To sometimes just leave her to cough

[PinotMwah]

My DD has a chronic cough that crops up about 2-3 times a year. Was thought to be asthma but now not for various reasons. Various investigations are ongoing to identify its cause, none so far very productive. Doctors are on the case but nothing really works.

It is absolutely horrific. I have grown to hate the cough with an irrational passion, I feel as if it is something which was sent from hell to destroy me. I know this sounds pretty bonkers but that's how I experience it.

I have tried every imaginable cough remedy/asthma treatment from the mildest cough medicine up to strong steroids. Nothing works. It goes on for literally hours at night -- average stint is about 4-5 hours, coughing about once every minute, on some occasions it has literally been all night. In bad situations she can end up in A&E. I can't ever get more than about 2 hours sleep a night. It massively impacts my life: I can't get any sleep while its going on so anything done at work during the day. This can go on for 2-3 weeks at a time and quite often she needs steroids to kick it into touch. I'm a lone parent so there's no-one else who can take over while I get some sleep.

Obviously it goes without saying it is awful for DD. I try really hard to support her where possible with it. She wants me to stay with her, let her sleep on my stomach, hold her hand through it. Which I do. When she is distressed, I will do anything to make her feel better and will stay with her until she is calmer.

But sometimes I just can't face another second of it and I have to just get out of the room. I can hear her coughing next door now, she's asleep been coughing for well over an hour, I'm probably looking at a minimum of another two hours before I'm going to get any sleep, if we don't end up in A&E. I had about two hours sleep last night and have had about half an hour tonight. I will keep an ear out and will check. But I just want to walk off a fucking cliff now and not have to be in that room with that cough another second. Am I being a bitch for not staying in there with her? I just can't do it.

Ear plugs. Pink and yellow from Amazon.

That sounds cruel, but they take the edge off. You can be with her, still hear a bit, but it's bearable.

is it allergic cough? can you ask if you could give some antihistamine to her?

AylaRose it was initially treated as suspected asthma and she was on clenil (inhaled corticosteroid) as a protective measure, and has salbutamol for acute episodes.

Neither really works, to be honest.

In the run up to her op I was told to take her off the clenil so she now is not on anything other than the salbutamol.

The specialist thinks its probably not asthma because she has ruled negative for all allergies and apparently most childhood asthmas are linked to allergies. Its also not triggered by exercise, purely by viral episodes. Apparently it doesn't fit the profile of asthma.

But its also not CF, not reflux, not immune-related. They seem to have run out of things to test for.

bluebell no its not allergic.

Frisky generally speaking I don't actually need to be in the room -- I go in periodically to check her breathing is OK and also if she is very distressed I will stay with her.

It's more that its impossible to sleep even outside the room a) because I can still hear the cough and b) because of the anxiety and guilt

Could you sleep with her (or even in your own room) but wear ear plugs?
Or headphones to listen to relaxing music? That way she could wake you if she needed to, but you'd get a chance to sleep.

Snowflake maybe ear plugs is the way forward. I don't really like them - they make me feel a bit claustrophobic and cut-off -- but it must be worth a go.

Does she cough just as much during the day? Who looks after her when you're at work when she has the cough? The reason I ask is that you need sleep, and I'm wondering if you can get that during the day.

While the investigations are taking place (and for you for what you have been through) you somehow have to survive it.

I'm assuming you've tried all the regular temporary solutions such as lemon and honey, lozenges, humidifiers, muscle relaxants etc.

So you need to reduce the impact of the coughing. So perhaps ear plugs as have been suggested, or some back ground noise such as soothing music, or even just white noise. There are a number of white noise creators on the market at different prices. If they reduce the emotional impact of the coughing on you they will be worth every penny. They might even help soothe your DD.

Has she been tested for allergies? I had asthma and coughing for 23 years until I gave up dairy (for acne trouble not even for asthma) and it all went away. Have a google for coughing and dairy, it may not be the reason but definitely worth a read, it's certainly changed my life.

If she doesn’t cough during the day then that is hugely important

As in to determine what’s causing it

Mine has had this cough. If you know that steroids work get to the doctor sooner rather than later and get it treated asap.My doctor came to understand that I knew my kid best. An occasional short course of redipred will do less harm that the lack of sleep and muscle strain and mental torture.

does she cough in the day? if so, what things trigger it?

for now i think earplugs or headphones. you need to be there, and she needs you to be, but you are no use to her at the end of your tether. try something different!
you need to get to the bottom of cause. i'm sure you already do, but keep a diary of day/time/situation/weather etc.

Tbh it sounds atypical croup

Cold air can really help whatever the cause if it’s inflamation related - try opening windows and wrapping her up extra warm in bed

However if it’s asthma related then this cold air would make it worse. If asthma related then salbutamol would help - does giving the 10 puffs help at all.

If it’s reslly 2-3 times a year? That isn’t that often?

You do have my symthapises though - it’s horrid when your kid is sick - you can’t get away or get any sleep.

