An all-too-close brush with meningitis…
I like to spend time making sure I know about the subjects I teach, and will often volunteer for CPD and take up opportunities provided by the ambulance service to learn more about the medical conditions we encounter as Community First Responders. But I didn’t ask for immersion into the world of meningitis – although it provides more depth of knowledge and experience when we’re discussing it on first aid courses.
My son Josh, 24, holds pre-hospital qualifications as well as standard first aid certification, so is aware of the signs and symptoms of meningitis as we (his mum and dad) are in our Responder and first aid trainer roles. When he first felt his neck was stiff, he went for a massage, thinking it had been caused by sleeping at a strange angle. But two days later, on Friday evening, he began to feel quite unwell, with an exceptionally painful headache and an increasingly painful and stiff neck. He took himself to the walk-in centre, was sent to A&E and our nightmare couple of weeks began.
After 24hrs in A&E with increasing head and neck pain, nausea, a temperature and now increasingly severe aversion to light, he was moved to the acute medical unit after blood tests, an ECG and a chest x-ray found nothing untoward. After a further 24 hrs of no action but now a pain score of 9.5 out of 10, they ran a CT scan and when that was clear, finally did a lumbar puncture. The results showed a particularly nasty viral strain of meningitis, with symptoms so severe that they decided to administer IV anti-viral medication. We roller-coastered between a bit better, then a rapid decline, before rallying again – barely any food eaten for over a week, vomiting, severe photophobia and no respite from the pain despite IV paracetamol, ibuprofen, oral morphine and codeine. At no point did we feel he was in a life-threatening condition, but it was so painful for him and really awful to watch as a parent.
At times he felt so unwell he couldn’t talk, drink, move his head, get out of bed or walk without significant physical support – only getting up to use the loo.
To add insult to injury, he then acquired a bacterial gastric infection which further weakened his system and slowed his recovery. After 12 days of IV antiviral medication he was finally ready to be discharged and we’re anticipating a fairly lengthy recovery, although he’s already made good progress.
So, what have we learned, or had underlined by this experience?
The Rash
During the entirety of his illness there was no rash. Since I started teaching first aid 10 years ago I have always highlighted that the rash is not a reliable symptom of meningitis. Some strains result in the non-blanching rash that we all learned about yonks ago, but many don’t. Whilst the classic meningitis rash can appear in both viral and bacterial meningitis, it’s primarily a critical hallmark of the bacterial strains. If the rash does appear, it’s often a late-onset symptom and can be a sign of sepsis rather than meningitis. If you suspect meningitis, don’t wait for the rash to confirm your concerns. Get medical help NOW.
Age
We tend to think of meningitis as a condition that affects children, teenagers, uni students etc. Josh is a bit older than this, but I’ve since heard many stories of adults suffering with meningitis. Don’t think it can’t be meningitis because they are ‘too old’.
Advocating in Hospital
Our local hospital did all they could for Josh, and I’m not here to criticise their care. But… they are understaffed and under-resourced, and often we had to chase the next dose of painkillers when they were wearing off, and ask to speak to the nurse if we were concerned as several hours could go by without seeing anyone medical.
Pushing for the next set of tests when days were going past with seemingly no plan in place to get to the root cause to treat the issue. Explaining concerns when Josh was too weak to push for more action or treatment, or ask his own questions. Going to find a nurse when no-one was answering the call-bell. All of these and more – you might be a very important cog in the wheel, so don’t be afraid to ask questions, to ask for better explanations, to explore what the tests are for, or what the results mean, or what courses of action they are considering.
Vaccinations
Meningitis vaccinations are only effective against particular strains – primarily bacterial strains. There isn’t an effective vaccination against the strain that Josh had, so don’t think that just because someone is vaccinated, it can’t be meningitis.
Early Diagnosis
Josh realised his own symptoms were synonymous with meningitis and sought professional medical help. Even with early hospitalisation the severity of the symptoms was awful, so don’t wait. Ask for medical help QUICKLY, and don’t be fobbed off. Lumbar punctures are not pleasant procedures but the pain pales in comparison to the pain from the meningitis.
Being Thankful
It was nasty and I don’t want to relive it for a single moment (and neither does Josh!), but we are so grateful for the NHS and the fact that we have such amazing medical testing, procedures, technology, medication… Sometimes it takes a jolt to realise how lucky we actually are. And how really unimportant some areas of our lives become when it comes to the crunch. The support of family and friends has been immense and we are so very grateful.
The best thing that can come out of this, once Josh recovers fully, is that we raise awareness to ensure other families know the signs and symptoms, know not to place too much importance on the rash as a defining symptom, and suffering is limited or maybe even lives saved as a result.
Make sure you know the signs and symptoms of meningitis, and don’t be afraid to go to A&E with these symptoms:
