Doctors told a 12-year-old boy he was ‘exaggerating’ his symptoms and discharged him from hospital – only for him to be paralysed by a rare disease moments later.
His shattered mother is now urging hospitals to do better and run tests for rare conditions when symptoms arise, instead of just brushing them off as too unlikely.
Melbourne boy Maysen, 12, has been diagnosed with Guillain-Barré syndrome (GBS) – a rapidly progressive disease caused by inflammation of the nerves that affects just one or two in every 100,000 people every year.
The condition causes muscle weakness which can lead to complete paralysis and, in some cases, death.
GBS causes excruciating pain through the entire body. Recovery takes at least six to 12 months, with some patients reporting long-term problems.
Maysen’s mum Jessica Bye told Daily Mail Australia she desperately urged doctors to check Maysen for GBS, but was told her son was ‘exaggerating’ his symptoms.
Doctors told 12-year-old Maysen, from Melbourne, he was ‘exaggerating’ his symptoms and discharged him from hospital – only for him to be paralysed by a rare disease moments later
Maysen has been left paralysed from Guillain-Barré syndrome, a rare and rapidly progressive disease caused by inflammation of the nerves
‘Imagine being paralysed but feeling every single ounce of pain throughout your body and then being told that you’re exaggerating,’ Ms Bye said.
The young mother-of-three and stepmum to another three children said she noticed something was not right with her ‘happy-go-lucky’ Maysen when he complained about pain in his body on Monday, July 24.
However, she initially thought her son was experiencing growing pains or muscle aches from a three-kilometre run.
Maysen was given Panadol and had a couple of Epsom Salt baths, but after two days the young boy could not chew his food because of the intense pain in his jaw.
Ms Bye said Maysen’s pain became so excruciating that her ‘really tough kid’ who never complained was in ‘absolute hysterics’ and sobbing while he slept.
A doctor assessed Maysen at their home in Melton, 47km west of Melbourne’s CBD, on Friday, July 28, and suggested he could be dehydrated. They told Ms Bye to take him to the hospital if he did not improve.
The next day, Maysen’s symptoms worsened and he was barely able to stand up or walk.
His mum rushed him to the urgent care department in Melton and was told his symptoms pointed to growing pains and that a blood test would be done to test for anything serious.
‘I did say to them that my son has had growing pains before and this is a lot more excessive than that,’ Ms Bye said.
‘He’s a really tough kid and he’s one of those kids that won’t even take Panadol if he’s got pain. He would prefer to deal with it and it go away and not complain.
‘They said, ‘We’ll do a blood test and see what the blood test shows and then we’ll go from there.’ So they sent us home.’
Maysen collapsed the next day, so his mum rushed him to Bacchus Marsh Hospital, after which he was transferred to Sunshine Hospital in St Albans.
Maysen’s mum Jessica Bye (pictured) suggested doctors check for GBS but was told her son was not in enough pain for it to be the syndrome
Doctors at Sunshine Hospital, in Melbourne’s west, believed Maysen was ‘exaggerating’ his symptoms and discharged him, suggesting the young boy was likely to be suffering from viral myositis, an infection caused after a flu
Ms Bye rushed her son back to the hospital moments after they were discharged, after the entire left side of his body was paralysed
Ms Bye said she was left with a ‘bad taste’ in her mouth after the receptionist at Sunshine Hospital told her to sit in the waiting room until her son was given a bed.
‘The lady at the desk said, ‘Yeah, he’s arrived by ambulance but we’ll take you to him when he’s going to a bed. You just have to sit in the waiting room’,’ Ms Bye claimed.
‘I thought that seems a bit weird. He’s a 12-year-old-child who’s already scared and, you know, stressed about even going in an ambulance. He can barely even walk and you’re not letting his mum go in.
WHAT IS GUILLAIN-BARRÉ SYNDROME?
Guillain-Barré syndrome (GBS) occurs when the body’s immune system attacks its nervous system.
It is a rare and rapidly progressive disease that affects one to two in 100,000 people each year.
Symptoms usually start with a tingling sensation in the leg, which may spread to the arms and upper body.
In severe cases, the person can become paralysed.
The condition can be life-threatening if it affects a person’s breathing, blood pressure or heart rate.
GBS’ cause is unknown, but it usually occurs after a viral infection.
There is no cure, with recovery taking at least six to 12months.
Treatment focuses on restoring the nervous system.
‘I called Mason’s phone and spoke to the paramedics and they sent one of the nurses to get me.’
Ms Bye said the pair waited 45 minutes before Maysen was given a bed and he was not given IV fluids until 11pm that night, despite informing the doctor her son had not eaten or had anything to drink for a few days.
The doctor told Ms Bye her son’s blood work and urine test were normal and that his pain may be caused by viral myositis, an infection caused after a flu.
Ms Bye questioned the doctor, claiming her son had not been sick, and urged them run an MRI scan to test for GBS.
‘I said, ‘What if it’s Guillain-Barré Syndrome or something? Shouldn’t you do an MRI scan just to rule it out?” Ms Bye said.
‘The doctor said no because my son would be in much more pain if it was that. That’s really hard for the doctor to say. There’s a kid screaming in pain.
‘The doctor had not given him any pain relief and they didn’t even attempt to understand what level of pain he was in.’
Ms Bye explained her son was experiencing excruciating pain and had to move his legs off the bed, pull him up and help him shuffle to the toilet like a ‘100-year-old man with a hip replacement’.
Doctors believed Maysen was exaggerating his symptoms so he could skip school or spend time with his mum.
