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

[BCBird]

I don't have experience of meningitis so I'm sending u a hand hold OP.

[Pillowfights]

I cannot imagine what you are going through but sending lots of love and positive vibes your way

[mathanxiety]

Sending virtual hugs.

Thank goodness for the consultant.

[mathanxiety]

Were you ever tested for group B strep while pregnant?

[Nogodsnomasters]

I know that frozen feeling well op, have you got anyone with you for support, partner or mum? Try and eat just little things like a piece of fruit, cereal bar because when anxiety has you frozen, digestive system slows down and full meals just seem impossible but you need to fuel yourself in order to keep going for your DS.
I have no experience with meningitis I'm sorry but we are here to listen.

[Xmasbabyxmas]

I'm sorry you're going through this. My niece had bacterial meningitis at a similar age. The strong antibiotics affected her stomach for a while, but otherwise she's now a healthy, clever and wonderful 7 year old. Its good they've diagnosed it quickly, my sister had to push for about a week before it was taken seriously. X

[Eachpeachpears]

DH has just recovered from bacterial meningitis. Very different because he is an adult but he has made a full recovery after IV antibiotics and steroids. It's a really scary time, I can't imagine how you're feeling, but the doctors are doing everything they can and it sounds like you're recieving the best care.
Make sure you eat and drink.
DD had strep pneumonia which turned to sepsis (it was essentially a toss up between sepsis and meningitis in terms of diagnosis route) at 14 months. She made a full recovery. She had immune system problems for a short while (about 18 months) but overall is thriving. I'm wishing you all the best op xx

[Greentomatoes21]

Glad to hear that he is on antibiotics since Monday. I hope you will see big improvements very soon. This happened to my friend's son when he was only 4 weeks old too. Terrifying time but made a full recovery - now a fabulous 8 year old. Thinking of you, OP. Hope you have good support. X

[Friend2023]

Fingers crossed he makes a quick recovery .
Can only imagine how you're feeling so take care of yourself so you can be strong for your baby. Thinking of you xx

[miniworry]

Thank you so much everyone for your kind and reassuring words. Especially to those of you that have provided stories of things being ok. I really needed to hear that right now. ❤️

@mathanxiety no I was never tested as I had an elective C-section but I've since been reading that this can still occur albeit a small risk?

[miniworry]

@Nogodsnomasters we have a great support network around us, my husband and I have been taking it in shifts to be with him as we also have a 3.5 year old DD at home. I feel the most horrendous amount of guilt when I'm not here with him for those few hours but I know my little girl needs me too, I then feel like an awful mum for only being able to give her me in body as in mind I'm just thinking about being here at the hospital.

He's sleeping now but I'm just sat here watching his chest to check he is breathing and constantly feeling his temperature.

[Babybreath]

I'm in a similar position, not meningitis but I'm sitting with my 3 week old grandson in GOSH, watching him breathe (I've sent dd off to get some sleep) . He had open heart surgery at 2 days old . Sending love to you Op xx

[MrsAvocet]

I'm sorry to hear this OP, it must be a very scary time for you. Obviously nobody can predict what's going to happen but it's got to be a positive that the staff have been so thorough and the diagnosis has been picked up quickly.
And the outcome isn't always bad. One of my nephews was in PICU with bacterial meningitis and septicaemia when he was a few months old and we were told to expect the worst. He's now at University and is absolutely healthy. Take things one day at a time, and look after yourself. Try not to imagine the worst, though I know that's easier said than done.

[Ihateslugs]

My son had bacterial meningitis when he was six months old and spent three weeks in hospital in an isolation ward. Like your baby, he was given antibiotics while waiting for results from the lumbar puncture which really helped. He was poorly on a drip etc for about a week before he began to get better.

After he was discharged, he was so thin and pale for a few weeks and had regressed in his eating habits, from enjoying weaning on puréed food to back to just formula. It probable took him about six months to be fully better but now he is a strapping 6ft 4 inch adult with no lasting effects.

Me on the other hand was an anxious wreck for years afterwards, I worried so much when any of my three children had a temperature or fever!

[bubblesforbreakfast]

Sending love OP. It sounds like they caught it very early, which give him the best chances. Hope he's on the mend now he's in the care of the hosp xx

[miniworry]

@Babybreath sending so much love to your grandson that he continues to get stronger every day. What a wonderful nan/grandma you are for being there for your daughter xx

@MrsAvocet @Ihateslugs thank you so much for sending your positive stories, I really needed to hear those. @Ihateslugs I worry my anxiety will take over me for a very long time after this too and I can see why yours did!

We should get our culture results back tomorrow so that we know what we are dealing with. DS has had no high temp since Monday afternoon now and seems to be having more times where he is awake and alert. I've never been so glad to have a witching hour last night.

