4 week old DS has meningitis.. positive stories to keep me afloat please?

[miniworry]

My 4 week old DS has been diagnosed with meningitis after a temperature spike of 39 and my world feels like it's been turned upside down.

No other meningitis symptoms and it was only thanks to a very thorough consultant who ordered a lumbar puncture 'to just rule it out' that meningitis was found. We are currently still waiting to find out whether he has bacterial or viral meningitis as they have to grow the cultures in the lab which takes 48 hours but he has been on iv antibiotics since Monday for bacterial meningitis whilst they wait for the results.

I feel frozen with fear and I've barely ate or slept since Monday. Please can anyone share some positive stories to help me get through these darkest hours whilst we wait for the results? I know that viral is the least serious but doctors believe we are likely looking at bacterial due to how high his white cell count was.

Thanks so much xx

It's absolutely mind boggling when live saving things close for weekends and bank holidays, we were the same when my ds was in hospital recently "no one available to do an ultrasound on him because it's the weekend" - it makes you very angry as a mother.

Honestly just cry as much as you need to, it's better out than held in. Sending love x

Yes this. Hospitals shouldnt slow down on weekends and bank holidays. It is absolutely bonkers this is still happening. fingers crossed all is well on Tuesday.

@everythingthelighttouches everything you said in that first paragraph is what I felt last night- I felt like I just couldn't breathe and just couldn't do this anymore and I needed to run out of this hospital, of course I never would but I had a period last night where I worried myself about my sanity being in these 4 walls of the room, constantly obsessing over everything.

I spent 5 hours googling 'leg tremors' that he does when he's lying down/being changed and convinced myself this was the beginning of the neurological problems showing itself. Doctor this morning said they are normal newborn jerks. He's done them since birth and I've never batted an eyelid but last night it was all I could think about. I don't know how I'm going to live like this not knowing the impact this is going to have, how I put one foot in front of the other 🥺

Being from the U.S., I was astounded my son couldn’t get tests because it was a weekend. That would never ever happen at home.

That being said, my son would have been a 500,000 baby in the US with all the bills, so on balance it was better he was here.

How are things now, OP? Thinking of you.

@Greentomatoes21 We are still in hospital and still not got a firm diagnosis of the type of meningitis. The lumbar puncture culture came back and showed entrovoris which is known to cause viral meningitis but because the split of types of white blood cells from the fluid indicated more towards bacterial, they are now doing further tests on the fluid to see if there are any bacterial dna structures in it.

The unknown is what is tearing me apart. We are 8 days on now 🥺 He's continuing the antibiotics in the meantime and apparently will do so until Saturday which will be almost two weeks.

I'm broken and struggling to keep afloat for so long. My amazing DS however is awake and alert, albeit a bit grizzly, is feeding well and his temperature has been fine for the last 7 days. I'm an anxious wreck and I'm analysing every symptom on him worried he is going to suddenly go downhill 🥺

Thanks for checking in, it means so much ❤️

I wish you and your little one the best! I know how scary it is. My cousin had bacterial meningitis when he was little, he was really sick but survived and he's a very healthy young adult now!
My son had status epilepticus when he was 2 (survival rate is low). It happened all of a sudden with a low grade fever, doctors couldn't explain it. They said if he survives the night, he will be OK. These were the worst hours of my entire life and left me traumatized. Surprisingly he survived without sequels, which was considered a miracle at the moment. I, on the other hand, have been suffering from severe anxiety since then (12 years now).

My point is: small kids are amazing, resilient and they bounce back easily! Hang in there. I know how horrendous it is to wait (we spent 10 days with him in an almost comatose state). There were weekends in between when doctors were not showing up and tests weren't done, which was terrible and made me mad... it will be OK, you'll see!!

Hi miniworry

what I am taking from your latest message is that he is doing really well. Awake,alert, eating,drinking.

Is he able to sit up, stand up or even walk?

I know you are waiting for the tests but what have the doctors said they would change (if anything) in his treatments, based on the results?

