Hi all hope eveyone is ok at the mo and looking forward to prezzies and turkey.
My son Jayden had his first appointment at RBH today and had a few tests done. AS usual he was completely well when we have a hospital appointment so don't know if the tests showed anything about his asthma at all!!
Hi s lung function was really good and peak flows at about 80% However he had an ENO test done (reallly cool to watch cute girly hovering over cliff!!) and was told that even though he's well if hes Asthmatic there will still be inflammation. His result was 70, no idea what that means, is it good, bad, normal? Would the result be lower as he is well and increase when he's ill or is just be the same regardless of condition at the time. Sorry to sound so clueless but not come across this one before.
Also had talk of home visit followed by possible broncoscopy and ph study. Does it always get to this step or do they sometimes leave it after home visit. Also had meds changed from Seratide to Symbicort 1600 mg/day. Has this made much difference to anyone, would love to hear it has!!
Well thanks for reading and a merry chrismas to all.
Pardon my ignorance Casper-but what is an ENO test??-I seem to meet something new on the site every week.Ta,
Bluejam.
Eno is exhaled nitric oxide, rbh are conducting research into if using these readings are a way of predicting attacks. My son has been doing eno readings on a machine at home for 8 mths to help the research for dr fleming. After weeks of massive high dose steriod and iv methyl pred in rbh we got Seans down to 20 which is ok but currently it is 260 which is incredibly high. They seem to do routine broncs and ph studys as part of investigation at rbh , sean has had several of both. The ph study is used to see if there is acid reflux which can make asthma worse, reflux can be a side efect of steriods. We haven't ever had home visit but thats prob cos im down in kent, is it marcella who visiting? She is the resp nurse alongside paula who is covering maternity leave. We know them both and they are great, very supportive and helpful.
Good luck , if anyone can give you answers its the rbh.
julie x
Hi - I was changed from seratide to symbicort and it has transformed my asthma. It is so much better than seratide. Good luck with it and hope you have as much success as i did
Bluejam - was completely new to me aswell!! Needed to come on this site to find out more about it!
Maxine - glad to hear Symbicort has made such a difference to you, fingers crossed Jay will have good response to it.
Julie - glad to see you made it home from RBH fingers crossed you get through Chrismas and New year ok. We ended up in on Boxing Day last year and had a visit to A&E on Christmas day a few years ago. I think it might be an exciement thing with Jay cos there was no cold bug going around our house at the time. We saw Marcella yesterday and she was great, really helpful and reassuring. I think she is the one organising the home visit - perhaps they think that people who live in London have damp, cold unsuitable housing and everyone else lives in lovely houses with gardens!! No idea why they are visiting - except she mentioned allergy testing at home?? Everyone seemed to be having it done there. Serves me right for not asking - apparently though they are fully booked for visits until Feb. 260 - wooooahhhh, there was me thinking 70 might be a prob, lol. From what you said can I take it that ENO levels change from when well to when not well - and have you noticed a pattern in seans levels and the onset of attacks? Oh well fingers crossed we all have a good Asthma-ish free Christmas.
Hi Casper
i dont think it is toooo bad as I have never had one that low mine mine are normally 170, the lower it is the better I think. Ummm I was talking to marcella/ Nicola wilson and apparently home visits are becoming part of the severe asthma assement like bronchs etc. Ive only ever had one as I live 2 hours away where Lizzy came to visit and met my local support network, community nurse etc.
May x
Hi May, thanks for the reply.
Yep the lower the result the better, I was told normal is 22 but that they often get results in the 100's. Was just wondering whether the results vary depending on how well you are at the time. 70 is starting to sound pretty good perhaps this is why Jayden responds so well to Back to back nebs cos it's not so inflamed in the first place.
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Horrible teacher aaarrgghhhh!!!!!!
HELP School not taking Asthma seriously!
