11 year old who survived Pneumoccocal Meningitis , behavior troubles.

[Gavdroid]

Hi all,

My eldest daughter Iona (now 11 years old) was 18 months old when she fell ill with pneumoccocal meningitis & septicemia .

She was left profoundly deaf which has led to speech & communication problems , with no horizontal balance, sleep problems, tiredness, joint & bone pain, also with increasing behavior & memory problems.

All of the above at the time of her initial recovery not an acknowledged part of the after effects, and something my family and I have continually struggled with, alongside coming to terms with the whole issue of the illness.

Basically what I am asking is HELP !

We have had numerous appointments with the Clinical Psychologist at GOSH, who manage her cochlear implant. We are making almost no progress in getting any diagnosis or help. Iona has been assessed once in the past as part of a psychologist s university paper which she suggested there may be an undisclosed deficit , also while initially poorly it was suggested that she had damage to the Hypothlamus in the brain.

Can anyone reading this suggest where we should turn ?

[Jennyoxford]

Hello, Have you spoken to the Meningitis Trust for advice? My daughnter had it nearly 2 years ago and the last time i spoke to the peadatrics about after effects they mentioned the most common after effects is behaviour. I have head that it is often not diagnosed for years after. Our daughter can display bad behavious but she is only 4 and half and now physically disabled so are we unsure if this is frustration and loss of control, time will tell. good luck x

[hannahg]

Hiya I suffered pneumococcal meningitis on a number of occasions in my childhood and was greatly helped by the meningitis trust , they also helped my parents in coping with the changes, i lost my hearing to right side and suffered damaged to joint on right side, i went to psycolagist on NHS although this had little progress however i was provided with support from meningitis trust which was great help Contact Details. Tel.24hr helpine 0800 028 18 28 E-Mail:[e-mail]. Website: meningitis-trust.org.

I discovered that my issue was related to the fact that i had inflimation from the meningitis to the frontal lobe which then caused scar tissue which then effected my behaviour for a while things where difficult but over time I learnt to handle things better and found distraction mechanisms and relaxation tecniques.

I had accupuncture at 11 for hip it also helped me sleep really well (my G.P provided this)

I also had hot radox muscle baths and you know the lavander cusions you heat in the microwave i found they helped on my joints on the night aswell as hot blankets on my bed.

I also found that heat pads can help sooth joint pain

I had a relaxation C.D which I played in my room mine was an ocean C.D but some people say classical can be useful some like the actual relaxation talks help

nuro speech therapy can help with speech

and cognative behaviour therapy (CBT) can help with comunication I found CBT one of the most useful things I did after my meningitis if i couldn't communicate with speech I found or expressions as both at time was a problem I learnt other ways, notes, letters, codes, pictures, hand communication, eye contact also it helped me cope with what I went through and understand things better and improved my behaviour.

Maybe some support or councelling for you and the family for the change and experience you have all been through may also be useful

I hope this goes some way to help on this Journey.

Good Luck

Things will get better

xx