I’m a bit confused because you said the csf cultures showed enterovirus (a common cause of viral meningitis) but you said that he is on antibiotics for bacterial meningitis.

Now they have found enterovirus, Are they now going to put him on antivirals? (Most common is acyclovir)

Would they change the antibiotics depending on type of bacteria they find??

Are they happy with his progress and so they think the treatment is working?

I ask because I’m hoping that when you speak to them about all of this, they will reassure you that although they may tweak his treatment a bit, they are confident the current treatment is working well and that he is making sufficient progress.

Sending lots of strength and good wishes x

Deep breaths OP I'm hand holding for you. My oldest son was rushed away minutes after birth because they realised something was wrong (I got to see the tip of his nose as they did a very quick 'here's your baby' as I was still being sorted out post c-section). Lots of antibiotics, IV line protected by a little woolly hat we nicknamed 'the claw' and yes, at one point he was the sickest baby in NICU despite being absolutely enormous almost 10 pounder amongst all the preemies! It was a brutal time and had to be taken moment by moment but he is healthy and fine a decade later.

Not to be outdone, his younger brother was also rushed to hospital at about 2 months old, also had to have 'the claw' and again, another terrifying time but he also survived, is also fine and the only reminders of both experiences are my memories.

Your baby is in the right place and getting the right care. It's brilliant they're pumping the antibiotics in, I don't know how much you've been told but with my second I was informed that they tend to go with a very strong 'dettol' antibiotic to hit whatever it is HARD and then fine tune the treatment once they have results/cuktures. They don't adopt a conservative approach essentially!

Try and eat if you can. If that seems impossible then smoothies are good, soups, those 'breakfast' drinks-anything that will get some vitamins and nutrients into you if solid food just isn't happening right now.

Do you have lots of real life support? Lean on them. It's a really scary time and it's ok to need help. Bliss is an excellent charity as well for support.

It's very frightening right now OP but I'm hoping it will soon start to be a bit lighter xx

I'm just sending a big hug to you, my daughter had bacterial meningitis as a baby and she is a thriving 10 year old now.
Children are amazing, resilient little people and just seek comfort in the fact he's happy and not in any pain or experiencing any scary symptoms.
I think being in a hospital room does nothing for the mental side of being there as the supporting parent, but is what it is at the time.
Be kind to yourself and just know you're in the right place

@everythingthelighttouches Yes he's been on antibiotics since Monday and they said that they are continuing them even though the csf fluid grew enterovirus as until this bacteria dna test comes back, they cannot rule out bacterial. Because he started antibiotics before the lumbar picture the fact that no bacteria was grown in the initial culture apparently could be inaccurate so they want to over treat until they know for sure from this bacterial dna test that it isn't that, due to the fact his white blood cells leant towards a bacterial meningitis.

I asked about antivirals but apparently no, if it is viral they just expect the body to fight it off?

It's the unknown that's killing me because I know there is a much higher risk of long term disability/ health issues with bacterial meningitis than viral so I guess I'm clinging onto the viral diagnosis so that I don't spend the next 5 years petrified of whether he will lead a normal life 🥺 these happy stores honestly give me so much hope so thank you from the bottom of my heart @BarnacleNora @hayley013 @Mandarina4 ❤️

Sending a big un-Mumsnet hug. My DD had bacterial meningitis just before her 2 nd birthday. She was very poorly but is now a thriving 33 year old. Medicine has come on massively in that time, so I'm sure your son will be soon be thriving.
I was the terrified grandma is NICU this time last year with my then 5 week old grandson who had been born at 29 weeks gestation. He is also thriving. Sending you lots of love.

@Moonflower12 I'm so glad to hear your positive stories and love to all your family! ❤️

Oh gosh OP, so sorry you're going through this when you should be at home enjoying your new baby :((

A friend of mine had Bacterial Meningitis when he was days old, 40 years ago. He's perfectly fine now and you'd never know.

