Parents of asthmatic children, please help!

[angel1976]

Hi all,

I have a lovely, beautiful 9 months old DS2 who is a really chilled out, calm and smiley baby. However, he seems to have a chronic cough / chest issues that's really causing sleepless nights all round! We finally have a referral to see a top paediatrican specialising in respirology but don't know when the appointment will come through. Just wanted some ideas from experienced parents what the possible cause is. His symptoms:

• Streaming nose with lots of clear mucus from birth. Don't think that has ever stopped once.

• Suffered from possible reflux in first six months, a lot of his vomit would consist of the normal milk / curdled milk but with a huge amount of clear mucus too.

• Chronic cough - started from birth but got really bad from about 4 months old. Mostly at night. He seems to get these 'episodes' of non-stop coughing (to the point of gagging / vomiting but not all the time) for anything from 30 minutes to 1.5 hours in middle of the night. He would 'sleep through' most of these episodes but is starting to get distressed by them. I would say he gets these episodes 2-3 times a night.

• Some wheeziness but not a lot. His chest does sound like a 'rattle' most days though.

• Poor weight gain, he is a tiny 7kgs. The last time he got weighed, he put on 2oz in 7 weeks.

After endless research, it's all pointing towards asthma though I know he is too young to be diagnosed. We have no pets. He is formula fed but down to only 3 feeds a day.

My DS1 was also slightly prone to have coughing episodes but nowhere near as bad as DS2! I keep hearing he will grow out of it but I am literally driven demented by having disturbed sleep most nights. When he doesn't have these coughs, he literally sleeps like a log all night and I can't imagine how bad these disturbed night sleeps are for him... Developmentally, he has no issues and is even more advanced than his brother... Also, I read the other asthma thread and it seems that children with asthma should be 'wheezy' and also prone to chest infections, which DS2 has never had. Can you have asthma without all the 'wheeze' and chest infections? I just don't know what to think anymore... He is having a nap now but I can hear him coughing away. Thanks for any advice or help you can all give.

Hello. He sounds like my DS. If you search under my name you will find lots of posts about similar symptoms.

In short, DS is now 2. Had lots of chest problems from about 9 months onwards. Was allergic to CMP and egg (now outgrown). Has reflux. Latest diagnosis from consultant is that he was refluxing into his lungs causing repeat infections. He is treated for asthma although no diagnosis as yet. However since he's been treated for reflux his chest symptoms are very much better.

Would definitely recommend getting a referral to check for CMP. Our consultant checked CF but we had had a negative heal prick and its unusual to get a false negative I believe. Night cough is a potential indicator of asthma and its possible to have asthma without wheeze - DS only wheezes very occasionally.

We got DS a humidifier which helps a lot when he is chesty at night. He also had a atrovent inhaler initially - I believe atrovent is generally prescribed before ventolin for under 1s or possibly under 2s - sorry not sure which.

Sorry, not a very focused response. DS isn't well and I'm a bit stressed tonight but your situation seems so similar to us a year or so ago I thought I should respond. I hope you find some answers.

Argh! I hate going to my GP. Have already been back to them countless times and it's only the last time that I INSISTED on being referred that they did. The reason why I've not pushed to get help earlier is that DS2 has never had a chest infection etc. It's just the bloody cough driving us all nuts.

Strawberry Sorry to hear your DS is not well. I hope he is better soon. It's so hard when they are little isn't it? I keep hoping DS2 will outgrow it. Funnily enough, when I did a search, I found a post I posted about 18 months ago about DS1 who had a bout of bad coughing for a few months (but he was never as bad as DS2!). Thanks for taking the time to respond. Glad (but not glad iykwim) to hear there are others in similar situations...

Yes, I would cover your bases and ask for a second referral (given how blooming long it takes!). Sorry again for sounding so forceful, it's just one of my pet hates that people who might need real medical help with this get sidetracked into some alternative medicine instead (as well as, is fine, but needs to be on conjunction with proper medical opinion).

