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Asthma or Trachea/windpipe problems?(20 Posts)
Hi all, am desperately seeking help for my DS aged 9. He was diagnosed with asthma at our local hospital. He has struggled with dry croupy sounding cough episodes for years and years. These can be resolved with courses of high dose prednisolone tablets.
He follows the SMART regime on symbicort 100/6, which is his preventer and reliever. He is also on an INTAL inhaler (sodium cromoglicate), beconase nasal inhaler, cetirizine and is intermittently on Azithromycin. We have trialled singulair, but found it did not help.
More recently he is complaining of a tight tickly bubble-like feeling in his windpipe/ trachea. It makes him feel very uncomfortable and panicky. He also sometimes complains of chest pain, but this is a very different position and feeling to the windpipe tightness.
His peak flow is normally well above average for his age/height. It does however drop significantly when he is unwell. Following a course of prednisolone his peak flow resolves itself.
My DS does not respond to ventolin (salbutamol). He also reports that he does not get any relief from the symbicort.
We have been going through a very bad patch since easter. He completed his 4th batch of steroid tablets (since easter) on Saturday. His cough and trachea problems are now starting up again.
My gut feeling is that this is not asthma as:
He does not wheeze
His chest is ALWAYS clear.
He does not respond to reliever medication
My question is, could it be anything else? Following on from a previous mumsnet suggestion, I asked the paediatrician whether it could be GORD (gastro-oesophageal reflux disease). He said it couldnt be, as the cough comes and go's.
Does anyone have any ideas? Can there be a physical problem with his windpipe that makes him poorly? Does anyone know what tests he would need to have done to diagnose something?
Our next hospital appointment isnt till September, but our lovely doctor is re-referring us for a sooner appointment . We are debating whether to ask to be referred somewhere completely different to get a fresh viewpoint . We did ask to be referred to a respiratory consultant, but was told by the consultant that DS's case was suitable to be handled just by the standard paediatric team.
Any suggestions would be appreciated.
Has he had a chest x-ray? Has he had blood tests to diagnose exactly what he is supposed to be allergic to?
It sounds like you need to see a paediatric respiratory specialist. Is there a children's hospital you could be referred to, or at least a paediatrician with respiratory interests?
Sorry, didn't mean to fire questions at you. I just typed them as they came into my head...
I`d ask again about GORD - that can cause a chronic cough and chest pain. Reflux can vary in severity according to diet and stress, so symptoms can come and go.
I hope you get a correct diagnosis very soon, it must be distressing for both you and your DS.
Does he swallow a lot and have excess saliva, more noticeable when sleeping (or trying to)?
Reflux is also linked to a high sugar diet. Is it worth exploring that?
Thanks for the responses.
nohalfmeasures - No probs - just grateful for a response! He has had chest xrays done twice, and both were normal. He didn't have blood tests for allergies, but had skin prick tests done at the hospital. These came back as grass pollen and certain moulds as problem areas
We have private cover (albeit with an extremely large excess). We used the cover to get the initial tests done last year. I think I will try to get another refferal. Do you have any experience or have any recommendations about where would be best to go? We live in Suffolk?
FannyFifer - No he doesn't have any of the symptoms you mention.
Pixel - I will definitely ask my doctor about GORD again.
Sorry to drip feed, but meant to say we had a ENT appointment last year. The doctor basically peeped down in his mouth for no more than 20 seconds. He recommended DS be prescribed Beconase. Pretty sure that this should have been more thorough!
Dd is asthmatic and I could've written your post word-for-word. She is on Fostair rather than Symbicort but uses it in the same way your ds does.
She has recently had episodes of wheezing but it has taken her until her early 20s to present that way. She also presents with reduced breath sounds in her lungs now she is older. Her peak flow is also high when well. If you get an answer please let me know? I too struggled with her asthma diagnosis until she did a something or other challenge test which showed a classic asthmatic's reaction. She has more tests soon as she is on her 7th steroid course this year. There is talk of refering her to an immunologist as she does get regular infections.
Can you get a referral to Addenbrooke's? There are some very good consultants there, I can pm you names if it helps.
Jenny - I'm responding as I had an emergency app very recently with my doc with just this very thing you're describing re your son. I too have horrific coughing episodes which are only sorted with a high dose blast of prednisone....and am taking a course right now. (I've had this over a decade).
