Wheezing into 2013 - Support thread for parents of asthmatics

[Sirzy]

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!

Oh no sirzy
Does he have to take the ventolin daily then? DS just has it as required sometimes he can go weeks without it but then be on it daily for weeks.

How is he doing now? Hope you manage to avoid a trip to a&e

Do you have open access at your hospital so you can go straight to the wards or do you have to go through a&e? X

At the moment he is on 5 puffs 4 times a day, sometimes managing to stretch to 6 hours at a push but normally he has 4 puffs morning 4 puffs night just to keep him stable.

Our local A and E is a peads one anyway and connects straight to the ward and the assessment bay so we go in via A and E and then they send us wherever from there!

He seems to have settled off for now thankfully!

Hi sorry not updated for a while. Ds is a lot lot better but still got a nasty cough. Thankfully he is back to his normal self however and it not affecting him too much for now anyway. Got a follow up app on a couple weeks.

Re nursery administering inhalers... I find they do it better than me!! Ds hates having it at home, but at nursery he is as good as gold!!

And also sirzy sorry your boy is bad again.. Fingers crossed the Warmer weather starts improving everyone's health!!

How was your night sirzy?
DS was up a lot coughing.... at the moment my 13wk old baby is sleeping better than DS!

Lara, glad he is doing ok

Lolli. hope you get some sleep soon!

DS is ok this morning and didn't sleep too badly

How is everyone doing?

Found you!

I KNEW there was a thread for wheezy breeks!

Quick summary - middley Grip has "difficult and severe asthma" He's now 7.5years, and his chronic management is excellent. Acute stuff, not good - a few HDU admissions and, since September, has needed between 40-5mg pred. Every time we get him off steroids, he lands up on the ward. 9 admissions in the last year, 18 other A+E attendances, it's really not very good.

No sensitising agents in home environment have been isolated - he's got wooden floors, no curtains, minimal clutter, toys are frozen/washed. He complies with his meds and school do too.

Ah, we do have budgies. But, he's not allergic to feathers and I'm scrupulous about wet-dusting. However, I've ordred an aviary, they can go outside just incase.

Now, the steroids are a problem, start of some gastric probs, skin probs and for investigations for adrenal/bone health coming up.

He started on LANSOPRAZOLE 30mg, "fast tab" yesterday - had nausea yesterday, puking today.

Anyone else had a kid on a proton pump thingie? Are there other options, or should we stick with it and see whether side effects settle?

Sheesh. We could do with a break from the stoopid wheeze, it's been a looooooong winter.

TIA x

Hey sirzy,
All good at the moment, just got DS off inhalers. He has got an ear infection at the moment but other than that he is ok!)

Were going to centre parcs on Monday so fingers crossed he will be well next week, taking a stack of inhalers just incase!

How's DS ? X

Sorry gussie cross posts,
Gosh sounds like you've had a rough time!

I don't have any experience of the meds your DS is on, my DS is on seritide, ventolin and montelukast.

Is his asthma more viral induced rather than allergy induced? Whenever DS has an attack he always has some other underlying issue, like a ear/throat infection ect.

I would carry on with the new meds he has been given over the weekend and if he is still showing side effects after Monday maybe give his consultant a call for advise to see if its normal.

What sort of problems is he having from having the pred? It's always a massive worry of mine with the amount of pred DS has had, last year he had 14 courses of it his height and weight don't seem to have been affected.

That sounds hard work Gussi, DS asthma is hard to control but thankfully nowhere near that level. I hope the new tablet helps him.

DS is plodding along ok at the moment but still needing 20 puffs of ventolin a day to keep him stable so going to try to get his appointment with the consultant moved forward to see if their is anything else they can do.

yep, it's been grim.

To be honest, I hadn't realised how bad it was until school started screwing me over with idiot plan reviewing their classroom policy for next year and wanted to move my youngest boy into a P2/P1 composite. Only the shape of the comp would be him, three wee girls and a boy with special needs in with 20 brand new p1s.

Apart from the educational mess challenges that would bring - moving my youngest kid away from his social circle screws me over would be difficult. We don't have local family support - so I rely on the network of friends I've built up to sweep up my other two when wheezy breeks has a crisis.

The thought of not having that, well, I've felt traumatised, frankly. Having to write an appeal and reflect on all this stuff has been hard. I don't want to think about it, I just want to be grateful that I still have 3 kids and move on with the usual chaos of life.

To be honest, looking at this list of admissions and drama has really, really upset me. Hey ho, it'll all work out, but, it's wearing.

So, he's viral induced, got a few allergies, but nothing too dramatic. On seretide 2puffs/day, salbutamol 4 puffs a day, monteleukast and pred now dropped to 5mg for antoher 10 days - then off for 2 weeks and see what bits of him have been knackered.

His growth and weight are fine. He's pale, his skin breaks down, he is high as a kite, he has headaches and now, a lot of gastric symptoms.

I'm going to not give him the lansop tomorrow - he's just been puking again. Poor lamb puts up with so much, he's utterly compliant.

So, in short, the steroids havnt' been too bad. Let's face it, there's been no choice. His wheeze wasn't compatible with life, so the risks were worth it. Not now, though, needs off them before the rest of his systems are stuffed.

Wearing.
I

What strength seretide is he on? Can they not increase that?

Not really, Sirzy - he's on 125mg, which the (lovely) asthma nurse said was an adult dose.

To be honest, there hasn't been any choice about the pred. He goes from beign slightly under the weather to being blue in 3 hours if he gets a virus. But, it's not every time. He's entirely unpredictable.

