in Northampton yesterday (Thursday, December 9), has heard that he had not had a seizure for nearly four years before he died at Kettering General Hospital on December 4, 2019.
The inquest heard written evidence from Alfie's dad Kevin who said that his boy enjoyed school, was doing well academically and was popular.
"He enjoyed cricket, rugby and football," he said.
"He was loving and affectionate toward his family and friends and was very much loved."
The court was told that Alfie, who was born in October 2007, had his first febrile convulsion aged 18-months and then had about ten fits in the next three years of his life, usually caused by high temperatures, then about one a year for the next three years. He then didn't have a seizure until May 2015 and was diagnosed with epilepsy later that year.
He had been placed on a medication caused Epilim to control his illness which had been gradually reduced as he grew.
In September 2019, Alfie had an appointment at Kettering General Hospital to review his progress and, as he had not had a seizure for more than three years and was healthy, his consultant took the decision to take him off his medication.
Although his family expressed some concerns, they were told to stop his medication over the next few weeks.
On December 2, 2019, Alfie had a dental appointment to have two teeth removed and the following day, went to school as normal. When he got home he had strawberries and cream and went to bed at 9.15pm.
The court was told that dad Kevin and mum Lynette heard a noise from Alfie's bedroom at about 9.50pm. Kevin went upstairs to find him fitting and called down to Lynette to phone for an ambulance. After two minutes, Alfie appeared to come round and was able to talk.
Giving evidence, Paramedic Andrew Britton said that when he arrived at 10.01pm Alfie was lying on his bed alert and conscious, but that he had a high temperature and heart rate. While he was preparing paracetamol, Alfie began to seize again and so he took the decision to give him diazepam rectally. Alfie continued to seize but Mr Britton was then able to get an intravenous line into him to administer drugs more quickly.
Attempts were made to give him oxygen via a mask but it proved difficult because of his violent movements.
Mr Britton also phoned emergency medics at KGH to gain consent to administer more drugs.
A second ambulance was called to help transport Alfie down the stairs, which arrived at 10.30pm.
Mr Britton was questioned as to why he hadn't given a recovery drug Buccal Midazolam that was kept at Alfie's house to give to Paramedics in case he had a seizure. Mr Britton said that he had not been told about the drug and since the incident he had received no further training on when to administer it.
He also said that, he had been told Alfie had vomited, he may also have used suction to clear his airway.
Giving evidence, East Midlands Ambulance Service Senior Quality Manager Susan Jevons was asked whether or not she was aware of a recommended action in the serious incident report that first responders should be trained on when to administer Buccal Midazolam in children. She said that she had only been made aware when she had received the court bundle three weeks ago and that she was not aware that the recommendation had been actioned.
On arrival at the hospital, medics at KGH gave him further drugs but were unable to get Alfie's seizures under control and so he was anaesthetised. His family told the inquest they were informed their son needed specialist care but that there were no beds available for him at Oxford, Coventry or Leicester so he remained at KGH overnight.
At 7am his parents went to the family room for some rest and returned to their son's room fifty minutes later.
Dad Kevin's statement said: "It was very chaotic. There were about twenty staff who did not know what to do. They were arguing between themselves. He was bleeding from his mouth which a nurse was trying to stop with her finger."
The family said this went on for several hours and at lunchtime a team from Leicester arrived to transfer Alfie. But as he was being put on to a trolley he went into cardiac arrest. Although staff managed to resuscitate him, a brain scan showed severe, irreversible damage and his life support was removed.
The statement continued: "Alfie's family feel his death was avoidable and they need to understand what went wrong."
Medics said that a CT scan on arrival had shown Alfie's brain was normal but that his condition had deteriorated overnight and his pupils were fixed and dilated at 8am. By 11.10am his condition was described as critical.
Paediatric pathologist Dr Roger Malcolmson, who carried out Alfie's post-mortem examination, said that he had found evidence of organ damage and oedema caused by the cardiac arrest. He recorded a cause of death of brain injury and multiple organ failure caused by epilepsy.
He was asked by Assistant Coroner Jean Harkin whether he had found evidence of aspiration during his examination. He said that he had found particles of food in his lungs but that it was mild and it didn't mean that was the cause of his death.
KGH consultant paediatrician Triloknath Acharya said that Alfie had been seen in clinic by his senior house officer on September 23, 2019, and the decision had been taken for Alfie to come off his medication because he had been seizure-free for three years and six months and that his parents had been gradually weaning him off it.
He said that NICE guidelines did not indicate there should be any further prescription of Buccal Midazolam because there was no need for it once the epilepsy was under control.
The inquest continues.