A humidifier is a very good idea (can't remember if hot or cold is best.... Hopefully someone here will have an idea, or look on the asthma websites).

Thanks luke. Will try to get an appointment for Tuesday. Monday I have both my boys and I'm not taking them in to get more bugs considering they are both recovering from a cough/cold at the moment!

We ended up with simultaneous referrals for allergy and respiratory consultants. At the time, I was more concerned about allergy but it turns out the respiratory stuff was the real issue. Its rubbish that doctors make us feel so guilty for asking questions, I also get very nervous going and always think I am making a fuss, even with his history.

do you have him on an incline in bed- raise his head end a little. ive also found that my son coughs less if he sleeps on his stomach.

Hi all,

I spoke to a mummy friend of mine from toddlers' group today and she has two sons with cmp allergies. She has given me a carton of Aptamil Pepti, which she gets on prescription and she says it's the nicest tasting one of the lot. She has also given me lots of tips on how to cut out diary (and a whole lot of food stuff too like soy yoghurt etc). So tonight, DS2 had his first bottle of Pepti and he downed all 6ozs of it. I am going to cut out diary from now onwards for him. And plan to get an appointment first thing tomorrow to see the GP to get a referral to a allergy specialist to get him tested.

If this works, I will be so grateful to you all as I can't for the life of it work out why it's taken me 9 months to work it out. I think I was so 'asthma-focussed' (as everyone including my MIL told me that was what it was! Though I wasn't convinced 100% as he had no chest infections and was barely wheezy) that I didn't even think about cmp allergy and now it seems so obvious from his symptoms?!!!! Fingers crossed this works. I feel so bad now for making him suffer for so long. Thank you all.

Ax

Don't feel bad, if it is an allergy, if its not an immediate reaction then how are you to know? We only know about dd1's allergies as she has severe hives etc (or anaphylaxy), so pretty in your face obvious! I read somewhere that reflux is being increasingly linked to a cows milk intolerance/allergy, so I bet there's a lot of undiagnosed kids out there. Good news - again if if is the dairy - is that if the reaction isn't that severe there's a very good chance he'll grow out if it in a couple of years.

The allergy board on here is a very helpful source of tips for dairy alternatives as well.

My DD had a ventolin inhaler from around 6 mnths to a year, then grew out of being chesty and didnt need it any more. IMO it's better to use the inhaler as soon as DS has symptoms as this will prevent them worsening.

However,at a routine hearing test it also emerged that the general blocking of her tubes had led to glue ear, although she had never had apparent infections. When she had grommits fitted at 21 months the surgeon suggested that this is likely to have been linked to her chest problems, so may be worth your while getting a hearing test also. (DD passed newborn screening and was only referred to have a test at 8 months becuase her Dad has hearing loss). This can be done by your HV, just need to ring them and ask for a referral. Sorry to give you more to worry about, but I guess better to know he's sorted than have further problems.

Thanks luke I feel so stupid. I am sure the effects are not immediate but DS2 has not coughed once tonight so far. I really hope cmp allergy is the answer and not asthma! I feel then at least I am starting to make a difference to the poor little guy's health!

Thanks balls I will do. He does pull at his ear and I do sometimes wonder about ear infection but to be fair, he is already babbling away very clearly and definitely hears his brother! LOL. I appreciate all your advice.

Fingers crossed for a good night... Must be so awful listening to him coughing so much (an knackering for you all!). And stop beating yourself up - you're investigating all the possible causes, what more can you do? Its just a crying shame that, more often than not, you have to fight to get the appropriate medical support at the moment.

