Second Bacterial Meningitis Septicaemia - Advice needed

[SHS7]

Dear all,

I am hoping you can help advise me on the best way to help my mum.

MENINGITUS ROUND 1 - MAY 2014 – GROUP A STREP

In May 2014 she contracted Meningococcal Septicaemia (group A). She was treated quickly with antibiotics and steroids, was in ITU for a week and then on a ward for a following 2.5 weeks. It took its toll physically but thankfully she was back on her feet by the time she left hospital. It left some lasting hearing damage which was considerable for a couple of weeks, but eventually got much better and not enough for anyone to notice.

She was tired for a long time after and developed Polymyalgia ( a muscle weakness) and was on steroids until about 2 months ago when her bloods showed no more markers for the Polymyalgia.

I had convinced her to start gentle physio and exercise recently to help her lethargy and aches and pains - she is not the best at taking care of her body with exercise and the right nutrition.

MENINGITIS ROUND 2 - NOV 2017 – PNEUMOCOCCAL

This last Monday, mum woke up with a headache later than usual. She took some paracetamol and did her physio exercises before going out at 12pm for what I presume was an xmas shopping trip into central London. My dad says that by 2pm she was back home having had to get off the train and turn back for home with 'the worst headache of her life'. She'd picked up some stronger painkillers (paracetamol based again) and she couldn't read the packet.

Having seen the last bout of BM develop, my dad took her straight A&E. They were there by 3pm, she went unconscious by 4pm and started receiving antibiotics by 8pm. It took longer than it should to administer antibiotics as mum was allergic to an antibiotic but my dad couldn't remember which one. He mentioned penicillin so they had to track down other non penicillin based ones which they didn't immediately stock in urgent care center. It turns out she is allergic to septrin and not penicillin but anyway....

She was admitted to the high dependency unit Monday night, but on Tuesday her breathing labored and she was rushed to ITU.

Weds morn she had woken up and was conscious. Thursday she started talking a bit and recognizing us but very very jumbled and confused and not able to say a lot. By Friday she was more clear but very slow to speak, finding it hard to get the right words, very marked hearing loss.

By yesterday (Saturday) she was by all accounts back to her old self in terms of personality, however the slow speech, marked hearing loss, slight memory loss and headaches persist. She is recovering on an Infectious Disease ward and I think physically she has mostly been given the all clear but neurologically they want to do some more tests. They have mentioned her seeing an ENT and speech therapist so far.

I realize it is VERY early days (7 days as I write) and considering her progress each day so far and the fact she is alive and still has her sense of humor, I am eternally grateful.

However, going forward, I feel responsible as her advocate to make sure she is getting the best care, follow up and investigation she needs.

Unfortunately, a bad experience with getting my daughter misdiagnosed for a whole year by ‘specialists’ for a medical condition (despite me diagnosing it correctly very early on!) has left me with an unhealthy distrust for taking doctors answers at face value and feeling that sometimes they don’t give things proper investigation. I believe you have to keep questioning and standing up for your gut instincts.

As I am pregnant I have been advised not to visit her as she is on the infectious disease ward now, so it makes my communication with doctors even more difficult!

So I have a few concerns and questions I am hoping you can help with.

WHY TWICE? - The doctors in the ITU unit advised me they believed it was just completely down to ‘bad luck’ that mum has got bacterial men twice. I just don’t buy this and don’t want to wait for it to happen again before they change their minds and its too late.

CSF LEAK? - As soon as I read something on this forum about a CSF leak I had a gut feeling about it. Yesterday, mum started getting a really drippy nose. On a CT scan following her first bout of meningitis and also when she was admitted to hospital with this second bout, both CT scans showed a mass/blockage/congestion at this sinus. I have not seen these myself and I am not sure the doctors have compared them as they were done at different hospitals (first one was private through her healthcare plan, this time NHS). I have written notes for the ENT doctor who she is supposed to be seeing tomorrow to contact me if he needs any details from last time round so I can pass these on. They tested the fluid today with a dipstick but having read up on this after, I understand that these dipstick tests are not reliable and especially when there is a case of BM involved, it can alter the results.

NEUROLOGIST RECOMMENDATIONS – My mum is currently at Northwick Pk hospital in Harrow. They have not yet mentioned her seeing a neurologist and as she was under the care of one last time round, and seeing as this time it seems to have affected her far more neurologically this time, I want to follow this up with the hospital and make sure she is seeing someone good. If anyone has had similar experiences and has seen someone they can highly recommend in the London area please do pass on their details as we could see someone in another hospital or privately through her healthcare plan.

VACCINTIONS – My husband visited yesterday and the doctor said they would be giving/recommending some vaccinations to mum – he cant remember what ones they said. Does anyone have a list of what I should check she is getting and when would be too soon to receive these considering her low immune system?

Any other advise anyone can give on anything I should be asking the doctors, medication that I should check on… anything at all which might help… I would be very grateful for.

