Any Parents of children who had Bacterial Meningitis and Septicemia?

[jessxhope]

My son caught Men B at Christmas aged 4 months, he nearly lost his life but luckily came through the other end and survived, just looking to see what other people are going through 6 months later?

[paul1224]

hi jess

so sorry to hear about your son hope he did not lose any limbs ( hands feet etc)

i had it at 47 a bit off difference i know in 2003 november

close to ten years on still having lots of problems

your son has got his age on his side also they seem to cope a lot better

i am sure as time goes on he will sort him self out

all i would suggest is talk to the trust thay are the leading experts in this field but every patient is different

They are there use them for any thing they are wonderful people

drop a note here every so often so we know how he is doing

all the best

[jessxhope in reply to paul1224]

Hi Paul, Thank you for your reply. He was very lucky and didnt lose anything, he had barely any rash but still was extremely severe, we luckily took him straight to hospital with just a temperature and it was only hours after he was there they discovered it was Men B as it was not obvious without a rash. It did come out after a few days but luckily they did an amazing job and whilst he was in a coma on life support managed to stop him losing anything. He seems to have lost a slight bit of hearing in one ear which put his balance off slightly, but the older he gets the better it seems. He is nearly one now and has come out the other end amazing. The trust seems like a fantastic thing to have. It was all such a whirlwind at the time that we didnt get chance to speak to them and now it is all settling down i think we will speak to them. Im sorry to hear that you suffered with this terrible disease. I hope you are getting better, I agree with you about him being young being on his side, he wont remember it luckily, but i think its something i wont be forgettting!

I hope you are well

Jess

[paul1224 in reply to jessxhope]

hi again jess

i am sure as time goes on your son will cope it is something i am sure he will lern to live with

i to was taken to hospital with no spots at all in fact the doc did not know if i hd a chest infection a mild heart attack or stroke

the doc put me on very strong anti biotics .I went in about 1am and it was 11am when the nurse asked my wife if i had a rash when i went in ,i thought my wife was joeing untill the hospital should me the pics they had took

i was shocked

i had a month in a coma i was very lucky that a doc i saw for something else came and he got me moved to his ward at a closer hospital which helped my family i came out of the coma deaf and had claw hands so i had carpel tunnel op on both hands at the same time

but i must be boring u know sorry

i do feel sorry for parents of young children as the child cant expain to u how he his and what he is feeling so i think the more infomation that is passed around the better

i did have 3% of my hearing come back in left hear but totaly deaf in right one

as i said keep us informed how your son does in his future life as its nice to hear success storys

best wishes to you your son and husband

paul

[pamelafrance in reply to paul1224]

Hi Paul, I got it in 2012 age 66 yrs. Have loads of problems profoundly deaf, off balance when I stand, have tinnitus, lots of pains in limbs etc have a lot of medication and The Brain Injuries team where I live have been fabulous. I do feel terrible about families who have lost a loved one and also feel for the survivors as well as its not easy. God Bless to all who read this.

[paul1224 in reply to pamelafrance]

hi

i have all th things as after-effects as your self I so feel for children as most off the time they find it so hard to ex[lain what's wrong i know off a lot that the parent find out to late

my system is so down i get what ever id going colds flu etc and antibiotics take so long to work

please keep in touch with how u are doing its so nice to chat with others who have a bit more understanding on the subject role on some warmer and dryer weather

i take it u are in france how do they see the virus there

i live just out side the city off lichfield in central england

pleases keep in touch

paul

[pamelafrance in reply to paul1224]

Hi Paul

Im not in France im in Yorkshire france is something I just put for the site i.d. but yes roll on the warmer weather as my hands and feet often feel cold. Went to hospital today for my tinnitus and they have loaned me a machine with nice soothing sounds on to listen to so im hoping this horrible tinnitus I have goes away.The antibiotics I take have so far protected me from catching anything

else touch wood..

[SilverCharm]

I am 39 and had aseptic meningitis at christmas. spent 2 wks in hospital. at 3 mo I had very few side effects but now close to 7 months out I have a low grade headache as a constant companion. I was very fortunate to not have any other lasting effects.

[jessxhope in reply to SilverCharm]

Thank you for your reply, i am very glad to hear that you do not have many side effects, a constant headache can not be much fun but it could have been a lot worse so you are very fortunate. I hope you are doing well

Jessica

[sanaakram]

I hope your Son is doing well. I am glad to hear how he is doing after going through so much.

