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

My daughter had meningitis at two weeks old. We stayed in hospital for 10 days and then we were discharged. A health visitor came out regularly to measure her head and we met with the consultant 3 monthly so they could pick up if there were any delays or issues. She had a full hearing test a few weeks after discharge. Pleased to say at around 2 she was fully discharged as meeting all milestones with no long term effects whatsoever. It was a terrifying time and I think all these years later I still have some PTSD from it all, in the sense that I couldn’t read your post without the fear sinking straight back into my heart that I felt in those moments! however, she is totally and completely fine now and you would never know she had it.
sending you all love. My eldest was similar age to yours, it was incredibly hard leaving him when you’re trying to follow the advise of giving them lots of attention when a new baby comes along, but be kind to yourself. You can’t be in two places at once and you have to do what you have to do. x

@everythingthelighttouches you don't know the power your post has had on me, I keep reading it with tears streaming down my face- thank you, thank you, thank you ❤️

I'm so sorry for all you ladies who have been through the same thing and I'm so sorry if reading my post has brought back all of those memories. But from the bottom of my heart thank you for sharing your outcomes. It makes me feel less alone.

I'm waiting for the doctor to do their rounds now to see if the culture results are back so we know which type we are dealing with, although it's looking likely from initial results it is bacterial I'm worried that the antibiotics he's on might turn out not be the right one's for the bacteria he has. I can't help but just think the worst 🙁

He is feeding his normal amounts from a bottle without any problems, having wet and dirty nappies and temperature has stayed down without any nurofen for 2.5 days now. Trying to cling onto the positives but I worry he might just suddenly go downhill again.

Got love you OP it sounds so stressful and worrying. My cousins DS had it and was seriously unwell for a long time and he had extra complications. He had a long stay in a childrens hospital and it looked very bleak. It was a horrendous time for them all. Anyway two years on he has met all his milestones and is hale and hearty .

Sending lots of love to you and your little man, sounds like you've been really on top of it which is brilliant x

Oh what a worry for you all. I really hope your little boy will get over this really soon

My premature baby had suspected meningitis while suffering from a severe jaundice rebound at 5 days old and had mixed testing results. He was treated with iv antibiotics and it was the most harrowing experience of my life. I remember holding him with tears streaming down my face.

The one thing that got me through was the acknowledgment he was where he needed to be and everyone was doing the best they could for him.

Thank you so much everyone for your kind words ❤️

@miniworry my friends son had meningitis at same age. He's now 25 and absolutely fine. Fingers crossed for you

My relative had meningitis at 3 weeks old. At the time his mother thought he had died while she was holding him.

He is now 40, very fit and healthy, married with children.

I hope the results are positive and your DS continues to do well. Take care.

The consultant has just been - the cultures are back and it did show that bacteria had grown but it isn’t a bacteria that usually causes meningitis so they think it could be contamination from the skin in the culture, so they are going to regrow it and see if it grows again.

She said we won’t really know until the viral PCR test comes back for definite anyway whether it’s viral or bacterial meningitis but it’s likely that won’t be until next week because of the weekend and Easter, but he will be in on the antibiotics for 7 days anyway which takes us to Monday.

She’s happy with his obs and said that the antibiotics are working and that we did the right thing bringing him in when we did. They will continue to measure his head weekly to check that there isn’t any fluid on the brain and he will need extra developmental checks as no one can say what the long term impact will be 🙁 x

Hi OP. I am so sorry, it is an incredibly stressful ordeal to go through.

My dc was admitted at 6 weeks with meningitis, it was late onset from me passing on Group B strep at birth. She was partially treated, hence symptoms showing fairly late, as I was on antibiotics for a womb infection post birth. As I was mixed feeding, she got some of the anti biotics.

She was on iv antibiotics and admitted for 10 days, and had all the post check up.

I just want to reassure you that she is a happy healthy adult now.

But I remember the stress of this like it was yesterday. Your baby is being taken care of, don't forget to think of you. I have to say the nursing staff were amazing with me, as I was in such shock that I didn't think to eat or drink, but they kept an eye on me too as I stayed with her the whole time.

@isthismylifenow I can't tell you how nice it was to read that and hear a positive outcome for your daughter. Can I ask how long she had check ups for afterwards in terms of her development?

I would have to get her notes out, but they were quite frequent. The first of them was a few weeks after she was discharged, and she slept through the lot! There were hearing tests as well as development tests. We then moved countries and her care was taken over where we are now by a pediatrician, who would see her on a yearly basis. He did keep an eye on her for probably a bit longer than normal, as she is very small. She had a huge growth spurt around age 11 and 'caught up' quite a lot growth wise. Development wise there was never any concern. It is most likely not related at all, but she was well monitored due to her history. I don't know what the follow ups on NHS entail now unfortunately though.

