Sarcoidosis: Causes, Symptoms, Diagnosis & Treatment
Boy's Face Began To Swell And Lips Turned Purple As Doctors Gave Devastating Diagnosis
Toby, who loves football, is now recovering at home with his family, but his parents want to warn other families about Stevens-Johnson syndrome -Credit:Paula Jones
A West Country mum whose little boy promised her he'd fight after being diagnosed with a rare condition wants to warn other parents of the signs. Paula Jones says her "mother's instinct" told her something was wrong when her son Toby's bottom lip turned purple.
The ten-year-old was "getting over a cold" on March 21 when she noticed the unusual symptom. Paula began to become increasingly worried when Toby "got worse". His face was swollen and he was struggling to breathe. He also had a high temperature, reports Plymouth Live.
The 40-year-old mum-of-three took Toby to the GP and was told to go to Derriford Hospital immediately. There, Toby was diagnosed with rare condition Stevens-Johnson syndrome. The condition "presents itself as a cold or flu" at first, but is serious and needs immediate hospital treatment, according to the NHS.
READ MORE:
Toby was taken to the High Dependency Unit at Derriford and Paula was told Toby was "getting worse". She says she was told that doctors "did not know" if Toby would make it.
But Toby, who Paula describes as a fighter, "promised" her he'd get through it - and he is now recovering at home after coming out of hospital on March 26.
Paula said: "The doctor said if he gets worse on the way to Derriford Hospital, we'd need to pull over and call 999. It was at that point I realised how serious it was. I went into parent overdrive.
10-year-old Toby Jones had a rare reaction and was rushed to hospital on March 21 -Credit:Paula Jones
"I got to the hospital and within 20 minutes he had several specialists with him. They diagnosed him with Stevens-Johnson syndrome.
"The scary thing is, it starts off like the flu or a cold. Then the body goes into overdrive, the immune system is attacking the body, but in the wrong way. It's a one-in-a-million condition - statistically. But Toby's is even more rare because it was his own mycoplasma that caused it"
Story continues
Paula now wants to warn other parents to trust their instincts. Paula said: "I'd never heard of the condition Stevens-Johnson syndrome, it's so rare. For Toby, it was his own body causing the skin reaction.
"We were in the children's assessment unit, he was given oxygen as he was struggling to breathe. He came out in ulcerations, in his throat, mouth - any watery part of the body ulcerates with the condition."
Paula said the condition can be "caused by medicines" in some patients. But in Toby's case, his reaction was caused by an immune response to his own mycoplasma. Mycoplasma is a genus of bacteria that can cause infections in the body.
Paula also praised the staff at Derriford Hospital, who were "faultless from beginning to end". She said she can't "thank them enough for their round-the-clock care" of her son and believes he "wouldn't be here without them".
She said: "He wanted to get home to watch the Argyle game, he loves football. The hospital consultant said Toby's was the 'most remarkable recovery' from Stevens-Johnson syndrome that he'd ever seen."
Paula added: "I want to raise awareness for other parents - it is such a rare thing, but if speaking about it helps just one other family, that would be amazing."
What is Stevens-Johnson syndrome?The following information has been taken from the NHS website here
Stevens-Johnson syndrome is a rare but serious skin reaction that's usually caused by taking certain medicines. It needs to be treated immediately in hospital.
Severe Stevens-Johnson syndrome is sometimes called toxic epidermal necrolysis.
Causes of Stevens-Johnson syndromeStevens-Johnson syndrome is often caused by your body reacting to certain medicines, particularly some types of:
In children, Stevens-Johnson syndrome can sometimes be caused by infections like cold or flu, cold sores and glandular fever.
Who is at higher riskyou have a weakened immune system – for example, from having a condition like HIV or AIDS, or treatments like chemotherapy
Stevens-Johnson syndrome can start with flu-like symptoms, such as a high temperature, sore throat, cough and joint pain. The rash usually starts on the upper body before quickly spreading to the face, arms, legs and other areas of the body, such as the genitals. It's not usually itchy. You can also get blisters and sores:
on your lips and in your mouth and throat – this can make swallowing painful
in the tube that carries pee out of your body – this can cause pain when peeing
on your eyes – this can cause eye pain, pain when looking at bright lights and problems with your sight
Call 999 or go to A&E if you or your child:
has a circular rash that's darker in the middle and lighter around the outside after having an infection or starting a new medicine
has a rash and the skin is itchy, red, swollen, blistered or peeling
is wheezing
has tightness in the chest or throat
is having trouble breathing or talking
has a swollen mouth, face, lips, tongue or throat
These may be signs of a serious reaction like Stevens-Johnson syndrome and may need immediate treatment in hospital.
