Hi, my son has Aspergillus disease , hes suffered from severe asthma for years and we now have a tentative diagnosis of ABAP ( not sure thats quite right)
Hes 11yrs old and a real little warrior.Ive read loads on the net but all ive suceeded in doing is terrifying myself! ANY ADVICE , EXPERIENCES, about this would be so appreciated especially relating to child treatments, school and time off, benefits we may be entitled too, ways to reduce exposure ( other than putting him a bubble ) thanks in advance guys xxxx
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sianbailey
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This would be very rare in one so young but not unknown. There is also the possibility of SAFS (Severe Asthma with Fungal Sensitivity). Either way specialist attention is needed to cope with this properly - you might like to get a referral to the National Aspergillosis Centre (nationalaspergillosiscentre... who are very practised at these infections and asthma, other excellent centres in the UK include the Brompton in London.
You might also like to join one of our support groups for people with aspergillosis in Facebook facebook.com/groups/aspergi... or Yahoo uk.groups.yahoo.com/neo/gro... where you will find hundreds (over a thousand) people who live with aspergillosis in its different forms, many with ABPA.
Dr Graham thank you. Joshua was under Mark Rosentil until we moved 2yrs ago,ive joined the support groups , i cant seem to find out much info on asthmatic children and ABPA i children. Im currently chasing people around Addensbrooke to get the results of the lung wash ( nurse on leave,secretary on leave!)
There is very little information out there - it is a diagnosis in its infancy. Our work with SAFS suggests treatment with an antifungal helps but that needs careful use, especially in a youngster. Patients report more stable symptoms, fewer hospital visits and that can be a benefit for unstable asthma. Longer term information is not available as we have only been doing this for a few years - we happen to have a large chest clinic working alongside a large clinic that specialises in aspergillosis - the only one of its type in the UK.
Try to keep Joshua away from sources of moulds - rotting vegetation, damp homes and much more as it will irritate his airways. You will find information at nacpatients.org.uk and in particular nacpatients.org.uk/leaflets
Similar treatment is presumably available at Addenbrooks if doctors are convinced enough to try - we can always give advice if your doctors contact us. If not you can always ask for a referral.
Hi Dr Graham, well no luck in getting definative results on cultures so dont know what josh has grown for us!.
He is stable at the moment maintained on 10ml of pred ,certizine 20 mg,flixatide 150 2 puff b/d montelucast 5mg, 250 mg azrithramycin m,w,f.
His peakflow is 200 to 250 am/pm. Hes doing well but the sweats have come back, stomach pains and generally not as good I feel as he was a few weeks ago.
Hes been on 10mg pred for about 3 wks got down to 5mg for 2days and he became v.weazy so have stayed at 10mg.
His broch showed an abnormality ( 1 of the tubes going into the right lung was considerably narrower than the other a birth defect) would this have any effect on his asthma and the ABPA.?
I sold my house as soon as josh was diagnoed as its an old damp cottage and im currently buying a 14yr old property, wet dust, no carpets, birds ,house plants , keep windows closed, anti allergy mattress,quilt,pillows and air purify with hapa filter.
Once again any info, experience etc greatly appreciated.
Thank you so much for taking the time to reply to me, ive dealt with his asthma and ADHD for yrs sucessfully but this has really floored me.
Hi Dr Graham, well no luck in getting definative results on cultures so dont know what josh has grown for us!.
He is stable at the moment maintained on 10ml of pred ,certizine 20 mg,flixatide 150 2 puff b/d montelucast 5mg, 250 mg azrithramycin m,w,f.
His peakflow is 200 to 250 am/pm. Hes doing well but the sweats have come back, stomach pains and generally not as good I feel as he was a few weeks ago.
Hes been on 10mg pred for about 3 wks got down to 5mg for 2days and he became v.weazy so have stayed at 10mg.
His broch showed an abnormality ( 1 of the tubes going into the right lung was considerably narrower than the other a birth defect) would this have any effect on his asthma and the ABPA.?
I sold my house as soon as josh was diagnoed as its an old damp cottage and im currently buying a 14yr old property, wet dust, no carpets, birds ,house plants , keep windows closed, anti allergy mattress,quilt,pillows and air purify with hapa filter.
Once again any info, experience etc greatly appreciated.
Thank you so much for taking the time to reply to me, ive dealt with his asthma and ADHD for yrs sucessfully but this has really floored me.
I think that there is a good chance Josh will improve in your new home, but maybe not straight away, you may notice a difference over a few months. Keep us in touch with developments.
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