I'm happy about the pred, as I said, there wasn't an alternative. He goes onto 40mg for 4 days, then reducing over a month. But, he always gets a virus before reaching the end of the month, prob because his immunity's gubbed because of the pred.

The worry I have is the proton pump inhibitor - he needs it as they think there's a risk of ulcer, he's had a Lot Of Reflux. But, he's puking, proper projectile puking.

Try for another day (this is only day 2)?

Oh gussie, sounds awful and I really hope the manage to get it more under control for him soon poor little man

Ds is only 2.6 so I don't really understand all the P1/P2 school stuff?

Like you said though, there isn't really another option for the pred, and if he need it, well then he needs it! I really hope the investigations go well for him and its good results. I'm too scared to look at the side affects of pred, and I also think there has been no point as there is no other option

Could you try and speak to his consultant over the weekend? Or if not I'm sure you could phone the childrens ward tonight that he is normally admitted to and ask for a doctors advise, I've done this in the past and they have had a pead call me, might be a good option then they can decide?

I've never really thought of his asthma as awful - we only live 20 mins from the hospital, so, I've only every thought "wouldn't it be awful if we lived on an island or somewhere you have to pay for healthcare?"

But, yep, actually, it is awful.

I've lived with fear, and didn't even know it. Seeing your kid struggle for breath, whilst being calm and jollying him along - it's hard work.

Anyway, the lovely asthma nurse put m in touch with a patients and families advocacy service. They'll help me write the appeal for the silly composite class so that smallest grip isnt' part of it. And,they have offered me some counselling.

I am ok in myself, but, she said something interesting. That, families with illnesses which are unpredictable in nature can have more trauma than something unspeakably awful like cancer. Because, although cancer's clearly horrific, you know pretty much what is going to happen and when, so, you can sort of make sort of plans. Whereas, our kid can be fine one day, and in HDU the next - so, there's a constant, low grade anxiety. Interesting stuff.

Anyhoo, I took your advice and called the ward. Off med, for review. He's still nauseous, but not puking. Of course, it could be the gastric problem causing the puking and not the new drug. Sigh.

Thanks for your kindness, I've never used this forum, but I'll keep an eye on it from now on!
x

I think when your child has chronic health problems you find yourself always putting on a brave face, even when you are constantly on standby which realistically can't be a healthy way to live.

The first sign of a cold and I start to worry, and its hard as he gets older as you have to hide that from him so he doesn't feel like its something to be scared off

Yep.

And, also, because asthma is SO common - people don't really understand that their wee one's brown inhaler once a day isn't really the same as your kid's recurrent admissions and refusal to respond to medication at all!

Folk think they understand, so, actually, there's not much support as they underestimate the seriousness.

And, also, what help is it anyway? He's fine day to day. It's the sudden drama which is where I need help, and that's a night-time thing.

As an aside - someone told me that severe asthma is classed as a Special Need, and that you can get carers' allowance if your child is friable and needs lots of care.

Anyone use it?

I'm a bit mixed - folk who need benefits need benefits. We manage, but, if it wasn't for the asthma I'd have a job. With the job I'd get football club, and music lessons - bagpipes is his instrument of choice (ugh) But, it's all positive airways pressure, so, actually, it could be great! And, we live in Edinburgh. any teenage boy in a kilt who can play the bagpipes makes a fortune busking in the Royal Mile during the Fringe...

I do some work for myself - but, it's a start up and not making any money. It's really only to keep my professional registration up. I think it'll work one day - just not yet.

Anyhoo, I can't take on a contract until he's better, so there's no cash for extras. But, we are, by no means, struggling. My kids THINK they are because they are denied skylanders, mind....

Hello all.
Sorry I haven't been on for ages!
Can I ask some advice?
Ds2 (4) has now been dx as asthmatic - this is after constant coughs/chest and breathing problems since last July.
Ds1 and dh are asthmatic too so shouldn't have been too much of a shock but I am struggling with it for some reason. I feel like I didn't do enough to get him dx.
He is only on a preventer twice a day and ventolin as needed but last month we had to take him to a and e with croup and has had oral steroid for that which did help a bit.
He was also swabbed for WC which came back clear, thank god.
Within one day of starting the preventer the coughing stopped. Which is great.
Except that he has now had a cold for 2 weeks and its not getting any better.
He sounds very ruttling and wheezy and is now asleep. Not eating as much as usual.
Do i take him to the gp? Will he just tell me that it's a virus and he will cough for 6-8 weeks (this is what they usually say)
He has had a slight temp today too, nothing major.
And to add to all this ds1 - he hasn't needed to use his inhalers for nearly 18 months - is also now back on his preventer and it isn't helping :(
I just feel like its one step forwards and two back.
Sorry for whingy post, but just dont trust my own instincts anymore :(

Gussie...I know someone with brittle asthma that gets DLA.
Is that what you mean?

...and is it me, or has this winter been horrific?
Never known it so bad.
My dc have been constantly ill since October.

If your worried then take him to the GP

How long has your DS1 been back on the inahlers? If it is the brown one that needs a few weeks to be properly effective

I think I will, thanks.
Dh is not helpful in this regard.
When he got rushed in last July he wouldn't even phone the ambulance for me because "he was too upset"

Ds1 has been put on flixotide (sp?) and has been in it for 5 weeks now. Before that he was in beclomethosone (sp?)
I am so tired.
All I seem to do is sleep and stay up with ill children! :(

I guess that's what I am worried about...that its a chest infection now.
Bugger.
He won't be happy about missing pre shcool!