Prognosis following bacterial meningitis in toddlers

[lumish]

My DS had bacterial meningitis last year when he was 18 months old. After 12 days in isolation it was found that he had lost all his hearing, balance etc. He underwent surgery for bilateral cochlear implants 3 weeks later and it has been a lonnnnnnnnnnnng journey since that point.

My question relates to a little bombshell that his teacher of the deaf dropped on me earlier today. Whilst he has recovered well physically (back to walking, although running and overall postural stability is a bit ropey), his speech and language has (understandably) been massively affected by the meningitis. I have always remained positive about working very hard on his rehabilitation in order to close the gap between him and his peers and have actively been working on the premise that with continued support that he may effect a good recovery.

However, today his teacher of the deaf informed me that he was 18 months behind and in her opinion, he would never catch up his peers and that by this stage he would be expected to be progressing more and that I should ultimately face the reality that his speech delay is part of a developmental delay that I should recognise and accept. However, I just cannot believe that one professional can voice such an opinion. An opinion which runs contrary to what I have been told by his paediatrician who said that much development at this critical stage revolves around speech and language and that once he gets this, then he should be able to catch up.

I've been looking online and I just keep coming up to the same opinion that you just don't know with the child, and that no person can make predictions although the developmental delay is generally associated with younger babies and fitting. My coping mechanism has always been the idea that he can recover and I just feel incredibly delated and demotivated by this visit today.

[Jeffery]

I think that there is too much at stake here for you to put much trust in one person's opinion. I would be asking for the scientific proof of such a statement. You need to be very careful here as to not lose hope and to work on the reality that, come what may, you will always strive for what is best for your child. Prayers and Kind Regards, Jeffery

[vasco]

Hi,

I am so sorry to learn of your son's ordeal. It's so much he had passed through. As an adult who lost his hearing two years ago and underwent bilateral cochlear implants, I could understand where the doctor is coming from. What that little boy went through is so huge beyond what you would imagine. Definitely, he will be slowed down a bit developmentally. But I would believe that his overall development and progress would involve many things including his natural endowments in the long term. Don't be dismayed by the prognosis now rather try your best to help him catch up. His ordeal at the moment would make him two times harder to continue from where he stopped in the natural developmental process because he would be batting with the internal overall recovery from meningitis. As an adult, two years down the line, I'm far away from full recovery talk less of the toddler. But I believe that kids are more resilient than we think. I hope and pray for his wholeness xx

[lumish]

Thank you.

I suppose that all of this has brought to the surface the guilt that I feel about his illness. He had been ill for 5 days - I kept taking him back to the GP and the hospital but they kept dismissing me, telling me that it was a virus. Even when he was finally admitted with symptoms including neck stiffness, barely conscious, vomiting, screaming when touched, unable to hold fluids, the Registrar still didn't think it was meningitis and refused to do a septic screen (despite him being prepared for it) so we weren't seen by a Consultant for 30 hours. When the Consultant finally appeared during a ward round he finally got the lumbar puncture and then the nightmare really began.

The thing was is that I knew that it was more serious than they were saying - I knew instinctively that he was very ill and that I shouldn't have been dismissed by the registrar. I saw the worry on the nurses faces and I should have fought for better care. I still wonder what would have happened had I questioned the registrars conclusion and sought a higher opinion - had I done this, would the outcome have been better? My research, particularly that recently looking at prognosis appears to show that poorer outcomes are associated with the longer duration of untreated meningitis. It is clear that he was suffering for some time without being properly treated. As a mother, I can never forgive myself for not recognising this.

[sorba]

I think that you need not take this too much to heart- if you keep giving your son all the support and help that is available, and encourage him to face new challenges he will make progress- we all have our limitations anyway, Sorba

[kat12]

Sorry to hear about all that you and your son have gone through. This is very interesting as my son has recently recovered from meningicoccol meningitis, the doctors also told us it was only a virus then a few days later he got a rash and I just knew, his hearing test showed us he has glue ear in both ears and he scored very low on the test its self, we are going back in three months to see if there's any improvement. I think he is also a little wobbly on his feet. As a partner that has been through something similar I would definitely ask for more specific information!! I'm sure your doing such a good job

Best wishes,

Katie

[stagehand5]

I contacted bacterial meningitis in Oct 2011. I was diagnosed right away. Spent 4 days in a coma with a total of 45 days in the hospital. My hearing was destroyed by the virus which gave me the balancing problems. After months I had put myself in the feeling I would not hear again. After 8 months different ear doctors had me tested and I was given a implant in my left ear and June of 2012 I startedhearing again. As of Feb 2013 my hearing is at 33 percent in that ear. I had to learn to walk again and have pushed myself from a walker to a cane. I know how it feels. For a young child who has experienced this its unbelieveable. They havent experienced the world. They dont know whats going on but they are young. The biggest thing on your end is patience and love. We as humans want everything right now. Give your child time. Its not going to be easy on anybodys part. Give them love and beyond anything be patient.

[recovering777]

Hi, i feel you are being really hard on your-self and need forgive yourself in order to continue giving your son the care he needs. You are not a medically trained person, so why are you feeling so guilty. Its a natural fear that we mothers have when our child is so sick, and feel helpless, and at the mercy of the health profession, after all, arent they the ones' that should have picked up on this. Sometimes we get a gut feeling that something more serious is at hand but feel a little out of line, should we question this with a Health Professional. We are usually reluctant to do this, for fear of offending, this may have been the case in your situation and fully understandable. Children are very resilient and as such usually recover far quicker than an adult, but not always. As your child progresses i'm sure you will start seing results, but dont get discouraged should this take a number of years, or if its not 100%. You still have your precious child for which you can be very grateful as many die with this disease. I applaud you as a mother, i dont see this person that you see. You have done brilliantly, you are a beautiful mother, filled with love and concern for her child, what more can a child possibly want, or need.

Well done, love yourself more and you will cope far better with all of this.

Blessings,