The chest could possibly be his chest muscles tightening because of the coughing - it bloody hurts!
You say that:
My gut feeling is that this is not asthma as:
He does not wheeze..... I don't.
*His chest is ALWAYS clear..... Mine is.
He does not respond to reliever medication..... I don't.
My peak flow behaves the same way as your son.
However Asthma is an allergic response to a trigger that sets these attacks into play.
My triggers are chemical pollutants - cigarette smoke(I don't). All aerosols. Plug in air fresheners (you're basically giving everyone nasty chemicals to breathe in). Car fumes. Perfume (I can't wear it). and now those electronic fake cigarettes which is apparently ok to 'smoke' indoors (They're not safe) I run a mile when I see/smell any of these, but sometimes they can't be avoided (dratted air fresheners that squirt the stuff at you every 2 mins in public loos are a massive pet hate of mine).
I'm not alone in suffering these triggers, many asthma sufferers do.
I also get the tight tickly feeling in my trachea when I've been exposed
to one of my triggers, plus I sneeze a lot.
My previous GP (at another practice) looked at me as though I was deluded when I would insist on one or more of these being the trigger for my latest episode of coughing/feeling grotty/fighting for breath, so I changed to another one.
The new practice is fab. They take it very seriously, and they LISTEN to me, after all, I know my body and its responses better than they do. So we work together, and in doing so it's given me much more confidence in dealing with it.
So, is it possible that any of these or others may be a trigger for your son?
Do you/ friends/relatives have these things around you, because it's not just dust and mites that cause this awful condition.
Sorry I didn't reply earlier but I've only just seen this thread.
I hope this helps you.
hellhasnofurylikeahungrywoman - Thanks for your response. I think I spoke to you on my last post!! Will definitely let you know if we get anywhere. I have just PM'ed you.
Thanks for your post EccentricElastic. I almost wish it isn't asthma because I know how difficult and unpredictable it can be. Also although steroid tablets do make my son better, they are increasingly having bad side effects on him. He is so angry, grumpy and feels dizzy when on them. Just wish there was something else to make him feel better.
Yes, the tablets do have strange effects - they make me hyper - hence 3 hours sleep last night!
But I hope you find an answer for your son, and i've heard that children often grow out of their childhood asthma, lets hope he is one of them (((little hug for the both of you))).
I think you need to look into vocal chord dysfunction. It's often diagnosed as asthma, but can I believe be helped more with speech therapy than asthma drugs. I don't know a lot about it, but there may be some answers in there for you.
My 'asthma' is just like you describe, I saw the specialist again yesterday who is baffled I think, he seems convinced I don't have asthma but I can't breathe without my tablets and i have had attacks before but salbutamol doesn't work for me now.
I've had X-rays and a ct scan (which showed no scarring or anything abnormal), I get loads of chest infections and am on about steroid course 6/7 this year which do work for a few days.
My ds had a rare birth defect - double aortic arch - where the aorta is malformed and squashes the windpipe. Apparently it is often misdiagnosed as asthma. Doesn't of course mean that is what your son has, asthma sounds a lot more likely, but if I were you I would push for a respiratory consultant, for your own peace of mind if nothing else. Bronchoscopy is the only way to exclude that and similar problems, I think.
My DS has scar tissue on/near his windpipe that was revealed during an endoscopy for severe breathing difficulties, (age 3.6). This scar tissue was as a result of tubing during a GA for an operation when he was born. Subsequent operations (for other things) report that his windpipe is very narrow. Just wonder if your DS had an operation that could have caused similar problems?
driftwoodsands - Good idea. Ds has had one unrelated operation. But his cough problems started way before then. Thanks for your idea though.
Thanks to everyone for their advice and ideas. I'll be discussing with my doctor later this week. (After doing lots of research on google first!!)
Hi My son is the exact same your child dose have asthma it's just diagnosed as an asthma variant as it is not the lungs that are affected my child is on singular and has three different types of inhalers also takes anti histamines and also can't have nasal sprays as this is also part of the airways and becomes swollen and inflamed asthma variant is the hardest form to treat and it's obvious that your doctor is not trained fully in the aspects of asthma as you are confused and still uncertain that this is your child's condition please seek out proper medical advice as if not managed properly you child can have a severe asthma attack and be hospitalised if you'd like to talk more with me I'll be more than happy to help as it can be confusing and scary... Xx
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