Stopping Antibiotics
Friday 25th May 2018
The first day with no antibiotic for Henry.
Since he was diagnosed with CF at 4 weeks old he has had a range of different antibiotics from 2.5ml once a day to 5ml x3 times a day. It is a real battle everyday to give it to him as well as doing all his physio, vitamins, creon enzymes etc etc.. not to mention suddenly having to learn how to mix up medicines with sterile water, remembering how much to give and when, how long each bottle of medicine lasts ( i have a diary so i can remember everything), and upsetting him almost every time I try to give it.
I have been pushing for a year and a half to trial taking him off daily antibiotic and to give it only when he is symptomatic. I have had doctors and nurses talk down to me and dismiss my discussions. It was only in passing over a year ago that a nurse mentioned that babies newly diagnosed at the Brompton were being trialed with no daily antibiotic. And I have always found it confusing that doctors have given me different opinions and that there is no definitive research that daily antibiotic makes any difference to length of life or reduction of bugs in the lungs.
This is just a trial, made in summer when the weather is nicer and he is outside more, and after he had a chest xray which showed his lungs to be clear, to see if it makes any difference. The Positives of daily antibiotic are that it may prevent any bugs from damaging his lungs more seriously, The Negatives are the impact on the rest of the body of daily strong antibiotics.
No parent is perfect but we all try our hardest to do what we feel is best for our children. So while I hope that this may be the best for Henry it may not be for many other families whose children have CF.
I think this is just another reminder to keep pushing for what you feel is right, and if it doesn't work then I will have been glad I at least tried.
A momentous day for us both.
The first day with no antibiotic for Henry.
Since he was diagnosed with CF at 4 weeks old he has had a range of different antibiotics from 2.5ml once a day to 5ml x3 times a day. It is a real battle everyday to give it to him as well as doing all his physio, vitamins, creon enzymes etc etc.. not to mention suddenly having to learn how to mix up medicines with sterile water, remembering how much to give and when, how long each bottle of medicine lasts ( i have a diary so i can remember everything), and upsetting him almost every time I try to give it.
I have been pushing for a year and a half to trial taking him off daily antibiotic and to give it only when he is symptomatic. I have had doctors and nurses talk down to me and dismiss my discussions. It was only in passing over a year ago that a nurse mentioned that babies newly diagnosed at the Brompton were being trialed with no daily antibiotic. And I have always found it confusing that doctors have given me different opinions and that there is no definitive research that daily antibiotic makes any difference to length of life or reduction of bugs in the lungs.
This is just a trial, made in summer when the weather is nicer and he is outside more, and after he had a chest xray which showed his lungs to be clear, to see if it makes any difference. The Positives of daily antibiotic are that it may prevent any bugs from damaging his lungs more seriously, The Negatives are the impact on the rest of the body of daily strong antibiotics.
No parent is perfect but we all try our hardest to do what we feel is best for our children. So while I hope that this may be the best for Henry it may not be for many other families whose children have CF.
I think this is just another reminder to keep pushing for what you feel is right, and if it doesn't work then I will have been glad I at least tried.
A momentous day for us both.
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| 1 month old |
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| one of many antibiotics |
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| 2 months old having his vitamins |
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| 2 years old |
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| Daily Saline & Pulmozyme nebuliser |
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