Please offer support and advice. My son is currently fighting this terrible disease and it has left him with hearing impairment. He is cleared for cochlear implants but an effusion has delayed the operation. I'm praying for his hearing to be helped but I don't know anyone who had to delay the surgery. Anybody been through this?
We are in week 5 with about 3-4 more weeks to go. Other than hearing and balance, he's doing fine. I'm a mess and I'm fighting depression due to guilt, but he's getting me through.
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EGillespie
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Am so very sorry to hear that your son has had the life changing pneumococcal Meningitis. He will have a very long road of recovery ahead once he is home as is most likely to still need lots of rest and sleeps during the day as even little bits of activity will cause fatigue. There are some people on here who also have had cochlear implants. I haven't myself but the hearing in my left ear was damaged and is reduced. The hospital are clearly making sure that any problems such as the effusion is resolved so that there aren't additional complications to the surgery. I am wondering how old your son is?? It is not unusual for parents to feel guilty when there child is ill, and to wish it was themselves rather than there child. But you would not have caused your son to contract meningitis and he is going to very much need you to love him and care for him and help him on his long road of recovery especially for example adjusting to his cochlear implants.
I am wondering if you are living in the UK and whether you have rung the Meningitis Now helpline Freephone 0808 80 10 388 or taken a look on their website MeningitisNow.org.
They are a great source of information and support and you can access other support through them as well.
I've emailed Meningitis Now and they are very supportive. My son is only 4. I'm praying for help with his hearing and praying this complication won't deter CI as an option. I feel so guilty - I didn't do enough fast enough and I do blame myself amd I replay everything over and over and over. And Im scared. We are not in the UK but online services like this are helping me. Thank you for responding. I was checking all the time.
Am pleased to hear that you have been in touch with Meningitis Now even though you are not in the UK. What country do you live in?
You should not beat yourself about the not 'doing enough fast enough'. Meningitis isn't obvious initially as the symptoms are similar to flu illnesses. Often the child or adult is critically ill before its recognised as is a familiar situation that gets expressed on here. Even G.P's and A&E misdiagnose initially and send us home. The deterioration is often very rapid and becomes life threatening very quickly. It is easy with hindsight to look back and recognise points where the symptoms should have made you realize it was meningitis but at the time that wouldn't have been clear.
Thank you for the support. I'm in Hong Kong and I did take him to a doctor and then back to a hospital but all that time...I hear what you're saying, but it's such a nightmare that I replay. Thank you for understanding- it's a difficult time right now. We are still under care and it's week 5 with complications beyond hearing. He's my fighter and I'm here for him but so much suffering is hard to take for all of us.
It is a serious illness and his recovery will still continue in the months after he is discharged home. Yes it must have been an absolute distressing nightmare for you sitting by his bedside, seeing him so life threateningly poorly. I am not surprised that you keep replaying it all through your mind. You love your little boy so much and care for him so deeply that it is totally understandable why you are feeling so traumatised . It's good that it was realised that his hearing had been damaged because sometimes that isn't checked. Your son has already proved he is an amazing fighter as he has beaten the meningitis. Children can also be incredible with the way, as time moves on, that they get on with life regardless of the after effects they may have. If he is having cochlear implants, I don't think it is expected that his hearing will recover but other after effects may do so.
I'm so sorry for your son being poorly. I'm sure he will make a full recovery, sounds like he is well on the road to recovery. As for feeling guilty, you are so lucky he has made a recovery and you have a second chance. My mum, who was widowed and I felt was my responsibility, died last year from Phemuniccocal meningitis from an untreated ear infection. She left my 18 month and 3 year old daughters and won't watch her grandchildren grow up. You need to embrace the second chance you have. By feeling guilty you reinforce to me and others that have had dp family members die, hat it is our fault. I'm sure that's not what you mean, but it is a kick in the guts for those of us who have list family members or children. My daughter is now 4, same age as your son. I don't know how I would cope if she was ill. Please remain positive and be grateful that he is alive.
I am grateful and I'm sorry I hurt you - that was certainly not my intention on any level. Thank you for the reminder to be positive. I need this type of support.
You have every right to reach out to others and express your feelings. Out of something terrible, please know that there is a blessing in your situation and remember to make the most of every day. There are wonderful people on here who will give you excellent advice. All the very best to your family and especially your son.
To let you know, I had pneumococcal meningitis twice, first in my mid 40's and then 3 years later and I also have issue with hearing and balance, that in the long term, recovered.
For me, a hearing loss was of approximately 50% in nearly all frequencies, was measured in one ear straight after the illness and then again at 3 months. I was fitted with a single hearing aid which I only wore for a short time. I also have balance difficulties. Like many people with unilateral hearing loss, I preferred not to wear a hearing aid.