It seems that you have a great informative and supportive community on here and I hope that in the future, having been through this with mum twice, I can be of use and help someone else going through this.

Many thanks in advance for any time taken to help.

Sarah

[StrawberryCream]

I am so very sorry to hear that your mum has suffered a second bout of Bacterial Meningitis. Thankfully your dad realised quickly what was reoccurring and got her to the hospital.

We are not medically trained on here and just people who have had Meningitis ourselves or care for/know someone who has. Your questions at the moment are very much 'medical' care so I would advise that you phone the Meningitis Now helpline as they will have greater knowledge to advise you - 0808 80 10 388

[shellmegandaisy2013]

Hi there very sorry to hear about your mum having a very difficult time she is very lucky to have survived BM twice with a great recovery time a lot of that is down to the fact that she was treated quickly which is the most helpful thing you can do with any form of meningitis. My daughter had meningococcal septicaemia type B when she was 2.5 was very scary but I do remember asking how to prevent this in the future and they said that the body may build a slight tolerance but because of the nature of the meningitis bug there’s no guarantee she won’t get even the same one again, I know you can now be vaccinated by men type c and b, but there is actually something like 27 different types of meningitis, I did a lot of research when my daughter had it and afterwards to make people aware of the risks, unfortunately most of what you said is normal with the type of meningitis she had and has if it’s the same they should have tested which type it was and should have done an mri test to check where and what the meningitis had effected. my daughter was in hospital for 4 weeks total I had student doctors, doctors & consultants from all over the hospital constantly asking me questions as it was still quite rare, so I became knowledgeable just by asking everything no matter how irrelevant it seemed.

Hearing and sight tests are supposed to be performed by 6 months post meningitis and you can get that through your doctor also asking the doctor for the referral to a neurologist, the congestion maybe why she contracted the meningitis as it usually starts in your nose and then gets into the bloodstream when your immune system is weakened and broken skin, most people can carry meningitis and never have full blown meningitis as would just be the sniffles as it doesn’t get into the bloodstream. we also had to speak to disease and infection control and they investigated where it come from to try and be prepared if anyone she’s come into contact with came in with similar symptoms, but to be honest I didn’t really have much more of a follow up than that my daughter is now nearly 8 and is having to be referred to a neurologist to make sure there’s no future complications there looking into an ABI ( afterbirth Brian injury) which could be the cause of some of your mums problems but the neurologist can help with that, as for vaccinations I’d ask your doctor for a full blood test screening to see what she needs vaccinating for, if unsure what she needs there’s a lot to take on when this kind of stuff happens so don’t worry if you don’t remember it all, take doctors/consultants names so you have a reference point and most of them should be happy to email you with any quieries if all else fails speak to PALS there the advice service in the hospital and they can help find out and get information from doctors if needed, I know I’ve put a lot and I really hope some of it helps, bless you and your family at this tough time. 💖 xx

[SHS7]

Thank you both so much for your time replying.

I am very aware at the moment my questions are medical and of course I’m speaking to the medical professionals and charities but I also wanted any first hand experiences from survivors and fellow relatives/care givers.

This weekend I was instantly dismissed by a doctor when suggesting a possible CSF leak could be a reason for contracting BM for a second time. Her dismissal was based on absolutely nothing (seeing as you need gold standard scans to determine this) and she seemed unwilling to discuss further tests. So you can see why I am trying to get experiences/advice from all sides inc survivors and relatives - especially those who have experienced this more than once like we have.

Shellmegandaisy, thanks so much for those useful tips, there are at least three things there I can use to follow up on and I definitely will. I hope your daughter is doing well. I can’t imagine having to go through this with a child, it must have been horrifying.

[Jackiemerritt22]

Sorry to hear about your mum. Please press the ENT re CSF leak i had this meningitis may last year and 4 ENT appointments later they have just discovered i have multiple CSF leaks and im going to need a neuro surgeon to operate on it. I had been telling them for over a year that i thought i had one but was only when i saw top dog it was diagnosed. I also have a low pressure headache but have been told not an emergency and have just had appointment for hospital for the 25 off october 18 weeks away. I hope your mum is doing better but go with your gut and push for answers.

[SHS7 in reply to Jackiemerritt22]

Hi Jackiemerritt22

Thanks for your response. So glad you finally got the answers and you can now be treated accordingly. Wishing you the best of luck with your operation.

I should have updated this thread, but basically, my gut instinct was correct and my mum did indeed have a CSF leak, 2 of them intact in her sinus area. She was operated on shortly after they discovered it..... mainly because she was in hospital recovering from the meningitis and she’d had BM twice before. Although they also told her it wasn’t ‘urgent’ and something that would cause immediate danger.

I really had to push the doctors to do the more accurate test on the fluid coming from my mums nose after they dismissed it initially and then did the more unreliable dipstick test which said it was not CSF. Eventually we got there anyway. Gut instinct is very powerful!!