Asthma UK community forum
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Hello there !!

Hi, My daughter Emily is 11 and has very brittle asthma. She has had numerous admissions to hospital. Our consultant has just referred her to Bristol to have tests etc. They are planning a Bronchoscopy at the mo, plus other things, all a little scary !! Bless her she is coping so well. Her asthma attacks come on with very little warning and we live 25 minutes away from the hospital.

We are at present stuck in the no go area for a neb !! One consultant says yes whilst another says no.

Emily has been on pred since January so almost certainly adrenally suppressed, awaiting synacthen test result. Emotionally she is very low and had enough of being asthmatic.We have both cried more times than i can count. She goes to secondary school in September, which should hopefully be ok as our respiratory nurse, Helen is fab and liasing with the school nurse.

All in all it has been a rough 12 months and it would be great to hear from anyone that knows what it feels like to have a poorly child or to be one !!

Best Wishes

Cathy and Emily xx

2 Replies

hello there - im sorry for taking ages to reply, havent been online much!

my son is 3 and sounds very much like your daughter - he had a bronchoscopy in january and they found it very useful (he still has ""just asthma"" but at least they know it isnt something else for definate now!) he was unwell for a couple of weeks after but thats quite unusual( he had an infection and the camera irritated him!) it IS quite normal to have a fever in the first 24 hours after a bronchascopy so dont panic if that does happen.

Michael is also on steroids - has been for about a year and he is at the moment getting over the chickenpox. they hit him quite bad but we managed to keep him at home with zovirax antibiotics and 4 hourly nebs. we got our neb about a year ago, and it was our cons who suggested it - some of the other docs didnt agree bt they had no say.

with regards to her going to secondary school - you should be able to meet up with the staff whol will be her main ""carers"" to discuss your needs - try to get a plan which is as similar as possible to the one you currently use.

we are also lucky with our respiratory nurse (also called helen) who has visited nursery a couple of times to show them proper inhalor technique and to show videos dealing with anaphylactic shock etc - shes great!!!

if you ever need a chat, just message me and ill reply. i know how it feels to have an unwell child and believe me its easier to cope with when you have someone who knows rather than someone who doesnt. if you know what i mean!!!


Mod message

At some point us moderators might find this message board gets an upgrade and we can do all of the ""housekeeping"" stuff that we used to be able to do on the old board, such as merging threads (which would enable me to move Kristen's post to the other version of this thread). Ho hum...

Until then, you'll have to make do with me popping up every now-and-then and asking you to respond to this thread by posing in the OTHER ""Hello there !!"" thread in this forum, as that now has more replies than this one. Cheers, folks!


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