Whats the future for my boy?

My now 9month old son contracted bacterial meningitis just over 3 months ago. He spent 3 weeks in hosp. At first he had no neck control and was like a newborn again but has since mostly regained that. At his most recent app with neurology they said his cognitive skills r good but his motor skills are not so good as he cant sit or weight bear (he has increased tone in his legs) he can roll to 1 side but not the other. He has regular physio. He will be getting another mri in March wen hes around 1 and the neurologist thinks there may be some scarring which was not seen on the last mri wen he was an inpatient.. He has also recently started babbling a small bit which is good. Also at his hearing test 2months ago it was found he had hearing loss in 1 ear and he has another hearing test in 7 weeks to recheck. I would like to know if anyone has had similar after effects.

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  • May I say , the future is bright for your boy.

    The reason I take such a liberty to say so is because , here you are writing and asking for support so soon after his being ill. You have found an invaluable source of support and information here.

    I will say however , that the path you your son and all your family will lead has altered. I wish not to cause unnecessary concern, but neither will I offer an opinion of "everything will be OK". Following meningitis is an unknown quantity from my experience. I have posted on my "blog" my first account I wrote regarding our experience.

    I am happy to communicate via direct messaging if you wish also via comments back and forth.

    You mention hearing loss, I know it is a difficult aspect to understand however has anyone mentioned the possibility of hearing aids or cochlear implants ? I can offer you access to other information we found useful if you wish.

    I wish you and your son well , Take care.

    Gavin Kelso

  • thnks for your reply no one has mentioned anything re: implants yt but his next app is on 15th feb for another hearing test. Did u or ur child experience this also? x

  • Gavin - are you still available for questions and discussion? My son has a similar case.

  • Hi, sorry for delay in reply. Fire away, I will do what I can.

  • Gavin- my son is currently fighting this terrible disease and has lost his hearing. I blame myself amd the pain is overwhelming. We are fighting complications in order to get through to CI. CI was July 25, then Aug 2, and now not scheduled due to a 5-week run on more antibiotics. Any word on this? His balance is poor of course but other signs are good. He's only 4 turning 5. I'm gutted.

  • my little boy lost all his tone and hearing due to having meningitis at 3 months he is seeing a physio and has improved so much he is still a bit behind compared to children who have not gone through so much so young but he's getting there, he has hearing aids and has been referred for the cochlear implant. i think thats pretty close x

  • What age is ur son now? Yea i expect my boy to be slower buts thats small price to pay. Do they do hearing aids for babies as my boy is stil only 9months x

  • my little boy is just over a year and yes they do have aids for baby's my little one has had then since 10 months, you'll find you should have lots of support from your local deaf support team i wouldn't be without them have you been told your little one will have aids x

  • Thank you- I've reached out to the Deaf community here. Waiting for a reply.

  • Yes- this is close. How long is the gap between the recovery amd his implants?

  • Hi My son had menigitis over ten years ag. He got it on our wedding day. We were told he would die and it was the worst time of my life. We felt our world had ended. Alex had foot drop and is now in a wheelchair, kidney failure, learning needs like memory loss, poor concentration, unable to read and write like before, tell the time etc. He lost a lot of hearing and so much more...but now he is a star. he has won so many awards for his volunteering work and determination to get on. Please believe me when i say life goes on and gets beeter. Meningitis means you just have to work a little harder at life. xx

  • I believe that parents supporting with unconditional love their children give them the strength and courage they need to make it through.we influence each other so parents make sure to avoid worrying too much and make them feel loved as they are,a living blessing

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