Today's guest post is by Janette Wright from Devon and it really highlights the importance of raising awareness of the symptoms of Meningitis. For more information about this year's National Meningitis Awareness Week please read this weekend's post and PLEASE nip over to Brother Max (before the end of today, 16th August) to fill in their questionnaire.
At Christmas 1989 I was I was a single mum with 5 year old twins and a younger boy of 3. I clearly remember hearing my local radio station run a story about a little girl who died from meningitis. They said that she had been turned away from casualty and died shortly afterwards. She had a rash and had been misdiagnosed. I was aware of the symptoms of meningitis being aversion to light, stiff neck and raised temperature but the rash aspect was new to me. The news report was logged away in my mind like so many things in life for no apparent reason. That piece of information was to come in handy just a few weeks later.
We now move ahead to February half term. Ben, one of the twins, was ill so I took him to bed with me for his comfort and my “convenience”. He was sick in my bed so we set up camp on the sofa instead. By morning Ben had a stiff neck was being sick. He was pale and pasty and was not liking the bright light. Alarm bells started ringing. I arranged for a doctor to call – this being Saturday morning bear in mind. He looked Ben over and prescribed antibiotics saying “Its a secondary infection to a cold – you know kids he will be up and running about in a couple of days”. Chilling words if you care to read on!
The Doctor left but I am often guided by gut instincts and I was not convinced with his diagnosis. I just knew... Shortly after the doctor left, Ben soiled his pyjamas and I took him to the bathroom to clean him up. I had to struggle to hold him up as the poor boy couldn’t stand unaided. It was then, as I removed his Pjs, that I saw the faint small purple spots! This is the moment that the radio bulletin saved his life.
So on a Saturday morning in the grips of an ambulance strike, I call the surgery – nothing! I call the hospital who, after I say that I have noticed the spots, relent and tell me to bring him in. I called my Mum who sits in the back seat with the kids and holds Ben up as I drive the 9 miles to A&E at Derriford hospital in Plymouth. 9 long miles with my child deteriorating in the back seat. I kept talking to him saying things like “how many fingers am I holding up”, simply trying to keep him from slipping into some sort of sleep.
At the hospital a female doctor pretty much confirms my fears and administers an initial massive dose of penicillin. We are informed that the hospital is not “taking in” so we have to transfer by car and ambulance to a different hospital! There it seems things are taken more seriously. The purple dots by now are much larger and forming like large bruises. They get pens and draw round the outlines to see if the areas increase further. They say that they are pretty sure it is meningitis at this stage but want to perform a lumbar puncture. They explain the procedure to me saying that Ben will need to be curled into a ball and a needle to be inserted into his back and fluid drawn off. He will need to be kept still and tell me it is best if I leave the room as it is a distressing thing for a parent to witness. I left – but should I have stayed?
Ben was pumped full of all sorts of stuff to kill the bug before it killed him! The first 3 nights I slept on a mattress on the floor of the cubicle – my mother had the dubious duty of caring for the other two at my home! Ben's neck was so stiff he lay facing the wall slightly and I tried to gently turn his head towards me so he could see me when I talked to him!
The room was small. There was a bin in the corner and I am not sure if it was because staff were busy – understandably – or they wanted you to take an active role in the care of your child but I was left to undertake things on my own. I am not sure if you have had experience of antibiotics on big scales as would have been administered in this instance? They can cause diarrhoea! Ben was in a disposable nappy; the poo would come out of the nappy, up his back and all over the bedding. The stench was horrendous ,and trying to manoeuvre a 5-year-old child in such a state was hard bearing in mind his body was pretty lifeless. I had to ask the cleaners to empty the bin one day as it was just too much.
On the third night of sleeping in the hospital, the doctors came and told me the 'good news'. “I think we can tell you that his life is out of danger. Had you not got him here when you did I think he would have died in a couple of hours! The septicaemia was doubling every 20 minutes. We will be writing a very strong letter to your doctor”. I guess from that if I was a different sort of person and we were in this litigious age we are in now I would have sued – my hope at the time was it was a big lesson to my GP from which he would learn. So ended my stay at the hospital every and we started a new routine for the next few weeks.
The hospital prescribed antibiotics for all of Ben's close encounters. So that meant me, the two other boys and my mother (despite their persistent but tactful enquiries as to whether or not I had any encounters of my own!) The antibiotics turned our pee red - it was strong stuff.
I remember being told NOT to tell the school. (I think that would have been unheard of now). It was half term and I was informed it would cause panic.
Meningitis is the inflammation of the lining around the brain and spinal cord. Septicaemia is the blood poisoning form of the disease. The purple patches (the rash) are necrosis. It eats away at the skin killing it down all through the layers – it just dies in front of you! The top layer dies and it just cuts away down through the layers eating it all away. The skin on Ben's patches has re-grown but it is of a stretched appearance. Thankfully it was caught in time and I never got as far as loss of limbs. The form of Meningitis that Ben had is the bacterial type and can be treated with antibiotics the viral version is deemed as less of a risk but cannot be treated with antibiotics and can be just as harmful.
