Meningitis awareness: what this mum wants parents to know about the disease
Kate Langrish
Content writerTo mark Meningitis Awareness Week (16-22 September), one mum whose child survived meningitis, shares the important lessons she has learnt about this frightening disease – advice that could save your child’s life.
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On April 18 2011, Vicky King’s son, Calum, developed bacterial meningitis, an infection of the protective membranes that surround the brain and spinal cord. He was 12 months old and treated in hospital for 10 days.
Here, as part of Meningitis Awareness Week (16-22 Sept), Vicky shares the advice she wish she had known. Plus, Netmums’ official GP Dr Kenny Livingstone tells us the signs and symptoms to be on the alert for …
1 Meningitis doesn't always cause a rash
‘Calum didn’t have a rash so I didn’t for one minute think he had meningitis – I’d always thought this was one of the main symptoms,’ says Vicky.
‘He had a fever of 40C that reduced with Calpol, he was sick several times, wouldn’t eat food or drink water and had diarrhoea. And over a period of 36 hours, he also became very sleepy. The reason I’d taken him to hospital was because I was concerned that he was dehydrated.’
Dr Kenny Livingstone says:
‘It’s a common misconception that a child or baby with meningitis always has a rash.
‘There are many symptoms for meningitis and they can appear in any order, and not every child that develops meningitis will have all the symptoms, they may just have a few.’
According to the NHS, these are the symptoms to watch for:
- High temperature (however it could be lower than normal in babies under 3 months)
- cold hands and feet
- vomiting
- confusion
- breathing quickly
- muscle and joint pain
- pale, mottled or blotchy skin
- spots or a rash(that does not fade when you press a glass tumbler against it) or purple bruises anywhere on the body
- headache
- a stiff neck
- a dislike of bright lights
- being very sleepy or difficult to wake
- fits (seizures)
Babies may also:
- refuse feeds
- be irritable
- have a high-pitched cry
- have a stiff body or be floppy or unresponsive
- have a bulging soft spot on the top of their head
Find out more about spotting the signs of meningitis.
2 Keep a note of ALL symptoms
‘During Calum’s 10-day stay in hospital, he was treated by numerous doctors, nurses and consultants, each asking exactly how the disease had developed. Each day, I was telling the story over and over again but in my stressed, sleep-deprived state, I found I wasn’t always giving them the same information,’ says Vicky.
‘In the end I wrote it down – every detail I could remember – so myself or my husband were always giving the medical staff the same facts. I still do this now whenever Calum is ill with a fever – you never know how important the smallest detail can be, and those details can be easily forgotten.’
Dr Kenny says:
‘It can be difficult to think straight when you’re worried about the health of your child. Making a brief note of symptoms you have seen, and when they appeared, can be very helpful to a medical team.’
3 Trust your gut
‘The day before Calum was diagnosed with meningitis, we’d taken him to an out-of-hours doctor. At that point, he’d had a fever of 40C (that reduced with Calpol) for 24 hours and had been vomiting, and we just wanted to check that it wasn’t anything serious,’ says Vicky.
‘When the doctor saw him, the Calpol had kicked in, his temperature was normal and he was fairly perky (playing with the doc’s stethoscope!).
‘The doctor said it was nothing serious, just a virus and to keep giving him Calpol, but the next day something just didn’t seem right.
‘Calum was very sleepy, and although he’d been diagnosed with a virus, I knew I needed a second opinion. He hadn’t had a drink in 24 hours so I was mainly concerned he was dehydrated.
‘The GP couldn’t fit him in until the end of the day so I decided not to wait and took him to A&E. Thank goodness I did.
‘You know your child better than anyone else, and if they’re unwell and you feel something is very wrong, go to A&E.’
Dr Kenny says:
‘You know your child best. You know what’s normal for them and what seems out of character.
‘Don’t worry about telling your GP you think something is wrong with your child even if they do seem spritely in the surgery – your doctor will see this as important and valuable information.
‘Crucially, if your child displays any of the symptoms of meningitis take them to A&E immediately. Meningitis can be very serious if not treated quickly.
‘Trust your instincts and don’t wait for a rash to develop.’
Why get the meningitis vaccine?
Although the introduction of the meningitis B vaccine as part of the newborn immunisation programme in 2016 has led to a reduction in the number of cases for those vaccinated, the Meningitis Research Foundation estimates there are still nearly 2,500 UK cases of bacterial meningitis and meningococcal disease confirmed in the UK each year.
While Vicky’s son survived the illness, it’s estimated that up to one in every 10 cases of bacterial meningitis is fatal.
‘The most effective thing you can do as a parent, to protect your child from meningitis is to ensure they are up to date with all immunisations. The routine NHS immunisation schedule provides protection against Meningitis B, C and ACWY,’ says Dr Kenny.
