coughers/wheezers (but not - yet?- diagnosed asthmatics) support thread

[Monkeybird]

Dear all

This kind of started here when we realised quite a few of us have persistent coughers and wheezers but they either are not asthmatic, are too young to have been diagnosed as asthmatic or are post-infection (eg bronchiolitis) and are just prone to coughs, especially in the winter.

One of the problems I have found is that while there are asthma nurses and clinics to help those diagnosed, if they're not asthmatic, you have lots of worries but very little support. Not to deny it to those who have asthma but the number of times I've been stuck with a coughing wheezing baby and had nowhere to go...

It would be helpful for people to post here:

experiences
what helps
what doesn't help
what your doctors said
what the research says
what help you can get out there
what treatments, equipment, home solutions you use

and whatever else you wish to add...

I will post my stuff shortly but handing the thread over to you all and please bump from time to time...

Running a very hot bath with the windows and door shut to get the bathroom nice and steamy.

Sudden change of temperature

My gp said "have you given her some of your ventoline?" to which I said "NO" your not supposed to give your medication to anyone else - are you? This was on an occasion when in the night she was having problem breathing and I had to take her at 11pm to the clinic to meet the on call gp there.

My dd1 was admitted to hospital on her first boxing day with bronchiolitis and has sometimes had problems over the years. Now the gp will not give her a perscription for ventoline but has told her to use mine when she is wheezy. I don't really understand this??

I try to keep her vit in take up though the winter months to prevent a cold in the first place. Last winter she had a lung infection and was bad for some three weeks - this year am trying iron tablets aswell to help prevent the colds and sniffs.

Scarfs around the moth and nose area he to prevent cold air breathing - which seems to hurt.

My dd1 is now 15 so not a baby anymore.

Should say that DS1, now 8, grew out of coughing about aged 4. DS2, now 3, is still a cougher/wheezer but this winter so far much less bad than previous so hoping he is going the same way. No one has asthma in my family and the GPs are reluctant to diagnose though both have had ventolin and atrovent at various points. DS2 has ventolin with a spacer and facemask still.

DS3, just 4 months, has just had his second chest infection and was in hosp but for a different symptom. No wheezing yet but persistent cough now. Am just assuming he will go the same way as others but obv hope not.

What made it worse: like others, sudden cold or getting cold makes it bad. Always bad after a cold but not always this that causes it. Dust sometimes a problem but not a major cause.

What helps: ventolin inhaler sometimes but not always. Both oldest have had nebuliser in hosp a couple of times when babies. Always sent home with doctors scratching heads and saying just get on with it, nothing we can do!

Warmth: we find we have to keep bedrooms much warmer than recommended by other guidelines. Costs a fortune in heating bills. We also use baby sleeping bags to prevent kicking off of covers. But this has to be carefully juggled though since if they get too hot and then sweaty and cool down quickly, then this also sets them off!

we use the inhaler as a preventative sometimes - eg when toddler has finished a cold, is coughing and needs to go out in cold, or before bed at night.

Picking up and rubbing back skin to skin helps mine...

Have never tried humidifier (would be grateful for advice, suggestions on this) but have spent many nights in steamy bathroom

More later....

Ds (19 months) has been wheezing and coughing since bronchiolitis last November. Took forever for the GP to accept that it might actually be an issue, and he went on Atrovent in March, which helped, but not entirely. In May GP felt that a chest x-ray might be a good idea - turned out he had pneumonia. Course of antibiotics helped, but then went back to coughing - another chest x-ray showed partial lung collapse. Got referred to a consultant whilst on more antibs - fab consultant did allergy tests, cf tests, immune system tests, adenoid exam (can act as a resevoir of infection), and gave 4 weeks of antibs and chest physio to shift the mucus blockage and changed him to Ventolin as was now one.
Apparently Atrovent is best for under ones as their problems are due to mucus over production, not airway spasm, but this changes and then Ventolin is best if wheezy.
He didn't start him on steroids then as he said many littlies stop wheezing in the summer, and to wait and see what happened in the winter.
DS is now on inhaled steroids and ventolin with spacer and the steroids are mostly keeping it under control. When things are bad, we've found a Karvol diffuser seems to help, and he now has a pillow. Consultant recommended keeping the bedroom warm.
Other thing that consultant told us is that you can give up to 10 puffs of Ventolin in 4 hours if necessary. This is still lower than the dose from a nebuliser, but apparently just as effective when used with a spacer. Pharmacist and our GP weren't happy with that dose though ! Has kept us (just) out of A&E though.

cmotdibbler that's really useful info, esp on the Atrovent/Ventolin stuff...

I'm interested to know:

a. who else uses some sort of humidifier/diffuser and how well it helps? How do you use them?

I took everyone's advice and last night with lots of coughing, as well as having the heating on full (again!) I put wet towels on the radiators. Seemed to help...

b. does anyone else limit dairy products in older kids and does/has this made a difference to their coughing? This might be my next line of attack with the 3 year old...

Please post more experiences, tips, problems with coughing/wheezing...

Forgot to say - no humidifier. We had so many problems with damp in our old house, that I'm loathe to introduce it here.

