A mother is at her wits end as doctors refused to hear her advice and treat her five-year-old son for a rare illness which makes his skin shred like a snake – only after GOOGLING his symptoms.
Maxine Burton, 38, said she wants doctors to listen to her and treat her poorly son Ellis Salter – who also suffered a brain injury at birth.
Three months ago Ellis was taken into hospital after a huge rash developed across his body and doctors claimed it was Scarlett Fever – but it was later determined as Kawasaki disease thanks to his mum Maxine.
But once the drugs were administered through a haemoglobin transfusion at Barnsley Hospital Ellis was miraculously a different child.
The change allowed Ellis to return home but after googling Kawasaki’s complex symptoms and realising the infected body needs two lots of transfusions – Maxine panicked and her son ended up back in hospital.
Mum-of-two Maxine says her plight is that doctors now refuse to treat her son with a second dose of the treatment – unless they witness Ellis having a high temperature.
Maxine, who is Ellis’ full-time carer, of Barnsley, South Yorks., said: “Once one round was administered I thought they would do it again – but they didn’t.
“Parents know their children and are always worrying about what things could be – well that is ten fold in my case because of Ellis catalogue of medical problems.
“We’re backwards and forwards to three different hospitals because of his conditions.
“So it’s just so frustrating in situations like this because we know what is going on – but they don’t. Instead they are on the outside looking in.”
The agony started for Ellis when a rash appeared all over his body on May 7 this year.
Initially top medical experts thought the youngster’s rash was scarlett fever and then psoriasis until eight days later when they treated him for Kawasaki.
Ellis, who was seemingly better after a specialised transfusion, was allowed home but the next day his situation worsened and was sent back to hospital.
However docs refused to give him the same haemoglobin transfusion again – and instead gave the family ointments and lotions to cure their son.
Medics say they will only give Ellis similar treatment to before if they see a spike in his temperature – which has been a nightmarish three-month ride for the family including father Simon Salter, 51.
Now Maxine is constantly having to check her son‘s temperature because of his already tender state the results could be terrifying.
Speaking about the three-month saga of treatment, Maxine said: “We’ve been given all these lotions and potions to put on him – but it’s no good for it.
“He desperately needs this second round of medicine to cure Kawasaki because it takes more than one transfusion.
“They disappeared when he has these drugs – and now he’s going back to square one.
“And now every time he has a spike in temperature and I bring him to the hospital his temperature drops by the time we get him here so they can’t administer the drugs.”
The frustrated family are now at their wits end with still no real finishing line in sight.
Speaking about the now fractious relationship between the family because of Ellis’ condition, Maxine said: “Simon and I are honestly holding on by a thread.
“We’ve been a couple now for 17 years – but these last couple of months have really tested and pushed us to the max.
“We shouldn’t have to be here backwards and forwards for three months – it’s just not right.”
Maxine added: “We know our son and know what treatment he needed.”
A spokesperson for Barnsley Hospital said: “We are sorry to hear Ms Burton is unhappy with her son’s experience whilst in our care, we would encourage her to discuss any concerns with her son’s clinical team in the first instance.
“We would advise that Ms Burton contacts our PALS Team on 01226 432330 or email email@example.com and provides details so we can look in to this further.”