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...

oh how great there's a thread for this! my dd has recurrent 'viral wheezes' which we know is just dr speak for 'being under the weather brings on asthma' but as she is only 22 months of course she can't be diagnosed. it's pretty frustrating really, and frightening whenever she gets ill.

We've had a terrible first winter ( my ds is 9 months) in hospital 3 times with viral wheeze and bronchilitus (sp).

My pessimistic advice would be if you're worried and are not used to getting then better at home bypass steam and home remedies and head to a&e. when they're young they can get ill so quickly. Mine went from sitting up smiling with slight recessions to being in intensive care within 5 hours ( sorry don't want to sound like a competitive mum of wheeziness!)

What particularly scares me is the lack of warning signs, yes his breathing seems to get worse with colds, but he can go from crawling around all day having lots of fun, eating and drinking really well to suddenly needing oxygen at the hospital.

Not that it helps any of us but my hospital said viruses come in 3 year cycles, with the 3rd being the worst and this year (the 3rd) people are getting much sicker than other times

Laying off the dairy really seems to help, he's still on 4 big bottles of formula, which thankfully don't make him wheezy, but normal milk on cereal does - how strange!

Sorry for long post, it feels like a dam of worry has burst!

p.s I breastfed for 3 months only and am now worying this contributed to it, anyone want to join me in a guiltfest or tell me not to be so silly?

Breastfeeding didnt help us. I stopped at 11 months, and he was exclusively breastfed till 6 months. No one has ever smoked anywhere near us, infact I dont think anyone in our family or close friends smoke. He was fullterm, never needed help after birth. All the questions they ask every time I take him to a+e. God only knows what the poor mite would be like if we had had any of the risk factors?

OK - I did a really large post last night but it seems to have disapeared.

We have a humidifier in each of the boys rooms. They are micromist ones and are invaluable. You can get similar from Argos.

I clean them weekly. By raising the temperature you need to increase the humidity in the air, this is often why at hospital when ventilated they are steamed as well. DS1 responds well to this, but I make sure that it is pristine clean. I am pretty sure that DS1 doesnt have Asma as we have no reaction to inhauler steriods - brown inhauler

We also were given a foam wedge cusion for DS1, which we used until he transfered to a pillow and it was great, much eaier than propping up the cot etc and also he didnt slip down it.

Excercise on their tummy also helps. ie swimming etc and it opens up the lungs and strenghens them. If they are having a bad time them lay them on their tummy.

regarding the inhauler it is really hard sometimes when they need it but dont want it. When DS was smaller it was a car seat job and arms pinned under the straps or the same with the buggy. He is now 2.9 and understands it makes him better so will take it 9 out of 10 times.

My Ds is showing signs of bone changes in his ribs due to the effort to beeth sometimes, so we are likely to have an MRI next visit to the specialist in 1 months time.

Oh and he was 2 weeks early and 7lb 2 at birth - so not sure.

We also have attacks all year round, not just in the winter

tatty, all 3 of mine were BF - oldest 2 who are both coughers/wheezers for 8mths and 6mths with the odd evening/morning feed after that...and youngest still BF and makes no difference to his new cough... So please don't beat yourself up about that! It's hard enough dealing with a cougher without more guilt..

On using the inhaler/spacer... my 3 year old now puffs away merrily without the facemask on - just puts the mouthpiece in and we get him to do 10 'clicks' per puff of ventolin and he usually has 2 puffs.

But when he was little, and the same with DS1 he was a nightmare. the practice nurse said things like 'well at least if you're holding him down and he's screaming, he'll be getting a good lungful...' So we just used to only do it when he was asleep - if in a deep sleep, just placing mask firmly over mouth and nose; if just in a light sleep, then I'd tilt the spacer so the valve was open (and I find the ones that come in the red box much better than the kids yellow ones for this since the bigger ones have a round valve that just opens if you tilt...) and then hold it over his face but without actually sealing the mask over mouth/nose...

I know this wouldn't be quite as efficient but I figured this way he'd be getting some of the stuff without all the trauma. We would try it before bed and hope he'd hold it. Both gradually did get used to it though... Then we'd do one set just after he'd fallen asleep; then another just before we went to bed...

We mostly didn't bother during the day times though except for afternoon naps only when they were really poorly...

maturestudent, ah yes, the mucus vomit. DS1 did that, (felt like) every night between about 8mths and 18mths. He used to basically sleep on about 15 towels then we'd just strip one off each time he puked! Mmmm nice. Just to keep reassuring everyone a bit though - he HAS grown out of it now and rarely gets a cough, though does get colds still.

