Pseudomonas antibiotics whilst Optiflow dependant

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AuntyLamb
AuntyLamb Online Community Member Posts: 3 Listener
in Cerebral Palsy Network
Hi everyone,
I just wondered if anybody had any experience with the dreaded Pseudomonas superbug when antibiotics no longer work.
Just a bit of background info - My 9 year old niece Kaydie-Leigh, is hospitalised due to multiple seziures and problems with SATS. Kaydie is spastic quadriplegic, epileptic, blind, deaf and tube fed with a history of damaged lungs due to pseudomonas.
This is the 3rd time the infection has shown itself.
The first time she got it, it put her on oxygen, second time, on optiflow, this time, she is already on 21 litres of optiflow just to keep her SATS normal.
Kaydie's parents were told yesterday that antibiotics are no longer working and that it may just be a case of keeping Kaydie comfortable  :'( The consultant then went and spoke to the microbiologist who recommended trying a new drug - these are Ceftolozan and Tazobactam.
Has anyone tried these or had any experience with them?
It has taken 24hrs for the hospital to get hold of these drugs so we're hoping she starts them today.
As appose to Kaydie already being om Optiflow permanently, is the Pseudomonas likely to worsen the lungs to the point she'd need ventilation?
Any info/opinions or experience would be very much appreciated.
You can also follow Kaydie on Facebook (Kaydie's Voice).

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  • AuntyLamb
    AuntyLamb Online Community Member Posts: 3 Listener
  • AuntyLamb
    AuntyLamb Online Community Member Posts: 3 Listener
    Just bumping for help thanks xx
  • Richard_Scope
    Richard_Scope Posts: 3,780 Cerebral Palsy Network
    Hi @AuntyLamb
    Welcome to our community and thank you for sharing Kaydie's story with us. I'm unable to give any kind of medical advice and if members share their experiences it does not constitute a medical opinion.
    Have your family made contact with a Patient Advocate? An advocate may be able to provide extra support and are independent of the NHS. 
    Keep in touch.
  • Jean_OT
    Jean_OT Online Community Member Posts: 511 Empowering
    Hi @AuntyLamb
    Sorry I have no experience relevant to your specific query. However, I thought I'd just post about an organisation that might be able to offer some support to 
    Kaydie-Leigh, they are sometimes able to work with families of very poorly children so that they can all be at home together. https://www.wellchild.org.uk/
    Wishing you all your family all the very best.
    Jean

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