Here's what some of you have told us about your experiences of meningitis, in the Netmums Coffeehouse forum.
Hopefully by sharing your stories, we can help raise awareness and remind other mums what to look out for.
Amy says:
'I would like to make people aware of the different strains of meningitis, as we had never heard of Pneumococcal when Freya was diagnosed.
In Pneumococcal meningitis, children don't usually develop the 'rash' which you see in the meningococcal strain. This is where pneumococcal is so dangerous and hard to diagnose, because most parents, us included, look for the most obvious symptoms: stiff neck, photophobia and rash. But Freya didn't have any of these.
I would like to encourage parents to vaccinate their children and not to be put off by the Prevenar vaccine. I know many parents are worried about overloading their children’s immune systems but this vaccine would have saved Freya's life. It will now save over 50 children’s lives a year and hundreds more from brain damage.
Since Freya died we have had support from the Meningitis Research Foundation. We went to a parent’s forum and met other families affected by the disease, where we also wrote a letter to Prime Minister at the time, Tony Blair, to push for the introduction of the Prevenar vaccine.
Maybe just a little of what we did helped with the introduction, I like to think so anyway.'
Alice says:
'My oldest son, now 4 1/2 was 3 at the time and had started getting a sore throat. I thought here we go again, his monthly bout of tonsilitis.
So he got worse the next day, fever and tired as per usual. He mentioned a few times about his head hurting. I just thought well, you may get a headache with tonsilitis.
He had been sleeping all day. I never thought that it might be meningitis. But instinct told me there was something wrong, so I rang the doctors and they said to bring him in straight away.
He vomited there, which I thought was odd.
We got referred to the hospital and the paediatrician said it looked like tonsilitis, after all, his tonsils were inflamed. But they weren't happy to send us home yet.
We waited a while to see how Nathan was doing and he was just sleeping on and off really, which is normal for him when he is poorly. They tried to get him to bend his neck, but he wouldn't, but what 3-year-old would by a bunch of strangers?
Anyway, a paed came to have one more look and he tried to bend his neck again and then something struck me - Nathan had this weird starey look in his eyes. I said that's not right. So then basically Nathan had the lumbar puncture and we went from there.
He was very poorly but has made a full recovery.
I suppose my message would be to trust your instinct - mum does know best.
Together the doctor, paed and I worked as a team and pinpointed what was wrong. You know your child best.
The doctors can only work on the symptoms at the time and they too often get blamed for not picking up things.
Parents and doctors can work together, in my case very well. We were lucky.'
Lauren says:
'Sadly, when our daughter died, we had absolutely no idea that she had any meningitis symptoms. She did not have a rash at the time that the out of hours doctor examined her, or when she was in A&E.
Our daughter died from a Group B Strep infection, which caused meningitis and septicaemia. These caused her body to shut down.
If we'd known more about the symptoms of meningitis at least, we might have had something of a chance to save her. In retrospect we can see that the shrill, high cry she had, was a meningitis cry, but at the time we had no idea. She also went very pale, almost white at one point.
If we'd known in advance what the paleness and shrill cry could mean, we might have been able to save her.'
Lisa says:
'My daughter Imogen contracted pneumococcal meningitis when she was 7 months old. Our GP initially thought she just had a virus, as she had flu-like symptoms, and told me to carry on giving her paracetamol for a couple of days and come back in a couple of days if she was no better.
Looking back, she actually had almost all of the major classic signs of meningitis, except the rash. In particular she had a high temperature, very cold hands and feet and pale, blotchy skin.
She progressively got worse over the next 2 days, but I was worried about going back to the GP in case she thought I was a neurotic mother! When I did go back to the GP, two days later, I insisted that Imogen really wasn’t herself and luckily she was then referred to the local hospital for tests.
Almost as soon as she got to hospital, the consultant mentioned meningitis and put Imogen straight onto I/V anti-biotics, which saved her life.
While in hospital, she was very, very ill and we were told that the first 48 hours were critical. She had uncontrollable temp for over a week and ended up having several fits.
She was in hospital for nearly two weeks and was like a pin cushion with all the needles for the cannulas and blood samples.
Thankfully, she made an almost full recovery, with just a slight hearing loss and is now doing well at school.
I just wish that the new Pneumococcal vaccine had been available at the time.'
Natasha says:
'Emma had just started to learn to run and I couldn't wait for Mark to come home to show him that his little girl loved to play catch.
It was 5.30pm on Monday when Mark got back and Emma suddenly became really grizzly.
We thought she was tired and possibly coming down with a cold as she looked quite pale. We bathed her and put her to bed. At 8pm she suddenly started really projectile vomiting.
