it is asthma - what comes next?

Hi everyone and hope the new year is getting off to a good start!

I am having probs with my son who is 12 and his consultant (who is much older than 12).

Jay has had a tight chest with low peak flows since cathing some viral thing just before christmas. We spent most of the holidays back and forth from local only to be told he is ok as he is not wheezing and sats are ok. Had appointment at Brompton on Tuesday and Jay had lung function of 37% with minimal wheeze and sats of 96%. RBH arranged admission through local as they had no beds. So far so good, I am thinking we will finally get to the bottom of things. BUT OH NO - LOCAL HAVE DIFFERENT IDEAS!!!!

Reccomendation from RBH was admit for hourly nebs with possibility of needing IV's. Local translated this to 'give 30 puffs of Ventolin and send home'. Luckily Jays community nurse came to hospital while we were still there and told them to admit him.

They continued treating with 10 puffs of Salbutamol 3 hourly despite low peak flows and Jay complaining his chest was sore and he was having difficulty breathing. Eventually agreed to 2 hourly Ventolin but would not give nebs. Next day stretched to 3 hourly again but Jay feeling much worse and constantly complaining. Shift change brought a different perspective to situation and reg set up IV Salbutamol and 2 hourly nebs for 5 hours followed by hourly nebs for 4 hours. PF rose from 150 - 240 and Jay feeling much better. Day shift back on so put back on 2 hourly 10 puffs of Ventolin! To cut a long story short - 2 days later, now on 4 hourly 10 puffs, PF still on 150 (Best 320). Consultant saw Jay today and decided he is not having an exacerbation but has got into the habit of shallow breathing from having a 'bit of a dip' over the past few weeks. He is being discharged tomorrow after physios have taught him how to breath properly again.

Both myself and community nurse are fuming as thet did not follow recommendation from RBH until next day and then reduced meds too quickly. The nebs/IV was the only thing to increase PF and as soon as they stopped this his PF dropped back down to below 50% again.

Does this sound like Asthma or a breathing technique problem? I don't want to bring him home feeling ill but don't want to leave him there when they are doing nothing for him?

HELP

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Hi again, Jay was discharged today with breathing exercises from physio. Had a long chat with sho before leaving, along the lines of '12 is a very difficult age - do you think anything could be worrying him or causing anxiety'. Reassured him all is fine and left with meds in hand .

Got home with pf of 140 and did what RBH suggested and gave hourly nebs for 5 hours - by bed time Jay had a pf of 302. This is without any breathing exercises or counselling for stress!!! Perhaps if they had followed recommendation in first place we could have avoided a very long 5 days.

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Hi Kat, I posted a very long reply last night, sent it and then it didnt appear !! Anyway i really hope Jay is much better today after hourly nebs. We have had a very similiar week at our local, sounds like we got the same ignorant docs in both hospitals. It was only thanks to Marcella from RBH very calming voice of reason on the phone that I didnt discharge Sean on 2 hrly nebs on Friday.

Anyway Sean home today on 2hrly nebs,reduced PF and unable to walk around house without being breathless, I'm now just counting days till Brompton apt week on tues.

It's disgusting how you and Jay been treated, how can a team of docs who supposidly care leave a child in distress and ignore medical instruction from resp specialist. Sorry m ranting prob not helping just a bit of sore point at mo.

Will try and get round to PM you later

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Hi Julie and Sean, HAPPY NEW YEAR!!!!!!

Wow, what a week. I am so sorry you guys have been through the same thing - this has been the most frustrating few weeks of my life.

We spent the whole holidays back and forth from local (they are probably regretting ever giving him an emergency card now!) with low peak flows that were not picking up much after nebs. Jay getting really breathless doing normal things (like walking) and generally feeling lousy. Same response each time - 'well he's not very wheezy but we will give him 10 puffs with a spacer anyway, just in case.' By 28th December (and 4th visit) pf down to 110 (almost 1/3) with no response to inhalers at all. Consultant called to review and decide action plan. Wonderful response - 'well he only has a slight wheeze, don't give any more Pred and you can reduce Salbutamol, he doesn't need 10 puffs every 3-4 hours'. FRUSTRATED MUM GOING VERY RED AT THIS POINT!!!!! Came home and gave 2 hourly nebs for a day then reduced. We are fortunate to have a great community nurse who is very sympathetic and calmed me down when I told her what had happened. She was going to e mail Marcella at RBH to get advice but held off as we had an appointment the following week and Jay had responded to nebs. Not sure why he went down hill so fast as PF on Monday was good but on Tuesday lung function pants, hence admission to local via RBH.

Jay was really quite funny, we saw Cara for tests after 3 monthly Triamcinolone and after lung function she disappeared for a while then came back and said he needed admitting. Jay looked really puzzled then when she left the room said ' she's joking right?' He really didn't believe her, it took her saying he would be transferred by ambulance for him to realise it was happening. 'But I came on the tube - I don't need an ambulance!!!' A compromise was made with a taxi and everyone was happy. Until.......local thought he was ok and tried to send him home after 30 puffs of Ventolin.

To top it all off, got copy of discharge letter (the one that goes to GP) which was dated the 9th of Jan (Jay discharged on 12th) and only had treatment as inhalers and Pred. This was obviously written the morning after admission as they thought he was going home - no mention of nebs or IV's which he needed that night.

Hope Sean picks up soon, I am sure you don't want him like that until next Tuesday. I am at the stage now where if Jay drops again I am going to A&E at the next closest hospital and avoiding our usual and his emergency card. Thats the great thing about central London, there are alot of hospitals on your doorstep.

Nikki

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Problem solved, RBH confirmed it is an Asthma problem and that my son does not have stress related psycosymatic airway constriction!!! We are back on Friday for change of meds (add on) as apparently lung function of 37% isn't very good.

Any ideas what add on therapy you can have after Montelukast, Symbicort, Tilade, Piriton, Domperidone, Omeprazole, Pred and of course Salbutamol. Can't tolerate theophylline type drugs. So whats next?