Asthma and so upset

[Sunshinefor4]

My just turned 4 DS had bronchitis as a baby and was hospitalised on breathing and feeding equipment and was kept in for a week. Since then every winter he gets terrible chest infections. Normally end up in a&e and with steroids. Last year my gp said although it’s very young to diagnose asthma she felt he was so gave him a blue inhaler and Montelukast to keep in the house for future. Had occasional flare up but nothing major until this morning. He woke up at 6am having a terrible attack. Really scary I gave him 4 puffs and the Montelukast. It seemed to help so at 8am called my dr. The earliest appt they had was with the prescribing nurse so I took that.

When we arrived we were 5min late (ds had been coughing so much and threw up so had to clean him up just as we were leaving the house) the nurse was very angry about this but then allowed us to see her once the reception staff explained my reason.

She was very off during the appointment. I explained the situation of why we were there. She listens to his chest and says she can hear nothing. Didn’t look in his mouth and was sharp with Ds. I told her every year it is the same I have seen him like this before and he is about to need an ambulance. I explained I was very very worried. Also explained I have 4 children so would like to prevent a hospital admission if possible not to mention how distressing Ds finds it. I was calm and respectful she was not. In a rude manner she said I can see nothing wrong with your son. If you don’t trust my judgement see someone else. So I said yes I want to see someone else.

Waited for the duty dr who looked in ds mouth and found enlarged tonsils and noted that the meds I had given were probably working and at this stage nothing else was needed.

Went back home and was very worried. Within 10min his breathing was so bad and this time the inhalers were not helping. Called back to the dr took hours for a call back and then was told to come back in. Dr took one look at son and said he is having an asthma attack and he needs steroids. He also informed me it was never written on DS notes that he is asthmatic. Hence why the nurse thought I was making it up and wouldn’t listen to me. It took a total of 11 hours 3 dr appointments and 5 phone calls to get the medicine he needed. By the time we got the medicine from the chemist DS was really not well. Gave the steroids as soon as I got home from chemist at 8pm

Now 1am DS has just had the scariest astmah attack so gave the 10puffs and 30min later it has calmed down. He has gone to sleep and is snoring loudly but I don’t see laboured breathing.

I am so tearful I don’t really know why I’m posting this. I have spent the day knowing that he was about to get really sick and that he needed steroids but no one would listen.

Is this just how it is? DS has never had any kind of clinic for asthma and after being given a stash of inhaler and pills a year ago we have just been left to get on with it. I realise now that he should have been given a brown inhaler too and regular check ups.

Even this morning with the nurse she gave me no advice of how to care for a child that had an asthma attack only hours before and she clearly didn’t believe me

Hopefully the steroids will be kicking in now. Poor little thing. It's such an uncomfortable condition.

Evening @Sunshinefor4 how is your son tonight?Sometimes nights are worse.So glad you got some proper advice,and that you will know to fight and shout the next time.Im a long term asthma sufferer and my youngest child was bad with it (though by about 5yo he was nearly out of it) and I know how tricky it is to manage.Well done you for being such a good mum and getting him seen to.

I'm glad your son was better today - I hope you all have a settled night.

Nebulisers can be used at home (as in when they are suggested by doctors) but it's definitely not a thing people should go out and buy just in case, for use with asthma drugs anyway. For most asthmatics, if they need a nebuliser, they need actual medical attention from a GP or in hospital. For those who do have a home nebuliser, it's usually under the guidance of specialists and when things are severe or brittle. Even then, it's used with caution because use of such drugs/equipment can mask how bad things are becoming. Aside from all that, if people do go out and buy a nebuliser, the doctor has to prescribe the drugs to go with it anyway.

