Long term effects of childhood meningitis. Would like to Hear from others.

[ksharp]

My son was diagnosed with Meningococcal septicaemia at 7 months old. Although he was very poorly, he responded well to the antibiotics and thankfully made a full recovery, free from complications. He did have sleep issues for a couple of years afterwards- waking, terrified & screaming, almost paralysed. Our GP believed this may have been some form of post traumatic stress disorder.His initial hearing test came back clear & no concerns where raised. However now my son is 5 years & he started school in September, some issues have been brought to our attention. He has difficulty with his speech, he dribbles a lot of the time (always has done since the meningitis) he has difficulty writing ( but he is left handed, so this could be the challenge here) he's very much a live wire, constantly has an energy about him- resulting in a lack of concentration in more detailed tasks. His teacher has raised concerns & had asked us to arrange a sight & hearing test. I understand there could many reasons for these issues, but I just wanted to know if anybody has experienced effects like these- years down the line. I find it hard to believe that we escaped this devastating illness, without any side effects. There isn't much info available, or indeed many facts known regarding this, so I would be very grateful for anything at all.

Kayleigh

[StrawberryCream]

Hi Kayleigh

Am pleased to hear that your son was such a strong lad physically that he managed to survive the meningococcal meningitis when he was such a young baby. It is an extremely nasty life threatening illness. I do not have experience of a child contracting it as it was me as an adult that had BM & S. I don't think it is unusual in children for their problems to not be apparent until they start school and then have some problems with learning. Obviously he was very young when he had Meningitis so it is impossible to know if he would have had some difficulties anyway but also there is a big possibility that the illness has resulted in some problems too. As he only started school in September it is also difficult to know what whether to be concerned already or not because I don't think it is unusual for 5 yr olds to struggle with their writing as they all develop differently and some are later with that skill than others. The constant energy and lack of attention could be a problem which may have been caused by the damage the illness did to his brain. And that could be a reason why he is not developing his writing and fine motor skills because he can't focus his mind on those things. I would very much suggest that you go to the GP and ask for a referral to a Paediatrician for him to be assessed. As the school have raised concerns they will no doubt be supportive of an assessment as the Paediatrician would request info from the school. Regardless of how the difficulties have been caused (whether it was the meningitis or he would have developed these difficulties anyway) is never really going to be known for sure but the important thing is that he gets the difficulties identified so that he can get the appropriate support and help to enable him to be able to access learning.

If you are in the UK then I thought that all Reception age children are given an eye screening test at school by the school nurse but I don't know what happens in other countries. If not or for a more indepth check then it would be best to take him to an opticians for a sight test (again in UK this is free for children). I am wondering if you have noticed a problem with his hearing because you would probably know if you have had to be speaking to him in ways to compensate for hearing loss. If not it is probably it also connects with the lack of attention he gives to people speaking to him again associated to the poor focus and attention. A Paediatrician would arrange other test like a hearing test if they felt it necessary or again you could ask your GP.

Best wishes and hope my response of some help

[StrawberryCream]

Another thought - Meningitis Now have lots of really helpful booklets and information sheets which explain the problems that can be caused by Meningitis. You may find it helpful to contact them and they can send you the relevant ones. Also there helpline is great for info and advice as to what to do. x

[ksharp in reply to StrawberryCream]

Thank you for your fast reply StrawberryCream. You've been a great help.

We have been extremly lucky, I thank god everyday. Especially when I read some of the members stories - imcluding yours. I hope that things are getting easier for you.

Yes, we do live in the UK. I'm going to take my son to see our GP & explain my concerns. I do believe as you suspect, that his lack of concentration gives the impression of hearing difficulties, as i've never noticed hearing difficulty.

I'm Also going to take him for an eyetest (just to be sure).

I've requested some info from Meningitis Now too.

Thank you again. X

[StrawberryCream]

Your son surviving such a major illness must make you feel incredibly lucky to have him still to love, cherish and relish in his growing up when it could have so easily ended in an instant. I would also ask your GP for a paediatric referral because it does sound like he possibly has Attention deficit and hyperactivity type problems which the meningitis may have caused. I myself suffered a frontal brain injury and have problems with concentration, lack of focus, easily distracted etc. Pleased that are going to get some things checked out. Meningitis Now are a great organisation with lots of helpful info and advice. The helpline is also very supportive if you are worried, concerned or struggling through a bad patch. Best wishes xx

[niknak36]

Hi kayleigh like you my daughter had meningitis at 6 months old, but we are still not sure exactly which one she had if not both bacterial or viral as we were told she was half an hour away from not making it when we finally managed to get her seen as we were sent home the day before with a virus as the rash amd temperature went away,after spending time in hospital and having all the antibiotics they give thankfully she made what you would call a full physical recovery but like you I am now wondering if it has affected her mental health.she is now nearly 10 years old and over the last 4 or 5 years her behaviour has slowly got worse she has a very short temper and cant seem to control it or calm down like most children if they have a tantrum over something then it is soon forgotten but tylers can go on for hours she is also losing friends because of it as they don't want to deal with all the drama and I worry she will become depressed because of it,however she is a bright girl learns quickly and is very eager to please people but gets very stressed if she is told off or if things dont go her way.I have asked for more info from meningitis now and her school have helped me refer her to the local child health department but im still waiting for an appointment.it is nice in a way to see there are people out there with similar problems as most of the posts I have read are from older people and it does make you feel alone,I wish i had more help at the time.I hope you get the answers you need and your little boy is ok.

Nicola

[Emadd]

Hi, I just wanted to pop in here with some promising feedback. I am now 32, but had bacterial meningitis at 18 months, was in a coma for 9 days. I am a university professor, received my PhD in 2014, a master's a few years before, and graduated with honors in economics from a very good undergraduate school. I do have learning disabilities likely from meningitis, but was able to manage them with good home support and good teachers in small class sizes.

[MsPlaid in reply to Emadd]

Hello! Just finding this site - as an adult who had bacterial meningitis at 2 years old, and was in a coma for 12 days - and my parents were told I'd have brain damage (my older sister still says I do, ha!).

I had a relatively normal childhood and adulthood afterwards - with medium-amount of hearing loss, balance issues (had to learn to walk and talk again as a child, I'm told) - but at age 50 I'm really struggling with concentration, executive function, and most other ADHD symptoms - and am concerned at how invasive these issues have become in the past few years, after a lifetime of being manageable.

Emadd - I know you posted this 6 years ago - but have you or any other adult survivors of bacterial meningitis had symptoms increase as you get older? In the past year or two, my balance has gotten worse (can't balance on a bicycle anymore, and mild tinnitus started about 2 months ago).

I'm also much more emotional/anxious and unfocused than ever before - and am very curious if any of this stems from damage caused by the meningitis?

Thanks! Jenn

[Lesleyandjoe]

Hi, my son had pneumococcal meningitis and septaciamia at 9 months. Following recovery he dribbled ALL the time, in fact he only really stopped about the age nine! I often wondered if it was due to meningitis or being intubated while in intensive care...