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.