Ben spent most of a week confined to his room isolated from the other children on the ward. My other two were brought up with me on my daily visits and would play with the other children on the ward. That first week saw a dramatic decline in his appearance and build. His body weakened and he lost weight. When it was time for him to leave his bed he was light for me to lift and didn’t really have the strength to stand. As the time progressed he was allowed to integrate with the kids and gradually built up his strength again. Most of the time spent over the next 2 and half weeks were filled with dressing changes of his necrotic skin. We seemed to spend our time waiting for a visit from a plastic surgeon to see if he would need surgery to his affected skin areas. Eventually, towards the end of the stay he DID come to visit and gave him the all clear. I was told I could go home and be responsible for his dressings rather than have a different district nurse every day with their own individual and probably conflicting ideas on how to dress them. I was given dressings and paraffin and beeswax and it was finally time to go home.
Ben, I am happy to inform you, got through all this pretty damn well. Meningitis can cause deafness or general hearing loss. He had a hearing check and passed with flying colours. His skin grew back in this odd sort of stretched scar-tissue type of way. The areas affected, whilst they seemed large when he was 5, are now proportionately quite small – even the big patch by his knee which looked almost like a love heart (well it was round Valentine’s Day!) I was told to keep him out of the sun for quite a while after he had the illness. He now enjoys sunbathing and if he has any hearing loss I blame music festivals and mosh pits!
A couple of years later my path crossed that of the mum whose daughter had been mentioned on the local radio shortly before Ben was taken ill. Choking back the tears and trying to maintain my demeanour, I thanked her for going on the radio and telling her tale of losing a daughter. If she hadn’t I would perhaps never have known about the rash symptoms. I know this will never bring back her daughter, It will never ever make things right but by doing what she did, she saved my son. The mother told me that her daughter had died on Christmas Eve aged 4.
So what are the differences between now and then? Information (I would imagine) is shared more freely between health authorities. I do think as a whole parents are far more aware of the symptoms today. Through the internet we can research symptoms quickly and through social media we can discuss things freely. Whilst it is good that there is an increased awareness of the disease, there is a slight tendency to over react. Often I hear parents say, “they have a high temperature, I hope it's not meningitis”. Has our awareness made us paranoid as well as informed? Do we need to strike a finer balance between being aware and being afraid?
At Christmas 1989 I was I was a single mum with 5 year old twins and a younger boy of 3. I clearly remember hearing my local radio station run a story about a little girl who died from meningitis. They said that she had been turned away from casualty and died shortly afterwards. She had a rash and had been misdiagnosed. I was aware of the symptoms of meningitis being aversion to light, stiff neck and raised temperature but the rash aspect was new to me. The news report was logged away in my mind like so many things in life for no apparent reason. That piece of information was to come in handy just a few weeks later.
We now move ahead to February half term. Ben, one of the twins, was ill so I took him to bed with me for his comfort and my “convenience”. He was sick in my bed so we set up camp on the sofa instead. By morning Ben had a stiff neck was being sick. He was pale and pasty and was not liking the bright light. Alarm bells started ringing. I arranged for a doctor to call – this being Saturday morning bear in mind. He looked Ben over and prescribed antibiotics saying “Its a secondary infection to a cold – you know kids he will be up and running about in a couple of days”. Chilling words if you care to read on!
The Doctor left but I am often guided by gut instincts and I was not convinced with his diagnosis. I just knew... Shortly after the doctor left, Ben soiled his pyjamas and I took him to the bathroom to clean him up. I had to struggle to hold him up as the poor boy couldn’t stand unaided. It was then, as I removed his Pjs, that I saw the faint small purple spots! This is the moment that the radio bulletin saved his life.
So on a Saturday morning in the grips of an ambulance strike, I call the surgery – nothing! I call the hospital who, after I say that I have noticed the spots, relent and tell me to bring him in. I called my Mum who sits in the back seat with the kids and holds Ben up as I drive the 9 miles to A&E at Derriford hospital in Plymouth. 9 long miles with my child deteriorating in the back seat. I kept talking to him saying things like “how many fingers am I holding up”, simply trying to keep him from slipping into some sort of sleep.
At the hospital a female doctor pretty much confirms my fears and administers an initial massive dose of penicillin. We are informed that the hospital is not “taking in” so we have to transfer by car and ambulance to a different hospital! There it seems things are taken more seriously. The purple dots by now are much larger and forming like large bruises. They get pens and draw round the outlines to see if the areas increase further. They say that they are pretty sure it is meningitis at this stage but want to perform a lumbar puncture. They explain the procedure to me saying that Ben will need to be curled into a ball and a needle to be inserted into his back and fluid drawn off. He will need to be kept still and tell me it is best if I leave the room as it is a distressing thing for a parent to witness. I left – but should I have stayed?
