Long term after effects of neonatal viral meningitus

[Festeringpumpkininnards]

My DD aged 4 was born with viral meningitis and spent 2 weeks in the neonatal ward. It was a scary time, she had breathing difficulties and her temperature was worryingly high, but she recovered well and had hit all her milestones so we haven't worried too much. We were however warned that any long term effects may not become apparent until she was school aged.

This week her gymnastics coach asked If there were any issues with her that she should be aware of due to her being very distracted in lessons. Her school teacher has also remarked on her being in her own little world, distracted and lacking in awareness of her surroundings.

We have struggled with her behaviour on and off, but always put it down to her personality/going through a phase. She is fiery, she can have violent tantrums (they've calmed down recently but she is still quick to temper/easily overstimulated), her listening skills are poor, we find ourselves constantly calling her name to get her attention and even when we make a real effort to get down to her level to make better eye contact she can still sometimes look straight through you and wander off. She is very easily distracted and has to be constantly reminded to continue with the task at hand - e.g. getting dressed. She is very high energy. She's the first to wake (wide awake as soon as she opens her eyes) and often doesn't go to sleep till 9pm, even with a good bedtime routine and an older sister that goes to sleep at 7.30pm.

I'm aware that all of the above is fairly normal behaviour for a 4 year old. Life is exciting and stimulating and there are far more interesting things to do than get dressed for example, it's the extent of it that is slightly concerning and the fact that it has been flagged up by her coach and now her teacher. It's always been in the back of my mind that she might encounter problems. I don't want to slap a label on her needlessly (e.g. ADD) but at the same time I don't want her to go without support she may need if there is a problem. In a way it would almost be a relief to have a reason why she has been so challenging at times.

Has anyone experienced similar? Most of the information I have found relates to bacterial meningitis and not viral. I've booked her into the drs for a referral for a hearing test in the first instance. Any advice, experiences or reassurance would be appreciated.

My son had viral meningitis at 3 days old, It was scary, though not as scary as what you experienced, as we only spent 4 days in hospital together, and his breathing was never compromised. We were warned that the antibiotics (they treated for bacterial as it was impossible to tell quickly whether it was bacterial or not) could cause deafness. Our son, now 20, is a cellist with excellent hearing and concentration, so in his case the illness did not cause any issues that we know of. I don't have any advice or insight, but wanted to tell you I know how awful it is to deal with meningitis right after birth.

I am so sorry that you had such a frightening experience, and that your daughter's behaviour is worrying you now. She sounds amazing though, and you seem like you will follow your instincts in a very thoughtful way, not labelling or medicating too quickly, but figuring out how to help her with whatever life throws at her. I know 2 adult women with ADD diagnoses, and they are both extremely creative, warm, and vivid people, the kind of women who light up a room just by being in it.

Clara thank you for your lovely, thoughtful post. You must be very proud of your son. My DD is amazing, she's feisty, funny, kind and caring and she had the most amazing imagination. I just hope that whatever the issue is we are able to support her properly so that she can be happy and fulfilled. That's all I want for her.

Have you had her hearing checked? We had an extremely strong antibiotic just after birth which is known to potentially cause hearing loss if used with babies.

Meningitis on its own can cause hearing loss.
I would third getting hearing checked. My ds has glue ear and a lot of what you say would apply to him when he's bad.

Thank you, yes we have an appointment on Sunday where I hope to get a referral for her ears testing. Hearing loss may explain a lot of her behaviours.

My son was ill more than his identical twin brother for about two years following it (had it at 5 weeks). I assumed it was because the huge number of antibiotics he had over a period of two months caused issues with immune system development (I have zero medical training!)
No ongoing issues.

Earth - how old is your son now? Its good that he hasn't had any further issues. That's an interesting point about the antibiotics.

I don't know if you had any support at any point after her meningitis but www.meningitis.org/ are SO helpful if you need advice and/or support with anything. Please do give them a call and speak with someone as they have a lot of experience and information. It will not matter to them that this was 4 years ago as the long term effects are long term and people still need support.

I hope you can get some answers and support.

My sister had this very young. She had other infections and difficulties as well as prem birth. She had additional factors but what I remember was she struggled a bit in early- mid primary. She took longer to mature, focus etc. In the long game she caught up over time, no additional support by secondary, mid- good GCSEs, better a-levels then a first class degree.

Sorry for the delayed reply. He is 9 now.

Meningitis can cause various after-effects for sure - I had it when I was 4, and have found the charity Meningitis Now to be very helpful. Maybe give them a ring to see what they think, or even just to chat - I've spoken with the helpline staff before & they're great. Number is 0808 80 10 388. Hope you get to the bottom of this. & your DD continues her recovery well.