My DS has severe asthma and I need any tips on helping him breath easier

[souschef]

Hi all, i need some advice..

My ds has moderate-severe asthma. He has been diagnosed since he was 2. He is up coughing most nights and is getting exhausted from lack of sleep. He has recently started nursery every day so is missing out on the naps he would usually be able to have during the day. He doesnt have asthma with much of a wheeze, he just coughs his little heart out as soon as he lays down. My DH and I sit up with him in our bed so he doesnt wake his brother up (they share a room)He is on various meds and it seems to be hit and miss if they actually make a differance at all.
I just wondered if anyone else has any simaler symptoms with their ds/dd??
And what seems to help them medication wise/alternative?
we are all utterly exhausted!

Many thanks
xx

I think you need to see a consultant asap, ring GP in the morning for a referral, and in the meantime book a review appt with GP

what meds is he on?

do you use a spacer or face mask for the inhalers?

what's his peak flow (do they measure children?)

hiya, GP's tend to advise steam..like have you got a little bathroom that you can boil the kettle in or run a really hot bath. Obviously you'll need to watch little man cos boiling water is dangerous. You need to try and ger it very steamy almost like you are in a sauna. Also, raising his pillows may help to ease the coughing and lying on his side may help too.

Hope this helps a little and your ds is ok
Lauren xx

Hello, Thanks for replying!

He is not bad at the moment, nothing we cant handle with his inhalers and other meds and has a reveiw on weds so honestly its not urgent today. And when it is I am more than on the ball! we see the doctor nearly once a week, and we see his asthma nurse for reviews once per month. Depending obviously if it seems to be as under control as his can get.

Some weeks he is fine others he is not. Our surgery are fantastic with him but its so volitile for example in one week in december he had 4 asthma attacks. there are no obvious triggers, none of us smoke, no pets, no dust etc. The only thing we know makes it worse is the weather, cold and damp makes it 10 times worse.

he is on Ventalin, Atrovent, Singulair and 100 mg becotide. That is daily, morning and night and obviously as much ventalin and atrovent as and when needed. After/ During an attack he is placed on strong steroids.

No they dont mesure peak flow in children, and yes he does have the spacer with the face mask. im asthmatic myself so i am relatively good at reading the signs. its just so awful when its bad i wonder if any one has any ideas on anything else i can try/ speak to his GP about.

Thanks again x

Hello,

My DS also has bad asthma. It sounds very much that you need to increase the steriod inhalers -

if your DS is 100mcg of becotide a day, that is really not much (indeed I think it is the lowest starting dose ) - I guess he has one puff in am and one puff in pm of the 50mcg becotide.

It could be doubled quite easily and that it is often what we do when DS astham is bad. (But I am not a doctor, just going on my experience).

Eg DS was on 400mcg of becotide a day from Sept to Jan, now dropped down to 200mcg a day,. Before this he has been on very high levels of seretide - which is another type of steriod with a long acting releiver in it. That is the next step after becotide is not working.

Dd is 2 and doesn't have diagnosed asthma but does have a ventolin inhaler for recurrent chest problems/wheezing. She often coughs at night. We have found raising the top of the bed helps and having the window open a little bit to let fresh air in. The best thing we have found is a humidifier. We bought it from Argos and it was money well spent. It produces a fine mist of steam and stops the air getting dry. It makes a huge difference when she's having a bad patch. Good luck and I hope you find what works for you.

other things to think of :

laminate/wood floor in his bedroom if you have carpet

damp dust the floor/skirting weekly

anti-dust mite pillows

raise the head of the bed on books so that he is sleeping at a slight angle, head higher than feet

Thanks for the help. I think we will definately invest in a humidifier! We have tried the steaming in the bathroom, but I would find myself sitting on the floor of the bathroom with him on my lap at 2oclock in the morning for hours and it would just not shift the tightness and coughing.

With regards to his Becotide, I have asked for it to be increased and we do change the dosage as and when he is having a rough patch but the last time i asked his asthma nurse was reluctant to put him on the 100mcg per puff because of his age? he is 3, I'm not sure if this sounds right but I do tend to just go with what they say! The most we have been told would be ok to give him was 3 puffs at a time which would equate to 150mcg in the morning and 150 at night.