I'm told that dairy doesn't actually increase mucus production, but its always worth a short try, but you shouldn't cut it out long term in kids without dietary advice.

The other thing I meant to say was not taking no for an answer from the GP - the consultant said that all kids under 2 who are long term wheezy/coughing should be investigated properly to check for all the possibilities.

I mostly avoid dairy with both my DC's (20 months and 4) and i think that has helped. They still get coughs and colds but they don't seem to get wheezy or chesty with them. Also at the first sign of a cold i put the humidifier on overnight in the bedroom. It means they breathe in steam all night and it seems to stop any colds from becoming wheezy. HTH.

DS (14mth) has salbutamol, currently 4 puffs every 4 hrs, beclazone 2 puffs every morning and night and a powder medicine montelukast daily. His wheezing s still not under control hence all the recent admissions, where he so far gets away with oxygen via nasal prongs. He has been tested for cf, and immune problems, but sees respiratory consultant next week, and more tests seem likely.
It really is awful, there seems to be no let up for him. So far hospital have said he has viral wheeze, or "wave???"
Poor mite has no energy to do much at the mo, and a 10 minute burst of energy results in a horrid wet cough which invariably leads to mucousy vomit....nice.
I will read this thread with interest, considering getting a vaporiser or humidifier..infact anything's worth a try.

Re Dairy products my mum was told by a quack to aviod dairy products, this reduced her wheezing more than anything else.

Problems though in later life with lack of calcium and bone density.

So be warned!

The diary products aid the mucus making.

There's plenty of calcium in other foods. I give my DC's a combination of rice milk, oat milk and soya milk all with added calcium plus they do have a little bit of cheese and yougurt but not a lot. The calcium in dairy is actually hard for the body to absorb. But since I have cut down drastically on the dairy I have definately noticed a huge improvement in their wheeziness.

what age have you been told they will diagnose asthma. ds is 18 months and they say he is too young atm.

Addicted, I was told that under 4, the receptors in the lungs that respond to salbutamol are underdeveloped. Since according to the people I've seen (though only general paeds and not chest specialists...) asthma is diagnosed more by whether it responds to treatment, and so they can't be sure whether it is responding to that age...

...I'm not sure if that makes sense or not, and/or if I've just had poor advice, but both GP and paeds have steadfastly refused to call it asthma, and instead called it post-infection wheeze or somesuch, based on the fact the little ones simply have smaller tubes. So they call it 'asthma-like' symptoms in my case.

Seems (and crossing fingers here for the younger two) that they are indeed right, since my DS1 has no such symptoms now...

Ds had lots of problems with his chest esp up until he was 12 months - he's much better now, touch wood, but he's on all the possible meds as well - steroid inhaler (the purple one, it helps much better than the brown one in our case), salbutamol/atrovent as needed, singulair granules and prophylactic antibiotics.

He still gets a bit rattly sometimes with a cold but what I find helps is to put the steam sterilizer next to his bed without the lid on and to let it steam for 15 mins, sometimes longer.

oooh now that's a good idea! (steam steriliser...)

What are singulair granules please...?

info here

thanks - we've never been offered these by GP etc but perhaps that's because they haven't diagnosed asthma. I might ask anyway if this winter gets particularly bad...

So, has anyone tried any herbal or supplements or homeopathic or other such 'remedies' for cough/wheeze...?

Same problems with ds1, 2.8. bronchillitis at 10mths, ventolin prescribed, GP kept ??asthma. Fine over summer, decided no asthma. Winter comes - here we are again - every cough/cold = bad chest infection. nearly hospital admission at xmas as left lung full of gunk. (Seen by another crappy GP a couple of days before and we were told he chest was clear!) Now we are back to querying asthma again. I suppose in spring/summer we will get the all clear again.

Things that dont help - very warm rooms/very cold rooms. Sudden changes in temp ie coming inside after being in the cold outside. Chest infection every time he cut a tooth.

Things that help - elevate bed, steamy bathrooms when bathing, never used humidifier - just put wet washing on clothes horse in his room at night and plenty of wet washing on the radiators during the day if the heating has been on a lot.
Ventolin before bed, plus up to 3 x more in the dayat the first hint of cold/cough - as advised by the trustworthy GP.

Which brings me to probbly my best bit of advice for what its worth - MAKE SURE YOU SEE COMPETENT GP WHO'S CLINICAL OPINION YOU TRUST, WHO OFFERS SOUND ADVICE AND EXPLANATION AND WHO LISTENS SERIOUSLY TO YOUR CONCERNS. DONT BE FOBBED OFF.

DS2 41/2 mths, first course of antibiotics for chest infection at 3 months.

Never tried homeopathy/herbal stuff - can be powerful stuff and little ones can react funny to things at the best of times - I wouldnt trust it with my boys. Plus how do you know the person advising you has any knowledge/training.

I feel so much more reasurred not I have read all your experiences, I cant tell you. i was beginning to think that there was something sinister going on for ds1 bless him.

sorry for long thread, just got excited at the chance to compare notes.

