Acute Bacterial Meningitis : My father who is... - Meningitis Now

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Acute Bacterial Meningitis

Kurtssmith profile image
48 Replies

My father who is in his late 70s, was rushed to the hospital with acute Bacteral Meningitis (streptococcus pneumonia), he has been in the Critical Care Unit for approx 4 days of which he has been non responsive since he was admitted and has been on a Ventilator to help him breathe. They are currently giving him doses of Ceftriaxone and Vancomycin (Antibiotics) they are also giving him steroids called Dexamethasone to decrease the inflamAtion around the brain. I am very worried as it has been almost 5 days and there is no change in his mental state. His blood pressure and vitals are good but he is having seizures although at a reduced level. Does anyone know about any of these meds. Or what combination of meds. Worked for you. And what should be a reasonable expectation of recovery time and impact of this terrible disease.

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Kurtssmith
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48 Replies
kirsty40 profile image
kirsty40

Hi Kurt smith. Sorry to hear about your dad. I had the same thing but was in hospital for 3 weeks. I did not have seizures but it got into my blood stream. I had every drug you can think of as nothing was responding. Just trust the doctors and remain positive. I'm sure he will pull through 😊

I am nearly at the two year mark out of hospital and back working full time.

All I can say take one day at a time.

I hope he improves soon.

Kurtssmith profile image
Kurtssmith in reply tokirsty40

Knowing the little I know about this life threatening illness it is amazing that you are now back at work full time.

The bacteria is not in his bloodstream, but was found in his spine and no doubt in the brain causing the inflammation. Not many persons have been put on Vancomycin it seems as it is a very strong antibiotic, with side effects so that is worrying me a bit.

kirsty40 profile image
kirsty40 in reply toKurtssmith

Yes I know it's hard to believe I survived it. I also had swelling. I was on that drug for around 4 weeks (24hr infusions). After leaving hospital. I did not know of any side effects? But it took me a long time to recover. I hope he shows some sign of improvement soon. My thoughts are with your family

Kurtssmith profile image
Kurtssmith in reply tokirsty40

Thanks. His hands are swollen but not his feet so I am worried about that even though the Drs say that happens sometimes. The infections Disease Consultant wants to up his dosage and they plan on doing another Lumbar Puncture to see the effectiveness of the Vancomycin so far. I

kirsty40 profile image
kirsty40 in reply toKurtssmith

I am surprised they are doing another lumber punture? I had blood tests daily for them to check levels. Yes I had a bit of swelling I'm sure it looks bad but just trust the doctors. Remain positive!

Kurtssmith profile image
Kurtssmith in reply tokirsty40

Well they surprised us today by ordering up a CT Scan before the LP. I was curious as to Why you felt it is unusual to have another LP done. My understandingis that since the bacteria is not in the blood and they can't get to the brain easily going in and around the spine is the next best alternative...No?

Schmooschmoo profile image
Schmooschmoo

Sorry to hear about your dad. Make sure the dr's do not become complacent as they can often be when treating older patients. I know the steroids are to help reduce inflammation, I would recommend that you specifically ask if your dad has had a CT scan. Sounds like common sense but in my mums case (she was 72 years old), the dr's (& they were supposed to be the best of the best), did not run regular CT scans, relying on the IV antibiotics & steroids and she had an aneurism due to the swelling, which could have been mitigated. They were neglectful and arrogant. Hope your dad pulls through. This disease is extreme and really hurts the elderly and the very young in particular.

Kurtssmith profile image
Kurtssmith in reply toSchmooschmoo

Thanks for the advice. I will check with his Drs to see if they can run another CT Scan , when he first came in they did a CT Scan and they didn't see anything new (he had a minor stroke in the past) although they said that they may do an MRI soon.

Schmooschmoo profile image
Schmooschmoo in reply toKurtssmith

Please do. One CT scan on initial diagnoses is not enough. Any subsequent brain "swelling" is not being monitored properly without another. Dr's wouldn't also know if your dad has any 'bleeding' on the brain without one, (a further concern as he is in a coma state & so physical syptoms of patient bleeding won't be evident) which in my laypersons opinion is crazy now that I also understand he's had a stroke in the past & therefore susceptible to another. Keep onto the dr's. Best of luck for your dads recovery.

