A three-year old boy has suffered brain damage and recurring seizures since a one in a-million incurable condition. Doctors believe that tonsilitis caused the condition.

During a May phone appointment, Reggie Johnson, a Harwich, Essex GP, diagnosed the common throat infection in Reggie Johnson.

After suffering a seizure, he was rushed to the hospital.

Reggie, who was healthy, was diagnosed as having febrile infection-related seizures syndrome (FIRES). This rare type of epilepsy causes him to experience back-toback seizures for 24 hours.

Although it is not clear what causes it, experts believe inflammation from minor infection triggers it. It is extremely rare, only one in a million children are affected.

John Johnson, Reggie’s father, was 35. He said that his son went from an active and happy child to becoming unable to talk in just a few short weeks.

The three year-old now lives in a hospital room at home with his father, and mother Natalie, 37.

Reggie, a three-year-old from Essex, was diagnosed with tonsillitis in May after a telephone appointment with his doctor. After recovering from the illness, he had a seizure a few weeks later while on a family holiday

After a phone appointment with his doctor, Reggie, a three year-old boy from Essex was diagnosed with tonsillitis. After recovering from the illness, Reggie suffered a seizure while on holiday with his family.

Reggie spent the next eight weeks in hospital, including three weeks in intensive care, where he suffered from constant fits. Two months later, expert medics diagnosed him with FIRES, which can cause children to have recurring seizures that last for more than 24 hours

Reggie spent the next 8 weeks in hospital. He also spent three weeks in intensive medical care. Reggie suffered from frequent fits for the rest of his life. Two months later, experts diagnosed Reggie with FIRES. This is a condition that can cause children to experience recurring seizures lasting more than 24 hours.

Reggie was discharged from hospital in August. He lives in a hospital bed in his living room at the family three-bed home, where his parents look after him

Reggie was discharged in August from the hospital. He is now able to live in his hospital bed in the living room of his three-bed family home. His parents care for him.

After a telephone consultation with his doctor, Reggie was later diagnosed with tonsillitis.

His father noticed the white pus-filled spots on his son’s throat. The doctor prescribed antibiotics for five days.

Reggie was back to normal a week later. He went on a family holiday at a local caravan site on June 4.

He became sick while on trampolines and funfair rides the next day. His parents put him back in the caravan to fall asleep, but he woke and had a seizure.

His parents immediately called an ambulance to rush him to Colchester Hospital. His father stated that Reggie had suffered a massive seizure’.

What is febrile infection-related epilepsy? 

Children with febrile infection-related epilepsy syndrome, (FIRES), can have back-to-back seizures lasting up to 24 hours.

One in a Million children are affected by the condition. It is usually between two and eighteen years old. The condition usually develops from a minor infection in an otherwise healthy child.

Most sufferers will be diagnosed with a developmental disability, and their seizures usually begin 24 hours to 2 weeks after the illness has begun.

Barbiturates and benzodiazepines are two of the drugs used to treat the condition.

Doctors may also recommend a ketogenic (high-fat, adequate protein, and low carbohydrate) diet or cannabidiol for seizures.

Source: Epilepsy Foundation

Before transferring Reggie, doctors did a CT scan. Johnson stated that they could not find the cause.

He said, “They did the scan and it was clear.” “What the heck is going on?” we asked.

Reggie spent the next eighteen weeks in hospital, three weeks in intensive and suffered from constant fits.

According to his father, the three-year old went into an epileptic condition and would shake ‘uncontrollably” in his bed for upto three days.

Mr Johson stated that it was quite bizarre. The doctors couldn’t figure out what was happening.

Two months later, experts diagnosed him with FIRES. This is a condition that can cause children to have recurring seizures lasting longer than 24 hours.

Reggie was discharged in August from the hospital.

He lives in a hospital room in his living area at the three-bed family home where his parents care for him. 

He is unable communicate and takes 12 different medications in 20 different doses daily to manage his painful spasms. Reggie has been admitted to hospital twice because of his severe seizures. 

His father said that he was a three-year old who was “absolutely normal” before he was struck down with the debilitating condition. 

Mr Johnson stated that Reggie was an advanced child for his age, walking and running at 10 month old and moving up one year in nursery. But now Reggie is a ‘totally new child’.

He said, “If he stands and says his name, he will not even acknowledge me.” He is in his own world.

“Our lives have been completely transformed by tonsillitis. It’s a common childhood illness that can cause tonsillitis. There is no cure for this condition, and he will live with it for the rest of his life.

Mr Johson said: “It’s so terrible for Reggie. We are unable to take him anywhere. We have to give him medication to help him sleep.

“Me and Natalie share a bed on the sofa together – we can’t leave him alone.

“We live this 24 hours. We wake up, deal with the day, then go to bed and deal tomorrow. It can be very hard to bear, but we try our best to remain positive.

“We have found something that gives us strength, that he is alive and he is breathing.”