Wednesday, 9 March 2011

Guest Post - Don't Wait For The Rash - Can you spot Meningitis?

This is Nikki's story. We go to toddler group together and over the past year have become friends. Just after Christmas her son contracted Meningitis, this is what happened... 

We had a terrible start to the New Year when Noah, aged nearly 21 months, was rushed to hospital with Meningitis. It was so terrifying and I still find myself thinking about it every day with a pang of anxiety. Fortunately though he has bounced back to full health with remarkable speed.

The day he came home from hospital I made the mistake of googling Meningitis. I regretted it at first because even though he was better, it filled me with panic to realise just how easily it could have been different. But then I found the Meningitis Trust website and I'm glad I did. They are currently running a campaign called Don't Wait for the Rash and I just know I have to try and give something back, as some small way to repay the amazing good fortune that we have received. I honestly feel like it's a big debt that I must clear, in case it comes undone and we lose the luck! Silly I know, but there you go.

I guess usually people start supporting campaigns and groups after the worst has happened. I'm lucky that I can help raise awareness by sending out agood news story instead.

It's really alarming how easily the signs of Meningitis can be missed, or dismissed as something else like flu. In fact, I just read a recent story of a little girl who unfortunately was sent home from the doctors and later passed away within hours. Even getting to the doctors early can't guarantee you get the right help. That's scary because early treatment is generally vital for a positive outcome.

So tell me – Do you know the symptoms of Meningitis? Go on, have a think for a minute....

Of course, you all will have said The Rash. But did you know that it sometimes doesn't come at all, or that it is often one of the last symptoms? Noah's rash didn't properly appear until he was already at hospital in a very serious condition.

So what else?

Some of you may have said stiff neck and aversion to light. Hard things to detect in a young child. I doubt many of you got much past those three things. Don't feel bad though. I didn't know any more than that either. Which makes me extra lucky for still getting to hospital quickly!

Here is the story of what happened with Noah and how he did display symptoms right from the start, that I wasn't even aware of until afterwards. I've highlighted them in red.

He woke up at 10pm on the Monday night crying. I picked him up and he was breathing more rapidly and heavily than normal. I panicked at first and took his temperature immediately. He felt hot to me but the rubbish little forehead thermometer read that it was in normal range so I calmed down a bit (I've since invested in an expensive ear thermometer that gives an accurate reading in 1 second! I want to know for sure next time he's ill!).I decided maybe he'd had a bad dream, it seemed like he was frightened. Then I thought I heard him make a couple of grunting noises and decided maybe he had an upset tummy and was straining. He was very clingy and upset and would not settle back into bed at all.

We were pretty much up all night with him. We brought him into our bed but he wouldn't sleep. By this point I had changed my diagnosis again and thought it must be flu. Then again, on reflection, even when he has been really poorly with upset tummy and colds in the past, he rarely seems that poorly. Even when I know he must be feeling rough, he still carries on playing and at worst might be a bit clingy and grumpy. So in the back of my mind I was thinking it could be something worse. And that's been one of my biggest fears since he was born – something bad being wrong and not acting quickly enough. So I kept checking his temperature with that rubbish strip, which he wouldn't let me hold still for long, but it seemed to keep saying he was ok. I reassured myself that without a temperature it couldn't be anything too serious.

The next day he did eat his breakfast but then went back to just being seriously clingy and upset most of the day. I couldn't put him down for a second. We just sat and cuddled all day. By lunchtime he still hadn't slept. I tried to settle him in his sleeping bag but he wouldn't.

Something you need to know here – when he falls over and hurts himself he says “bosh” whilst touching the injured area, for instance his head. It's his way of telling us he has knocked himself.

As I took him out of his sleeping bag he said 'Bosh' and touched his leg. I asked him if his leg hurt and he said Yes, but I didn't understand why, so to be honest I didn't think much more about it. I now know that stiffness and pain in the legs as well as the neck are symptoms. Bless him – he told me too!

At this point I did also notice a faint rash on his legs. It wasn't what you would think of as a Meningitis rash (dark, purple/red, doesn't fade under pressure). It was just some very faint, brown splotchy patches. Even so, I called the doctors, and they told me to go in at 5pm for the sit and wait clinic.

This was around 1pm. We sat together on the sofa and he finally fell asleep on me, and so did I. We then woke up at 3pm when he vomited all over me. Thank goodness he did otherwise we may have carried on sleeping for another hour, which would have been bad. I was concerned that he immediately fell back to sleep afterwards, despite me moving him around and trying to clean up all the mess. He then went a really horrible pallid colour and even with me talking to him and moving him he was just unable to stay awake. His eyes were literally rolling in his head as he struggled to wake up but couldn't.

I got my mother-in-law round with her car and we drove him straight to the doctors. I must have known it was serious by this point because I remember sitting with him waiting for the car and telling him to 'hold on' and 'stay with me'. Yet at the same time it had never occurred to me that it could be something like Meningitis. You find other, less serious things to fill your mind with. I told myself the colour of his skin was because he had been sick and he couldn't open his eyes because he was just so tired. The thing that still haunts me and terrifies me is that I COULD have listened to that voice in my head and put him into bed thinking he needed to sleep it off. Just an hour later getting to the doctors and our story today would most likely be a tragic one. But I know I should not worry myself with these reflections, because the fact is I DID get him there, I did know it was more serious. (then a different thought creeps in – what if this 'can't wake up' phase had happened during the night and we didn't know until morning? Arghhhh! I must stop thinking of the What Ifs!)