Is group b strep not a regular test for pregnant women now? We petitioned for this at the time, but as I left the country I never did find out if we made any difference.

Oh OP what a scary time. DC1 was admitted to hospital when they were very little with suspected meningitis and needed a lumbar puncture. They were put on very strong IV antibiotics as a precaution. I know that horrible feeling.

Just to add I have a friend whose little boy (now a teenager!) had meningitis, along with other health problems and made a full recovery.

I know this will be a very traumatic time for you and it is very easy to neglect yourself completely. I remember sitting up all night with DC1 and the nurses coming to tell me I needed to sleep. But I was so worried something would happen I couldn’t sleep one wink. It was torture all round. Looking back I should have asked more from my support system but I didn’t want to burden anyone. Please know it’s not a burden to ask for help. Is there a close family member who could look after DD for a couple of days? I know you want to be there for her (rightly so) but I’m sure she’d be ok with a grandparent for a day or two so that you could give your energy to your DS.

My son had meningitis at 3 days old; like yours, it was only found through a lumbar puncture, and the only symptom was fever.

He was on IV antibiotics and in hospital with me for about 5 days, and the bacterial cultures were inconclusive, but he was absolutely fine! The fever lingered for a while, and the doctors warned of all sorts of possible side effects from the strong meds, including deafness, but he is my healthiest child (25 years old now, and never ill).

Try not to worry- it sounds like your boy is feeding and not getting worse. I know the fear and desperation- 25 years has not dulled my memory.

My granddad was born with spina bifida and has experimental surgery pro bono (pre NHS) at 2 months old. He contracted meningitis at 2 and had an experimental new drug (penicillin). He then didn't see another doctor until 70 when he was diagnosed with stage 4 bowel cancer.

@MummyJ36 @Greenfinch7 thank you so much for sharing your stories with me, it gives me hope as I daren't google 'long term effects' as I know it will just send my anxiety through the roof when I feel I'm already in shock mode at the moment.

My Dh had meningitis as a baby. I don’t think they had follow on checks then but he developed just fine, he’s a clever man 😊

Hi OP,

I'm really sorry to hear that you are going through this. I hope it will all come right for you soon.

I have five friends who had meningitis as children. Four were left deaf in one ear, and the other lost his sense of pitch (for singing). None of them had any other knock-on effects whatsoever.

They all grew up, went to university and settled down happily with partners.

So I think the chances are very good indeed. Good luck there.

@SpringingAlong @Codlingmoths thank you so much for sharing your stories, I really appreciate it ❤️

How is your little one doing today miniworry ?

Hope you’re OK

@everythingthelighttouches no real change today, although he's come out with rosy cheeks even though there's no temperature- I feel like every tiny thing I see sends me into a spiral.

Doctor said we won't have the PCR results to determine bacterial or viral until Tuesday because of the bank holiday- it blows my mind that those sort of things shut down for bank holidays when lives are involved.

Having a really emotional day today, can't stop crying and just want to wake up from this nightmare. The uncertainty is crushing me. 🥺

Sending huge hugs op 💐💐

Ah miniworry it is such a dreadful and very extreme thing to go through. Most people won’t ever go through this in their lives. I remember feeling like I was going a bit mad in the middle of it all.

To feel so intensely, acutely worried about the most precious thing in your life for an extended period of time is like torture.

And yes, I can totally understand that frustration about the system not working over the bank holiday. However, I think what you have to take from that is that they are pleased with his progress and that they’re satisfied he’s on the right treatment and responding to it. They are not worried that the results of these tests will make a difference to his treatment and recovery.

You mentioned earlier that he is drinking and having nappies and I can’t stress how really amazing news this is.

I also wanted to say that it is not a straight line back up in recovery, it can go up and down and plateau for a while so brace yourself for this. Did the doctors give you an idea of how long to expect to be in? Sometimes that helps. Like “plan for 2 weeks”. It helps you with your expectations and if you get out earlier, we’ll great.

notes on crying…

Of course you are crying you poor thing. You’re doing so so well. Have a good cry! I’m afraid you have probably already found a horrible gutteral cry you didn’t know you had and then a whole range of more “normal “ cries.

Cry with your husband, your parents, nurses. I can remember going down to the tatty bit of grass the hospital call the garden and having a good cry there, the hospital chapel, in the car on the way to/from hospital, and my personal favourite… the shower!!!!

I know I’m slightly making light of it but seriously, crying is good if you can do it. I’m sure a lot of the other ladies on here will tell you they cried a lot.

Keep going miniworry you’re doing really well.💐