I recently attended a meningitis forum with several other bloggers, a GP and the three UK-based Meningitis charities. I was fairly confident that I already knew what I needed to know; I’ve been a parent for nearly 16 years after all, I’ve read the books/mags/newspaper articles, I’ve had the Health Visitor talks, the information sent home from school and I’ve got the ‘signs of meningitis’ card on my noticeboard – albeit buried under discount vouchers and school newsletters.

I was wrong.

Yes, I knew about the glass test having performed it many times on spotty children, I didn’t know that a rash is a late symptom and that you shouldn’t wait for it to appear if you are concerned about your child. I didn’t know that the rash is a sign of septicaemia or that meningitis and septicaemia often occur together. I didn’t know that the rash doesn’t disappear when pressed because it is blood seeping out under the skin.

Yes, I knew there were three types of meningitis but I found I was confused as to which is which. I knew my babies were immunised against one of them but was embarrassed to realise I had no idea which (I was not the only one!). I’m not going to befuddle you with all the information we received, have a look at the websites of the three charities for a more detailed explanation of the disease, but basically:

Viral Meningitis is the most common and less severe type. Almost all patients recover without any permanent damage, although full recovery can take a long time

Fungal Meningitis can cause severe infections but cases are infrequent

Bacterial Meningitis causes severe infections which may lead to severe disability or death

It’s that last one that’s the biggie. It is the one we are given information about. It can be caused by three different types of bacteria but it is Neisseria Meningitidis or meningococcal disease which is the leading cause of bacterial meningitis – I knew that, but I didn’t have any idea how quickly it can take hold, or about the damage it can do to people who survive it. It is this I want you to sit up and take notice of.

If left untreated, bacterial meningitis can prove fatal in up to 90% of cases

Even if it is diagnosed and treated quickly 5 – 10% of patients still die, typically within 24 -48 hours of the onset of symptoms

1 in 7 of those who survive bacterial meningitis are left with a permanent disability such as loss of limbs, blindness, deafness or brain damage

So, now I’ve scared you and myself silly, what do we do? What we do is trust our instincts, we know when our children are unwell, we know when it is something a bit more serious than a sniffle or schoolitis, if you are worried at all trust yourself. Do not wait for the rash, it is a late symptom and may not appear at all. Other symptoms are:

 

Meningitis app

Go to the Meningitis Trust website to see what you should be looking for and download their app for your android or iPhone, it is informative and useful and is just the sort of thing you need when you are panicking in the middle of the night! (The symptoms for babies are slightly different so go and have a look)

I asked the question at the forum ‘why do we hear stories of GPs turning away children with meningitis?’ the answer is that it is difficult to diagnose, the symptoms can look like flu or any other viral infection. What is different is that sufferers get worse very quickly so if a parent is sent away and is still concerned they should go back or go to the hospital or call 999 immediately. It is not time wasting even if it turns out everything is ok. Trust your instincts. Dr Rob the GP who spoke to us said that most GPs will only see 1 0r 2 cases of meningitis (if that) in their career.

I was shocked to hear how many people in the UK are left with severe life long disabilities as a result of bacterial meningitis. The charities support them and fight for support from government beyond the initial medical costs. We watched videos which reduced me to tears and made me determined to help in any way I can.

If you want to help:

  • The Meningitis Trust are the primary provider of professional services and community-based support for people affected by meningitis in the UK – help them by donating to their work and by helping them to spread the word
  • Meningitis UK has a single focus – to find a vaccine to protect against all forms of meningitis and associated diseases – support their ‘Search 4 a Vaccine’ campaign
  • The Meningitis Research Foundation funds research to prevent meningitis and septicaemia, improve survival rates and outcomes.
    They promote education and awareness to reduce death and disability, and give support to people affected – a vaccine for MenB (the biggie) is in development, sign their petition calling on the government to support its introduction into the vaccination programme as soon as it is available and safe.

This information is very timely for me even though my children are now all older than 5. 50% of cases occur in children under 5 and, until I attended the forum, I assumed that it was when they were little I should be particularly vigilant. Meningitis can hit anyone. It is particularly prevalent in infants but also in adolescents (because they start snogging each other), as well as military personnel and others who visit parts of the world where it is very common. As Mum to two teens and a pre teen as well as my Bonus Boy I shall carry on being vigilant and trusting my instincts.

 

 

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