So DS2 has been on the new formula since Monday evening and I've cut out all diary in his diet and I am cautiously optimistic that we might be on the path to him feeling much better! He seems so much less snuffly today and I can actually go more than 5 minutes without wiping his nose! Last night, he slept from 7pm-6am with a small odd cough once or twice. I slept too! I couldn't quite believe it. His chest sounds so clear too. He doesn't sound like a rattle anymore... I have an appointment with the GP on Friday to discuss this further and see if I can get a prescription for the Aptamil Pepti without allergy testing for now as we are on holiday next week and I cannot bear to go back to how things were.

I am sitting here hoping this is indeed the start of the little man feeling much, much better. At the same time, I want to hit my head on the wall REPEATEDLY for taking so long to figure this out. That poor boy has been suffering for 9 months. I feel like such a bad mother. I mean I had gone through every single scenario in my mind - including CF - and all the time, it was just CMP allergy? Not to say that is not serious but after all my worrying, I can't believe I can make such a difference by just cutting diary out? Please keep all your fingers and toes crossed that we have finally figured this one out... Thanks for all your help. I am eternally grateful if CMP allergy is what the issue is.

P.S. Before this, I didn't know CMP allergy even existed! In the sense that I thought it was the same as lactose intolerance and I knew DS2 was not lactose intolerant (he didn't have tummyaches or diarrhea or very smelly poos), which is why I never thought he could be allergic to CMP... Stupid, stupid me...

Don't feel bad about not getting to this answer earlier - you have found the answer after only 9 months when you could have easily been administering steroids for a long time supressing the reaction rather than treating the cause - and the experts did not spot it!!

Good luck with the GP - you have proof that he is better without dairy and well done!! you've helped your DS to sleep!!

Thanks Misty. I'm cautiously optimistic as I am not sure that the milk allergy is the only cause... He could be allergic to dust etc. But if he sleeps better and breathes easier for now till he gets the proper testing, that's better than nothing right? I just hope this is it, and it's not just me hoping that we finally have the solution after months of worry and anxiety...

Oh dear, I can hear him coughing... Hope it's not going to be a bad night...

I do hope it isn't a bad night, but before you get too despondant that you haven't found the answer after all, it can take a good few weeks to clear all allergens out of the system. Plus, there might still be some in ingredients for something - believe me, dairy is in the wierdest stuff (eg some orange ice lollies, salt and vinegar crisps!).

Also, as I mentioned before, allergies and asthma are all on the same spectrum, so whilst eliminating cmp (or whatever you may find he is allergic to) might help with some of the symptoms, the rest might be down to asthma iyswim (especially if he is coming down with cold etc). Don't lose heart, you will find the answer soon...

Thanks all. It wasn't too bad in the end. He had a little coughing fit early in the night but slept through till 6am with only the odd cough here and there. That's a huge improvement from the chronic coughing episodes he used to have... I am just hoping it continues. I do realise it takes at least a week to know if the difference is down to cutting out diary. Like *luke' said, diary is in everything! I am still feeding him meals I made a while ago and frozen and I'm not 100% sure they don't have milk/cheese in it though I have obviously not given him cheese sauce etc! The funny thing is we've always suspected my DH has a milk allergy of sorts as he loves eating cheese (blocks and cheddar!) and he always seems to get skin breakouts... Will keep you all updated.

Also allergies don't always come in ones, you might find an improvement when you remove one, worsening to find what the next layer to remove is which is where the testing will help.

I have an appointment with the GP on Friday. Not sure they can do allergy testing in the surgery, I doubt it but will definitely push for DS2 to get allergy testing done asap. If not, we are going to visit my parents on holiday in a country where private healthcare is 'norm' and fairly affordable so we might go down the route. It's so deja vu as I knew something was wrong with DS2's neck when he was born (all the HVs and doctors here kept saying it was something he will outgrow) and it wasn't till I got back to my home country that we saw a private paediatrician that he was diagnosed with torticollis... The NHS is spectacularly good when it wants to be but can also get it so spectacularly wrong...

Sorry, I meant DS1's neck... Not DS2's, that little guy has enough problems on his plate already!

How did it go at the GP? and how's his cough going?