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Children's health

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Original poster

Pneumococcal Meningitis

20 replies

alibobins · 12/04/2013 12:39

Ds1 who is 8 has just been discharged from hospital after developing pneumococcal meningitis :(
He has spent 5 days in intensive care 2 on high dependency and 3 on a ward. The community nurses are coming out each day to administer the antibiotics and he has a picc line.
His recovery has been amazing and everyone is so pleased with his progress I just feel shell shocked and since I have been home I have been reliving every moment wondering what if?
I just can't get the image out my head of him sedated and ventilated in icu :(
He had encephalitis too it has been such an emotional roller coaster.
Please look up symptoms as I thought he just had the sick bug going round. This type if meningitis doesn't cause a rash and that is what I looked for :(

OP posts:

hellhasnofurylikeahungrywoman · 12/04/2013 12:43

Scary isn't it? The terror does slowly go but I think the memories live with you for a very long time. I am glad to hear he is doing well now, I hope that continues.

LoveSewingBee · 12/04/2013 13:07

Not surprised you are still feeling shell shocked. What a horrible experience for you and your DS. It is not something you expect, so it is hard to be prepared for something like this.

Good that your DS is now back home. How is he feeling?

Meningitis doesn't always present with a rash, plus if there is a rash then the rash tends to only appear in a very late stage.

Main symptoms are severe headache, aversion of bright lights and stiff neck (not necessarily all three) and generally feeling ill.

Was your DS vaccinated against pneumococcal meningitis? You can now vaccinate against some types of pneumococcal meningitis (although not all) and for kids who weren't automatically offered this vaccination you can make an appointment with your GP to arrange one yourself.

Hope your DS will have a speedy recovery and don't suffer any after effects.

Original poster

alibobins · 12/04/2013 15:03

He hasn't had the vaccine as it wasn't offered to his age group :(

OP posts:

LoveSewingBee · 12/04/2013 17:19

I hope he gets better soon and I hope that you will have some RL support to help you come to terms with this horrific experience.

Probably since your DS was vaccinated a number of new vaccines have been issued (and more will no doubt be incorporated in the national immunisation programme on an on-going basis) - you can sit down with his records (same applies to yourself, adults can also be brought up to date, which is what the NHS recommends but not all GPs seem to know this) and decide which additional vaccinations to have and how and when (he needs to be fully recovered first of course). Siblings can also brought up to date with vaccinations.

I have no idea why the NHS does not remind the parents of older children that additional vaccinations have now been incorporated in the national program which younger children will automatically get but the older children have missed out upon.

beautifulgirls · 12/04/2013 20:49

Glad he is out of the danger phase now. Hopefully he will have a smooth recovery from here - enjoy having him home. DD3 developed septicaemia nearly 2yrs ago now and it was only when she got a non fading rash that the medical professionals realised how ill she was, despite seeing doctors twice within the previous 36hrs. For anyone reading, always trust your instinct and get a further opinion if you have ongoing doubts about how your child is.

Alibobins - do get in touch with the meningitis research foundation. They are great to talk to and "debrief" after the shock you have had and also answer any questions you will have. They were wonderful with us. Give yourself time to come to terms with everything you have all been through in the past couple of weeks.

Original poster

alibobins · 13/04/2013 11:43

It was picked up really quickly woke up at 6 am with a headache and by 2.30 was in A&E with a provisional diagnosis.
He is a bit pale and clingy today I think he overdid it yesterday :( he is having trouble with his memory and has a slight headache so going to talk to the community nurse today.

OP posts:

difficultpickle · 13/04/2013 11:52

Ds had this and was very ill but recovered well. I didn't realise how ill he was and took him to see our GP who told me to take him straight to A&E and called them to warn them we were on our way. He wasn't offered the vaccine either (he's 8 too) but I arranged for him to have it anyway. When he had the vaccine I was told they were making an exception because of what he'd been through so it is interesting to see that there has now been a policy change.

difficultpickle · 13/04/2013 11:54

I'd add that I thought it was a bug too so I was shocked by the GP's reaction (I took ds to see him as he already had a compromised immune system so got very ill very quickly with anything he caught).

MistyB · 13/04/2013 21:39

Be kind to yourself lovely lady. You have probably been running on adrenaline. Take time to rebuild your nest and nurture your self and your family. I am glad he is OK and it will take time for you to recover from this shock. Allow your self to feel, allow yourself to heal.

