3 yr old post meningitis

My son is 3 years old now. He had pneumococcal meningitis at the age of 1 and had 3 hours of seizures.He had issues with his heart functioning and struggled a lot to survive. He was also operated with a VP shunt for hydrocephalus which he acquired because of meningitis. But the first surgery was a failure and he was operated again after 3 months. IT was after this he moved his eye balls. He acquired meningitis during the second surgery and was again under antibiotics for 4 weeks. He had total delay development i.e he did not even have head control at the age of 1 yr 3 months. He also had poor vision. Now its 2 years that he had acquired the first episode of meningitis. We are giving him Occupational Therapy, Physiotherapy and Vision therapy all these 2 years. HIs improvements are - 1) gained full head control 2) able to sit for 30 mins - but can get up on his own. He is trying to getup but unable to do. 3) producing sounds like sighs and coos 4) able to recognize people around him and smiles at them 5) his vision is completely normal now. he is able to follow and track people and toys.

I am much worried about his fine motor skills. He is v much disinterested in activities and does not grab or touch things. SOme doctors say that since its 2 yrs from the time he acquired meningitis, it will be v minimal growth from now on. Is that so? All these days his progress was v v slow. But now he seems to be v active. I hope he will show a good progress from now on.

PLease advise on what other things I should do for my son to improve his cognitive skills. Please also advise how will be my son's development.

11 Replies

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  • Krithika I am so sorry to hear that your precious son has had pneumococcal Meningitis when he was 1 yrs old. I am a little confused by your post as to what was happening and when and whether or not your son was having some health problems before he got the meningitis? If I have understood correctly he was having a shunt inserted before the Meningitis as I think you are explaining that it was during the 2nd surgery to insert a shunt that he got the meningitis? Was he developing as expected before the meningitis or did he already have some problems? Was he previously able to sit and crawl?

  • Hi StrawberryCream. Thank you for your immediate response. He was fine till 1 yr. He achieved all milestones for his age of 1. He did not have any issues prior to his meningitis. He had severe meningitis which caused seizures in him(for continuous 3 hrs). As a result of meningitis he developed hydrocephalus. He was operated with a VP shunt. After 3 months we realized his shunt did not work and did a second surgery. During the surgery he had again developed meningitis and was again given antibiotics for 4 weeks(like the first time). Only after the second surgery his Intra-cranial pressure reduced and he started moving his eyeballs.

  • he was able to sit crawl stand and walk few steps with support prior to the first meningitis.

  • Thank you for your further explanations. I now understand more clearly what has happened for your son. That is so very devastating awful, that prior to contracting Meningitis, that he was meeting his developmental milestones but now he has significant delays. All I can suggest is that you keep on doing the physiotherapist therapy, occupational therapy as although after two years there may not be big rapid recovery he could still make some progress. I note that you are in India and I'm wondering whether you do still have follow up with Drs and therapists? They are the people who have all the medical information, scans and tests results about your son so will be the ones best able to answer your questions. Sadly it does seem that they have, as you have mentioned them saying, that there will now only be minimal development. I so wish I could tell you that it will be different and you son can still make much better recovery but it wouldn't be right or helpful for me to say that. But do continue the therapies as some small improvements could still happen if his body and brain are still cognitively and physically stimulated by them.

    Very best wishes

  • Thank you so much :). Despite doctors say that his developments will be minimal, I have a strong belief that he ll definitely cope up with the cognitive skills. He is much much better that he was initially. It took 2 yrs for his vision to be normal, took 9 months for head control and 5 months for him to have solids and 6 months for him to smile. He is v much stable now(physically). He has fought for his survival. On the 4th day of admission doctors asked me to make up my mind and prepare for the last custom. But he broke that out. I definitely believe he has something to be achieved in this world. I dont know how I have such a strong belief. But I want to give him a normal life. I am finding ways to stimulate his development. Thanks for your wishes. How is the treatment for after effects of meningitis in UK? Can there be any sort of help that can be provided for my son in UK?

    I am following up with his doctors and therapists. But its always a discouragement from the doctors. His therapists have always been positive.

  • You hold onto that belief because the children who do best with any disability are the ones who's parent doesn't give up and keeps on doing everything they can to stimulate their childs cognitive and physical abilities. You have been through a truely dreadful experience, sat by your sons bedside and not knowing whether he would survive the nasty meningits, and for his abilities to be so changed afterwards. You are a very strong person to keep striving determinedly for his improved rehabilitation.

  • Thank you :) Any help I can get from UK for his improvements. I am even ready to move to UK temporarily.

  • Hello krithika. I am so sorry for what you and your baby has gone through. From what you describe,you both are strong and fight for the best.

    This should be your aim for your son from now on. he might have developmental delays and perhaps some milestones may never be achieved but your little one has succeded so much after his adventure despite what doctors say.

    My opinion is ,yes,do continue all therapies,start special educatiojn as soon as possible,find ways to help him communicate,there are lots of technology available for this.

    You are a great mum,being so strong and positive'for him. Reaching the best he can,is what i have in mind'for my daughter.

    My best wishes for you and your little fighter.

  • Thank you euagelia:) How is ur daughter doing now? Few questions running in my mind.. how do we actually determine whether a child requires special education or regular education? I am asking this question because he is 3 now and cant I put him in a regular school next year. I am hoping that he will cope up to that level in an yr. I might be foolish to think so. But just some thoughts.

  • I am not aware of your country's educational system but normally there would be a team of an educational psychologist,a special teacher, a speech therapist etc that would evaluate your child's abilities,difficulties and needs and would suggest the best educational option. Perhaps mainstream school with special services within the school or perhaps a special school. Of course your opinion as the mother would also matter to take a decision for your child's best choice.

    I hope that helps! Have a good day to you both.

  • Thank you so much :) Have a good day..:)

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