Bridie

Would be interested to hear from you when/how the diagnosis of asthma is made - mine didn't respond to the treatments but GPs etc were always a bit cagey about it. We have no family history, no allergies, no smokers etc... And it certainly hasn't continued in my oldest and in our case IS only associated with winter colds. But it's often so difficult to know - I guess some of the people posting on here WILL end up with an asthma diagnosis at some point?

I've always been confused by the warm/cold, dry/damp things too cos I've always assumed to have a healthy chest you sleep in a cool room with the windows open! but if any of my DSs do this they cough the night away!

I'm almost dreading my move to our new house with its draughty warped metal framed windows. Though I'm not keen on the upvc double glazing in this house, it has kept it warm and draught free... Ho hum.

Thanks for the supportive messages. I guess what we're all trying to do is grasp at anything that might help, its so desparate to see them poorly and not be able to do anything about it. Thats why this thread with its questions has been so useful, thanks for starting it monkeybird.

W haven't got a diagnosis of asthma yet, but they're treating it with (lots of) asthma maedication, can't understand why they won't just call it that then.

My ds hasn't had a cold that hasn't affected his chest and breathing, so I'm so scared it will all happen again. We've been keeping him at home out of harms way for 6 weeks since the last admission ( at the Drs advice, including cancelling all xmas plans)but we're all beginning to go a bit nuts! How do you balance keeping them safe with having a normal life?

Hi everyone, haven't had a chance to read the full thread yet but will add my experiences.
My dd is 20 months old and was breastfed until she was 10 months old. At 2 months old she got eczema which has thankfully improved a lot in recent months, although her legs are still affected. At 12 months old she reacted to egg and was diagnosed with a moderately severe egg allergy at 14 months. Other than that she has been a very healthy baby until this winter. At the start of October she got a chest infection for which she got antibiotics and steroid tablets. Two weeks later she had another attack which resulted in her going on a nebulizer in the middle of the night and again the next morning. This happened twice more and then on 16th December she had a cold that went to her chest so we took her to the out of hours doctor service. Even though we explained her history doc said she might have a chest infection and gave her antibiotics. We took her home and I spent the evening worrying as I thought her breathing was bad but we kept telling ourselves 'she'll be fine - the doctor checked her out' Her breathing got worse and we ended up having to take her by ambulance to hospital where she had 4 days of regular oxygen, nebulizers, antibiotics, steroids etc.
Luckily she made a good recovery and she was released. Although I don't know if it is an official diagnosis the paediatrician we saw did mention asthma and she is now on a preventer inhaler and Ventolin. Her breathing has been much better but I dread the onset of another cold as that seems to be her trigger.
It sounds like there are a lot of you in the same both. I hope we can be of support to each other.

Sorry. Forgot to mention that the doctor we saw said steam was not good for this so not sure about using a humidifier.

I guess we all have to think a bit about the steam/moisture thing?

Seems like people are saying not if it is actually asthma, but yes if it isn't? Although how we're all supposed to know when they don't diagnose it young, I don't know...

Maybe there is some research we can look up somewhere - I might do some searching when/if I get a minute...

I'm no expert suiledonn but if you have eczema in your family/child already, I guess that might predispose your child to asthma?

My DC's have also had lots of mucus vomit, when they have had colds. In fact i think it is the only kind of vomitting they have had, not the stomach bug type of vomitting.

My DH was diagnosed with asthma when he was a child, but this was in the 70's when (i think) much less was known about dairy causing mucus/wheezy chests. He apparently used to eat loads of cream cakes as a child!

However now as a family we all avoid dairy as far as possible and i honestly think that has helped immensely. Now when we get colds or coughs whilst there is always the runny nose etc so far it seems to have rarely got wheezy/chesty.

I remember last year (2006) when DS was 7 months we were in A&E for 5 hours on christmas eve, he had to have a chest x ray, and ended up on anti biotics. This year he has had a couple of quite bad colds but i think the cutting out of dairy and use of humidifier at night has, I hope, stopped him getting wheezy.

However i have noted what people have said about humidity being bad for asthmatics in that it allows dust mites to thrive so will keep an eye on that. Thank you to whoever posted that as it was not something i had considered.

Just a quick mention with regard to dust mites, i came across a company a while ago which can install a system in your house which keeps the humidity at a constant low so dust mites cannot survive. Some health care trusts have paid for people to have this system installed in their houses as it's quite expensive. So if you do get a diagnosis of asthma triggered by dust mites then it might be worth looking into having this system installed. I think dust mites can also trigger eczema so a family with asthma and eczema would benefit greatly.

