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Wheezing into 2013 - Support thread for parents of asthmatics

(965 Posts)
Sirzy Wed 26-Dec-12 14:19:15

As the old thread is filling up I thought I would get a new one started!

This thread is for anyone with a child with asthma, or asthma type symptoms. Between us we have to much experience of inhalers, nebulisers, steroids, sats and all things asthma!

cedmonds Mon 07-Oct-13 10:12:21

Badvoc Hopefully he can still have his flu jab. Da was ment to be having his tomorrow. But that isn't going to happen with his chest the way it is! Ended up in A+E last night. He got taken in by ambulance had a neb then then put in a room and forgotten about !! They then did t listen to Ny of his history. We are going the gp today

Badvoc Mon 07-Oct-13 10:35:52

Oh ced! Poor little ds! Have been there with both mine, it's not nice sad
What will be, will be. I will make sure he has it....at some point! smile

gussiegrips Wed 09-Oct-13 10:38:50

Anyone got experience of being on Xolair?

Middley kid (8) has difficult/severe asthma - missed half his schooling last year.

Just out of hospital - another life threatening episode, sigh. Chronic management is excellent, the acute stuff, rubbish.

He's on everything (seretide 125, ventolin, monteleukast daily, reducing dose of pred as required. Which is all the time), and long term steroids last winter gave him an ulcer/bone thinning and his metabolism's stuffed.

So, proposal is a trial of xolair - a monthly jag of some sort of binder of the allergic factor in his blood?

Nurse said to read up on the side effects, which all look a bit ghastly. But, then, so is his asthma, and so are the steroids.

Thought I'd ask you lot - anyone used it?

Sirzy Wed 09-Oct-13 10:51:50

I have heard of it but not tried it as DS is too young to be considered. Given the trouble he is having I think I would give it a go, I have heard good things from adults who have had it.

gussiegrips Wed 09-Oct-13 11:38:13

My DS is too young too. They will trial it on kids when there's no other option.

Which is pretty bloody depressing in itself.

That's good to hear about the adults though, the side effects look unpleasant, but then, the list of side effects always does.

Actually, there's no choice. He's running out of luck, can't tolerate another winter on pred, and, as you say, they don't do this on kids.

So, that's that.

lollipoppi Fri 11-Oct-13 21:07:28

Hi all
Lost you there for a little while how is everyone?

Gussie sorry I've not heard of it or know anyone on it, however, by the sounds of it, it's defo worth a shot!

DS is doing ok, he has had his appt through for the nasal spray flu vaccine, did someone mention upthread that asthmatics are not suppose to have it?

MrsShrek3 Sun 13-Oct-13 23:13:59

gussie no experience of it either but sounds well worth a go. Virtual hand holding if required smile

gussiegrips Tue 15-Oct-13 01:29:56

Thanks, guys. I've been put in touch with Asthma UK who have a focus group locally, which is handy.

I think that's where they put parents of the "blooming eck" wheezers together so they can collectively vent frustrations?

Honestly, if ONE MORE PERSON says "don't worry, he'll grow out of it"...

Thanks, guys. Hope your wheezers, well, don't, and you have a quiet winter. x

MistyB Tue 15-Oct-13 23:32:05

lollipoppi The nasal flu vaccine is not recommended for people with active wheezing, the insert has this counter indication in section 4 if I remember.

lollipoppi Mon 21-Oct-13 09:22:20

How's everyone doing?
Called the doctors about DS flu vaccine and got him booked in for the jab instead

TeamEdward Wed 23-Oct-13 12:42:38

Hi! I came here with a question about a flu jab for DS2, but I see you've been chatting about this already so will go back and read thread first!

Sirzy Wed 23-Oct-13 12:57:34

DS is still plodding, had an asthma attack at nursery last week which scared the staff -especially as he doesn't wheeze so it was harder to notice at first - but he has bounced back and is doing ok. At the consultant next week.

Still not had a flu jab as the GP have mucked it up and had none suitable for under 5s when we went for his appointment last week. Hopefully getting it on friday but not hopeful!

TeamEdward Wed 23-Oct-13 12:57:47

Ok, I went for my asthma clinic check today, and to get a flu jab. When I booked the appt, the senior nurse was there and said to bring DS2 in and get him vaccinated at the same time.

Different nurse today. First she wasn't sure if DS should have jab at all (he's been hospitalised a 3 times in 2 years, but not in the last year, and he also does not have a prescribed steroid inhaler). He needs his ventolin inhaler every 2 weeks or so, but we've been told that is not enough to warrant preventative treatment.