Kurtssmith profile image
Kurtssmith in reply toSchmooschmoo

He did another CT Scan today as the Dr says they need to make sure he can handle another Lumbar Puncture. So I guess we will get the results later tonight or early tomorrow

Kurtssmith profile image
Kurtssmith in reply toKurtssmith

He did the CT Scan and they found nothing that they didn't expect . However the tried to do another Lumbar Puncture and were not successful. So we are left in the dark as to if the bacteria is waning or not :-(

sdjohnson231 profile image
sdjohnson231

I was on the ceftriaxone for 12 weeks total. 13 days in the hospital. Approximately 7 days unconscious before it started to work. I also had an MRI once I regained consciousness that showed an abscess that had developed on my left frontal lobe, which is why I was on the iv meds for so long. I was 56 at the time of my diagnosis with pneumococcal bacterial meningitis. 4 days is very early in the process. Keep asking daily questions. Keep talking to your father. He may hear your voice. I can't be sure, but believe I heard family talking around me while I was unconscious. I know I was comforted by their presence. I "knew" they were with me, even though I couldn't speak. Keep us posted.

Kurtssmith profile image
Kurtssmith in reply tosdjohnson231

Well it is great to know that you have recovered from this awful disease. We have started to talk to him a lot more and we want to feel like he is hearing us but we aren't really sure. And yes we are constantly asking his Drs questions and they are planning to do another Lumbar Puncture tomorrow to determine how effective the bacteria is responding to his meds

sdjohnson231 profile image
sdjohnson231 in reply toKurtssmith

Those of us responding to you have "survived" this ordeal. True "Recovery" is something that is elusive for many of us. We are lucky to be alive, and we know it! But most of us are left with some after effects. I'm lucky. I "only" have daily headaches, balance issues, and concentration problems. I had to take early retirement from my job. But I survived!

Changing the subject, is there a television in your father's room? If there is, turn it on! The "noise" from it is what I first heard when I regained consciousness. I was irritated when I came to, due to the incessant noise! My family was amused, the nurses were encouraged and believed that the noise had something to do with waking up my brain! It couldn't hurt.

Kurtssmith profile image
Kurtssmith in reply tosdjohnson231

Well not a TV but a small radio so he can listen to it subconsciously. He did another CT Scan today so hopefully nothing negative shows up on this test

SimonaM profile image
SimonaM in reply tosdjohnson231

Hi, I just want to know. How long does it take to recover from bacterial meningitis please. I've got my 1 year old who I've been told he's had inflammation to the brain etc...and it's more severe now. Been in hospital 3 weeks 3 days. Now under rehabilitation unsure for how long. I am so scared and worried for my little boy. Will he be back to normal again?

I am really sorry to hear about you and everyone else in here.

I know it's been over a year but I was googling about it and ended up here.

Please tell me..

Thank you

SimonaM profile image
SimonaM in reply tosdjohnson231

Hi, I just want to know. How long does it take to recover from bacterial meningitis please. I've got my 1 year old who I've been told he's had inflammation to the brain etc...and it's more severe now. Been in hospital 3 weeks 3 days. Now under rehabilitation unsure for how long. I am so scared and worried for my little boy. Will he be back to normal again?

I am really sorry to hear about you and everyone else in here.

I know it's been over a year but I was googling about it and ended up here.

Please tell me..

Thank you

sdjohnson231 profile image
sdjohnson231 in reply toSimonaM

Simona, I have no experience with children having it, so I don't know if it differs for their recovery time. It took me 6 months of recovery to be able to return to work full time, if that helps. Susan

SimonaM profile image
SimonaM in reply tosdjohnson231

Ok. But yea thank you. It's really reassuring thou that your doing well and back in full time.

StrawberryCream profile image
StrawberryCream

The medications your father is being given is the right medications for his Bacterial Meningitis. It is very early days and his recovery will take a long time even after the infection has resolved and he is discharged. I was in a coma for 3 weeks and had subclinical fits because of the infection/inflammation in my brain. I was not expected to survive or to be serverely mentally and physically disabled ....... but I defied the odds. I was 54 when I had the Meningitis. If you click on my user name it will take you to my profile where you can read what happened to me.