So anyway, the doctor said he wasn't sure what was wrong, but luckily he was concerned enough to call an ambulance. By the time we got to hospital he had deteriorated so quickly. He was so unresponsive and his colour.... oh my goodness, it was awful. He was grey. Oh – and now that we were in the A&E room with an unstable heart rate and a very poorly little man, The Rash finally decided to make an appearance. This time, the 'proper' Meningitis rash that is often the only symptom we can think of for such a serious illness. The doctor immediately said “Meningococcal Septicaemia” and began treating for it. That was it. The words every parent fears. I couldn't believe it.

Noah was transferred to the High Dependency Unit and we spent the worst night ever sitting beside our little man with all the monitors and wires and tubes. Of course, his temperature was too high – I'll never know for sure if it was always high and my forehead thermometer was no good, or maybe it really wasn't high to start with, but I find that hard to believe.

The following day he woke up and was very disorientated and upset. He must have felt awful but they couldn't give him any pain relief for the risk of him becoming drowsy when they needed to monitor his vital signs every hour. He developed a real fear of nurses and if they so much as looked at him he would freak out. Even the cleaner coming in to change the bins would send him into a panic. It was so traumatic for all of us. It would feel like I had only just managed to calm him down from the last nurse visit when they would be there, upsetting him all over again. I know it's not their fault of course! They were all fantastic and we are so grateful for the care Noah received and how they looked after myself and Neil too. This is a good moment to say a huge thank you to those staff at Boston Pilgrim Hospital. They do such a hard, stressful job. I honestly don't know how they do it, they are wonderful.

That day he heard a siren outside and said “neeee naaaaw” which was music to my ears. He also had a period of about half an hour when he actually sat up and played and laughed. Then he fell asleep and didn't really wake up for around 36 hours. It felt like he'd gone backwards but I guess he just needed the sleep. It worked because when he woke up again he asked for juice. The first time he'd wanted anything. I thought he would just drink that day and that would be it, but then he saw me and Neil eating sausage baps and he said “oooooooh” and proceeded to scoff a load of sausage! That was the start of the sausage roll addiction which he still has!!

I am SO amazed by how quickly he bounced back. A few people have said to me that children don't feel sorry for themselves and so they recover quickly. It's true. As soon as he started feeling a bit better, that was it, he wanted to be on his feet and playing again like nothing had happened. They sent him home after 4 days in hospital, he continued on his IV antibiotics for another 5 days, and now he is completely back to normal.

I'll say it once more for good measure – thank goodness we got to the doctors when we did. I'm sorry to say that I am often frustrated after a visit to the doctors. I usually feel like I have wasted their time and they've had me in and out as quickly as possible. But I've always maintained that I would rather risk having a doctor send me home feeling bad for wasting their time than risk my child's life and spend my lifetime wishing I had gone. This time it was the right decision and I must also say a huge thank you to Dr Stone for calling the ambulance.

I am writing this post in the hopes of raising awareness of early symptoms and to remind you all that YOU know your child. Trust your instincts. If you have any concerns at all that your child may have Meningitis then please go to your GP or hospital immediately. Don't wait. Tell them you are worried about Meningitis and make them rule it out for you. 

I don't want to make you paranoid parents, ones who are expecting Meningitis around every corner and pestering their doctors with every slight upset. But I want you to have this information stored in the back of your mind for future use if necessary. Like I said before, you know your child. I know that Noah usually carries on through illness without much fuss, so this time, it had to be something more.

So here it is, in a concise format – the symptoms:

Fever with cold hands and feet
Refusing food & vomiting
Fretful, dislike of being handled (although Noah was initially the opposite and extra clingy)
Drowsy, floppy, unresponsive
Rapid breathing or grunting
Pale, blotchy skin
Unusual cry/moaning
Tense, bulging fontanelle
Neck & Leg stiffness
Dislike of bright lights
Spots/Rash (a red/purple one that doesn't fade under pressure – but also remember that Noah's started out as a brown, blotchy rash)

On a final note - I'm not a religious person, but I know that an awful lot of people were praying for Noah. So God – just in case you really are up there, I must thank you too!

Please Please share this link with your friends and family, share it on Facebook, on your Blog, tell everyone. Spread the word about early detection and ensure there are more good news stories like ours. Admittedly I didn't know all this stuff and Noah was still ok, but that's because we got very lucky. He actually had symptoms from the moment he woke up that Monday night. Hopefully you will recognise them if you need to in the future.

Please also check out the Meningitis Trust website for more information and their campaign.


  1. Thank goodness he was ok in the end. A brilliant post and thank you for sharing your story x

  2. I was crying reading this. Thank you SO SO much for sharing it, I worry all the time about Meningitis! You are so strong for going through it and amazing for getting him there on time too. God would have been listening to those prayers too, I am sure. Thanks again for sharing this, every parent should read it. Carly x

  3. A harrowing post - thanks so much for sharing it your story though, some very important info there that, if I'm being honest, I didn't know about.

  4. I'm lost for words, I just can't imagine what you must have gone through but thank you so much for sharing, I will definitely be sharing with every parent I can reach. Noah you are a trooper!

  5. Thanks so much for sharing my post Carol, and thank you for your comments everyone! Noah is certainly a trooper :0)xx

  6. Brilliant post and I'm so glad your little fella was ok. xx

  7. such an important post! my little girl had pneumococcal meningitis when she was 10 weeks. She never had the rash (it only appears in 10% of cases in this type of meningitis) and we had an ear thermometer and no significant temperature. I was also very tempted just to let her sleep when I couldn't wake her (that stage was when I noticed something was up). I keep telling everyone not to wait for the rash and to have a look at the symptoms so they can tell better than I could at the time. We wasted an hour, we are so lucky to have her still with us.

  8. what a horrific experience, every mothers worst nightmare. I'm so glad your little boy was ok in the end. Most mums are well clued up by now on th symptoms but granys, grandads, aunts, babyminders, teachers anyone who is in care of a child should be made aware.