Tell ur dd you just have to go to loo or switch washing machine if you need break. And wear ear plugs!!!!

Following on from what OverTheHedge said, you can get white noise apps for free, also ones that play different relaxing sounds - I used a free one called Ambience. It has white noise, relaxing music and binaural beats (supposed to help you get deep relaxation), and also lets you custom your own sounds - you can get very specific - e.g. rain on window, campfire & turtle doves!

Coughing is my nemesis. To me it feels like fingernails down a blackboard. It’s torturous. Doesn’t stop me hating myself for my reaction though, so I totally get where you’re coming from.

Ear plugs to dampen the noise a bit? My sympathies. Sleep deprivation is awful

I know you say it isn't OP but it's got to be an allergy.
Dairy foods can cause mucous. Is there mucous or is it a dry cough.
If it's a dry cough it could be a nervous thing?
I feel your pain.
Keep at the medics.

Apologies as I Haven't RTFT but have you tried montelukast? My son the same, always viral induced. Not asthma, no allergies, not exercise related.

We always used to end up in A+E or up all night giving 10 puffs salbutevery 2 hours. Then we tried montelukast. I only give it when the first inklings of cough start - usually nocturnal. It doesn't stop the cough completely but it has significantly reduced the duration and severity.

Blackbutler monty she's had a battery of allergy tests and they've all come up negative. Consultant said it definitely isn't triggered by allergy. I'm open to anything and would consider getting her retested but given the medical advice it seems a bit of a blind alley. I work full time, long hours during the week and she's at school and imposing a dairy ban would be highly impractical.

I'm not totally ruling this out but given the current medical prognosis it seems a huge amount of pain for little upside.

twoshininglights someone else has mentioned this to me. I might ask the GP about it. Thanks

applesandpears its usual minimal to non-existent in the day. The flares up really badly at night. Its frustrating as well because its quite often disappeared by the time we get to the GP in the morning.

By the way thanks everyone, for taking the time to read and comment. All your advice and concern is very welcome and it all helps. If I sound a bit dismissive and moody its just because I haven't slept properly for days.

Idk if this will help. I am unwell and easily get coughs and sinusitis. I did a lot of googling and read about how nebulisers used with saline solution are used for people, who have COPD. I bought myself a £40 one from Argos and some contact lense 100% saline solution (not contact lense solution). When I have a cold or at the start of these symptoms, I nebulise twice a day for 10/15 mins. As a result, I have had no cough/sinusitis for over a year.

This sounds hugely stressful for you. Your poor dd. I hope something helps and they get to the bottom of it.

I apologise if this is long.
Sorry you are going through this with your dd.
My son was similar and he was allergy tested and showed he wasn't allergic to anything yet the specialist at the hospital still claims he has allergic asthma my son was given salbutamol and clenil and a nasel spray he was 6 at the time. They do help especially once we got the clenil and if my son is bad we were advised to double up on the clenil and he is a million times better.
Even though they can't diagnose his allergies I wouldn't take him off his inhalers as I know what would happen. He be up coughing for hours and being sick because of the coughing. My daughter also suffers too she is 3 years younger than my son . However her syntoms were different and the blue inhaler doesn't help again by itself .She needs the clenil and again we double up if chest is bad my daughter is a sicker so she will cough till she barfs. As soon as she coughs out comes the sick bowl and inhalers to calm it down. Don't think either of my children have a wheeze but the doctors know the inhalers help so keep prescribing as they do work.
In a bad coughing fit it can take a good few puffs of the blue inhaler for it to work. I'm sure you know how many times you can repeat until the cough settles down.

As your dd is to have an op do you mind if I ask what it's for ? Or what they suspect she has especially if they are saying the inhalers didn't work etc.

You will probably get advice the same over. As we don't know the full details. I have a list as long as my arm that I tried with my children. But mines more towards the allergy side rather than another medical problem that your daughter may have.

Have you tried propping her up at night with more pillows or them stilt things that go at the head side of the bed to elivate it.

It can be shattering and the worry of it all doesn't help. I didn't mind my dcs sharing with me and having cuddles as at least then I am there if they take bad ,and I do get more sleep than worrying about them during the night.They also felt assured I was there and they slept better also. So we were all better rested etc.
Thank fully we haven't had a bad episode for years as we have the inhalers now.

Hope you get to the bottom of it and your daughter gets better soon.

Just don't be fobbed of by the doctors or whoever. My sons doctor told me the hospital wont even see him as he doesn't meet the criteria to be referred. I fought for my son to be seen by the specialist. But because my daughter had not long been born she was seeing the health visitor and she saw my son a few times and I was telling her to problems he has and the doctors just keep fobbing me off.. She was fuming and said for the doctor to ring her and she will explain. I told the doc I had spoken to the HV and she said he does meet the criteria. He got the appointment to be seen a few weeks later.
Just don't give up.its ok for them it's not their child or them that suffers.