Horner Syndrome
Horner syndrome is a rare condition that causes problems with your face and eye on one side of your body. It's also called Horner-Bernard syndrome or oculosympathetic palsy.
If the pupils of your eyes are of different sizes (anisocoria), it could be a sign of Horner syndrome. (Photo Credit: Waster/Wikipedia)
The condition is neurological, meaning it's linked to your body's nervous system. Certain nerves related to involuntary body functions (like how your eye's pupils dilate or constrict) are affected.
You can get Horner syndrome at any age. In rare cases -- about 1 in 6,250 births -- a baby will be born with it.
A key sign of Horner syndrome is when the following symptoms affect just one side of your face:
You may have additional symptoms depending on the cause of your condition.
Horner syndrome alone isn't life-threatening, but it can be a sign of a serious health condition. See your doctor if you notice any of its symptoms.
Symptoms of Horner syndrome in children
Children who get Horner syndrome also can have:
Horner syndrome happens when a specific group of nerves (called a pathway) is damaged. Pathways are part of your sympathetic nervous system, which controls things such as your heart rate and blood pressure. It also controls your ability to sweat and how your pupils get bigger or smaller in response to light. If you have Horner syndrome, one of three different pathways may be involved:
First order (central)
This pathway involves the nerves that run from the hypothalamus in your brain to your chest, through your brain stem and spinal cord. Conditions that can affect it include:
Second order (preganglionic)
These nerves go from your chest to the top of your lungs and along the carotid artery in your neck. They might be affected by:
Third order (postganglionic)
This path runs from your neck to your middle ear and eye. Things that can affect it include:
In about 35%-40% of cases, doctors aren't sure what exactly causes Horner syndrome. Some researchers think it can be tied to your genes, but no specific genes have been linked to it yet.
Horner syndrome causes in children
Neuroblastoma, a type of cancer, can cause Horner syndrome in some kids. It's called congenital Horner syndrome when a baby is born with it. Only 5% of cases are congenital.
Babies can get Horner syndrome from neck or shoulder injuries during birth. Those born with damage to their aorta, or a lack of development (agenesis) of the carotid artery, can also have it.
In extremely rare cases, mutated genes from one parent can cause a baby to have a congenital form of the condition.
Your regular doctor or an eye doctor (ophthalmologist) can do tests to check for Horner syndrome.
They'll do a physical exam and ask about your medical history to find out if you've had any illness or injury that could have caused nerve damage. Then, they'll put drops in your eyes to see how your pupils react.
Other tests may show a growth, damage, or injury that could cause Horner syndrome. The doctor might order one or more of these imaging tests:
Your doctor also may want to test your blood or urine to check for any health problems that could cause nerve damage.
There aren't any treatments specifically for Horner syndrome. The best way to ease your symptoms is to treat the health problem that caused it.
For example, if you have a tumor or lesion, your doctor might remove it through surgery. You could also have radiation and chemotherapy.
Certain symptoms, such as ptosis, can be corrected with cosmetic surgery or eye drops.
Often, Horner syndrome happens because of another health problem, so there's no way to prevent it.
To avoid getting the condition from an injury, don't take unnecessary risks that could result in an accident.
Nerve damage causes Horner's syndrome, and it can happen at any age. If you have symptoms such as no sweating, a droopy eyelid, or problems with your pupil on one side of your face, you should talk to your doctor. With a diagnosis, you can learn how to manage the condition.
Is Horner syndrome life-threatening?
No, but it can be a sign of another serious health problem, so it's important to talk to your doctor about your symptoms.
How do you fix Horner syndrome?
There is no specific treatment for Horner syndrome. Symptoms usually improve when the condition that is causing it is treated.
Which cranial nerve causes Horner syndrome?
There are three groups of nerves, or pathways, that may be damaged and can cause Horner syndrome. They include:
Plymouth Mum's Warning After Son, Ten, Diagnosed With Rare Condition
10-year-old Toby Jones had a rare reaction and was rushed to hospital on March 21 -Credit:Paula Jones
A Plymouth mum whose little boy promised her he'd fight after being diagnosed with a rare condition wants to warn other parents of the signs.
