Desperate mama

[Nhughesmama]

My almost 5 year old son started with coughing symptoms at night around the age of 2, he sleeps soundly until about 12AM-2AM and then wakes up with forceful persistent coughs, mostly when a cold is circulating in the house. He was on so much prednisone and eventually we started a preventative inhaler, nasal spray, an antihistamine and vitamins which did little to nothing, we did these daily without fail for over a year. He did not have a month that year when he didn't flare and start these cold coughing attacks. Albuterol does nothing, it even feels like it makes it worse. He peaked at age 3 and we then tried Montelukast which worked but made him crazy, we had to stop. We are nearing age 5 and have figured out that on nights where he wakes up hacking, if we give him Montelukast (we tried it again, even a half dose), it knocks it down within 2 hours. After 3 days, he is losing his mind and his behavior is awful, he doesn't even talk like my son. What are we to do? It is killing us as no one ever sleeps and I have PTSD to the coughing nose. The longest bought of health was Aug through Oct (almost 2 months exactly), other than that it has been monthly. We have resorted to starting and stopping Montelukast when we feel a cold coming on. When, if at all, do kids grow out of this. I'm losing my ever loving mind.

[twinkly29]

If no asthma medication is helping at all, would ask the doctor if it could be something else other than asthma. It does sound asthma-like but for no inhalers or steroids to work at all suggests it might not be.

Reflux (acid reflux/silent reflux/GERD) can cause coughing which can be worse at night because of lying down. Post nasal drip is another thing that might cause coughing.

If they're sure it's asthma maybe ask about a different preventer inhaler as they contain different steroids and maybe he's suited to a different one. Just bear in mind a new inhaler will take about 8 weeks to become effective so would need testing for a couple of months.

[madamestephens]

I don't have any answers I am afraid but can sympathize. My son was similar, but for us the Montrlukast has been tolerated, so that has worked for us. As it seems to "work" from the point of the cough (but have horrible side effects) for your son, maybe go back to doctor/ asthma nurse/ phone the Asthma UK nurse advice line to see if there are any alternatives to Montelukast that csn be tried. I hope you get an answer. I agree the months and months of coughing in the night are traumatic. I still get very stressed if I hear my son cough at all, as it brings it all back. Take care.

[ChrissieMons]

You need to see a consultant urgently. There may be other factors in the house which affect him - no idea what but there might be. He needs lots of investigations to get an accurate diagnosis. Insist on this with your GP.

[Poobah]

It sounds odd, but the fact that Montelukast worked to control the worse of the symptoms should help your asthma doctor understand the nature of your son's asthma. "Patients in whom leukotriene receptor antagonists (LTRAs) may be particularly effective are those with aspirin sensitivity, a large exercise induced component to the symptoms, highly atopic eczema, and rhinitis." (NHS Devon CCG).

Rhinitis can produce a post nasal drip and this can really irritate the lungs when we lie down. But you say that nasal sprays and antihistamines haven't had a positive impact. Rhinitis may still be part of the problem despite the usual treatments not working. Have you tried a probiotic nasal spray?

You mention viral colds and I'm wondering how you treat these in terms of over the counter meds? Asthmatics can be sensitive to some ingredients and, apart from the virus exacerbating the asthma, these can also trigger asthma and Rhinitis symptoms.

It may be worth avoiding over the counter meds containing aspirin, nurofen and ibuprofen. Colourings and preservatives in foods can be a trigger, as well as certain foods. Keeping a diary of symptoms, foods, hygiene goods and other household activity may pin point a potential trigger. Even consider your location in terms of pollution from traffic, farming activities or manufacturing.

Reducing exposure to triggers as well as finding the right medication can deliver more control over the symptoms. I would talk to the prescribing doctor about your son's experience with Montelukast, both the success in controlling symptoms and the unacceptable side effects, in order to explore alternative treatments.

[RobbieFowler]

Hi. Sorry to hear this, it sounds awful. I ended up here by accident but was prompted by your story. I'm a physician and work in respiratory research, albeit mainly in adults. My own son had something similar. I'm not sure why your son was on pred for any length of time - it would typically be used during exacerbations IF one gets bad enough and then only for a few days. Re albuterol it's the go-to in paeds asthma in the pre-asthma diagnosis phase (you might have heard the term viral bronchiolitis), but it's not a good idea to over-rely on albuterol as the primary treatment as it can be pro-inflammatory. You don't say what preventative inhaler he tried. Was it a corticosteroid only - such as Qvar, Flovent, Asmanex? If so you should consider a COMBINATION preventative such as Symbicort or Advair which has an added ingredient in. If that still doesn't work you could try Symbicort both as a preventative AND as a reliever. This is off-label (it's not approved for that use in kids) - BUT there is a great deal of published evidence for this approach in adults outside the US showing it reduces exacerbation risk and it is approved for adults in this manner around the world. There is also a published study of Symbicort used in this manner in kids (Bisgaard et al 2006) which showed it reduced exacerbation risk substantially. We eventually ended up there with our own son, and it has worked very well for him. There is another type of drug thereafter that your physician might wish to try, tiotropium (Spiriva). Evidence for its benefit in kids in quite modest, but it may be worth a shot if the above isn't working as treatment responses can vary between patients. Finally, it's ESSENTIAL to have a proper assessment of your son's inhalation technique by someone who is an expert, and to get this periodically reviewed. Poor inhalation technique is very, very common and is definitively linked to poor asthma control. If you are not already seeing someone at tertiary centre it sounds like you should be. Incidentally, my son had a terrible couple of years (and we didn't sleep much either) but we eventually got on top of it and his asthma is now very well controlled. Best of luck.