Thanks for the handholding ladies xx

[addler]

That's brilliant that he's seeming more alert. When my DD was in at 6 weeks old it was the day she actually opened her eyes and looked around that I knew she was out of the woods. They go downhill so fast, it's scary, but man do they bounce back quickly as well. When DD came home within a few days she was almost back to normal (bar pretty clingy and with a strange new cry that was like a banshee- but health wise was great) whereas DP and I were falling apart and traumatised.

Fingers crossed that DS bounces back really quickly. Another positive sign for us was when she started getting angry and shouting at the nurses when they would do her obs, and when she started to feel hungry again and the TPN through the cannula wasn't quite cutting it!

[violetcuriosity]

Just wanted to come on to send you all the positive thoughts 🫶🏻 it sounds so reassuring that he's more alert and that you've had the correct plan of care. I really hope you are ok as possible, as a Mum, reading your post you 'just get it' I don't know how but you do. Xxxxx

[everythingthelighttouches]

Just wanted to send lots of support and good thoughts.

My son was born extremely prematurely with extremely low birthweight and it was touch and go for a very long time.

He also got encephalitis (similar to meningitis) when he was about 3 and was seriously unwell and in hospital for a week.

He’s a cheeky ten year old now with no memory of all of this.

I just wanted to say you are an amazing mum, your love for both your children shines through in your posts.
Your DS has lots going for him here:

1. a mother and a doctor that between you, caught this very early
2. he’s little. The fight for life and survival is awe inspiring in babies and young children. Even though in some ways they are physically weak, They have so much life to live, they are willing their existence through every cell in their body. Their power for regeneration is far beyond ours.
3. he has a brilliant daddy too, fighting his corner
4. he has a supportive wider family. Their support of you and your husband is going to be essential
5. he has rapid access to treatment and is in the right place. When things get dire, the power of the nhs is amazing

My advice is drink like it is your profession.
Eat little and often. Not because you are hungry but because you need fuel.
Take breaks where you can.
Your job is to survive this, be present for your child as much as possible (which means eating, drinking and taking breaks), advocate for him and just love him.

You are about to find out what an incredibly strong woman you are. Sending hugs 💐

[distinctpossibility]

My 8 yo had meningitis (that turned out to be viral) when she was 6 days old. Only symptoms were a high temperature and not "seeming herself".

She bounced back quickly, though she has very dodgy enamel on her teeth - potentially from the antibiotics. Keep going OP.

[jackspratswife01]

Hi there I have been there in the same situation. My son had bacterial meningitis when he was three months old, high temperature and just some things that did not seem right. Had a lumbar puncture and was diagnosed within 8 hours immediately on antibiotics. Three weeks in hospital some in an induced coma and many fears and emotions overwhelmed me at that time. It's still raw tears later but my sin fully recovered and is an amazing human being. There may be fears around his developmental stages and hearing but we came through and ww passed all posts. I would say the experience broke my heart but you truly value your family's health every day after that. there are support groups online try the meningitis trust there is a depth of information there which will help during the long days and nights to come. i wish you all the luck in the world x

[Newuser75]

My son had bacterial meningitis as a newborn. It was a horrible, scary time. He is totally fine now.

[trampoline123]

Sending everyone lots of love and strength if you are at the bedside of a poorly child

I'm not a child, but had bacterial meningitis just before Christmas last year. I had been at home ill with general body aches, not eating and a high temp for over a week and then became delirious and my knees swelled up and the doc sent me to hospital. I'd been to the doc previously but my neck wasn't considered stiff enough for meningitis to be considered.

Unfortunately I'd turned septic by this point, there were some very scary moments and time so didn't think I'd see my kids again.

After about a week of antibiotics I felt better and started eating again.

Sending you and your family lots of strength and positivity.

[oricella]

Sending lots of positive thoughts.. I well remember the nights in intensive care with 7 week old with pneumococcal meningitis. It was touch and go for a bit, and then long time uncertainty how she'd be affected.. But young brains are amazing at rewiring and now nearly 16 being very laissez faire about upcoming exams.

Echo other posters to look after yourself, but that's easier said than done. I beat myself up for a long time not recognising she was so ill, but it's a sneaky disease that doesn't always behave like the leaflets say. It sounds so promising it was caught and treated early, so he has the best possible chance to come through entirely fine. Big hug

[Nogodsnomasters]

@miniworry

@Nogodsnomasters we have a great support network around us, my husband and I have been taking it in shifts to be with him as we also have a 3.5 year old DD at home. I feel the most horrendous amount of guilt when I'm not here with him for those few hours but I know my little girl needs me too, I then feel like an awful mum for only being able to give her me in body as in mind I'm just thinking about being here at the hospital.

He's sleeping now but I'm just sat here watching his chest to check he is breathing and constantly feeling his temperature.

So glad you have a great support network op. I understand how that part feels, my DS was in hospital for 4 days earlier this month and I also have a DD so my husband and I were always taking turns to be at home and the guilt is terrible. Please keep trying to tell yourself "I'm doing the best I can for both my children with what I have and that is good enough"