After having second pneumococcal meningitis my hearing was measured again. The hearing loss in my "bad ear" was only at the very worst 90%, in a few frequencies. (i.e. only a 10% deficit). This was a complete shock to the audiologist, who showed it to her supervisor who re-tested me, (to find the same result). If I had not been re-tested I would have thought that I still had a moderate deficit in one ear. My brain thought, had adjusted to the loss in one ear and I favour this ear and have to concentrate if I'm using my bad ear, even though is is clearly functioning nearly normally. The ENT simply said the sometimes these things can heal and repair, but it takes time.
I just wanted to let you know, that in my case, with time my hearing, (and balance) improved. But, like the other symptoms, like fatigue, it take a long time.
I'm a newcomer to this site, and therefore, only just discovered your posts; I am deeply sad and so very sorry to hear of the tremendous challenges that you and your sweet baby boy have been faced with recently😢. My heart breaks for you both, and your entire family is in my thoughts and prayers😍.
I just wanted to check in with you before I posted any information, to see if you're still following this thread (I noticed it began about three weeks ago now), and if so, whether there have been any changes or developments since your last message (?)
I'd be delighted to share my experiences with you, and to offer as much support and comfort as I can😍. My history is very similar to yours and your son's; if you think it would be of any help or comfort to you, I'd be pleased and honored to give you the details😄. Perhaps you have an email address I could forward them to(?)--there are a LOT of details, so I have a feeling it would take an incredibly long post to cover them all (and I don't know for sure if this site would allow/accommodate a post of such length😋😉😍)!
I hope and pray that your son is gaining in health and strength with each passing day, and that you're experiencing the very best medical care, advice, and support; may you and your entire family be enveloped in much peace, comfort, and love❤️
I would like to know your case. My 3 years old boy was attacked by neumococcal meningitis and we are now trying to recover movement and normal life. My email address br.marichal@gmail.com
How is your son doing.. Just read your post. ... My daughter was 11 months old when she nearly died of Bacterial Meningitis... On 17 December its 2 years ago that I sat in the hospital praying she wouldn't die... I suffered from PTSD for a long time I suggest you get in contact with the people from Meningitis now... Lucky for me she is well we also suffer with ears we had a clear for the very first time 2 weeks ago.. but because of the cold here in UK she has another ear infection and so it continues.. I try not to deal with what if's and guilt it is to painful... Your son needs you to keep fighting for him ... But you need to go for counselling... You can't blame your self... I spent a lot of time doing that it doesn't help either of you.. He is a survivor and so are you ... Thank God every day and keep fighting for him.. TIme is a good healer.. But get counselling ..get help this website was a life saver for me... It's always good to know you are not alone.... Every year at Christmas time I think about those dark days and it is very hard...xx There are lots out there who are not lucky like usxx God Bless you both xx
Hi, my 10 month old went through the same thing (pneumococcal meningitis, septicaemia, rhinovirus and then viral meningitis all in the space of 3 weeks). He is home now (we are 4 weeks on) and he isn’t able to crawl right now and cries when he attempts. Thank god he is much happier and seems himself again, apart from being more iritable. Can I ask did you baby have any problems with crawling:walking/balance? Many thanks
Dearest EGillespie (do you mind that I addressed you that way?--I only meant it out of empathy and compassion for your and your child's plight, and as sympathy from a kindred spirit😍)....
I wanted to let you know that I just got word of your text, and I wanted to reply right away, so you would know that I am here, and willing and eager to be of service to you in any and every way possible😊.
I'm currently at an infusion center getting my weekly IVIG treatment,and alas, I don't have my computer with me--and since I want to answer all your questions as thoroughly and thoughtfully as possible, I'd prefer to use my laptop rather than "hunt-and-peck" on my phone through a text message😋.
But this IV session is a 10 hour odyssey that I'm only 1/4 of the way through, so I won't be home and back to my laptop until tonight. But I promise you, I WILL reply to your questions, and do so either tonight or tomorrow, depending upon how severe my reaction to the IV turns out to be😮
Meanwhile, please know that you and your child are in my thoughts and prayers (as I promised in my first text a few weeks ago😊!..I've actually had a candle lit for you both every day since, in support of your mutual healing and improved well-being😉, and in prayer and expectation for his speedy and complete recovery🙂
Hang in there, EGillespie...as others have reported in their replies (and as I myself have experienced), the illness can indeed be emotionally, physically, spiritually, and psychologically devastating--but people can and do heal fully, recover their former level of function, and live a normal, active, and joyful future😍. I wish that for you with all my heart, and will continue to expect it in my daily thoughts and prayers for you two😉
I'll be back in touch as soon as I can...Wishing you as good a day as possible (I know that's easier said than done, considering the circumstances😥), and that you and your beautiful boy receive an abundance of comfort, compassion, and support on your journey to recovery😍
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