Ms Bye said Maysen would not be exaggerating his symptoms because he had just started dating his primary school crush and was annoyed the hospital stay was causing him to miss school and time with his girlfriend.
She was advised to return to the hospital on Wednesday, August 2, if his symptoms worsened.
‘I repeatedly said that I completely understand there are some people who go over the top with exaggeration in the medical field,’ Ms Bye said.
‘But I told them that I know my child. I know this is not normal and I told them in the nicest way possible that I don’t think what you are saying is right.
‘I feel like it was a cop-out and they didn’t have the time to do what they needed to do. So they thought they could take the next best way.’
As the pair were discharged, with Ms Bye pushing her son in a wheelchair, the mum noticed her son’s face had drooped and informed the nurse.
Ms Bye believed the nurse was informing the doctor of the new symptom but on her return confirmed her son was still being discharged.
Ms Bye said she was five kilometres down the road from the hospital when Maysen started to slur his speech.
Her ‘heart dropped’ when she turned to check on him and saw the entire left side of his body was paralysed.
‘I didn’t know if my son was going to be alive the next day,’ Ms Bye said.
‘I didn’t know if it was a brain tumour or had suffered a major stroke and needed emergency surgery. My heart dropped it was just extremely gut wrenching.’
A GoFundMe page has been set up to help raise funds for Maysen’s recovery. He is expected to spend weeks in the hospital before he is transferred to rehabilitation where he will learn how to walk, talk and function again
Returning to the hospital immediately, Ms Bye, who works in Western Health, contacted the head of triage and the head of pediatrics.
‘When we went back they were absolutely the most attentive hospital. The nurses were just in horror that he’d been sent home in the state,’ Ms Bye said.
‘One nurse sat next to him just patting him on the face and begging him to accept her apology for the fact he was sent home.
‘If we had gone home and waited 36 hours, Maysen’s lungs would have shut down and he would have likely ended up in ICU on a ventilator, if not dead.’
An MRI scan on Tuesday confirmed Maysen had GBS and he was transferred to Royal Children’s Hospital in Melbourne, where he is now receiving treatment.
‘He is currently, for all purposes, paralysed, but can feel the pain throughout his whole body,’ Ms Bye said.
‘He can barely eat. They’re actually considering giving him a feeding tube because he just can’t eat any food. He’s lost eight kilos in two weeks.’
Maysen has a long-road to recovery and will be transferred to rehabilitation once the pain has subsided and will be given extensive rehab to regain the ability to perform basic tasks.
Maysen’s aunt Kaitlin Bye has started a GoFundMe page to help her sister with hospital and rehabilitation costs.
‘He will have a long stay in hospital and extensive rehabilitation to be able to learn how to walk, talk and function again,’ she wrote.
‘We are very lucky most people fully recover from this, but it is a very long and slow process.
‘My sister will miss out on a lot of work and the costs of travel and parking alone is crazy. Please help my sister out with anything you can to just lower the burden of all the extra costs.’
The mother-of-three (pictured) and stepmum to another three children said she will be lodging a formal complaint with the hospital and hopes Maysen’s story raises awareness of the illness and pushes doctors to think twice when treating a patient
Ms Bye said she will be filing a formal complaint with the hospital, even if it has ramifications for her job at Western Health.
‘If my formal complaint does affect my job then that’s just wrong,’ Ms Bye said.
‘You can’t really make implications on a person’s job because they make a complaint that their kid could have died if they weren’t looked after properly.
‘I will be fighting tooth and nail to help our health system. It’s a massive fight, but our community deserves better than what it currently receives and unfortunately this issue goes much higher than our hospitals.
‘I want to walk back in and find the doctor tell them, ‘Guess what? Mason is at the children’s hospital for the next few months with GBS and you didn’t listen to me.”
She hopes Maysen’s story will raise awareness of GBS, help parents be more aware, push for better care, and urge doctors to think twice before discharging a patient.
‘GBS is an hour-by-hour basis at that point. Like, it goes downhill very, very quickly. And the consequences can be dire,’ Ms Bye said.
‘We should be able to trust doctors, and 99 per cent of the time, you can trust a doctor, but they’re under so much pressure from the system that they work in.
‘If I make big enough noise about it then they [doctors and nurses] might think differently the next time a patient presents with symptoms like those Maysen had.’
Sunshine Hospital is a public hospital on Furlong Road in St Albans and is one of three major hospitals in the western suburbs of Melbourne operated by Western Health.
A Western Health spokesperson told Daily Mail that the hospital is aware of the situation and has contacted the family.
‘We acknowledge that this is a difficult time for the patient and his family,’ Western Health said.
‘We are in contact with the family and are committed to thoroughly reviewing this incident to identify any opportunities to improve our care.’
Timeline of Maysen’s symptoms and diagnosis
July 24: Maysen complains about pain in his body
July 26: Maysen has pain in his jaw and cannot chew his food
July 28: He struggles to sit, walk or stand and is in constant pain
A home doctor assesses the 12-year-old and claims he might be dehydrated. Mum is advised to see a doctor if symptoms persist
July 29: Maysen’s symptoms worsen and he is taken to Urgent Care in Melton
A blood test is done, with doctors advising symptoms pointed to growing pains
Maysen collapses in his home’s driveway
July 31: Masen taken to Bacchus Marsh hospital
He is then transferred to Sunshine Hospital
Maysen is discharged at about 3-4pm
He suffers paralysis to the left side of his body and returns to the hospital at around 5pm
August 1: MRI confirms he has GBS
Maysen is transferred to the Royal Children’s Hospital where he has since been receiving treatment
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