Paula Jones says her "mother's instinct" told her something was wrong when her son Toby's bottom lip turned purple. The ten-year-old was "getting over a cold" on March 21 when she noticed the unusual symptom.
Paula and her husband Neil began to become increasingly worried when their son "got worse". His face was swollen and he was struggling to breathe. He also had a high temperature.
Read more:
The 40-year-old mum-of-three took Toby to the GP and was told to go to Derriford Hospital immediately. There, Toby was diagnosed with rare condition Stevens-Johnson syndrome. The condition "presents itself as a cold or flu" at first, but is serious and needs immediate hospital treatment, according to the NHS.
Toby was taken to the High Dependency Unit at Derriford and Paula was told Toby was "getting worse". She says she was told that doctors "did not know" if Toby would make it.
But Toby, who Paula describes as a fighter, "promised" her he'd get through it - and he is now recovering at home after coming out of hospital on April 2.
Paula said: "The doctor said if he gets worse on the way to Derriford Hospital, we'd need to pull over and call 999. It was at that point I realised how serious it was. I went into parent overdrive.
"I got to the hospital and within 20 minutes he had several specialists with him. They diagnosed him with Stevens-Johnson syndrome.
"The scary thing is, it starts off like the flu or a cold. Then the body goes into overdrive, the immune system is attacking the body, but in the wrong way. It's a one in a million condition - statistically. But Toby's is even more rare because it was his own mycoplasma that caused it"
Story continues
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Paula now wants to warn other parents to trust their instincts. Paula said: "I'd never heard of the condition Stevens-Johnson syndrome, it's so rare. For Toby, it was his own body causing the skin reaction.
"We were in the children's assessment unit, he was given oxygen as he was struggling to breathe. He came out in ulcerations, in his throat, mouth - any watery part of the body ulcerates with the condition."
Paula said the condition can be "caused by medicines" in some patients. But in Toby's case, his reaction was caused by an immune response to his own mycoplasma. Mycoplasma is a genus of bacteria that can cause infections in the body.
Paula also priased the staff at Derriford Hospital, who were "faultless from beginning to end". She said she can't "thank them enough for their round the clock care" of her son and believes he "wouldn't be here without them".
Toby, who loves football, is now recovering at home with his family, but his parents want to warn other families about Stevens-Johnson syndrome -Credit:Paula Jones
She said: "He wanted to get home to watch the Argyle game, he loves football. The hospital consultant said Toby's was the 'most remarkable recovery' from Stevens-Johnson syndrome that he'd ever seen."
Paula added: "I want to raise awareness for other parents - it is such a rare thing, but if speaking about it helps just one other family, that would be amazing."
What is Stevens-Johnson syndrome?The following information has been taken from the NHS website here
Stevens-Johnson syndrome is a rare but serious skin reaction that's usually caused by taking certain medicines. It needs to be treated immediately in hospital.
Severe Stevens-Johnson syndrome is sometimes called toxic epidermal necrolysis.
Causes of Stevens-Johnson syndromeStevens-Johnson syndrome is often caused by your body reacting to certain medicines, particularly some types of:
In children, Stevens-Johnson syndrome can sometimes be caused by infections like cold or flu, cold sores and glandular fever.
Who is at higher riskyou have a weakened immune system – for example, from having a condition like HIV or AIDS, or treatments like chemotherapy
Stevens-Johnson syndrome can start with flu-like symptoms, such as a high temperature, sore throat, cough and joint pain. The rash usually starts on the upper body before quickly spreading to the face, arms, legs and other areas of the body, such as the genitals. It's not usually itchy. You can also get blisters and sores:
on your lips and in your mouth and throat – this can make swallowing painful
in the tube that carries pee out of your body – this can cause pain when peeing
on your eyes – this can cause eye pain, pain when looking at bright lights and problems with your sight
Call 999 or go to A&E if you or your child:
has a circular rash that's darker in the middle and lighter around the outside after having an infection or starting a new medicine
has a rash and the skin is itchy, red, swollen, blistered or peeling
is wheezing
has tightness in the chest or throat
is having trouble breathing or talking
has a swollen mouth, face, lips, tongue or throat
These may be signs of a serious reaction like Stevens-Johnson syndrome and may need immediate treatment in hospital.
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