The 3-year-old boy remained brain-damaged after the diagnosis of “tonsillitis” changed to a one-millionth catastrophic incurable condition.
John Johnson, 35, said his son, Reggie, 3, was unable to communicate with his happy child in a few weeks.
The young man was diagnosed with tonsillitis by telephone GP appointment within two weeks before his health deteriorated tragically.
Reggie had a sudden seizure in June while on vacation with her family and was taken to the hospital. There he suffered from constant seizures and spent three weeks in the intensive care unit.
Two months later he was diagnosed with a very rare condition called FIRES. This causes the child to have a series of seizures that can last for more than 24 hours.
Reggie currently lives in her hospital bed and has to take 13 medications daily to get rid of his intolerable seizures.
John, who takes care of Reggie 24 hours a day with his wife Natalie, said:
“Reggie was a perfectly normal 3-year-old. Now he has a brain injury and is out of communication.
“When I stand and say his name, he doesn’t even admit me. He’s in his own world.
“Our life has changed completely, and it all started with tonsillitis-from a cold that any child can get.
“In the long run, there is no answer. This is his life.”
Doctors believe that Reggie has a one-millionth condition called febrile seizure-related epilepsy syndrome (FIRES). This causes the child to have a series of seizures that can last for more than 24 hours.
The exact cause of the symptoms is unknown, but it is believed to be associated with overwhelming inflammation from mild infections.
John said: “Reggie was just a normal three years old. He has been walking and running for ten months.
“He actually moved to a nursery class.
“And suddenly he caught a cold and had tonsillitis.
“I checked his throat and saw the white cat’s behind his throat.”
John called his local doctor, advised Reggie that he had tonsillitis, and prescribed a five-day course of antibiotics.
A week later, Reggie returned to her usual self as her family spent a vacation at a local caravan site on June 4th and played at a trade fair.
“Reggie was fine on Wednesday. He returned to his normal self.
“Reggie wasn’t with the fairies. I’ve never seen anything like this in my life.
An ambulance rushed Reggie to Colchester Hospital, where he had a “massive seizure.”
Doctors performed a CT scan before transferring to Addenbrooke’s Hospital in Cambridge for an MRI scan, but couldn’t figure out what went wrong.
John said: “They did a scan and said it was obvious.
“We were like’what’s happening here’.”
Reggie continued to have seizures in the hospital and was transferred to the intensive care unit, where she spent three weeks.
John said: “For three weeks he got worse and had epilepsy.
“He was trembling uncontrollably in bed. It was so strange. The doctor didn’t know what was happening to him.”
A panel of doctors gathered to discuss Reggie’s illness, but still couldn’t find a definitive answer, except that it could be a fire.
After Reggie was removed from the life support system, he improved slightly and was able to walk again.
He was discharged with FIRES on the discharge form in August, but still can’t speak.
John and Natalie take care of Reggie in a three-bed semi-detached home where their sons Kay (17) and Lexi (5) also live.
Since then, Reggie has suffered more seizures and has returned him to the hospital.
John said: “It’s terrible for Reggie. I can’t take him anywhere right now. I have to take him some medicine to fall asleep.
“His hospital bed is in the front room. We take turns sleeping with him on the couch. We can’t leave him at all.
“We have lived this 24 hours. We wake up and process the day, then sleep and process tomorrow.
“It kills you inside. We both do our best to stay positive.
“But we now find something that empowers us. He is alive and breathing.
Visit for more stories from where you live InYourArea
Three boys, brain injured after a cold turned into tonsillitis
Source link Three boys, brain injured after a cold turned into tonsillitis