Getting frustrated

[Jason2208]

My son Jason age 9 develop bacteria meningitis - group B from surgery. It's now 3 weeks even though he has shown signs of improvement it's seems he still has headaches. His eating has improved as well as sleeping for the most part. Not perfect yet but getting better. He still shows signs of no energy and shows signs of discomfort. Unfortunately my son is special needs and cannot tell us what hurts. I was wondering how long can this last and is he probably in discomfort from headaches. He was on antibiotics for 3 weeks in hospital and blood culture was perfect when we left hospital. Please help as I cannot find the answers for duration on bacteria meningitis

[StrawberryCream]

Hi. I am really sorry to hear that your son contracted BM following surgery. Thankfully it sounds as if it was recognised fairly quickly and treatment with antibiotics started. He will no longer have the infection in his body however what he has been through is a serious infection affecting his brain. The recovery from this is not like colds and flu etc and will take much longer. With meningitis it is often months and for some much longer with not always a full symptom free recovery (eg headaches can be an ongoing problem). During his recovery he will need to rest and sleep more and this is for his body to get over the nasty illness he has had to fight. He is likely to be more fretful and needing of comfort which will be difficult for you both as he is not going to be able to tell you how he is feeling and if he has a headache etc. He has got age on his side as once the infection has been successfully treated they often seem to recovery much more quickly than an adult might. Meningitis can damage hearing so I hope they have arranged a hearing test for this to be checked. If not I would advise that you ask your GP to arrange one to be done. Even if you think he can definitely hear it is still best to get it checked because the BM could have just caused a reduction to some of e hearing frequencies. Three weeks is extremely early when recovering from BM and at the moment you still need to take things day to day. Some days your son may seem better and manage more but then the next couple he is lethargic and needing to sleep because the good day exhausted him. Make sure he has plenty of time for rest and quiet time. Not to much happening or too many people visiting at a time. Gradually over the next few weeks you will look back and realise little bits of improvement.

I would encourage you to ring the Meningitis Now helpline as that have lots of info that explains BM and the recovery etc. also they are a great support to just speak with about what has happened and there are other things that they offer that you could access too.

Best wishes

[Jason2208 in reply to StrawberryCream]

Thank you so very much. I was so scared that he was getting worst. 2 more questions, could there be possible build up of fluid on the brain or Hydrocephalus ? And where can I find the number for help line to meningitis ? Cannot thank you enough for taking the time to answer my questions.

[StrawberryCream in reply to Jason2208]

My thinking, but I am not medically trained, is that if Jason was going to develop hydrocephalus it would have happened whilst he was ill with meningitis. But if you are worried then I would advise you to take him to your GP asap or seek medical advice sooner if you think Jason is getting worse. But he is likely to have a headache for some time yet and as he is unable to tell you if he has it may be best to give him regular calpol for a couple of weeks to keep it at bay. I was on painkillers for headaches for quite sometime after discharge.

The meningitisnow.org.uk website has lots of helpful information but I would advise you also ring the helpline 0808 80 10 388 which is a freephone number if you ring from a landline, orange, T-mobile, Virgin, or Vodafone between 9 am - 10 pm everyday. They are a great help and support even if you just need to off load and express emotion.

[Jason2208 in reply to StrawberryCream]

Thank you so very much. Truly appreciate it

[PRae in reply to StrawberryCream]

I wish we had help like this in the US

[pinderje008]

I got bacterial meningitis following a surgery as well it was horrible 104.7 temperature and i had 2 seizures. The brain swells and your head feels heavy and it feels like something is pressing really hard on ur head. The headaches are bad i kno because i still have them every day. You need to follow up with a neurologist because his vision could be impacted like mine was i will find out soon if i have to have a shunt placed in my eyes. If your son complains of gray vision or blurry vision get it checked asap. He may be extremely sensitive to bright light or loud noises which can cause rhe headache to worsen. I wish your son the best of luck. Best advice I can give you is to stay positive and take it one day at a time. And dont let him isolate him self from him family. He needs all tue support you can give him.

[PRae]

Dear Jason,

thank you for sharing. I too am a bm survivor. It is a miracle he survived. I completely understand you frustration. I believe (in my case) it took about three months to feel like myself again. I do still get headaches. It has been 3 1/2 years for me. Thankfully I don't have seizures. Bacterial does seen a little different than viral. Long term effects are very similar. Best of luck to both of you in the recovery phase.

[clairelway]

Hi, I am sorry to hear about your son. I contracted it 7 years ago when I was 49. I found it a long haul to recover but everyone is different. I was told it can take up to 2 years to recover, but even then you can still have some 'after effects'. I was very tired to begin with and when I felt better my GP referred me to the local sports centre where they have special classes of aqua therapy in the swimming pool which helped enormously. Do not despair though as everyone is different and may recover at different rate. My consultant also referred me to Headway, and they were brilliant. They explained everything to me and I had some counselling. My husband was also offered counselling but didn't take them up on the offer, although he later wished he had. They also helped me with strategies to help me deal with things during my recovery time.

I also agree that it is best to appreciate how far you have come after such a serious infection and not concentrate on al the things you can't do. 3 weeks is extremely early.

I hope your son feels better soon

Best Wishes, Claire

[Jason2208 in reply to clairelway]

Thank you so very much reaching out to me. I truly appreciate it. It's so heartbreaking watching a loved one suffer especially when he cannot tell us what hurts. But your story is uplifting and I thank you for that

[YWurri]

Hi there, so sorry to hear about your son, must be awful for you all. Do you mind me asking what sort of surgery he had when he contracted the bacterial meningitis? I contracted it last year during a lumbar puncture for a Caesarian section. Luckily my baby was unaffected, but I spent time in ICU/in a coma, and missed the first two weeks of his life.

My recovery seemed slow (residual headaches and sensitivity to light for a few weeks, as well as being utterly exhausted for months (though looking after a newborn and a 3yr old would do that to a healthy person I'm sure!). I would agree with others that if the headaches continue for a few weeks then consult a GP.

I've been very lucky and have no long-term after affects. My immune system has been low, but again that could be down to the kids. I really hope Jason is as lucky, and feels better soon.

[Schmooschmoo]

Sorry to hear your son developed BM but happy to hear he survived! I see it's been 1 month and I hope things have been improving for your son. I just thought I'd add here, for others, I have heard of similar circumstances, where in some rare cases, patients with BM have been discharged from hospital to find out that they still have BM. I've read this on quite a few boards now, so although rare, it is possible further antibiotics are needed to completely eradicate the bacteria. So if any survivors are worried, ask your medical professional if it is possible some traces of bacteria remain?

Wishing your family all the best.