I had Viral Meningitis and they're right in that they're better off treating it as if it's bacterial as generally people with the viral version just recover without any meds.

You are in the best place, he sounds like he's being well looked after and it sounds like he's made a huge improvement. There are so many people on here that say their child has had meningitis as a baby and it's not hindered them later in life. And, he was treated super super quick without actually getting super poorly by the sound of things.

Well done on being a fantastic mum and I really hope you're all home together soon xx

W@DrunkTinkerbell40s Thank you so much for your lovely words, they continue to keep me boosted ready for the lonely night stint in here.

His cannula has failed so they've just taken it out and a junior doctor tried to put one in his foot- I've never heard a cry like it 🥺 and it just bled so much it slipped out so we are waiting for a senior doctor to come and try again as his veins are so small. Its breaking my heart 🥺

DS2 had viral meningitis when he was 10 days old. He had to have a lumbar puncture and an MRI, which was very upsetting. He was treated with IV antibiotics and was in hospital for about a week.

It was a very worrying time op, so I completely understand how you are feeling. It’s like existing on a different planet whilst you’re in the middle of it all.

I can only say that you will get through it. DS was ok in the end, but I still get upset if I think about it even though he’s now 13. It was a traumatic thing to go through.

This happened to my boy too. He doesn’t remember any of it now, I promise.

also junior doctors can’t find a vein for s**t.

@Dentistlakes Thank you for sharing your story with me especially knowing it makes you upset to relive it. Can I ask if he had any lasting effects?

Sending love to you ❤️

@Matthew54 that's really good to know- another doctor has just tried for a second time and couldn't get one either, DS is so inconsolable and so am I 🥺 it's the third cannula in 8 days.

Doctors are just doing handover so are discussing what to do.

No, there were no lasting effects and he’s a happy and healthy teenager now.! I hope you’re coping ok and managing to get some rest.

@miniworry I'm late to the thread but just wanted to share my story.
When DS2 was 3 weeks old he was also admitted to hospital with meningitis. I had a 3 year old at home and it was the Easter weekend. We went through the whole horrible rollercoaster of lumbar puncture, cannula, DS screaming then being so scarily quiet. I remember it vividly. In the end it turned out to be viral meningitis and he has recovered really well. He's now 8 and perfectly healthy.
The whole experience was like an out of body experience, it didn't feel real.
Sending you so much love and hugs.
Also demand a paediatric doctor or nurse, does the cannula not a trainee.

How are things today op? I hope your DC has
continued to improve. No pressure to respond,
just wanted to say I’m thinking of you and hope you’re coping ok.

@Dentistlakes Thank you so much for thinking of us and checking in ❤️

We came home today!

The doctors were constantly being advised by the Microbiologists and they were happy for us to stop antibiotics at day 10- the full bacterial PCR results still aren’t back yet but they’re happy even if they do show bacterial meningitis that 10 days antibiotics are enough so they can call us at home with the results when they get them.

They believe it was viral meningitis caused by enterovirus as that test came back positive but want the bacterial results back just to double check. Nothing was grown on the original bacterial cultures but as he had antibiotics before the lumbar puncture they requested a PCR to look for any bacterial DNA.

DS will have an audiology appointment to check his hearing and regular development checks until he is 1/2. Finding that hard to process as I worry I will obsess over every milestone now to see if there are any long term impacts.

However, I'm mostly full of total fear that something will happen to him now we are home. Those of you kind enough to share your own past experiences, can I ask how you got through this? I'm constantly touching his forehead to check his temperature and I'm just so on edge. I really do think I have ptsd of the whole thing 🥺

So glad you're home!

Just hold him close. You've been through the wars, and you both need the closeness. Let DH hold him too, and DD, and you can all finally get used to being a little family of four.

Wow, you’ve both been through so much in such a short time, it’s inevitable that you are going to be anxious for a while yet, cannot imagine what you are going through, let’s hope you get the all clear soon and can begin to enjoy your little one and get on with being a great Mum, which you clearly are.