Meningitis. The mere mention of this illness is enough to strike fear into the heart of any parent. It is easy to misdiagnose in the early stages and can lead to permanent disability or in the worst case, death if not treated early. Both myself and my husband have survived meningitis (about 20 years apart) relatively unscathed but it is a scary diagnosis. It is even scarier when it doesn’t present in a typical way which makes misdiagnosis more likely. My husband and son (who was 18 months old at the time) were both very poorly in early 2016, one of them had flu and the other had meningitis. I’m sharing our story in the hopes that it may help someone else in the same situation.
In February 2016 my usually fit and well husband became ill very suddenly. He called me at work just after lunchtime on a Tuesday complaining of a severe headache, the worst he could ever imagine. I was instantly concerned as I had never known him to suffer with headaches or migraines in all the time I had known him.
As it was so unusual for him, I told him to go straight to the doctors. He was taking a blood thinning medication to treat DVT (post knee surgery) at the time and my first concern was that he had a bleed on the brain. Little did I know that when he called, he was on his way to the gym and in typical style had decided that a good workout would get rid of the headache.
DB finally made it to the doctors surgery a few hours later after he had returned to work following his gym session and one of his colleagues insisted that he really should get checked out. By this time DB was feeling terrible, he had developed an aversion to light and a high fever so when he got to see the GP he said that he thought he was in a bad way. Now, my husband is not the one to over egg a pudding, he usually plays down how ill he feels rather than hamming it up. Unfortunately, the GP didn’t know this.
There was a lot of flu around at the time and DB was diagnosed with a flu induced migraine. He was prescribed sumatriptan (an anti migraine medication) and advised to take one tablet straight away, go home and get some rest, drink lots of fluids then wait an hour and take a second tablet. At this point if there was no improvement he was advised to contact 111 for further advice.
I think the GP was fairly certain of his diagnosis but was aware that there could be something else at play. In a field full of horses it’s not the zebra we look for.
By the time I got home from work after collecting little Z I was convinced that DB was seriously ill. He was wrapped up in his dressing gown under a duvet with an electric radiator on and was still shivering. He was white as a sheet and didn’t want to talk to me, he just kept saying he was freezing cold and wanted to go to sleep. The light was off but he was still complaining that his eyes hurt.
Having previously had meningitis myself alarm bells were ringing! I made him strip off so I could check him over for any sign of a rash but there was nothing to see. He had taken the second sumatriptan but was getting worse and not better.
DB put up as much protest as he could about ‘not wanting to make a fuss’ and he just wanted to be left alone so he could sleep. I called 999 anyway and an emergency responder was despatched to assess whether or not hubby needed further attention. At this point I was anticipating a ‘blue lights’ trip to A&E so I called my mum and asked her to come and look after Z.
When the emergency responder arrived, he asked DB lots of questions, checked his vital signs and looked for a rash. I got a bit annoyed at DB because he was sitting up and acting like he wasn’t ill at all. As I know him very well I understood that he was trying to get rid of his assessor so he could go back to sleep but it wasn’t helping my cause.
After being thoroughly checked out it looked like there would be no trip to A&E as it still seemed like the symptoms were consistent with flu and a migraine. I dug my heels in and virtually insisted he was taken to hospital to be checked out further. I wasn’t happy with how ill he had been 2 minutes before the emergency responder arrived. A little grudgingly, he was taken to hospital after a small but very polite lecture about wasting hospital time. We were also advised that A&E was full to bursting with people who had flu.
DB was taken to hospital in the emergency vehicle and I arrived shortly after in our car. He was hooked up to an IV drip for fluids and was lying under a thin blanket due to his fever now being 41.5 celsius. He could barely mumble when I asked him a question. After a few hours, blood tests were taken and a CT scan was performed to rule out a bleed on the brain. Following this he was placed on antibiotics to treat sepsis. There was still talk of it likely being flu but they were admitting him as a precaution and everyone was certain that he didn’t have meningitis.
Once a bed became available on the emergency care ward, DB was admitted for an overnight stay and once I knew there was no more I could do I went home to get some sleep. The next 24 hours involved DB lying in a hospital bed in a darkened room because he couldn’t stand even low light, freezing cold despite a fever that wouldn’t come down, on IV antibiotics and dipping in and out of consciousness. He barely remembers any of this time.
On his second day in hospital, DB was moved to a private room on the emergency care ward. Shortly after this, his fever broke and his temperature started to slowly come down. He was able to tolerate a small amount of light and could move around a little bit, albeit slowly although he struggled to watch TV because it made his eyes hurt.
Medical staff had decided to carry out a lumbar puncture to ‘rule out’ meningitis but had to wait 48 hours after the anti-clotting medication had been stopped to prevent a bleed into the spinal column occurring.
On that same morning, Z had developed a slight temperature so I’d given him a dose of (sugarfree) calpol and taken him to nursery as he had no other symptoms and his temperature had responded well to the medication. I advised the nursery staff of what was happening with DB and asked them to contact me if there was any change in Z’s condition during the day.
