paediatricians advice on DS's asthma. what do you think?

[shelsco]

DS2 been seeing paediatrican about slow growth (possibly due to inhalers).I've been told that there is no link which is fine but what I found a bit unsettling wad that was also told that as Ds hasn't had an asthma attack for over 2 years to just stop using his beclamathasone to see what happens.I'm terrified. What does everyone think?

Sorry bit more history here.

Before he was prescribed beclamethasone he was going for about 6 months at a time with no symptoms whatsoever but then when he got a cold he would start coughing and within about 12 hours would be struggling for breath. He was admitted to hospital a few times and we were told to give 10 puffs of salbutamol to control attacks but these didn't work and each time he had to be admitted. Once he actually collapsed at the doctors and was rushed in. It was only when we told to give beclamethasone daily and to up dose and give salbutamol as well at first sign of cold that we got it all under control. He never wheezed and chest always sounded clear except in middle of attack. Oxygen sats were always low though. I know he is well now and that's great but I don't want to go back to the situation we were in before when we panicked at the first sign of a cold! Advice from anyone with similar symptoms would be appreciated. Paediatrician said doubted it was asthma as he doesn't wheeze but that wasn't what doctors were saying when he was lying on floor in the surgery.

Sorry if I sound flippant but just fed up of being treated like neurotic mother when he's well and clueless mother when he's not. Can't get it through to anybody how sudden the attacks are. They are pretty much without warning (apart from the dry cough) or obvious symptoms like wheezing!

He's 8 now. Had problems with pneumonia, bronchiolitis etc when under 2 and then repeated chest infections up until about age 5. Hasn't had an attack since he was 6 but like i say only had attacks about twice a year anyway. P{roblem was when he had them they were so bad.

There is a consensus that a sizeable proportion of children who are asthmatic will not be asthmatic through adulthood.

The hard part seems to be predicting who will be.

Assuming this is asthma, lack of wheezing does raise a question mark abuut that, between 40-75% of children will "grow out" of their asthma with a relapse rate of 12-35% (taken from here).

A load of risk factors for asthma lasting into adulthood are given, feel free to look for yourself, but the details you give would put your DD towards the "more likely to grow out of asthma" end of the spectrum.

I think trying to go without the "preventer" is sensible, you can always start it again if he gets a cold/cough and it'll be better for everyone if he can, like most adults, be safe just by carrying the "reliever" around.

if you don't try, does that mean he will be on the meds still? would the doctor maybe compromise and agree to another 6 months or year on the meds before trying to stop? what are the side effects and why do they want him to stop taking the meds? tbh I'd go for it and see what happens - if you don't try, you'll never know. I know it's scary though

He will stay on the meds if i don't try. I'm just scared of being back in position we were in before when every time he got a cough we were on edge, wondering whether it would just go or whether a couple of hours later he would end up collapsing on floor and being rushed to hospital.
I think the doctor is maybe wondering if he has grown out of it or if it was even asthma in the first place. Though when he collapsed we were told it definitely was and he did respond to the treatment given.
Just worry about what could happen if he collapsed again (bear in mind salbutamol doesn't control these attacks for more than half an hour at a time and when he collapsed he literally couldn't breathe and was losing consciousness). AArgh! My head's telling me one thing but my heart's terrified to try!

If he hasn't had an asthma attack for 2 years, then it is a good idea to give up the brown inhaler.

You can always use it again if he gets a cold.

It's not a good idea to give medication that they don't need, and you won't know if he needs it or not unless you try without.

I know. It's just they thought he didn't need it before and that's why he ended up in hospital! I have been under the impression up until now that the reason he wasn't having attacks was because the brown preventative inhalers were controlling his condition. I suppose i will just have to bite the bullet and see what happens!

as earlier poster suggested, might be worthwhile to stop with the brown inhaler but to start using it again if he gets a cold or a lot colds are going round at school or in the family. I am asthmatic and this is how I manage to use my asthma quite well most of the time.

Not sure if the advice has changed, but when I was a teen I was told to cut back on brown inhaler rather than just stop.

I used it 3x a day, then 2x, then 1x, then every other day, then stopped. I think the plan was that if I got sick I would start to take it again, but I haven't had that prescription renewed in about 15 years. I now just take the blue one when I am sick. Works well as an adult because I can feel when my chest is getting tight. Is your DC mature enough to tell you that?