Also, do you know how much venatlin and atrovent is ok to give? obviously they are both relivers and ive been told up to 8 puffs of each during an attack? Its just after too much of the ventalin he seems to get the shakes!

DS is 14 months and is on 100mg of becotide twice a day. He is allowed up to 5 puffs of ventolin every 2 hours before he has to go to A and E, but I know as they get older that does increase to 10 puffs?

Ahh, we have never tried seretide actually, I'll ask about that one! Is it just another different form of steroid?

And yep that's pretty much the same advice I have been given, the if the atrovent and ventalin settles the attack then it's an emergancy appt with gp and if it doesn't straight up to a & e! After he has the attack they tend to put him on these little pink disolvable steroid tablets that he hates for a few days - a week I forget what they are called though!

Thanks for the help everyone and I will check out the asthma support group, seeing him struggle is the worse thing in the world! It's good to know at 3oclock in the morning I'm not the only one sitting in bed holding a spacer for my ds counting the amount of ventalin/atrovent whilst he's falling asleep in my arms!

X

My DS is 3 years old, he is currently on seretide, but it isn't licensed for under 4 years old so had to be prescribed by a consultant.

Before he was on the seretide he was on 200mcg of the becotide/clenil a day, then that was increased to 400mcg a day, all this whilst he was 2 years old, so they can definately increase his preventer inhaler. It would be far better to increase his preventer rather than him needing frequent courses of prednisolone (the pink tablets) which are far, far stronger than any of the preventer inhalers.

I would be pushing for an increase in his preventer (it is this which should make the real difference) and a referal to a consultant.

open his window at night,my son has asthma,we moved into new house 5 months ago which has gas central heating and it affects him real bad,wont stop coughin until i open windows.
Taken us this long to figure out what is affecting him

My DD's asthma is not nearly so bad and yet I am allowed to give her 200 mcg clenil morning and night at worst times - like someone else said, it is a thousand times better than the prednisolone.

My dd has 2 puffs (not sure what dose that is) of the clenil morning and night, ventolin and steroids tabs for flare ups. The severe cold is also a trigger for my dd.

Your poor little boy and poor you. Maybe speak to the nurse/gp and get the meds and dosage reviewed.

My god i need to get them to pull their finger out with his meds!! TOday he was at the childminders whilst i was at work and she had to give him 3 puffs of each of his relivers on two seperate occasions during the day and this is what ends up happening most days, and we just accept that this is ok.. after reading all your posts i see that his asthma is not being well controlled at all! Frustrating doesnt even cover it.

Well he does have an appt with his asthma nurse on weds so I will definately bring up my concerns about his preventative. Thanks for the name of the pink tablets! i knew they were super strong because as soon as he takes them his ezcema flares up masively and he gets really run down!

To be honest I tend to take what the nurse and GP as gospel as they obviously know what they are talking about, but it is nice to be armed with all this new info to talk to them about. I knew it couldnt be good for him having all of these relevers but only a low preventative. Im on Symbicort and this quite literally changed my life (sounds dramatic but true!) and if i could give him something like that I would.. but im fairly sure that he would be far to young for that!

I honestly cant thankyou all enough for the oodles of advice!

Lets hope all of our wheezy little'uns have a good night sleep! :)
xx

My DS was put on Seratide at 3 and hasn't looked back. We had to be referred to a paed to get this though.

My younger son - now 2 - is on Flixotide and this also works very well for him.

If becotide isn't working, and it sounds like it isn't, you need to try something else. There's plenty out there to try and the right preventors have made a huge difference to my son's lives.

Best of luck

x post.

Maybe try to write down a diary of just how much of his relievers he is having, so the asthma nurse can see the situation clearly.

Also get her to look back at just how many courses of pred he has been prescribed over the last few months.

That should be enough to get her to review his meds. If she won't, ask for a referral to a paed.

I really hope you get the result you want - as you say, the right meds can be life changing!