Progress despite everything

My little boy, Alfie (6), has severe asthma. He had 20 emergency admissions before he was 2 which culminated in him being ventilated in picu at st georges hospital, london. Since then he's been on mega high inhaled steroids, (flixotide 850mcg daily), serevent, monteleukast, azithromycin all daily. We have avoided any major disasters through this regime and now we're beginning to reduce the meds and observe. So far we have reduced his flixotide from the 850mcg to 500mcgs daily and as of next week we're stopping the azithromycin...his monteleukast has increased to 5mg. His consultant says we cant drop the steroids any lower because he's got 'break through wheezing' on this lower dose but we need to see if the antibiotics are really helping hence stopping them. He had a bronchoscopy several years ago and it was then that the azithromycin was added in.

We were so pleased with his progress but were told on Wednesday that despite all the successes Alfie still has severely restricted airflow and that we need to do another bronchoscopy to see if the changes are visible. He's now using a peak flow meter daily to help monitor what happens when we stop the antibiotics.

Does this restricted airflow mean that if he were to crash we'd be back to the beginning and needing ventilators...he used to have all him inhalers as nebulisers but thats been stopped about 3 years now.

Sorry I'm not expressing myself well just so confused with this.

Oh and he's having another endocrine assessment within the next few weeks but thats part of his 2 yearly cycle to monitor the effects of the steroids. It would be so good to get his steroids down to a more 'normal' level for a child of 6. I so hope he can come of the antibiotics too but thats scary.

Margot x.

1 Reply

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  • It is good to hear your son is progressing! I hope he manages to come off the antibiotics.

    I too have been coming off medication recently and it is a scary process but every little step should be a point to celebrate and any step backs should not be disheartening but taken as a new challenge. Hope it all works out.

    Plumie

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