Thanks again for all of your help. Didn’t get a chance to update because I caught his virus. It was day three before the steroids started working for him. Until that point he was having his inhaler every 4 hours. He has a follow dr appt up next week at the surgery. I am going to take all of the advice from you fantastic ladies and make sure I get the help he needs. It’s really frightening how in a child with asthma a chest virus can become really really bad. It’s also worrying that after the first attack the nurse dismissed us as nothing being wrong. It worries me that another parent might trust that advice and then not get the medicine their child needs. Even though I knew he was really sick I still felt a bit like “am I making a fuss here over nothing?” So glad I did. And once again so grateful for the advice in the middle of the night. I was so frightened and having people to talk to with sensible advice helped me so much. Thank you so much ladies xxx

Delighted to hear he's well now. Query a steroid inhaler. If he needs 10 puffs a day, that should be an indicator for a steroid inhaler. I'm not sure whether it's different for children with asthma, but basically, if I use my reliever more than 10 times a day, they reckon your treatment isn't adequate so review meds.
You're such a vigilant mother, you're lucky. Someone who did trust the nurse, might not have been as fortunate.
My only experience of asthmas is of my own. I can't imagine how scary it would be in my child.

OP you're doing the right thing by questioning.

Incidentally, my asthma has been well under control for many years. 3 days ago I spent the night in A&E as I couldn't breath after a 3 day cold. I couldn't work out why my inhalers weren't working. Turns out I have a lower lung infection - a week of steroids and anti-biotics for me. I felt like I was drowning.

I felt guilty going in just for 'asthma'. I haven't needed emergency treatment since I was a teenager. I kept apologising but A&E took me very seriously. It's not a condition to be blasé about. I think sometimes to many people, even medical people can think "oh it's just a wheeze"

Oh and to add, my ds has had a steroid inhaler from very very young. I don't think we could get through Winter without it.

In a similar position OP. Raised the possibility of asthma after ds was diagnosed with a dust mite allergy, then hayfever. He has a constant cough. Was given antihistamine and blue inhaler. Then he has a bad coughing fit and we ended up in a and e. Now on montelukast, anti histamine and steroid nasal spray from emergency doctor but his first asthma outpatients appointment has been cancelled twice at short notice. We don't have a firm asthma diagnosis or action plan. 'if in respiratory distress get medical attention' according to our GP. But the inhaler doesn't help much as the reaction seems to be in his throat. He's much better with the nasal spray but I have questions about how to deal with colds and what emergency meds to have.Tye whole process seems so slow. I might phone Asthma UK for advice.

Both of kids asthma are terrible with colds/being sick. They both have ended up staying at the hospital because their oxygen level was so low because their illness was triggering their asthma and we couldn’t get it under control. So they had to be on oxygen. Nowadays, I go on full mode when they get sick. I even take out a warm mist humidifier/vaporizer to help control it

That is an appalling way to have been treated by the practice nurse. Please when you are all well enough consider making a complaint to the Practice Manager.

I've been asthmatic all my life including some very serious attacks. For the last ten years at least I've found most health care professionals to be excellent on asthma (so please don't despair, they are mostly good on this) But I have met it really quite recently when my son had an attack as a baby and the out of hours dr said I had had a panic attack and my baby had copied my breathing (FFS)

In a very bad asthma attack if a child is struggling to breathe I would go to A&E. call an ambulance if lips go blue or you think you are out of your depth.

I'm really glad he's better than he was - hope you are too. It's hard enough trying to work out what to do, if it's "bad enough" or if you're managing, for yourself, but it must be really hard knowing for your child, especially when you're made to feel as you were.

Some doctors seem so bothered by giving, or not giving, names or a diagnosis - would help if they'd treat the symptoms regardless, maybe with a "query asthma" until they fully decide. But to not have it on his records at all is rubbish.

I think a lot of doctors don’t put it on the records when the child is very young as once on the records it stays there even if it turns out to be viral induced wheeze and they grow out of it. Having it on the notes can stop them getting particular jobs (such as the army)as an adult.
Please call 999 if he starts struggling again.

My ds has asthma. His nurse said that he should hardly use the blue inhaler. He has the brown one which we use once or twice a day . You need to see an asthma nurse (preferably not that one)

Yes that's true, Zivadiva.