Ben was pumped full of all sorts of stuff to kill the bug before it killed him! The first 3 nights I slept on a mattress on the floor of the cubicle – my mother had the dubious duty of caring for the other two at my home! Ben's neck was so stiff he lay facing the wall slightly and I tried to gently turn his head towards me so he could see me when I talked to him!
The room was small. There was a bin in the corner and I am not sure if it was because staff were busy – understandably – or they wanted you to take an active role in the care of your child but I was left to undertake things on my own. I am not sure if you have had experience of antibiotics on big scales as would have been administered in this instance? They can cause diarrhoea! Ben was in a disposable nappy; the poo would come out of the nappy, up his back and all over the bedding. The stench was horrendous ,and trying to manoeuvre a 5-year-old child in such a state was hard bearing in mind his body was pretty lifeless. I had to ask the cleaners to empty the bin one day as it was just too much.
On the third night of sleeping in the hospital, the doctors came and told me the 'good news'. “I think we can tell you that his life is out of danger. Had you not got him here when you did I think he would have died in a couple of hours! The septicaemia was doubling every 20 minutes. We will be writing a very strong letter to your doctor”. I guess from that if I was a different sort of person and we were in this litigious age we are in now I would have sued – my hope at the time was it was a big lesson to my GP from which he would learn. So ended my stay at the hospital every and we started a new routine for the next few weeks.
The hospital prescribed antibiotics for all of Ben's close encounters. So that meant me, the two other boys and my mother (despite their persistent but tactful enquiries as to whether or not I had any encounters of my own!) The antibiotics turned our pee red - it was strong stuff.
I remember being told NOT to tell the school. (I think that would have been unheard of now). It was half term and I was informed it would cause panic.
Meningitis is the inflammation of the lining around the brain and spinal cord. Septicaemia is the blood poisoning form of the disease. The purple patches (the rash) are necrosis. It eats away at the skin killing it down all through the layers – it just dies in front of you! The top layer dies and it just cuts away down through the layers eating it all away. The skin on Ben's patches has re-grown but it is of a stretched appearance. Thankfully it was caught in time and I never got as far as loss of limbs. The form of Meningitis that Ben had is the bacterial type and can be treated with antibiotics the viral version is deemed as less of a risk but cannot be treated with antibiotics and can be just as harmful.
Ben spent most of a week confined to his room isolated from the other children on the ward. My other two were brought up with me on my daily visits and would play with the other children on the ward. That first week saw a dramatic decline in his appearance and build. His body weakened and he lost weight. When it was time for him to leave his bed he was light for me to lift and didn’t really have the strength to stand. As the time progressed he was allowed to integrate with the kids and gradually built up his strength again. Most of the time spent over the next 2 and half weeks were filled with dressing changes of his necrotic skin. We seemed to spend our time waiting for a visit from a plastic surgeon to see if he would need surgery to his affected skin areas. Eventually, towards the end of the stay he DID come to visit and gave him the all clear. I was told I could go home and be responsible for his dressings rather than have a different district nurse every day with their own individual and probably conflicting ideas on how to dress them. I was given dressings and paraffin and beeswax and it was finally time to go home.
Ben, I am happy to inform you, got through all this pretty damn well. Meningitis can cause deafness or general hearing loss. He had a hearing check and passed with flying colours. His skin grew back in this odd sort of stretched scar-tissue type of way. The areas affected, whilst they seemed large when he was 5, are now proportionately quite small – even the big patch by his knee which looked almost like a love heart (well it was round Valentine’s Day!) I was told to keep him out of the sun for quite a while after he had the illness. He now enjoys sunbathing and if he has any hearing loss I blame music festivals and mosh pits!
A couple of years later my path crossed that of the mum whose daughter had been mentioned on the local radio shortly before Ben was taken ill. Choking back the tears and trying to maintain my demeanour, I thanked her for going on the radio and telling her tale of losing a daughter. If she hadn’t I would perhaps never have known about the rash symptoms. I know this will never bring back her daughter, It will never ever make things right but by doing what she did, she saved my son. The mother told me that her daughter had died on Christmas Eve aged 4.
So what are the differences between now and then? Information (I would imagine) is shared more freely between health authorities. I do think as a whole parents are far more aware of the symptoms today. Through the internet we can research symptoms quickly and through social media we can discuss things freely. Whilst it is good that there is an increased awareness of the disease, there is a slight tendency to over react. Often I hear parents say, “they have a high temperature, I hope it's not meningitis”. Has our awareness made us paranoid as well as informed? Do we need to strike a finer balance between being aware and being afraid?
