Meningitis Now
4,617 members1,520 posts

3.5 years old boy with S. pneumoniae meningitis

I´m lost. Today is the 14th day in hospital. Great progress since day 11 when headache and fever returns. Yesterday new treatment, but still fever issue. He recovered consciousness on day 4 and he has had an everyday improvement until today (even with fever). He is making jokes and talking almost normal. But he can´t stay seated because his head pains. And I feel fear about anything that gets worst his situation.

I´have read all posts here, but I need more details.

How long was your time in hospital?

When exactly you could stay seated, walk, etc?

Do you know what was your treatment during hospital?

How was your recovery phase?

One of you can do anithing normal as before this ill?

How exactly was your first days/weeks at home?

Please let me know any of these things. Thank you

13 Replies
oldestnewest

Hi Brmarchial,

First, let me say hugs to you and your family during this difficult time. I am 1 year, 4 mos post bacterial pneumococcal meningitis and the news is good!

But... the first 3 weeks were very rocky and the first 6 months were hard.

I have cut-and-paste your questions so that I can answer them:

How long was your time in hospital?

First stay: 8 days, home for 4 days, back to a (different hospital) for 7 days. So, like your son, I was on an upswing and they sent me home. Then I had a fever again and really felt lousy. My husband drove me to a different hospital and they admitted me. They ran tons of test and I think the best we can figure, I might have had an infection in my pic line (the IV port that the first hospital sent me home with so that I could keep having antibiotics). I have been told that friends came to visit me in the 2nd hospital, but I have absolutely no memory of their visit (I do remember the people who came to the 1st hospital).

When exactly you could stay seated, walk, etc?

I started walking with my IV pole around day 12 or 13. I could stay seated, but I remember that my head felt like there was too much pressure inside. My brother once tapped me lightly on the head and it set off a cascade of pain. Just touching the roots of my hair was painful. I am a huge believer in walking, so at home (day 20 or so) I started walking up and down my street with a walker. My infection started in my left ear, so it quickly spread to my right ear and left me deaf. It sounds like your son can hear, so that is good.

Do you know what was your treatment during hospital?

Broad spectrum antibiotics through IV for infection. I know that they tried different neurological medicines for the headaches, but I don't think they helped. At home, my neurologist prescribed gabapentin for headaches, but I tapered myself off of that as I did not feel it was helping.

How was your recovery phase?

I went to an acupuncturist for the headaches, starting around the 2 month mark. I am not sure if it helped or time just helped. They lessened and then went away around the 6 month mark. I kept walking. Five months later I took a big trip to France/Switzerland with my family, throwing away my walker. still nap daily but I have done that for years. I walk 4 miles a day now. My eyes have taken over the balance function of my ears. I have had 2 surgeries, one for each ear to get a cochlear implant so that I can hear again. Life is good!

Our thoughts and prayers are with you and your son!

2 likes
Reply

Thanks for sharing. Now they tell me there is some damage in ears, but I dont know how much. He is hearing almost normally with one side and only loud sounds in the other. They tell me we will see after everything ends if he is candidate of cochlear implants.

Can you explain me everything about your experience with cochlear implants, please.

I feel completely guilt for this hell.

Reply

Oh honey, it is really, really not your fault! I went to an ear specialist (one level above an ENT) on Tuesday and he sent me home with drops. I was in a coma just 16 hours later. Bad stuff sometimes just happens. You are a loving mom and that is just what your son needs right now!

I will also tell you that I had 2 ear surgeries as a kid (for a different problem- cholesteatoma) and saw an ear doctor every 3 months for most of my growing up years and through my kid eyes, it was a positive experience (I got to pick where we ate out that night and I always picked IHOP).

What country (or state, if the US) do you live in? How is your son today? Home or hospital? My guess is that he will do just fine with one hearing ear (I was deaf in my left ear for most of my life, was valedictorian of my high school class, worked for IBM, etc). It's going to be okay!!

1 like
Reply

Did you recieve the Pneumovax 23 vaccine?

Reply

Did you receive a vaccine?

Reply

Hello. I totally can relate with your fears,worries and anxiety as my daughter at age 40 days had bacterial'meningitis and never found out the exact bacteria that caused it.

We stayed for 10 days at the hospital with claforan and'ambicilline antibiotics. My baby responded well from day 2. she then ate well,made her first smiles. At day 10 we went home.

The next day she had fever and vomiting again and she was not responding. so back to hospital again with another lumpar puncture and meropemen antibiotic this time for 14 days. She had brain ulrasound which was ok. We went home again with a pretty good state for my baby.

After a week at home she raised fever again,vomiting,not responding. Back to hospital with meropemen again for 16 days. She had an mri which was normal. however as a mum,i was seeing that my baby'wasnt as before. legs were not moving much, hands and fist were closed tight, didnt drink much milk.

When returning home i had so many worries. We took her for eye and'ear exams. Thank god all ok.

she'needed time to fully recover. she is now'one'year and a half and full of energy. walking from 13 months old. She can say a few words only and this worries'me. Her fine motor skills seem a bit'behind for her age. Am also worried because she is sooo energetic. I keep thinking that maybe these are some'kind of brain trauma. However she is a happy child that'develops normal so far.

I pray that your son is as lucky and blessed as my daughter.

Best'wishes to you too. stay strong for him!

1 like
Reply

Thank you very much. I hope the very best for your little angel.

Today they found the bacteria serotype, it is S. pneumoniae 19A. So I hope that with the new vaccine Pneumovax23 my son may have some protection. I don´t know if they can apply it now or when. But I need this hell ends.

1 like
Reply

Today they found the bacteria serotype, S. pneumoniae 19A. Did someone receive the Pneumovax 23 after or during meningitis??

Reply

I received pneumovax about 2 months after leaving hospital, because I was getting a cochlear implant which makes one more susceptible to... meningitis.

1 like
Reply

While you were on the recovery phase, did you feel headache or earache?

Sometimes when my son is trying to seat he feels both. Do you thing it is normal?

Reply

I mean, he is still at the hospital. Doctors are just watching him. All studies are clean and he is better everyday, but when he says I have headache or earache I cant think anything else, but meningitis. It is a horrible feeling

Reply

Well, my boy is finally at home. Some hearing damage at left side, not sure how much as tests will be done monthly. Some problems with motion. He is trying to walk, but he seems like a newborn deer. 4 days ago he coulnt remain seated, but now he can almost normally. Problems with the tongue, I think it is because all antobiotics he received, but not sure. His behaviour is almost normal, but a little more agressive.

Now my fear is about hidden sequels. At least he is "fine" and with us again.

Reply

Well here you have an update:

my boy is back to his normal life. He is now in the school, he can run, jump, play anything. Balance is almost normal. Sometimes he stumbles, but he has a normous heart.

Lamentably, he lost hearing at left side . However, the other side works normally (from 30 dB). We are trying to quantify damage to know what apparatus he needs.

After a month of hell, he is fine now. And my message for parents is that: in some cases recovery may be almost total.

Reply

You may also like...