Can we start a new asthma support thread now dreaded winter season is looming?

[Knackeredmother]

Hi,
I can't seem to find the old support thread. I lurked on it during many long, lonely and frightening nights and admissions with ds over the past year and a half.
My ds is 21 months now, was hospitalized at 8 weeks severe bronchiolitis (really thought he would die) then every 3-4 weeks since whenever he gets a cold. No symptoms in between colds but a wet, crackly chest with some wheeze with every cold. Plus of course the dreaded tracheal tug and sternal recession that heralds an admission.
It is all so bloody draining and heartbreaking!
We are just starting with a new bout today after a whole 8 weeks of being well. I am debating whether to call in sick for my nightshift tonight or leave poor hubby with an inevitable hospital admission AND our 4 year old!
Anyway, would be good to hear from others going through similar so we can all support each other ( or direct me to the original support thread!)

Hi Gem, that story sounds so similar to DS. He had the bronchi at 8 weeks and ended up on CPAP and was prepared for transfer to be ventilated by narrowly missed it.

How long as she had the clenil? It isn't immediatly effective so hopefully after 2 weeks or so you will notice a difference. If not go back to your GP and if he wont help ask for a refferal.

How is everyone else?

DS ended up in A and E with a croup attack on tuesday, his chest has been awful since and now on antibiotics for a chest infection. Hoping to keep it under control at home with high doses of his inhaler.

Hope your ds is on the mend soon sirzy :(
DD has been battling on/off with croup since mid November , it's a horrible dose .

He's getting better, spent yesterday on childrens ward getting his asthma under control but managed to come home last night on pred and high doses of ventolin. Thankfully they have moved him back to consultant care rather than gp care to

Glad to hear he is feeling better sirzy can't understand how u ended up on gp care with your ds's problems glad you back under the consultant. What meds is your ds on now is he on singular?

Ds2 hasn't been well over the last 2 weeks with several trips to the gp pred and antibiotics I thought we were turning a corner but today has been awful :( just packed a few things into a bag just incase we make a middle of the night dash. (usually being prepared means it doesn't happen lol)

Ds1 seems quite stable (touches wood) but he is on high doses of maintenance meds.

Wishing everyone a happy and healthy 2012

Hope he was ok last night!

Ds is currently on 400mg of clenil a day which isn't working anywhere near as well as it should so meds are going to be reviewed at his next appointment! Meant to be moving to 6 hourly ventolin today but he has different ideas 3hr 45 mins and the coughing and wheezing starts!

Hope everyone is having a better time today. Its been so quiet on here so hopefully everyone else hasn't be having a hard time.
Ds has got a horrid cold but seems to be ok. So hopefully the seritde is working. He went up to GOSH just be Christmas and they were pleased with him. He has been transferred on to the NHS as well and is going to see a gastro DR for his allergies etc. So hopefully we are getting somewhere with it all at last.
The DR at GOSH has said they want him to have a local DR here so if he gets admitted they know what he is like when well. They will also have a copy of his notes from GOSH so they know what they are doing.
Fingers crossed for an problem free 2012

Sorry for not getting back to this thread sooner x x Ds2 managed well up until 4 then ventolin just didn't seem to touch the sides :( so off we went to a&e he was given a nebuliser in a&e then another on the short stay ward. We were seen by the doctor who was happy that we carried on treatment at home as ds2's sats were okay throughout just recession and bad wheezing.
Today has been a bit rocky at times but better than yesterday so hopefully he will be turning a corner.
The doctor did say it's bronchi season and as ds2 was rsv- then to keep an eye on him for any deterioration.

sirzy have they mentioned singular? ds2 is on that and flixotide, atrovent and ventolin at the moment.

Hello, thank you for sharing your experiences. I am on a similar path and wonder if I could join you. Our story (hopefully briefly!):

Dd is 2y 8mo. Until early oct, she'd never had an episode of wheeze. The first time followed a cold and resulted in neb at gp's and pred. During oct and nov 2 more episodes dealt with by GP with pred prescribed. Early dec, blue lighted to hosp- lots of nebs, more pred and we learnt the 10 puff technique. After xmas - GP woefully unconcerned, sent us away with pred, leading to..... Blue lips and unconscious episode, blue lighted, hosp, nebs pred etc.... Just got back from a 2 day stay.

She's now on clenil. And we have an out patients appt for 8 weeks time. So, it feels like we're being taken seriously now, which is good. But how do you deal with the fear?! We live 50 mins from the nearest A&E. Sometimes that terrifies me! On weds the ambulance arrived within about 15 mins and got her straight on a neb, which was reassuring, but I can't help thinking 'what if' which I'm sure is natural, but not very helpful!

Thanks for reading my essay. This thread is such a godsend!

Ali - at the hospital last week they seemed pretty sure he would be started on singular when he goes back. Just got to wait for an appointment to come through now. He isn't liking any efforts to reduce ventolin though we have currently managed to get to 5 puffs every 5 hours ish so think it is going to be a long haul to get it back under control this time.

Welcome festie! Hopefully the clenil helps get things under control for her, DS was in and out seemingly every other week until he started on that but now it is more controlled although still far from perfect!

As for the fear, it gets slightly easier as you become more aware of the early signs so you can react with extra inhaler and straight to A and E before it kicks in properly if needed!

In my experience GPs seem pretty useless when it comes to young children and asthma. We have been advised to skip the GP and head straight to A and E as DS tends to deteriorate pretty quickly when it starts.