My daughter had strep b menin (becterial) at the age of 5 weeks. she spent 2 weeks in PICU at Oxford. she has lost her eyesight completely and she has insipidus diabete(Hormonal disorder). She has also confirmed Brain damaged according to MRI scan.

Nobody can tell that she is been through so much. she is getting better and better.

Hope your Son is doing better and God bless him.

[jessxhope in reply to sanaakram]

He is going very well thankyou, i think its affected me and his dad more than him! you would never know he has ever been so ill he is an extremley happy little boy. I am sorry to hear how much your daughter suffered, My son also had Men B bacterial along with septicemia/septic shock. It is lovely to hear that she is getting better and better, as Tyler (my son) is going from strength to strength and he joined nursery at 6 months old for 2 days a week which has done him the world of good. He loves it and being around other children.

It is such a terrible disease i hope they get the vaccine soon.

Hope you are all well

Jessica

[jleblanc7486 in reply to jessxhope]

Hi Jessica, it is certainly good to know there is a possibility of light at the end of this dark tunnel. My grandson was rushed to the ER last Thursday 8/25/26 due to symptoms. Spinal tap confirmed Men B and was placed in PICU here in BR, La. Seizures soon followed with erratic temp. Dr' had him on 4 seizure meds and antibiotics. EEG''s up until now showed electrical seizures present. Today's EEG showed no signs of seizures but Neurologist was concerned of lack of brain activity. We are hoping this is due to meds and not any damage. CT & MRI did not show any sign of abscess on the brain. He was intubated due to number of meds and currently still is but he is breathing entirely own his own. Seizures have subsided and he is now gone 28+ hours without seizing. He is becoming a little more active when Nurses are interacting with him. Dr's have started reducing seizure meds to see how he reacts. Plans to remove breathing tube tomorrow. The utter feeling of helplessness is beyond any words as you are certainly aware and the feeling of not having the answers when my daughter asks if he will be ok is unbearable. We cannot ask for any better medical staff than we have. They have been more than just a Med staff, the nurses come by on their days off just to sing to him.

Looking for a highlight to end my day, thanks for your post.

Jason

[Danidiva]

My Daughter contracted Meningitis at 3 weeks old (she is now 4 )and we were told she would not make it, but she did as she is a fighter and super sweet (most of the time) she has been left with many disabilities and problems due to the Meningitis, we started noticing problems from about 6 months onwards. Have you been offered follow up appointment etc?

[jessxhope in reply to Danidiva]

I am glad to hear that she is well, It is such a shame, We have had follow up appointments and he seems to be doing fantastic. His hearing in one ear seems worse than the other ear so this is being investigated and due to the damage on his lungs he has now developed a bad form of asthma but other than that he is doing fine. We were also told he would not make it and now 8 months later we are 2 weeks away from his 1st birthday! x

[bubus]

Our 10yr old son haydn contracted MEN B may 2011.Haydn had been poorly all day with a temperature and a pain in the muscle of his leg,little did i know that muscle pain was a symptom of meningitis.Inoticed a purple mark on his chest and just knew so called 999,he was rushed to hospital then later put in an induced coma and taken to southamptom PICU.We were in total shock and told haydn had only hours to live,but he pulled through the first night.Haydn was put on dialysis as his kidneys were failing and slowly as the days passed his limbs started to turn black due to the disease.During the six weeks we were at his bedside haydn had both legs and his right arm amputated,and was due for surgery on his left arm the following week.Sadly Haydn got an infection and his organs were failing and we were told he probably would not make it through the night.Haydn passed away in my arms the following morning.After watching our son go some traumatic things for 6 weeks we know he was so brave and put up a tremendous fight.We love and miss him so much xx Haydns mum xx

[jessxhope in reply to bubus]

I am so sorry to hear about your loss, It is so brave of you speaking about Haydn i know i didnt lose Tyler but i still find it difficult to talk about what happened as we nearly lost him. He put up such a brave and hard fight against such a terrible disease. Im sure you are so proud of him. I really do feel for you hun, i cant imagine what you are going through i can only relate slightly.

I hope you are doing well and if you need to talk please send me a message,

Take care

Jessica xxx

[maineknitter in reply to bubus]

Bububs, I'm so sorry to hear of your loss. I too got bacterial meningitis in 2011. I so wish it was different for you and your family. Haydn was strong, brave, and a fighter. He is gone too soon. Thank you for sharing his and your story.