Kurtssmith profile image
Kurtssmith in reply toStrawberryCream

I did read your profile and it is heartbreaking to see all that you went through and all you are going through but you are here and well enough to write about it . I am relieved to hear that the medication being given to my Dad is correct. And I am also becoming aware that I am in the early stages of the unconscious phase of this illness. I just pray that he comes out of this coma and that his post effects are all recoverable

Kurtssmith profile image
Kurtssmith

Just wanted to ask if any of you developed any water bumps/blisters on your skin while going through the meningitis illness?

Kurtssmith profile image
Kurtssmith

Also seeing that alot of persons with Bacterial Meningitis go through an unconscious phase for a period of time, are you more susceptible to bed sores or will the antibacterial medication prevent this for the most part?

StrawberryCream profile image
StrawberryCream in reply toKurtssmith

I was on a special air mattress that had channels that would alternate being full of air so that my skin was prevented from developing pressure sores. I was very puffed up with oedema when I was in the coma because I wasn't moving about.

Kurtssmith profile image
Kurtssmith in reply toStrawberryCream

Well even though we have not seen with our own eyes Thebes's medical staff assures us there are no bed sores so we take some comfort in that.

StrawberryCream profile image
StrawberryCream in reply toKurtssmith

Hospitals do have to do there up most these days to prevent pressure sores so they will be doing all that can for your dad. It is still early days but wondering if there has been any change in your dads condition? This is a very difficult time for you as relatives as you are watching and waiting and experiencing the huge distress and worry which your dad will be unaware of at the moment.

I am assuming you are in the UK? If so have you had a look at the Meningitis Now website - MeningitisNow.org and ring the Meningitis Now helpline - Freephone 0808 08 10 388 they are very understanding, supportive and knowledgeable about meningitis.

Best wishes

Kurtssmith profile image
Kurtssmith in reply toStrawberryCream

Unfortunately, I don't live in the U.K. And so making that call to the support line will be costly for me but I may be forced to at some point if I don't see any significant changes. He is still in an unconscious state and we are still not sure where the bacteria levels are at this point so It is really hard to be too optimistic at this point since we see minimal improvement and according to the Drs they had expected more mental response at this stage.

StrawberryCream profile image
StrawberryCream in reply toKurtssmith

I was in a coma for 3 weeks and for some people it has been longer. What country are you living in?

Kurtssmith profile image
Kurtssmith in reply toStrawberryCream

He is in Jamaica at the University Of West Indies Hospital.

StrawberryCream profile image
StrawberryCream in reply toKurtssmith

I think there are some meningitis organisations in some other countries like America but not Jamaica. However, it does sound like he is getting a good standard of appropriate care.

Kurtssmith profile image
Kurtssmith in reply toStrawberryCream

Originally, I did try to find an organization(s) in the US but I didn't really find one and I came across Meningitis Now not even knowing that it was located in the US.

StrawberryCream profile image
StrawberryCream in reply toKurtssmith

Meningitis Now is a UK charity organisation.

Kurtssmith profile image
Kurtssmith in reply toStrawberryCream

My bad, I wanted to say UK but incorrectly said "located in the US"

David-A-B profile image
David-A-B

I had similar with bacterial menningitis. I was in a coma for 3 days and in hospital for 3 weeks. The drugs u mention were the same l had until l came home. I swiched to another type of IV antibiotic and oral ones for 6 weeks after leaving hospital.

The side effects of pain lifting arms...stomach sickness and drowzyness. I hated taking the pills as they sent me into zombie land.

I was at home not working for 6 months recovering taking one day at a time. Just focused on building strength.

9 months later and now back full time with little effects. I struggled mainly with short term memory loss but with training that has improved.

The doctors are great at doing anything they need to help the person get well. Once diagnosed that is. I always thought menningitis was what happened to young children.