Thanks sirzy.

You've confirmed what I was thinking re GPs ! Really glad the hospital have taken her on as a patient now.

Thank you also for your advice re the fear. I think you're right, I should get better at spotting when she's getting poorly earlier, and I also need to develop thicker skin. The first ambulance crew were sceptical that she needed hospitalising. He changed his tune when we were in the ambulance and her O2 sat had dropped below 90.

Need to trust my instincts I think. Hopefully the clenil will help, though I see from your earlier posts, it hasn't been a miracle cure for your ds. Do hope they find something that works for him.

Could someone fill me in on the Ribena trick too? Many thanks. :)

For a lot of people the clenil works wonders. My sister has been on it since 3 and been well controlled all that time pretty much.

Ribena in pred by any chance? Instead of mixing with water mix with Ribena/blackcurrant juice as it makes it taste much nicer apparently.

That's good to know, thanks. Should it be neat Ribena or diluted?! Sorry full of daft questions. Despite being asthmatic myself, feel like I'm completely entering new territory with dd!

Hope everyone is doing well.

quick question. After a bad attack how long do you find it normally takes to get inhaler levels back to normal? Nearly 2 weeks down the line DS is still needing 15 - 20 puffs of ventolin in any 24 hour period. Is that normal?

That seems quite alot :( is it lasting the 4 hour mark? if it is I would slowely try and reduce it and if he doesn't cope go back and see gp.
When is his consultant appointment?

He is lasting 5-6 hours generally. At the consultant on the 1st of feb so will just keep trying to reduce the amount he is having between now and then and see what she says.

I'm no expert, but I would say if he's managing 5-6 hours between puffs, then he's doing ok.

I'm being much more cautious about weaning dd off the ventolin this time, because her last episode was so severe. It's been a week, and she's averaging 24 -30 puffs, but mostly going 6 hours between now. The doctor who spoke to me before we were discharged was at great pains to emphasise that she was weaned off gradually, and I'm going with my gut.

Obviously, that said, if you find he's struggling and needing it more often, that's when you seek medical help. But you know that! :)

hi i dip in and out of here-just needing a helping hand or shoulder. My 2.3 year old, like many had bronchiolitis at 5 weeks and again at 8 weeks old, then a chest infection every month until he was 1.5. We are under a paedatrician, he has brown inhaler and blue inhaler.Since November his ches thas been bad- we honest;y have been at the doctors every other week. Nights are terrible.They ve given him antibiotics which dont work. Soluble steroids do work but then as soon as they stop the course it returns. He has a wheeze but also crackles. He does not complain about his problem which is good! I am now back at work and the child minder does not want him-he is too ill for her! I have taken him back today to the doctors and got anohter course of orla steroids- he is using his neck and rib muscles, is wheezy-upper and nasal sounds and is coughing loads-at the moment he is asleep and he seems to be using his tummy instead of his lung area to breath. i have rung his paedatrican but she has not got back to me. There must be something more I can do or give him. i up his inhalers and give upto 8 pufffs of blue but it soon wears off. Should i be demanding something else? some magical cure?

From what you have said I would be considering taking him to A and E tbh, he may need a nebuliser to help him out a bit. Any sign of recession and I have been told to take DS in.

In the long term what dose of brown inhaler is he on? perhaps that needs increasing or looking at another drug?

he was using his auxillary muscles(is that right) when i took him to gp tonight.
brown inhaler is 2 puffs morning and 2 at night, i also give 2 blue at same time-then blue whenever. He is next to me now-the steroids have helped his cough but his breathing is crackling. His breathing rate is 34 which is ok-i think?
the hospital is 25 minutes away over the moors.
i hate nights like this.

I know what you mean, trying to decide what to do is always hard I am never sure when we need to head to A and E but now work on the if in doubt get him checked idea.

Hope he is ok x

he is sleeping well- will see what he is like when he wakes. I kind of wish he complained more when we saw the doctors cos he smiles and lifts his top to show his chest and for them to listen to him. I know too that he'll be like this until maybe march- which is difficult for the child minder to understand as she thinks he is contagious. i am sure he isnt.

DS is the same, always happy even when ill. Makes me sad in a way he is so used to it, but at the same time does make things easier really. Thankfully the hospital know him well enough to know that he can be happily playing but his sats still low enough to need oxygen.

I would certainly push for them to change his medication as it should be more controlled, DS was really bad last winter but then they gave him the brown inhaler which made a massive difference, when we noticed it was less effective they increased the dose straight away and now we are looking like needing another medication to keep things right.

Hope you can make your childminder understand, I am lucky that DS nursery are happy to take him as they have staff trained in asthma management so as long as he isn't contagious and is happy in himself he can go in.

how do you know when they are contagious? i m sure he cant be because we dont get it? i think its more likely that the other children weaken his immunity so as soon as a bug catches him he responds with this breathing/cough/asthma thing?

When he is really bad he always ends up in hospital (and then off nursery for 2 weeks anyway) so I can go off what they have told us. With him his day to day problems just come and are obviously asthma not illness IYSWIM, he has never had an infection which hasn't landed him in hospital.

Well this cold weather seems to have set us back a bit :( ds2 has lost his voice got a croupy cough and wheezy so back on the pred we go :(

Ds1's school are really good at having him in although he still hasn't made a full week since september [sighhhhh] even when he was in private daycare they were really understanding and even had training from the hospital to manage his asthma plus his allergies he has got an epipen too.