I will definitely raise it with the practice manager and the partner gp who I have an appointment with. I think it’s such a hard thing to judge when you are watching your child struggle. Then the professionals don’t seem at all concerned so you question your own judgment. You think am I being dramatic? Your gut feeling tells you that you aren’t though. Then in the early hours of the morning you don’t know if an ambulance is needed or this is normal because no one has told you what to look out for. You question your own judgment because of earlier “professional” advice and you are on your own with three other small children all sleeping. Should you wake them all up at 2am and drag them all to hospital? If anyone else is in this position I think I’d now say call 999 wake them all up (if needed) and get to hospital. I spoke in greater detail with the asthma nurse and she said a few red flags in my description (to her not on this forum) meant I should have called an ambulance. I had reached the point where I was one more attack away from dialling 999 anyway but I wouldn’t want anyone in the future reading this and not acting quicker than I because of my experience.

I think a mums gut feeling is better than anything when it comes to your child. We should trust it. I know I will from now on.

I hope all the lovely ladies on here continue to have good results with their own or their child’s treatment with this. Hope the pp who has been in hospital herself gets much better quickly too.

I feel much more education and thanks to your experience feel like I know the kind of questions I should be asking thanks.

I couldn’t recommend asthma uk helpline more. The nurses on the phone were fantastic

Yes, phoned the helpline today. They were great.

I am asthmatic, was in and out of hospital as a child and chest infection/bronchitis/pneumonia/collapsed lung with every cold. DS is following in my footsteps, very similar to your son and we also couldn’t get a formal asthma diagnosis because of his age. He was having blue inhaler from 18 months old and between ages 2 and 3 he had chest infections almost constantly, literally about 3-4 days between one ending and a new one starting. Paeds knew us on sight. Eventually a helpful GP put him on brown inhaler twice a day, we kept this up for 8 months then weaned him off it. Since starting the brown inhaler last October he hasn’t had a single chest infection or any kind of breathing problem. It’s miraculous.
Push hard for the brown inhaler to be considered.
We were told by Paeds that 10 puffs of salbutamol (which is equal to the dose from a nebuliser) could be given every 2 hours when he was bad (really struggling, heavy wheeze, recessions on chest and neck) If he couldn’t last 2 hours between doses he needed to be seen by Paeds.
Also, if you feel he has a chest infection, he probably has. You know him best, you know what is normal for him. A GP once sent me away twice in one day, telling me my son’s chest was clear but I knew he had a chest infection. Middle of that night we were in A&E and Paeds found the crepitations low in his back. Dr said it was unlikely to have been found by a GP as they often aren’t thorough enough. Diagnosis was pneumonia that time.
You need to complain about the nurse, her attitude should have been ‘if mum is worried, I am worried’ I really hope you can get the help you need for your son. Push for it. And stay strong, I know it’s frightening. PM me anytime if you’d like to chat

Poor boy (and poor you).

Have they prescribed a spacer (to help him get the medicine into his lungs more effectively) and a peak flow monitor - if used every day it can help you spot triggers or a deterioration. I think you can get an app to record peak flow measurements.

Also, do you have enough inhalers (and a spare spacer) so one can be left at school?

You're doing such a great job OP. Your little lad will be fine with a Mummy like you. I hope they prescribe a steroid inhaler to prevent anything similar in future.

As I said I have pretty severe asthma. I'm on Seretide 500 diskus. I'm not aware of any stronger meds. In January I developed pneumonia and ACARS and was in ICU for two weeks. My family was called in as all my other organs were starting to fail too. Asthma is something very bloody dangerous and costs lives. You are so vigilant. You'd be surprised how many people brush things off as a cough (my parents), while I felt I was drowning trying to breathe. It's impossible to explain asthma to someone who doesn't have it. It's not like having a bad cough. It's like you're drowning slowly. It is a horrible feeling when you're having an attack.

Good news? Children with asthma usually grow out of it!

I would be trying to keep pets separate from him though in the very short term.

Oh OP, that's so stressful, I'm so sorry you're going through this. And the nurse had no right to talk to you like that.

DD (4yo) has been given a blue inhaler several times for breathing problems after what we thought were chest infections, but never diagnosed with asthma. Turns out she is quite badly allergic to cats. I have self-diagnosed her with allergy-triggered asthma and we and my parents have sadly had to get rid of our kitties.

Definitely get him allergy tested. It could make things much easier. Hope he gets a good night's sleep.