Best wishes

Kurtssmith profile image
Kurtssmith in reply toDavid-A-B

Thanks for the Reply and great to know you have recovered . We are still in the Coma phase and with each passing day we keep wondering and waiting for some kind of major improvement. But none so far. So it has been really hard on us so far.

nuksy profile image
nuksy

I am going thru a similar situation with my Gma. She is 67, still in a coma its almost 3 weeks since she has been hospitalized/unconcious. Drs had didnt know it was BM. Right now the drs are more concerned about brain damage. She moves occasionally and also to paon but not on command. We are so afraid to.lose her. Drs say they are unable to do a ct scan due to her low heart rate and bp. I hope you father has now recovered and is in recovery. The rollercoaster is a nightmare.

Kurtssmith profile image
Kurtssmith in reply tonuksy

Sorry to hear about your Grandmother. I do share your pain. Every day/night is an up or down experience as he would show slight improvements, followed by setbacks. Like your GMA, he is still in an unconscious state and had really high and really low BP this week. The Drs want to try to get him off the Vent so they can do an MRI. What concerns me is that they want to take him off his antibiotics (Ceftriaxone and Vancomycin ) after today as he would have exceeded 21 days of antibiotics. Is your GMA having seizures as well?

nuksy profile image
nuksy in reply toKurtssmith

If she is having seizures they are not visible and we dont know whats going on in her brain because her bp wont stabilize to have a ct done..were they able to do a ct on your dad? They told us antibiotics treatment with with Vancomycin would be for 14 days. My gma has drain in her head to release the fluid as she had severe intercranial pressure. Did they also do that to your dad? Im sorry i dont know the answer to your question about stopping antibiotics. Did his latest csf results come back negative?

Kurtssmith profile image
Kurtssmith in reply tonuksy

I am assuming that CSF means LP. His last LP attempt was about 2 weeks ago and it was not successful as it is diff to do with the machines that he Is hooked up to. And no they didn't drain his head, and actually that is news to me that they even do that in situations like this.

Kurtssmith profile image
Kurtssmith in reply toKurtssmith

This week was the very first time that he struggled with his BP (it was high then low ). This prompted them to do an Enzyme test and ECG. They both came back negative. They are going to run a lung test to rule out clotting and if that too doesn't show anything unusual then they feel like it was due to lack of fluids in his system. He is actually on a new machine that manages his fluid intake now.

MontanaHydroMom profile image
MontanaHydroMom in reply toKurtssmith

I've been reading along with all of you, trying to compare notes on my teenage son's experiences with a post-surgery bacterial infection identified in his spinal fluid -- the 14-day antibiotic therapy (and all the weird stuff that came up during that miserable treatment period, etc. Can't tell anyone I understand a lot more for certain this morning!, yet, LOL! Even so, many of the comments shared here have helped me form some new questions to pursue -- and that is all I know to do, at a certain point! Indeed, continuing to ASK has probably saved our son's life, in the long view... more than once.

I very much appreciate hearing about your personal experiences and reflections as actual patients. Being here really helps me understand more about many things my son is not yet able to articulate for himself, as well, as he will when he's a little older (and it's all continued to march over his daily life another 10 or 20 years). It's easy to see, as the primary parent figure in 'our' history, I am not the one experiencing ANY of it; so, if he can't express some things fully, there is info I am missing, no doubt! Regardless, I am his sole advocate and representative voice; and the ONE adult in the conversation MOST responsible for being sure the input he can offer is HEARD and responded to. It's an overwhelming, unbalanced, crap shoot in many ways... while the quality of the outcomes achieved is beyond critical to the quality of my son's life -- and, very possibly, quite vital to the continually lurking question of whether he will go on living.

Now I feel dizzy and have a headache again, too...

All that said, I just want to thank everyone for the input being shared here; and for the opportunity to better comprehend the issues of Hydrocephalus, Epilepsy, never-ending head pain and chronic joint/muscle pain my 19-yr-old young man endures, through your direct comments.

It's minor, for sure, but I guess I may be able to contribute a bit too! It may help you, kurtssmith, if we clarify the two acronyms you mention above: First, CFS is just 'cerebral spinal fluid', and 'lp' is short for 'lumbar puncture'. However, they are not synonymous or interchangeable terms. CFS is the actual grease in the machine if you will; while the 'lp' is a procedure used to measure the intracranial pressure of the CFS. Another procedure for measuring pressure (if you have Hydrocephalus and a shunt implant) is doing a 'shunt poke'. It's important to understand that both of these procedures (and especially the lumbar puncture) are very invasive actions to take. This is true because both procedures open the body to a high degree of chance that an infection can be invited IN through the small hole created to capture a CSF sample. Surgery, itself, is the next worst way to avoid an infection, I hate to say....

