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now what??

ok folks, so once again i havent been online in donkeys ages...michael has been keeping me very busy. he is, after a relitavely stable last year he has been in 7 times since january. NIGHTMARE!!!

anywayz, hes just started doing peak flows, getting 100-150 every day which we have taken to be his ""best"" just now though hes barely getting above 50 despite 4 hourly nebs and a higher dose of pred. he is coughing (as usual) but is chirpy enough which means that in not toooo concerned, just got out of HDU 10 days ago after hydrocortasone, iv salbutamol etc but i really dont know how much longer we can deal with all this, theres hardly any more meds to try, xolair has even been mentioned a couple of times as a last ditch attempt. im just getting really frustrated with it all, and i wish i could take it all away for him.

im also worried that he is getting ""used"" to being wheezy, he hardly ever asks 4 a neb, despite being baltanly wheezy, he says he feels fine and that hes not wheezing etc.

anyways, i dont want anyone to give me a cure...but just a couple of random shoulers would be nice to cry onto, cheers

kirsten (i wont moan TOO much i promise)

4 Replies

hugs and shoulder on way for you. sorry best i can do.


Hi Kirsten, I'm so sorry Michael and you are having such a rough time. The only things I can think of that Sean on that Michael may not have tried yet are S/C Bricanyl and ciclosporin or Azithropine (steriod sparing agents).

The jury is still out here on steriod sparing agents but Sean has found S/c Bricanyl really good, infact he recently told his con at Rbh that its the only drug he definatly knows helps him.

If you need a shoulder or an ear please Pm at any time, I havent got many answers but I can certainly understand how you feel after living with Sean's asthma for 11 yrs.

Take care and I hope Michael better soon


J x


thanks very much, peak flow was 90 today so a bit of an improvement though hes still quite wheezy, his oxygen levels were 89 earlier when he went to sleep but theyv crept up to 94% just now after his neb.

hes starting school in auguat so im really freaking out about him missing out on stuff!!

cyclosprin has also been mentioned a few times but theyre not too keen on it for him cos hes only 4, they dont know what kind of effect itl have on him. s/c is a bit of an unknown at our hospital, i mentioned it to our cons who looked like id just suggested going to mars for the day!! its just not part of the regime at all for resp conditions at our hospital.

thanks for the support guys, i try to be upbeat all the time but its tough you know, iv broken down in hospital the past couple of times, espescially cos the high doses of steroids give him mental, violent mood swings, he bites and scatches and screams the place down and its really distressing. its all ""normal"" though apprently!!

speak soon!!

kirsten xx


Just a thought........... When Sean was 3-4 he became the child from hell on pred. One doctor on PICU who was used to sedated patients got so fustrated with a wild nutter on her ward she threatened to hang him out the window!! He became so aggresive at times and totally needle phobic it was a fight to gain iv access and I was almost in tears whenever cannula tissued cos I knew what was coming. Anyway now ive made him sound like an awful kid and he really isnt lol.

His Con at RBH had some research that CF kids behaviour was better on dexmethsone than Pred but both steriods had same medical effect so we switched. It wasnt all plain sailing but he certainly did seem to calm down a bit and he stayed on dex until couple mths ago when he started on pred again.

Everything you have written I am sat here nodding thinking it could be me writing the post! Glad Pf picked up slightly. I know its no help at mo and its a long way off but it does get easier as they get older. If anyone had told me when Sean was 4 that he would be this calm at 11 I would have laughed at them. The only thing that doesnt get easier is accepting this life for your precious child as normal as its far removed from normal but you just find a way to deal with it.



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