DS1 (6) has had same symptoms with his asthma. Comes on when he gets a cold, no wheezing, just gets more and more lethargic, grunts a little when he breathes out. None of the doctors we have seen since he was 3 have questioned whether or not it was asthma. Have ended up in A&E several times. He's been on brown and green inhalers every day since he was 3 and we add ventolin when he has a cold.

Have been told by several doctors that he is likely to grow out of it. Has definitely improved since he started school but also we are better at managing it.

What might be helpful to you is that after this winter - as long as we have a good one like last year ie no trips to A&E - I will be trying to cut down his medicines. I will be watching him like a hawk though when his nose starts to run!

Sorry I've nor replied folks. been away on holiday for a week but thanks for your posts. I appreciate the advice.

Good to hear about your DS Eyeofthestorm. He's the first person I've heard of with same symptoms as my DS so that makes me feel a bit more sane. From what you've said, it might be that my consultant thinks my DS has now grown out of it.
Pixie i did actually ask if I should wean him off the bec gradually and was told that at 200mcg twice daily it didn't really matter but I think he must have thought better of it as I've just had a copy of the letter he sent to my GP and he claims to have told me to cut it down gradually!

BTW Gracie don't know if DS would recognise an attack now as he was a lot younger when he had his last one. I suppose maybe that's another reason to cut back a bit on the med, to let him start to gauge the symptoms himself. It is starting to make a bit more sense. Just need to make sure that we're not overly complacent with his synptoms coming on so suddenly in the past!

I'm not sure about this. None of my dc have asthma, but I do, Mine is completely controlled by my inhaler. I am never wheezy, and only need the ventolin very occasionally. But on the very rare occasions I have let my presecription run out I have been in serious trouble very quickly when it starts.
My question would be what experience does the Consultant who told you to do this actually have, is asthma one of his areas of expertise, or is he a general community paediatrician, in which case is there someone else your gp could refer you to for a second opinion?
Before you alter the status quo, in which the asthma is well controlled, and given that he/she says the inhalers have not affected ds growth, I would not do anything hasty, but try and make sure you have the best advice, and make sure you have detailed advice on what to do when ds has a cold, if the symptoms reappear, and how frequently it should be monitored.

Sparkle, your symptoms sound very like Ds2's. I have made an appointment with my GP for next week to get some advice. I'm not sure if consultant has asthma as area of expertise or not but it would be worth asking. I think I will ask about a second opinion if GP can't answer my questions. How long does it take you for symptoms to come about once you have stopped your inhaler in the past? DS2 seems to develop a cough which gets worse over the course of maybe 10 to 12 hours. (That was when he was using inhalers but they wern't controlling it). Hope you don't mind me asking but the more i hear about people with similar symptoms, the more informed I feel, even though i know everyone's different!

Pixie you must be stressed to bits about your dd. Do they know what has caused her ashma to change or does it just sometimes happen? I feel like its the fear of the unknown which makes it so hard. you can't really predict what will happen and when.Once DS2 is off the becotide (if it happens) I would definitely be on the alert for symptoms. i am anyway every time DS2 gets a cough, as that is what always triggered it.

My heart goes out to you Pixie. I thought it was terrifying enough when DS2 collapsed. It has stayed with me ever since. What you've said does remind me of why I'm right to think twice before making any changes to his med. I get the feeling the consultant i saw hasn't really come across severe asthma. I couldn't get across to him how suddenly Ds can change. After hearing about your DD2's experience, it makes me all the more determined to get some advice from someone who knows about asthma.

When did you put him back onto it? when he started to show symptoms or when it got to the time of year when he would normally worsen?
I must admit, i don't really feel confident doing this on my own. Feel like I need someone to monitor what's going on until we can see if he's managing without inhalers. I want to ask for everything to be documented I think by the GP so there's a record of what exactly has been tried and how it has worked. Ds2 has been in and out of hospital so many times with asthma, allergies, chest problems that I find it hard to remember when exactly certain things have happened. At least if its formally written down and monitored, if anything happens that can be noted too, then responded to. If he has grown out of his asthma, then that would be fantastic obviously but will take at least a year before we know if that's the case as his attacks were always very infrequent but severe.

Severe in the sense that he needed hospitalisation not in the sense that it couldn't be controlled I mean.