living with meningitis

Post on 26-Jun-2015

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MRF Member, Sue Burke, then provided a moving account of the illness of her son Cieran and her family's struggle to deal with the consequences of the disease. Cieran contracted meningococcal meningitis when he was just nine months old and has a range of neurological after effects, including deafness.

TRANSCRIPT

Living With The Impact Of Meningitis

Sue BurkeJuly 2010

22 NDAPRIL 2004Cieran and Connor were born at 17:13 and 17:14

Weighing a healthy 7lb 3oz and 6lb 3/4oz

After a fairly uneventful twin pregnancy of 38 weeks and 1 day

MONDAY 31ST JANUARY 2005

Cieran awoke with a temperature of 41 degrees and was shivering

10 am Attended GP’s Surgery and asked could this be meningitis as I’d seen this Before

Told to give CALPOL , this was nothing more than a virus...

14:30 Visited another GP without Cieran for my own routine appointment and was told to give juice crisps and nurofen.

19:30 Spoke to NHS Direct a doctor called back at 21:30 and told me of course my child would be drowsy, give nurofen, if temp reduces don’t call back

WEDNESDAY FEBRUARY 2ND

2005Didn't appear to know who I was

Returned to G.P’s and was told 90% sure he was fine

Requested paediatric input at hospital

Under duress was referred to the hospital and asked did I want a taxi phoning or did I have transport.

Lumbar puncture

Original diagnosis no meningitis but treatment for meningitis started.

SUNDAY 13TH FEBRUARY 2005

Admitted to Pendlebury Childrens PICU following 2 hour seizure

Christened

Cerebral Atrophy

SYMPTOMSVery high temperature 41 degrees Centigrade

Vomiting

Drowsiness

Pain upon Nappy Change

NO RASH

INITIAL PROGNOSIS

22lb Newborn

No head control / floppy

Hearing test referral

Wheelchair assessment

AFTER EFFECTS TO

DATEProfound Bilateral Deafness no reaction before 110 db,

Cochlear Implant Sept 2005

Epilepsy

Global Developmental Delay

Hypertonia

Brain Abnormalities

? Autism ? ADHD

THE TWIN THING The Benefits

A Role Model to copy

I want to do that No time to wrap in

cotton wool A Friend

The Disadvantages A constant

comparison A permanent what

if A continuous

reminder A brother that has

to grow up too quickly

MY FEELINGS

Meningitis

GUILT

Determination

Fear

Helplessness

THANKYOU

Questions?

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