You see, me too BJ - it sounds awful to be reassured by others in the same boat but I've found it dreadfully isolating to have this over and over again to have the GP say well we can try this but it probably won't work, to sit up for nights and nights and nights of coughing while trying to be back at work, and to ring NHS direct when they go white, to drive to the out of hours clinic for the nebuliser and to end up in the paeds ward and again they go 'yep well it's not asthma so you can try this inhaler but it might not work and no you can't go to the asthma clinic for support/advice from a specialist nurse....' etc etc...

So I'm actually really glad to know there are others out there managing exactly the same thing.

And another anecdote/old wives tale: one of my mum's friends said this coughing/wheezing was always thought a long time ago to be a problem particularly of large male babies. Well all mine are male and all were large at birth (circa 9-10 lbs each) and all cough... But 3 babies doesn't really make a proper sample does it!?

to add to the sample ds (despite having dwarfism) was 10 lb 4 at birth, so there you go... I've heard that too btw.

In a way we are "lucky", because ds has a condition they took the lung problems much more seriously and we were referred very quickly to a lung specialist.

ve a DS 2.9 who had respitory distress at 4 months (middle of summer) and needed ventialtion and gain the following month.

We were test about 16 times for CF and in the end the diagnosis we have is Transient Respitory Weeze, which translated to we havent got a clue.

DS1 is treated very well by the local respitory specialist and currently medication wise we use upto 10 puffs of ventololine upto every 2 hours.

Nebulisers are no good for him, as they are very counter productive - he has really serve tacicardia (Sp) heart rate on them.

Tried Atrovent - did not help

3 month trial of Becotide - no differnce made - this tends to rule out asma, as it inhauled steriods assist asma sufferers

Tried Singlair - hopeless turned him in to a sleepless, night terrored, rage filled demon

Predineserone tablets - upto a five day course.

Humidifer in his room used every night - really helps

We are going to have an MRI scan done as the next step, as he is showing some signs of his ribs recessing sue to the effort it takes to breeth sometimes and from the recessing.

Anti-b's tend not to help, as it is viral most of the time

So can someone advise on humidifiers etc? What type, where do you get them, how do they work etc?

Do you use Karvol type stuff also? (I thought you couldn't use this for small babies? My littlest cougher is 4.5 mo but might start again with the 3 yr old)

Hi monkeybird, great thread some good advice and its nice to know you are not the only person up every hour with a wheezy coughy baby!
My DD has recovered well today and is feeding well again. Such a relief but shes just wheezing away happily, trying not to get to optamistic as she seems to be so up and down.
We use baby olbas oil in her bedroom, on damp towels on the radiator. Would like to know about humidfiers too. Hope everyones LO's are soundly asleep!

Should say another thing I've also tried is propping the cot up - though I've had different people say you should prop up the head and the foot!

We've found better results propping head end up though makes little diff in end since 3 year old ends up sleeping all over the shop most nights...

I have recently seen those bed blocks you can buy but they seem quite expensive and we've just used lots of thick books (though it does squash them so has to be books you don't really want to read again!)

Have also started vacuuming and steam cleaning mattress, curtains in toddler's room, just in case it is dust mite related. No noticeable difference as yet so guess not...

It sounds like we are in the minority few who have access to the asthma specialists (sheffield childrens) and a respiratory consultant without the diagosis of asthma.
My DS was a 10 lber too, so theory of big boys holds here. DS is still a really big solid chunky lad, and it seems surreal sometimes to see such a healthy looking child coughing and gasping.
In my heart I guess I know all the medication I give daily really doesnt seem to help, and he has rarely been wheeze free in the last 10 weeks. I feel like his main prob is the vast amount of mucus he seems to have, even when well he rattles
At the grand old age of 14 months he has had 13 courses of prednisulone, that cant be good.
My biggest fear is permanent damage to his lungs.
We do have a dog, and some guinea pigs which come in , in the winter, so have considered allergies, but surely the problem wouldnt seem so seasonal?
So, talk to me about inhalers ......do you all have to literally hold your LO's down to give them? It is much more managable with 2 people but not always realistic. He hits, kicks, but saves biting for unwary nurses . I have to sit on floor with him inbetween my legs, with mine over his, hold across his chest and arms with 1 arm, and give puffer with my free arm. Not easy at all. I seriously thought the amount he has, he would be used to it by now.
I have tried singing....cant hear over his shrieks.
decorating spacer..very unimpressed
let him play with spacer....just takes it to pieces and hides it
So anymore tips?

this is a great thread Monkeybird
DS had bronchiolitis at 14 weeks and I have noticed that when he gets a cold (he's 10 months now) he does get wheezy very quickly. he's not been that unwell since, but we have used the atrovent we were given back then quite a lot. pretty much always have his cot propped up now as he's generally so snotty

Shall keep an eye on this thread as I do feel that this may only get worse. And he was 10 lbs 5 at birth so the theory is holding good...

Be careful with humidifiers unless you're completely certain it's not asthma. Humidity is what dustmites thrive on and dustmites are a proven cause of asthma.

I actually use a dehumidifier for my two asthmatic children.