Mother’s, doctors’ warning after Brisbane boy’s near-deadly medication reaction

A young Brisbane boy was a matter of hours away from death after a rare reaction to the medication he has taken for years put him in a “zombie” like state, with his mother and doctors issuing a warning to parents.

A Brisbane boy was a matter of hours away from death after a rare reaction to the medication he has taken for years put him in a “zombie” like state.

Lucas Luong, 7, has needed regular blood transfusions since three years old due to his condition – HBE Beta Thalassemia.

A complication of this condition is that Lucas has high levels of iron in his body. To counter this, he takes the medication Jadenu and has for more than three years.

In late February, Lucas started vomiting and had stomach aches. He had gastrointestinal bleeding last year, so fearing it was happening again, his mother rushed him to hospital.

“Over the course of 12 hours, he became delirious and incoherent, you could tell he wasn’t there (mentally), even though he was awake,” Lucas’ mother, Ella Luong, said.

“He was walking up and down the hospital ward moaning and groaning, my kids like to play a zombie apocalypse game and it was like that.”

Ella Luong with her seven-year-old son Lucas. Photo: Liam Kidston.

Queensland Children’s Hospital paediatric ICU doctor Kevin Plumpton, who treated Lucas, said the boy developed jerky movements in this state.

“Lucas had changes in behaviour, delirium and agitation, and was less responsive than normal to people and things around him, altered level of consciousness. He was vomiting, floppy, and his eyes were looking to one side,” Dr Plumpton said.

Doctors sedated, intubated and ventilated Lucas to protect his brain as they worked to find the cause of his deteriorating state. It was found his ammonia levels were through the roof.

“He also needed intravenous infusions of medications to bring the ammonia down. These things needed to be done urgently to treat the high ammonia which can injure brain cells,” Dr Plumpton said.

QCH Director of Haematology & Haemophilia Service Jeremy Robertson said the treating team used a process of elimination to conclude the Jadenu medication was the likely cause.

“There is every possibility that if it had been 6–12 hours longer, Lucas could have died and we would never have got an answer,” Dr Robertson said.

“We concluded the high ammonium was due to the drug due to the fact that we had excluded everything else.

Queensland Children’s Hospital, formerly Lady Cilento Children's Hospital. Photo: Supplied.

“This particular side effect is not listed on the drug information and was not something we were aware of. or monitoring for.

“This is the third reported case we could find in Australia … it just so happened we contacted another specialist who had a similar case, and they were aware of one other case.

“We did also find six or seven other written case reports from across the world in the past 10 years which described similar instances.

“The next stage for us is making a formal report to the company that makes Jadenu (Novartis) so they can put out a safety alert, sometimes other cases come out of the woodwork as a result.”

Lucas’s family has Chinese heritage, part of that is the belief “if you do good things, good things will come in return”.

His mother, Ella, created a fundraiser while he was sedated for five days in hospital. It raised more than $3000 for the Children’s Hospital Foundation.

“After that money was raised, Lucas woke up, so I do believe in good karma,” she said.

Lucas is on the road to recovery and is progressing well with his rehabilitation.

“He doesn’t like going to sleep, he feels like he is suffocating and being held down, perhaps from that period where he was sedated, even though he has no recollection,” his mother said.