[maineknitter]

I am 2 years out from bacterial meningitis and now have chronic, near constant migraines. I wish things were different some days, but have learned so much about myself and my capacity and strength in the last years, that I am at once angry and happy/that's not the right word, that I got meningitis in the first plaace. The migraines cause near constant pain @ 8 out of a 10 point scale, fatigue, loss of relationships, memory, focus, concentration and other problems. The medications make me have a skin rash, insomnia, and have a heavy head as well as a migraine that may or may not go away with the medicine.

I'm happy to hear your son is doing okay-ish. You may not realize anything is off for a long while. Hopefully, he makes the regular milestones at the usual range of ages for them. But, don't be surprised if they take a little longer. Be open with him about what he's been through. I have a celebration on the anniversary of me going into the hospital as it was a good thing for me, maybe you could have a little celebration in your family to mark either his entry or release from hospital day, so that he is aware and yet it is in a positive light, or at least neutral. That way since he will only know the way he is, it will not be that he is less than or bad or something because of getting so sick as a baby.

For us adults who get this, we know what we were like. I had a good career, and now I can't work. I had good relationships with my family, now not so much. I had lots of focus, detail oriented, and felt great most of the time, now not so much. Anyways, without the other to compare it with, I wouldn't know what I was missing. I would only be me, and how ever I am would be how I've always known me to be. But, because of being 36 when I got this, the comparing to what was has been a really hard thing to change. Finding my value as I am now has been really hard in the last two years. I identified as my job, which wasn't the healthiest, but at least I knew who I was. I'm finally beginning to figure things out again.

Anyways, this is getting long and lots more than I intended to share. I hope all continues to be positive and good for you and your family.

[mummy3man]

Hi,

I am new to this site and the forums.

My son developed BM at just under 4wks old last May 2012. No rash at all. thanking god he responded well to treatment and had no long lasting side affects that we know of and is a happy lively boy now.

Reading all your stories i feel blessed that this is the case and am so sorry to hear the difficulties you and your loved ones have/are going through.

my son has developed a cold, as is the season and it sends me into a panic and i wonder when the anxiety will end?

We have had no follow up appointments other than a hearing test that i pushed for. The health visitors didn't seem to be bothered nor did the GP's. I have had no support and still feel vulnerable with questions unanswered.

This sounds really selfish considering what others are going through. But i feel that i cannot move forward from it and was wondering what sort of follow up and support others have had.

So summing up a reply for you Jess, six months on it all seemed quite surreal for us as luckily there seems to be no side affects. over twelve months on, again no side affects although like you as parents i feel the emotions and anxieties are still just as strong.

[ksharp in reply to mummy3man]

Hi, something that i feel we have learnt as a result of our experience with BM is that there is an awful lack of advice, knowledge, aftercare or support for the sufferers & the family involved. Meningitis Now are brilliant, but it concerns me greatly that meningitis still isn't treated with the severity it serves to it's victims by the medical professionals or the government. There is nothing worse than suffering such a traumatic experience & not even understanding why, how or even just a basic bit of knowledge & support. I know how you feel.

[emmamartin]

Hi,

As above poster i'm new to this site and the forums.

My son developed pneumococcal men at 6 1/2 weeks on 9/3/2012. We were at a friends house in bristol when he was taken ill. We was rushed to bristol childrens on a blues and twos run by a a paramedic driving a doctors car. we were seen immediately on getting there and taken straight to rescus. He was admitted at 11.30 on the tuesday night and he stopped breathing 3 times in the time that we were in rescus so they ventilated him. all tested were done and finally transfered upto PICU at around 4.30am on the wednsday. he was ventilated wed/thursday and weened of of the friday and transfered to a side room on the childrens ward. We transfered up to stoke, to be nearer to our 16 month old little girl a week after been admited where we stayed for nearly another week. He was on anti-biotics for nearly 4 weeks in all.

if we had of been at our home we surely would have lost our little boy as we lived a bit out in the sticks, so might not have got an ambulance in time or even realised he was poorly until it was too late.

He is now nearly 4 yrs old, he has hearing loss both sides with 2nd set of gromits (might be having a 3rd set), astigmatism (sight) and is showing traits if autism and or adhd, going through referal process at minute to have behaviour assessment. i am fighting to get to the bottom of my little boys behaviour, fingers crossed yours doesn't have any problems but if he does never stop fighting and don't let people make you believe its all in your head (which is what i've been told about my little boy) and go with your gut instinct to get the help he deserves.

hope your little boy come through with no problems

[kerry240491]

Hi my son had mingacoccal meningitis and septecemia in may this year lucky he's made nearly a full recovery he was only 15 months old when he fought of this terrible desease, the only after effect that I have noticed is he's not as great of a eater other than that he seams to be hitting his mile stones.