Living with Meningitis

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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.

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Living with Meningitis

  1. 1. Sue Burke<br />July 2010<br />Living With The Impact Of Meningitis<br />
  2. 2. 22 ndApril 2004<br />Cieran and Connor were born at 17:13 and 17:14<br />Weighing a healthy 7lb 3oz and 6lb 3/4oz<br />After a fairly uneventful twin pregnancy of 38 weeks and 1 day<br />
  3. 3. Monday 31st January 2005<br /><ul><li>Cieran awoke with a temperature of 41 degrees and was shivering
  4. 4. 10 am Attended GP’s Surgery and asked could this be meningitis as I’d seen this Before
  5. 5. Told to give CALPOL , this was nothing more than a virus...
  6. 6. 14:30 Visited another GP without Cieran for my own routine appointment and was told to give juice crisps and nurofen.
  7. 7. 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</li></li></ul><li>Wednesday February 2nd 2005<br /><ul><li>Didn't appear to know who I was
  8. 8. Returned to G.P’s and was told 90% sure he was fine
  9. 9. Requested paediatric input at hospital
  10. 10. Under duress was referred to the hospital and asked did I want a taxi phoning or did I have transport.
  11. 11. Lumbar puncture
  12. 12. Original diagnosis no meningitis but treatment for meningitis started.</li></li></ul><li>Sunday 13th February 2005<br /><ul><li>Admitted to PendleburyChildrens PICU following 2 hour seizure
  13. 13. Christened
  14. 14. Cerebral Atrophy</li></li></ul><li>Symptoms<br /><ul><li>Very high temperature 41 degrees Centigrade
  15. 15. Vomiting
  16. 16. Drowsiness
  17. 17. Pain upon Nappy Change
  18. 18. NO RASH</li></li></ul><li>Initial prognosis<br /><ul><li>22lb Newborn
  19. 19. No head control / floppy
  20. 20. Hearing test referral
  21. 21. Wheelchair assessment </li></li></ul><li>After Effects To Date<br /><ul><li>Profound Bilateral Deafness no reaction before 110 db,
  22. 22. Cochlear Implant Sept 2005
  23. 23. Epilepsy
  24. 24. Global Developmental Delay
  25. 25. Hypertonia
  26. 26. Brain Abnormalities
  27. 27. ? Autism ? ADHD</li></li></ul><li>The twin thing<br />The Benefits<br />A Role Model to copy<br />I want to do that<br />No time to wrap in cotton wool<br />A Friend <br />The Disadvantages<br />A constant comparison<br />A permanent what if<br />A continuous reminder<br />A brother that has to grow up too quickly<br />
  28. 28. My Feelings<br />
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  43. 43. THANKYOU<br />Questions?<br />

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