My little prince

My little boy was diagnosed 4 days before last christmas (his first christmas) with meningococcal meningitis. Our world was torn apart because we were told that his survival chances where not great but my little boy put up a big fight and came out of it. He was discharged late christmas day and then the community nurses took over his treatment. Since then his behaviour has escalated to the point that he will full on bang his head against concrete floors and brick walls so we are constantly trying to keep him safe. Our local hospital Alder Hey put it down to temper tantrums but as a parent i know my child and i know that since having meningitis my child has changed. His speech has not developed, his understanding is not great. Has any other parents experienced the same or similar?

7 Replies

  • I'm sorry you have had to see your little boy so poorly, I'm so glad he pulled through! I put something on here the other day and it is quite similar, my little boy also had meningococcal meningitis a few days after he turned 1years old, he is now coming up to his 4th birthday. Since he has the illness he has has several hearing tests due to his speech and his's so hard to know whether or not it's developmental or whether the meningitis is also a factor as the hearing tests seem to be clear. He has also said a few times about having headaches but they don't seem to be regular so I haven't taken him to see the gp. All I can advise is to continue reaching out for help...I've done a lot of internet scrolling and there are lots of side affects that can be long term some of which you have mentioned!

  • That's all i seem to do it fight these days for what i know in my gut to be right. The local hospital don't seem that bothered but he does this head banging thing, where he can drop to the floor and really hurt him self but the hospital put it down to his age as always. Did your boy do anything similar? I am glad your little boy is going good

  • Thank you. I can imagine how your feeling my sons speech is similar and the speech therapist is saying he hasn't got the concentration to be referred (she saw him at nursery with all his friends around tho) I believe early intervention is always better! I dont think he ever head banged, is there a pattern to when your your little boy does it? Could it be frustration that he can't communicate, you mentioned his speech hasn't yet fully developed? Try to stay positive I understand it's easier said than done tho :)

  • He can do it if he's told no or just do it randomly. It's like seeking a pain that isn't there (if you get me). Yes his speech is slow, we are currently on the speech therapy waiting list but there is a long waiting list in Liverpool to be seen. I've been through it with my little girl as she was slow developing her speech but she has autism and this is a whole other playing field. I just feel that once my little boy was treated that was job done, he was meant to have had 4 check ups by now and has only had 1. It's really frustrating

  • Bless him!! Thankfully the health visitor actually saw my son and referred him to the speech therapist but then they dont even seem can't win! Well hopefully the waiting list will hurry up for you both. That really is terrible that they haven't insured his follow up appointments have been complete!! I can imagine you feel quite alone. I don't want to put a spanner in the works but I have a close friend who's child has autism and he used to bang his head a lot! It only came to mind due to you saying your little girls has it...

  • It just seems these days that we have to fight to get our children assessed for illnesses or for follow up appointments. Anyway, thank you for listening to me rant and offering advice :)

  • Hi lou4 , I'm sorry to hear you son was so poorly but glad he's pulled through X

    I had meningococcal septicemia at 20months old and I was also treated at alder hey , doctors told my parent I had a very slim chance of survival and if I did I would 99% be serverly disabled .

    I was in intensive care and pulled through

    I had no disabilities from my illness and lost no limbs

    The only thing now is I suffer with tinnitus which I've read online can be an after effect of this illness and can appear at any time not sure how true this is .

    Also with the head butting thing if it makes you feel any better I have 2 boys one is 7 but he used to do this out of frustration and my youngest son is approaching 2 and he's took to bending down and butting the floor out of frustration and sometimes the wall.

    Both of my boys have had a healthy life so far.

    But If you have a gut feeling about your child then I back you 100% to follow it up because only you know your child inside out and what's out of character ,

    Even if it turns out is it just his age and temper at least you'll be at rest that you know he's ok.


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