DeWe · 13/04/2013 22:12

Glad he's better now. A friend who had meningitis said she had a stiff neck and headache afterwards for months, and got tired very easily, so keep him wrapped up in cotton wool for a bit

I was told (in A&E) that the focus on the rash for meningitis was a bit of a boob because if the rash presents, then the disease is well underway, and they've had people assuming it can't be meningitis because there's no rash.
Ds otoh gets exactly the rash with mild viruses (what we were in A&E for)non-fading rash all over him, but as fit as a fiddle. They still tested his blood the first few times it happened though.

I'm a bit surprised that you're saying your 8yos haven't had the injection though. Dd2, who's 9yo had it as a standard jab. So was it used in some parts of the country and not in others?

Turnipvontrapp · 13/04/2013 22:35

I know what you are feeling and I sympathise.

Have been there twice with my DS who is now 4. He was admitted at 4 weeks old with suspected meningitis/ septacemia, had lumber puncture and was given so many drugs, wasn't meningitis in the end, they didn't know what it was but he was very poorly for 2 weeks and they couldn't tell me he would get better. He then got pneumonia at 18 months and had to be operated on for 5 hours as the hospital missed the pneumonia and so he developed empyema (fluid on his lungs). His lungs had to be drained. He was in HDU for a while after it and in hospital for a few weeks.

I had 2 other children at home, only 5 and 6 at the time. I will never ever forget the experiences and when he was first discharged, I would be constantly replaying everything. I found it very hard to adjust back to normality. DS3 only needed to cough and we would be at the doctors for a full check up. I panicked over everything and felt like a nervous wreck.

You have been through a very traumatic time and it is only now that he is better that you have the time to think about what he/all of you have been through.

My advice is just to keep talking and talking about it. I think if I hadn't done that then I would have sunk into a deep depression. It's a very horrible experience to go through and it took me a very long time to stop replaying it over and over.

I hope your DS is 100% again soon .

DoctorAnge · 13/04/2013 23:17

What an awful thing you have been through. I am
Sure it must be a kind of post- traumatic stress, reliving it and worrying every moment.
I do wish you both all the very best.

Original poster

alibobins · 14/04/2013 09:53

Ds has had all the vaccines offered to him apart from the flu vaccine as he is anaphylactic to eggs.
He had a better nights sleep but wants to be with me constantly.
He has got 2 appointments next week and has his picc line out Thursday.

OP posts:

Original poster

alibobins · 29/04/2013 21:34

Just to update ds1 is still doing amazingly well. Unfortunately the MRI scan he had whilst in picked up another problem so he has been referred to the neurosurgeons :(
Me on the other hand am not doing so well I'm struggling to come to terms with how close we were to loosing him :( and the uncertainty of things to come :(

OP posts:

Sirzy · 29/04/2013 21:39

oh no ali, hope everything gets sorted quickly x

PJM18 · 29/04/2013 22:10

Hi. How scary for you. My son had suspected meningitis when he was 3 and had a non fading rash but after lumbar puncture they decided it wasn't. What worries me is that it must be very difficult for doctors to decide what may be meningitis when so many viruses present similarly. What do you think made the doctors think the headache was anything other than just a cold or virus?
Hope the problem picked up on the MRI isn't too serious.

beautifulgirls · 29/04/2013 22:10

Glad he is doing well, but sorry to hear about the new concerns. Hope everything is ok. Wishing him well from here. x

Millie2013 · 30/04/2013 07:00

Echo the advice to keep talking about it. You need to process and make sense of it all. Do you feel like you could have a chat with your GP about some counselling? Or could you have a few sessions with a private counsellor?

Or if you are not keen on the counselling route, do you have a trusted friend you can confide in?

Original poster

alibobins · 30/04/2013 18:19

What made them spring into action was something to do with his gcs or something think he scored 8 and normal is around 15 he was very confused and unresponsive at times.
I have got supportive friends but don't like to show my concerns I like to put on a brave face.

OP posts:

Bon1988 · 10/02/2025 07:30

I am going through this right now and would love some advice from any one.

We got my 5 year old son to hospital before any rash appeared so hoping we caught it quickly. He is out of icu and on a ward, but he is still very unresponsive. He opens his eyes every so often and i think he can understand me talking but he can only groan. Its been 4 days since they started the antibiotic.

Im so frightened!! His bloods show infection is going down but I need to see his personality come through again. He was such a vibrant young boy I just need hope that he will be again!!

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