She finally decided she could give it to him (think she checked with Dr).
I assumed he'd be given the nasal dose, as this is what I had read on NHS website. He really doesn't do needles.
Nurse told me that they are only giving the nasal to children aged 2 and 3, and as DS is 5.3 he will get the jab.

I questioned this and she said the surgery had not bought in to the nasal vaccination scheme and were only giving jabs.
I had my jab, but DS2 has been left unvaccinated for the moment. Nurse is going to see if DS can have a nasal vaccine if there is any left over from vaccinating the toddlers. hmm

If they can't get a nasal vaccine, he'll have to have a jab with a booster 4 weeks later. Yeah, good luck with that. You might get a needle in him once, but twice? He's not stupid! grin

Anyway, does this sound right? Surely if the NHS say children will be vaccinated by nasal spray because it is more effective then that is what should happen?

lollipoppi Wed 23-Oct-13 13:43:10

Team Edward - I think the problem is that if your DS has "severe asthma" then he cannot have the nasal spray as it is a live vaccine and could trigger an attack, that's what I understand anyway.

DS is booked in for his jab on Monday! Along with DP, I'm putting bets on who will cry more wink

Sirzy glad your DS made a quick recovery!!

DS is doing ok, on ventolin at the mo, it's his 3rd birthday tomorrow and having a party on Sunday he can't wait grin

Sirzy Wed 23-Oct-13 15:19:43

My understanding is that for most of the country the spray is only being given to children aged 2 and 3 as standard. Others in "at risk" groups are being given the injection as normal.

TeamEdward Wed 23-Oct-13 19:29:51

Ah, okay Sirzy, that explanation works. I was under the impression that his asthma wasn't severe enough to require injection over spray (no regular steroids) but just enough to warrant a vaccination.

This NHS website says...
The nasal spray flu vaccine is also for children aged two to 18 who are 'at risk' from flu, such as children with long-term health conditions.
and
Children at risk of flu are already offered an annual flu injection. As the nasal spray is more effective than the injected vaccine, children aged between two and 18 with long-term health conditions are now being offered the annual flu nasal spray instead of the injection.

I think our issue has come about as DS2 has not had a flu vaccination before and, as the nurse pointed out today, he's not had a proper asthma diagnosis because his episodes were when he was under 5.

Sirzy Fri 01-Nov-13 20:51:11

how is everyone doing?

DS had his consultant appointment this week but saw a different doctor who didn't fill us with confidence but has given him a different antihistamine to try - which are currently struggle to get hold of but hopefully when we do it will help!

Got to give him 5 puffs of ventolin before any exercise now to see if that helps.

lollipoppi Sat 02-Nov-13 09:48:34

Hey Sirzy, hope the new antihistamines help!

DS is doing ok! Been on his ventolin this week and it's keeping things at bay

lollipoppi Mon 04-Nov-13 10:05:13

Here we go hmm
DS been up all night coughing and no better today,I have that horrible feeling that it's going to be a bad one.
Dosed up on ventolin and resp rate is ok at the mo but getting his bag packed just in case!

Sirzy Mon 04-Nov-13 14:53:30

I hope it does - if we ever get hold of it!

Hope you DS is ok Lolli.

lollipoppi Mon 04-Nov-13 18:18:37

Not doing too good at all, probably the worse I've seen him hmm

Horrible day, went to the docs and his stats were 88, was kind of expecting doc to say il phone for an ambulance, but instead told me is be fine in a taxi shock called hospital to let them know I'm on route as he has open access and they hit the roof!!!! Told me to march back in to the docs and demand an ambulance, receptionist told me it's not an emergency and wouldn't dial 999, taxi arrived and I got in it. Got to hospital and after assessment they actually called my doctors to tell them what a disgrace they are!!

Anyway, lots of Nebs and oxygen so far and he isn't doing great hmmhmm

Sirzy Mon 04-Nov-13 18:21:17

Poor thing sad hope he feels better soon.

And I hope you are going to put a formal complaint in about your GP!

lollipoppi Mon 04-Nov-13 19:42:11

Still on hourly Nebs, wheeze improves with them but resp rate and heart rate too high and O2 levels too low hmm

I'm gutted as we have had trouble in the past with another doctor there who I now refuse to see, this doctor today has always been great with DS and now I don't trust him either hmm

Sirzy Wed 06-Nov-13 08:01:13

how is he doing lolli?

lollipoppi Wed 06-Nov-13 11:56:31

Much better thanks, we got home last night and the nurse has been out to see him today, his stats are ok just very breathless and a slight wheeze.

I think this time as he is a bit older and he is more aware and he was panicking a bit that he couldn't breath properly bless him hmm

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