Sorry for length of post, will go now!

My ds (20mo) has lots of mucus vomit too. he only suffers from persistent coughs in the winter and, like many others here, the GP has said he is too young to be diagnosed with asthma.

Lucky i have a very nice GP who, when we went to see her just before christmas, gave me a prescription for antibiotics - just in case. they seem to have helped his cough until yesterday when a cold has now fully developed.

Do other people struggle to get their dcs to take an inhaler? My ds was fine with ventoline but was then prescripbed the brown one (forgotton the name) and hated it, now i really struggle to get him to use either one at all.

oh ds was nearly 9lbs too and is still a big boy.

just bumping for newbies etc.

DS is taking his inhalers really well at the moment after an intensive program of everyone who is around having a puff puff and getting a big round of applause/cheering etc before he has his (slow count and then big fuss).

Strangely, he takes the brown one better, but he usually has a big cough after the Ventolin, so that might put him off.

DS was 6lb5oz at 35 weeks - weighed over 10lbs by his due date.

Hi all. ds refusing his inhaler - says that'it makes his head go off' if I do get it on his face, he holds his breath. we were doung so well before. Have tried same as dibbler, so going back to the practice nurse, see if she can get him to do it again. (also - he was bf for 3 mths, but 4 weeks early, and weighed 5lb 60z at birth. I dont know how tht fits in with the large birthweight thing!)

Very interesting about the humidity thing.

we went back to gp this morning and she suggested giving the inhaler while he is asleep. He's only 20mo so has a face mask/tube thing so we can just put that on his face and puff away.

going to give it a go tonight and see how we get on - worth a try as he screams the house down if we try to go near him while he's awake.

gp also said that in her opinion humidity could exaserbate the condition and we should try leaving ds's window open a little bit.

We saw the practice nurse this morning - she also recommended giving the salbutamol whilst he is alseep via the mask. Terrible night last night, up and down up and down all night. Will try extra salbutamol if happens again - to see if it makes any difference.

I also asked about the humidity in the bedrooms - she said damp OK for croup, not advised for asthma. although we still have no diagnosis (ds 2.9)

we've been given salbutamol as a syrup, as well as having an inhaler. Apparently its not as effective but an alternative to screaming fits.

worked ok giving the brown one last night while he was asleep, but when i went to give him salbutamol he rolled onto his front .

exciting update
we've been to see Mr Everard at sheffield childrens today, a respiratory consultant. After witnessing first hand one of ds's huge coughing and mucus vomitty episodes, he says he has PBB. Persistent bacterial bronchitis. We get to stop all the asthma meds immediately but start a 6 week course of antibiotics today. My understanding is that PBB is a deepseated infection, which in ds's case has been going on 12 months (since 6weeks old). small viral infections aggrevate the condition, which we have seen. Also, the fact that even when he is well he rattles is another sign of PBB.I am actually quite relieved at this diagnosis as was sure he must have CF despite a negative test. he may well perform a brochoscopy at a later date, and a cough sputum sample has been sent for analysis.
Fingers crossed we now have a sensible reason for ds's continued ill health. I fianlly feel we are getting somewhere, despite how often he has been seen by different doctors recently.

that's brilliant news (well not that he has PBB but that you've got a proper diagnosis).

madhouse are you there?

I read your post and wondered if you really meant MRI?

Your dc sounds like he has pectus excavatum, its very common for those children who have had respiratory distress for so long and if you can sort out the reason it will often get better itself. It is a sign that there is something up though. I wondered why you didn't have a CT scan? An MRI is no good for identifying soft tissue problems in the lung so I wondered what they think is wrong?

Mt dd is 5 and has always had breathing issues. It took us 4 years and every test under the sun to get a diagnosis and I was so lucky to get a top pulmonologist.I always felt quite alone and now I would love to support others in that position as I know not having a diagnosis is the most stressful thing ever. And no-one else seems to 'get' it! Please let me know what they find?

how is everyone doing? ANOTHER chest infection I think - GP tomorrow. Roll on summer.

Bubble - oh no, not another. Just what you don't need.
DS still very rattly and sounding like he's on 40 Woodbines a day, but not too awful. He was giving his teddy a puff of salbutamol tonight which was sweet.

The problem was his ears. More antibiotics anyway. GP said his chest sounded good - so we were really pleased but he still has a cough- rattling upper respiritory this time, which is always preferable!

Much better with the inhaler since seeing the practice nurse, so fingers crossed.