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Original poster

Wheezing into 2013 - Support thread for parents of asthmatics

993 replies

Sirzy · 26/12/2012 14:19

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!

OP posts:
Original poster
Sirzy · 26/02/2014 09:35

Thats like DS was at that age, bronchiolitis has a lot to answer for. Hope you get him controlled soon

OP posts:
lollipoppi · 26/02/2014 17:45

Sirzy that's good news!

DS is doing much better this afternoon, still on 8puffs but will drop it to 6 tomorrow

Itsme that sounds very scary, and very similar to my DS
Hope you manage to get a preventer

lollipoppi · 26/02/2014 18:17

Also quick question, do you ask school/nursery to keep you child indoors if it's cold or wet?
Mil thinks I should write a letter to nursery to ask them to keep him indoors (well actually she has called nursery without my consent to tell them this) and they've said they need it in writing from the parent

Apart from the fact I'm a bit livid she has done this, whilst I want to do everything I can to keep DS well, I also don't want to exclude him from everyday activities!

Original poster
Sirzy · 26/02/2014 18:19

I don't, at nursery so much of the time is spent outdoors that I think it would be wrong to stop him from joining in in that - nursery are fantastic with making sure he is wrapped up and encouraging him in at the first sign of a problem anyway. He actually attends an outdoor play session for 1.5 hours every thursday through pre-school which he loves!

The only thing he has had to miss when he has been in is a PE session, but normally he is fine even with them as long as he has ventolin first.

OP posts:
Rachelbloy · 26/02/2014 22:15

Evening, last year I wrote a thread that my daughters asthma was gradually getting worse and some of you lovely people gave me some great advice, well here goes:

DD is 2yrs 2mths, it's been a long road getting her diagnosed asthmatic, I understand she is very young to be diagnosed. She had a stay in hospital in July 2013 following an attack.

She's been wheezy since December 2013 but nothing too bad that we can't handle at home. She is on ventolin, 50mg clenil and a daily tablet of montelukast but the last few weeks from the minute she goes to bed all she does is cough.

Sunday morning we had a trip to the walk in clinic where he prescribed a 3 day course of pred (chest was tight and wheezing but no crackling) she has now finished the pred but is still up all hours coughing.

DD is under a consultant but has only seen him once in dec and her next appt is April.

She's fine during the day, occasional wheeze but after her inhaler she's fine, it's the night times that are troublesome and so frustrating.

I'm sorry it's so long winded but any advice anyone can give me would be soooo appreciated, do you think I should take her to go unit or speak to my (not very understanding) doctor, she's so tired all the time and even though she's had pred not got a great appetite, thank you x

Original poster
Sirzy · 26/02/2014 22:19

Have you tried damp dusting her room, removing soft toys and whatever to see if that helps?

Do you give ventolin before bed?

OP posts:
Rachelbloy · 26/02/2014 22:27

Hi yes I damp dust (husband is also asthmatic and his mother told me to do this) I don't use aerosols either, air purifier in DD room, currently sleeping upright, her consultant told me to that when she is well to give her 2 puffs of brown morning and night and blue as and when she needs it, when she's ill to give her 4 blue in the morning, mid morning, mid afternoon and at night and 3 brown morning and night (hope that makes sense)
She doesn't have toys in her room either, they're all downstairs, also has laminate in her bedroom not carpet x

Badvoc · 27/02/2014 12:07

Humidifier?
That helped ds2

isitme1 · 27/02/2014 14:36

Rachel ring your hosp switchboard and ask to be put through to the consultants secretary they might be able to fit you in asap x

Rachelbloy · 27/02/2014 16:59

I'll invest in one and see if it helps, I'm willing to try anything at this point.

I never even thought of doing that, thank you hopefully they can her appt closer, can't keep going on like this.

She only woke up twice last night but that's maybe because she was like a zombie before bedtime, she's so tired x

Original poster
Sirzy · 27/02/2014 17:31

Even if they can't bring the appointment forward they may be able to advice over the phone. I have phoned our consultant a few times - last time he even changed meds over the phone

OP posts:
Badvoc · 27/02/2014 18:52

agree about phoning. I have done that a couple of times in the past.
Dc have their next appt in April so hoping to last til then!

lollipoppi · 16/03/2014 15:12

How is everybody doing?
DS asthma seems to have really flared up at the moment. He had an admission only 2 weeks ago and now "the cough" has started again today. Inhalers don't seem to be helping him too much but he isn't struggling just yet

Original poster
Sirzy · 25/03/2014 15:59

Quick bump. Hope everyone is ok!