Lumbar Puncture and another trip to hospital
I returned to DB’s bedside, shortly before he was due to have his lumbar puncture and was delighted to see that he was showing some improvement although he was still far from well.
I stayed with him for the lumbar puncture as, having had one myself, I know that they aren’t the most pleasant experience. Just as the needle went in (after what seemed like 155 attempts!) I got a call from nursery to say that Z had spiked a 40 degree fever and would it be okay to give him some calpol.
Right, okay, now what? I really had no choice. After a brief chat to make sure he didn’t mind me leaving I abandoned DB with a needle in his back and drove the 10 miles home to collect Z before driving another 15 miles to the children’s hospital.
Despite being outwardly calm (as I always seem to be in emergencies, it’s like time goes into slow motion and I go into a calm and practical mental space) I couldn’t help but think that Z must have meningitis. I was concerned for both of my boys.
When I picked Z up from nursery he was not well at all. My normally lively, chatty 100mph boy was snuggled up with one of the lovely meembers of staff looking very sorry for himself and he was red hot to touch. The staff had checked him over and said that they couldn’t see any signs of a rash which offered some reassurance but he was limp, floppy and not very happy at all.
The staff who were taking care of DB had already called ahead at the children’s hospital so they knew we were on our way with an 18 month old child who had suspected meningitis.
When we arrived we only waited a short time in a cubicle before being assessed by a kind and calm emergency care paediatrician who judged that Zander had flu and not meningitis. I was reluctant to take such a quick diagnosis especially given that shortly after arriving I got a message confirming our worst fears.
DB’S lumbar puncture test, much to the surprise of the medical staff was positive for bacterial meningitis. I was so grateful I had trusted my instincts and dialled the emergency services when I did. I cannot go to the place in my mind which asks ‘what if I had let him go to sleep and not checked on him until morning?’ It doesn’t bear thinking about.
Thankfully, my concerns were taken seriously and Z was taken to an observation ward. During the time we were there he didn’t deteriorate any further and his temperature slowly came down to 39 degrees. The medical staff were satisfied that it did indeed look like Z had flu be he also had tonsilitis so we were discharged home around 2am with the proviso that if he got worse we must take him back straight away.
I didn’t get much sleep that night. I took a blanket and a pillow into Zander’s room and grabbed a few hours sleep on his floor. I kept him topped up with paracetemol and ibuprofen to keep his fever under control as much as I could and I offered him fluids whenever he woke up
I can’t think of many circumstances in which I would be grateful for my little boy to have flu but at this point in time it was definitely the much lesser evil. Don’t get me wrong, he was still a poorly little boy with a high fever that was reluctant to come down but the thought of him and my husband having meningitis at the same time was unbearable.
DB spent 5 days in hospital but started to get bored and was desperate to come home. As his temperature was down and he was showing signs of recovery he managed to persuade the medical team to discharge him into my care on the provision that he went in every day for his antibiotics to be administered. I was less than happy with this plan as he was still very ill but he felt that he would recover better at home instead of ‘taking up a bed in the hospital’. I was concerned that he would go on to contract flu by being in contact with Z at home but thankfully that didn’t happen. There is still a question in my mind as to whether or not Zander had early meningitis when he was taken to hospital which the prescribed antibiotics prevented from escalating but that is something we will never know the answer to.
So I became a nurse to both DB and Z as they slowly got better from their respective illnesses. As meningitis is a notifiable disease, the department of health were informed and prophylactic antibiotics were prescribed for myself, my mum and Z.
It was only then that the true magnitude of what had happened hit us both. DB was able to reflect on just how poorly he had been and we talked about how my feisty refusal of his flu diagnosis may have saved his life. It could be that in other circumstances this would not have been the case and he could have gone on to be even more seriously ill than he had been. 10% of bacterial meningitis cases will result in death and a further 25% will have lasting after effects such as loss of sight or hearing or even brain damage.
Isolated cases of bacterial meningitis in adults are rare but do occur and it is important to be vigilant for any signs of the illness. DB had an atypical presentation of the disease as he didn’t have all of the signs and symptoms that are associated with it, but I trusted my instinct which told me he was seriously ill. It is so important to know the signs and symptoms of meningitis but it is also vital to trust your own instinct.
After such a scary time, DB and I decided that we would pay privately for Z to have the meningitis vaccination. He had just missed out on being included in the national programme (which started for babies born after May 2015 whereas he was born August 2014). Despite unclear statistics on the efficacy of the vaccination in older children we decided that any possible protection was better than none. Following both doses of the vaccine, he developed a 40 degree fever for 24 hours which I believe is a good sign that his immune system was effective in developing resistance and therefore a reasonable indication of good protection.
I understand that the vaccination is not a feasible option for all families as it isn’t cheap but having gone through this experience it was money well spent and I would urge anyone who is able to do this for their children to go out and get the vaccine. It may not be 100% effective but I am secure in the knowledge that I have done everything I can to prevent my son from contracting what can be a truly devastating illness.
We were all very lucky …… Don’t wait for a rash to appear!