She was really frightened and was screaming. I gave her some Calpol and kept her up a while. By 9pm she seemed no better and was extremely pale. All she wanted to do was be with us. She seemed in pain when we touched her and kept moaning but all she wanted was to be held.
We called NHS Direct for advice and they were useless so I called our local hospital and asked whether we could give her some Ibuprofen even though she'd had Calpol. They said we could and so we gave her a dose. S
he seemed to settle a little and became really tired so we put her back in her cot. At 12am she started projectile vomiting again and this time it seemed uncontrollable. She continued like this until 4.30am.
Because Emma had vomited in the past we didn't suspect anything really horrific and plus, she had no other symptoms or temperature.
At 7am Tuesday morning Emma was still sleeping which was unusual, but again, I thought nothing of it as she had been poorly that night. She was due to go to nursery so I thought I would see how she was and take it from there.
She got up at 7.30am and she seemed a little disorientated. I took her downstairs and put her in her highchair. I offered her some food and she just kept shaking her head and refusing so I offered her some water which again she refused.
She did however reach out for some milk. She drank this but within minutes she was projectile vomiting again.
I called the GP and was told to give her Diarolyte to replace her fluids and electrolytes and to phone back should she not improve.
By 11am she had become really drowsy and lethargic. I noticed that her eyes appeared to be rolling and her left limbs were making strange jerking movements.
She was groaning as if in a lot of pain and moaned when picked up. She was floppy and didn't like the light.
I called the GP and asked for someone to come out ASAP. The GP on call refused and said I had to take her to the surgery.
I did this and when we saw him he asked a few quick questions, tried looking into her ears briefly but could only look into one, as Emma was very uncooperative, and diagnosed an ear infection. He told me she would be running around by the following lunchtime.
Emma stopped drinking at 5pm that afternoon and she was deathly white.
I kept wondering if there was something else more serious behind her symptoms but you trust your GP and her being my first child and me not wanting to be a nagging mother I gave him the benefit of the doubt and kept a close eye on her that night.
The following morning (Wednesday) she was still asleep at 9am. When I went into her all I could see where the whites of her eyes, she was stiff and had awful jerking movements.
When I picked her up she was like a dead weight. When her eyes finally came down I noticed her pupils were like pin pricks. I called another GP who asked to see her straight away.
He examined her thoroughly and although he could not tell me what was wrong he did know it was not an ear infection and sent us to hospital.
There she was diagnosed with Pneumococccal Meningitis and blood poisoning. She went into a coma for 2 weeks, had seizure after seizure, lumbar puncture after lumbar puncture and cannula after cannula.
Her veins were so bad from being used so much, they had to resort to the ones in her skull. She was not expected to live.
After 2 months in hospital she was not showing any signs of getting better.
One Sunday afternoon, her eyes suddenly deviated completely to the left and the consultants knew there was something else going on. She had had loads of CTs and MRIs and finally they realised she had Hydrocephalus.
She was transferred to Oxford for brain surgery. This went wrong and she ended up in Great Ormond Street. She was in hospital for a total of 13 weeks.
When she came home she was blind, deaf and had no mobility. Her future was incredibly bleak and nobody dared give us any false hope - they just kept telling us how young children's brains are remarkable and to give her time.
After daily appointments with physios, OTs, teachers of the deaf, visually impaired and speech and language therapists Emma has now made remarkable progress.
Her vision has returned, she wears a cochlear implant which she is learning to use and she has just taken her first step again. She will never be the same little girl we had but we are grateful every day that she's still alive.
Emma still has a severe global delay (she is almost 3 but only has the cognitive and speech and language skills of a 9 month old).
She does not like being touched or cuddled by anyone (including us) and has a real trust issue.
I would not wish for anyone to have to go through what we went through and are still going through and I cannot stress enough the importance of having your child vaccinated against such a horrific disease.
A day doesn't go by where I do not blame myself for the extent of Emma's ordeal and problems and I have never been able to trust a GP since.
If I have a gut feeling abut my baby that’s good enough for me and I would give anything in the whole world to turn back time and have my daughter back. I miss her like crazy.
I know it sounds silly as she's still here but this disease has completely transformed her and we have had to get to know her all over again.
Emma had no temperature or rash but she did have all the other classic symptoms of vomiting, jerky movements, stiffness, cold hands and feet and dislike of bright lights.
My biggest piece of advice to any parent with concern about their child's health is to go with your gut feeling, take them straight to your nearest hospital and don't worry about being a 'nag'.
This disease needs to be diagnosed and treated as quickly as possible. If it's not I know only too well the devastating effect it can have on a whole family.'
If you've been affected by meningitis, it may help you to talk to other mums in the Netmums forum below.
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