OP posts:
WellThatsLife · 26/03/2014 23:46

Since she's been put on seretide she's been great, hardly using her blue. Hopefully with the montelukast we've found the right combination. Unfortunately her hayfever's now started

lollipoppi · 27/03/2014 13:52

That's great Wellthats!

DS is doing ok but still using a lot of blue, he just doesn't seem to have fully recovered from his last admission

gussiegrips · 31/03/2014 00:31

Am hoping that someone recognises my situation.

DS is 8, had bronchiolitis and RSV at 8 weeks, then diagnosed brittle asthmatic.

It's been desperate since August - 4 life threatening episodes and not off prednisolone at all, in that every time he weans onto 5mg he's sick again and back up to 40mg.

He's on daily pred, monteleukast, cetirizine, fast tab lansoprazole, seretide 124mg am/pm. And, that's just not working. He's currently on an antibiotic too.

He's virally driven - so, we've got antiallergy stuff, no furry pets, wet dusting, no carpets/curtains/soft toys and disposable pillows, but, really, it's just that he's immune suppressed from the steroids. Fortunately, he's a compliant kind of kid - getting him to take the drugs is a doddle.

School attendance is about 65%, but, we're now getting some input fromt he HOTS team, which is great.

We've just had a shocker of an episode. He's had neruo signs, which they think was a viral meningitis related to his immune suppression. Grim. he's fine, now just post-viral, and waiting to see whether they'll take him off the steroids altogether and trial xolair.

I appreciate that we're the kind of dramatic end of the asthma spectrum - but, anyone out there with a similar set up? Anyone else on xolair, and want to tell me that it's like a magic wand?

Anyone got tips about how to jolly along a wee boy who just wants to go to school and cubs and football?

I'm running out of "brave". Poor kid's having such a shit time and I'm finding that my grin has long since become rictus.

Sigh.

WellThatsLife · 31/03/2014 23:24

Sounds like you're having a dreadful time gussie, hope you get him sorted soon. Spoke too soon about dd as back on 40mg pred due to a cold her sister brought home. We're trying to get her attendence up as hovering around 80% at the moment

Badvoc · 01/04/2014 08:14

Gussie..that's awful, your poor boy, and poor you! I only know person with brittle asthma and they are an adult and they have multiple food allergies as well. I think she is on xolair and has been for some time.
Well, ds2 off school AGAIN - tonsilitis this time.
But it's ds1 I'm worried about now...he is nearly 11 and at secondary school. Been managing ok on just 2 x puffs of flixotide at night for months now.
But since Friday he has had that cough so I took him to the gp yesterday and he is now on 20mg of pred for 5 days. He hasn't had to have pred for about 5 years :( but in the past it pretty much stopped the cough in its tracks, and it isn't this time. He was coughing all night again :(
My question Wwyd? - give it til Friday or take him back and get his chest listened to again?
Thanks x

Original poster
Sirzy · 10/04/2014 09:19

Gussie, that sounds awful Sad

DS is back at his consultant today.

OP posts:
lollipoppi · 10/04/2014 09:21

Gussie, your poor little chap, that sounds terrible.

How is he doing now? Have they put him on the xolair?
I would push for it as that amount of constant steroids cant be good. What preventer is he on?

Badvoc how's your DS doing now?

DS is ok, although he has been on ventolin daily for months, every time I take him off it he coughs and I can see his breathing increase. I've just kind of got used to giving it him daily now along with his preventer

isitme1 · 10/04/2014 09:25

Found the thread again yay!

Ds2 is still wheezy and gp wont do anything Hmm
once we see paed will get him to do something
Gussie how is he doing now

Original poster
Sirzy · 10/04/2014 13:54

Lolli ventolin has become part of our normal routine now to.

Is it me - when do you see the pead?

DS has now been put onto a nasal spray to see if that helps. They aren't happy with him but don't want to increase inhalers if they can get away with it

OP posts:
isitme1 · 11/04/2014 13:24

He sees them in August when im due!
Obviously if he gets worse will get him checkd again

Badvoc · 11/04/2014 13:28

Ds has had 11 days off school in the last 15 :(
School are getting shirty even though I keep them fully informed and he has been to see the dr several times.
I have sent him back today for the last day of term but he was upset :(
I feel like such a terrible mother.
Why does he get so ill!?
He is having bloods done on 22nd and goes back to see paed on may 15th - what should I be asking?
:(