A West Country mother who vowed to fight for her young son after he was diagnosed with a rare disease wants to warn other parents about the symptoms. Paula Jones says her “maternal instinct” told her something was wrong when her son Toby’s bottom lip turned purple.
The ten-year-old was “recovering from a cold” when he noticed the unusual symptom on March 21. When Toby “got worse” Paula became increasingly worried. His face was swollen and he was having trouble breathing. According to Plymouth Live, he also had a high fever.
The 40-year-old mother-of-three took Toby to the GP and he was told to go to Derriford Hospital immediately. There, Toby was diagnosed with a rare condition Stevens-Johnson syndrome. Condition According to the NHS, it initially “manifests itself as a cold or flu”, but is serious and requires urgent hospital treatment.
READ MORE:
Toby was taken to the High Dependency Unit in Derriford and Paula was told that Toby was “deteriorating”. She says she was told doctors “didn’t know” whether Toby would survive.
But Toby, who Paula describes as a fighter, “promised” her that he would get through this and is currently recovering at home after being released from hospital on March 26.
Paula said: “The doctor said if he got worse on the way to Derriford Hospital we should pull over and call 999. It was at that point that I realized how serious the situation was. I went into parental overdrive.
“I arrived at the hospital and within 20 minutes there were several specialists with him. They diagnosed him with Stevens-Johnson syndrome.
“The scary thing is that it starts like the flu or a cold. Then the body goes into overdrive, the immune system attacks the body but in the wrong way. This is a situation that occurs statistically once in a million. But Toby’s is even rarer because it was caused by his own mycoplasma.”
Paula now wants to warn other parents to trust their instincts. Paula said: “I had never heard of Stevens-Johnson syndrome, it is a very rare condition. “For Toby, the skin reaction was caused by his own body.
“We were in the pediatric assessment unit, and he was given oxygen while he was having trouble breathing. He developed ulcers in his throat and mouth; any watery part of the body became ulcerated from this condition.”
In some patients, this “may be due to medications,” Paula said. However, in Toby’s case, his response was caused by an immune response to his own mycoplasm. Mycoplasma is a type of bacteria that can cause infections in the body.
Paula also praised the staff at Derriford Hospital, who were “flawless from start to finish”. She said she “can’t thank them enough for their 24-hour care” of her son and believes “he wouldn’t be here if it weren’t for them.”
He said: “He wanted to go home to watch the Argyle game, he loves football. The hospital consultant said Toby had the ‘most remarkable improvement’ he had ever seen with Stevens-Johnson syndrome.”
Paula added: “I want to raise awareness for other parents; it’s such a rare thing, but if talking about it helps just one more family that would be great.”
What is Stevens-Johnson syndrome?
The following information is taken from the NHS website.
Stevens-Johnson syndrome is a rare but serious skin reaction usually caused by taking certain medications. He needs to be treated in hospital urgently.
Severe Stevens-Johnson syndrome is sometimes called toxic epidermal necrolysis.
Causes of Stevens-Johnson syndrome
Stevens-Johnson syndrome is usually caused by your body reacting to certain medications, especially the following types:
Stevens-Johnson syndrome in children can sometimes be caused by infections such as cold or flu, herpes, and glandular fever.
Who is at higher risk
-
If you have a weakened immune system (for example, due to a disease such as HIV or AIDS or treatments such as chemotherapy)
Symptoms of Stevens-Johnson syndrome
Stevens-Johnson syndrome may begin with flu-like symptoms such as high fever, sore throat, cough, and joint pain. The rash usually begins on the upper body and quickly spreads to other parts of the body, such as the face, arms, legs, and genitals. It is usually not itchy. You may also get blisters and sores:
-
on your lips, mouth and throat – this can make swallowing painful
-
in the tube that carries pee out of your body – this can cause pain when urinating
-
in your eyes – this can cause eye pain, pain when you look at bright lights, and vision problems
-
Call 999 or go to A&E if you or your child:
-
If you have a circular rash that is darker in the middle and lighter on the outside after having an infection or starting a new medication
-
if you have a rash and itching, redness, swelling, blistering, or peeling of the skin
-
snarling
-
tightness in the chest or throat
-
having trouble breathing or speaking
-
if the mouth, face, lips, tongue, or throat is swollen
-
These may be symptoms of a serious reaction such as Stevens-Johnson syndrome and may require urgent hospital treatment.