He told me, “No, it’s a non-specific virus,” approximately 5,000 times.
Like many parents, meningitis scares me stupid. In fact, 8 out of 10 UK parents say it’s the infectious disease that scares them most.
Someone asked me this week why that is, when our children are much more likely to be killed by a car.
And I suppose the answer is that I can see the car. I understand the risks, and I know how to mitigate them. I can teach my child to cross the road safely, to not play near roads, to make herself visible in the dark.
With meningitis, though, what can I do?
I was pleased this week to join ten other Tots100 bloggers at a bloggers’ forum in Birmingham to learn more about meningitis. The aim of the event was to explain the facts of meningitis, to demystify the disease a little, and provide accurate, up-to-date information on symptoms, effects and how some forms of the disease can be prevented. Along with bloggers, the event was attended by the UK's three meningitis patient groups, and a GP, Dr Rob Hicks.
The first thing I learned is that it’s okay to be scared.
Meningitis remains the biggest killer of children under 5 in the UK, as far as infectious diseases go. It’s fast – children can go from being perfectly fine to death in just four hours. And it’s hard to spot – many of the symptoms of meningitis can be easily attributed to flu or another common illness.
Untreated, bacterial meningitis kills in 90% of cases. Caught early and treated, 10% of patients will still die, and one in seven will be left with permanent damage, which might include loss of limbs, hearing loss or brain damage.
But I also learned there is a lot of good news. For starters, we know a lot more about meningitis than we used to. That makes it easier for parents and doctors to identify the disease while there’s still a fighting chance of treating it.
What Meningitis Looks Like:
We now know that a rash (caused by blood poisoning) is actually one of the later symptoms of meningitis to occur, and doesn’t occur in all cases. It’s actually a symptom of septicaemia, which often occurs with meningitis – but not in all cases. The message from the experts is don’t wait for the rash.
Early symptoms to look out for are fever (especially if accompanied by cold hands and feet), children being blue around the lips, older children complaining that they can’t stand up (it will feel uncomfortable because of joint stiffness).
Other symptoms that MAY be present include confusion, vomiting, diarrhoea, a stiff neck (where children simply can’t touch their chin to their chest – it’s too painful), sensitivity to light and a headache.
While these symptoms can be associated with many conditions, red flags should be raised if your child starts to develop several of these systems very quickly – the experts at the event told us one of the things that makes meningitis so difficult to treat is how FAST things happen.
Most GPs will only see one or two cases of meningitis in their career, and so they don’t always recognise it immediately. But there’s nothing wrong in asking for a second opinion or returning to a GP surgery three, four or as many times as it takes – you’re your child’s best advocate and if your instincts tell you something is seriously wrong, then you’re probably right.
The other good news is that there are organisations working to support the development of safe, effective vaccines for all forms of meningitis, as well as supporting survivors of the disease and all those affected by it.
There is also hope that a new vaccine will be approved in the near future to provide protection against the ‘B’ strain of meningococcal meningitis – a deadly strain that affects 1,200 people in the UK each year, causing around 120 deaths, half in children under 5.
How You Can Help:
I’m still scared witless of meningitis, truth be told. But I feel a little more confident that I understand what it is – and I hope that the fantastic charities working in this area – Meningitis UK, the Meningitis Research Foundation and the Meningitis Trust – continue in their great work.
If you’d like to know more about meningitis, you can visit any of the charities above for guidance on symptoms, support and research into the disease. You might also want to download this app for Android or iOS that provides a guide to meningitis symptoms, and if you’re a supporter of safe, effective vaccines, then Meningitis Research Foundation asks you to sign this petition to support more funding for research into vaccines.
Disclosure: The Meningitis Bloggers' Forum was organised by Novartis, and I was paid for my time organising and attending the event. All views are my own.