In my son's case, it is MOST likely that the damn bacterial infection detected in his CSF, was brought onboard during any one of these specific procedures he was subject to over the 6 month period before they found the infection inside him. Not even the Neurosurgeons can prevent infection from invading the body while they are executing these procedures. They can and do TRY, but infection still happens at a very high rate of incidence, actually... so 'my 2 cents': DON'T think of a lumbar puncture as a simple way to access CSF for measuring purposes! An lp should always be approached CAUTIOUSLY, and never become a procedure your Dr's turn to on a recurring basis, with little thought given to the clear dangers implied. if ANY NS suggested we do a quick, breezy lp to dial in CSF pressure -- then another in 2 weeks -- and another a few weeks, after that, and so forth; I would definitely consult another NS for feedback on the first NS' theories, before allowing it to become a dangerous habit!

Kurtssmith profile image
Kurtssmith

Does anyone know what is the suggested limit of Ceftriaxone and Vancomycin that should be given. My Dad's doctors want to cut the antibiotics because he has been taking them for 21 days.

MontanaHydroMom profile image
MontanaHydroMom in reply toKurtssmith

Aldo, here I can tell you my son was not allergic to vancomycin going into the antibiotic therapy.... but he was by the time he came through -- and remains highly allergic to the drug to this day, nearly 3 years later... When he was going through violent reactions to the drug at about day 8, the infectious diseases monitor worked overtime trying to create a case concluding he didn't have a bacterial infection after all, but rather, had contracted an unidentified viral infection, somehow! It was all BS. The fact of the matter was: He was allergic to the Bendryl in his IV mix. I told them so, and they shrugged - turned the Benadryl down a notch - ande then proceeded to opened vancomyacin full force, to shout out the horrible reaction he was having to the Benadryl in the first place....

These are the questions we asked repeatedly - but no one could answer:

Why not replace the Bendryl with something similar but 'not the same'? Why flood a boy's system 14 days straight with the strongest antibiotic they could find, instead of trying some others? Why ignore the information i gave them, about being allergic to Benadryl ; and then try to cover it all up by inventing a non-present virus? Why force-feed a patient (now developing an allergic reaction to Vancomyacin) so much of the drug that the poor kid had a horrible rash from head to toe, for early 3 months after the therapy was completed and we had finally come home??

I don't know why!

I only know that, on some level..... they wanted to be right about everything, and erase my input if they could possibly pull it off -- far more than they wanted to see my son recovering and thriving. Words for the wise...

MontanaHydroMom profile image
MontanaHydroMom in reply toMontanaHydroMom

Sorry about all the typos, everyone -- could not get back in to edit this one... BAD little typer, I admit it, LOL!

nuksy profile image
nuksy

Sadly, heartbreakingly my gma passed on april 17th. It is very difficult to articulate much less deal with this. Kurtssmith I hope your dad has recovered by now or showing signs of significant improvement. I would take anything other than the outcome we have experienced.

Kurtssmith profile image
Kurtssmith in reply tonuksy

I am truly sorry to hear about your gma. I know I. And my family have gone through a hell of lot over the last 2 months yet it is nothing compared to what you are going through right now. So I am truly sorry for your loss.

My dad is alive but he has had so many other infections like pneumonia and really low blood pressure then high blood pressure with the most recent being he had a tracheotomy done and the tube running directly through the throat was narrower than the one he had running from the Vent down this mouth. So his breathing has been the biggest issue of late. Every time they try to take him off the Vent or lower his dependence on it something happens. Yesterday was the first time he opened both eyes so that is a plus (although I don't know if he is seeing out of them). These are the real first green shoots that we have seen. And I am praying for no more complications

nuksy profile image
nuksy in reply toKurtssmith

thank you. Good to hear your dad is still fighting, I really pray he makes it through and wishing you much much strength as I know how hard it is even for the family. All the best.

Kattymilena profile image
Kattymilena

How is your father now?

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