To be so fed up and let down by medical professionals? Any help out there? Child cough.

[Hoppyhops]

Hi, does anyone have any advice? DS (20 months) has been back and fore to the GPs and A&E for croup and coughs since he turned 1 in July. It never ends and he can’t go 2 weeks without being well.

He’s been given Dex steroids at a&e numerous times for stridour attacks in the night- then I was given some to administer at home by the GP. He’s just had his second dose in 2 weeks. Constantly told by GP that it’s viral/upper respiratory infections, but no help given to support us to get him better.

We were once told it could be hay fever, so we’ve been giving piriton everyday since last September. He had a blue inhaler given once- it does nothing. At one point tonsillitis was making it worse so he had antibiotics and the tonsillitis cleared up but the cough never went away.

He coughs through every single night and every morning he wakes at 5.30 with a hacking cough, as if clearing all his chest. When he’s ‘well’, he clears it and it doesn’t come back until nap time. When he’s got a cold, he never clears it and just coughs every 10-30 seconds through the day.

AIBU to be so fed up of this and feel like we should be getting more out of the GP? It can’t be normal and I just hate being told ‘they catch a lot of illnesss’ - yes, they do, I have another child and I know this - but DS has CONSTANTLY got a cough. It’s so cruel watching him hack his lungs up every morning.

I wonder if he's inhaled a foreign body. I think you need to be pushing for a referral for a bronchoscopy.

My DD was also like this. Both my DD were diagnosed with asthma very young at one and two ( I know people say that you can’t but they were) and a regular steroid inhaler transformed things for them. I also used to get awful coughs and colds until I was put on an asthma inhaler in my 40s and they stopped. Can you ask for a referral to paediatricians or could you pay for one private appointment and pick a really good specialist? Also ring the Asthma uk helpline who are amazing.

He needs to trial the brown inhaler, we weren't given it until after the third hospital admission - you need to push for it.

The Poster above has just reminded me, that the antibiotics my daughter took were a much longer course too. I wish I could remember the name of them but I really can’t, sorry.

Can you ask your GP to refer him to a specialist? I’m under an adult Respiratory Consultant, I don’t know what the equivalent is called for children. If he was referred to a specialist they would probably do a CT scan (I presume they do these for children), that would rule out a condition called bronchiectasis, which causes coughing.

Thank you all. At least I know what kind of things I should be pushing for. I am willing to pay for a private appointment if necessary but, again, I’m not sure where to start.

I live in the South Wales Valleys if anybody knows where I should be looking for a private appointment or referral around here?

Two of mine had full consultant support, steroid (brown/grey/purple depending on height of need) inhalers, supplementary oral medicines, blue inhalers by 2. Both had permanent coughs, that included interrupting sleep and limited “colds”. Both love to move/run/climb and are high energy - however had frequent admissions to A&E with terrifying low sats levels (tachycardia, needing HDU input, overnight stays). They’d go from “fine” (or playdates/nursery attending) to limp flopping, chest rattling and gasping in hours. The asthma pathway has been lifechaging for us - but I suspect we only got on it as we’d a horrible few months with DD aged about 18 months when she had several (6+) awful admissions to hospital. She’d 5 now and still on high dose meds but this is the first year we’ve only had 2 admissions!! And neither were high risk, which feels huge.

Beyond meds: things that have made a difference - mine cannot get cold hands feet or chests. Expensive (second hand) coats and snow suits. Wool socks. A good multivit (as their food intake drops if o2 does). Daily exercise dance &stretches (incorporating some kids physio movements).

(and yes we’ve tried removing food groups - with no impact - they are allergy tested and have no allergy’s and antihistimes made v little difference. I hate the level of steroids given in our home, but it’s been transformative in my kids lives. We absolutely had to push for support including keeping symptom diaries, with videos AND constantly making the effort to see GP/A&E to document their symptoms)

A cough that’s worse lying down can be caused by post nasal drip. I live in Switzerland and they’re obsessed with saline sprays and irrigation for the nose because of this

I had my adenioids out, had to go dairy free and was allergic to dust and the stuffing inside stuffed animals 😅 adenoids removal cleared up the worst of it

Might not fit the symptoms but GERD (reflux related) can cause a chronic cough. Poor little lad - wishing you all the best.

Hi op my DS is 3.5 and has been much the same. We have had many A&E trips for croup, infections and terrible coughs and throat issues. He has had extended viral swabs, uti tests, blood tests, inhalers, dex. After weeks of fever over 38.5 alongside the cough/throat/vomiting we have just finished a 3 week antibiotic course of different antibiotics and it has cleared at last. Peads think it is some kind of bacterial infection and hope that is the end of it. Definitely push for root cause investigation preferably with a paediatric doctor if possible.

just ask? Surely you only “push” for something if you’ve met resistance.

It’s a turn of phrase but if it makes you feel better to be pedantic then yes, I have been ‘pushing’ for more for the GP for months now. I am always met with the response that ‘children pick up everything’ and nothing is ever referred. I would call this resistance when my child is not getting better.

When my baby was 8 months old (she is 14 now), she started coughing like exactly what you are describing. We were seeing a very expensive peadiatrician at the Bupa Cromwell hospital at the time for other issues. He melpt telling me to wait it out re: the cough.

then she starting vomitting everything and couldnt keep milk in only could keep rice milk which has 0 nutrients in it. At the last check it turns out she had lost a kg. Which is loads.

i decided to get a second opinion with another pead. She was diagnosed woth pneumonia. Both the GP and the effing paed had missed it.
cue 14 days of antibios, for which i had to wake her up at midnight as they were real 24hrs ones.

then with no iron, shit loads of antibio she had a reactive arthritis in her right arm.

at age 3 we removed her adenoids which have HELPED A LOT with those bloudy coughs / colds she was having.

14 yrs later she is super healthy and happy.

so OP get a second opinion, TRUST YOUR INSTINCTS because 90% probability rhat you are right.

This sounds so frightening. We are fortunate that his SATS have always been ok when admitted to hospital- only slightly low oxygen levels when at rest. I think this is also part of the reason why nothing more is ever done though.

Yes ‘wait it out’ is a very common response, it seems. Thank you for sharing your experience and I’m so happy to hear your DD is happy and healthy now.

When I brought it up with the GP he basically said “we’d need to do a tube down her throat, are you REALLY willing to put her through that?” and shut us down.

Paed consultant said:

• Longstanding wet/chesty sounding cough is usually not asthma or allergies
• Inhalers won't improve the condition
• Any wet cough lasting >4 weeks needs looking at
• Chest xray will usually be clear with PBB so no point ordering one

I do have bad hay fever and mild allergies, and our child does have hay fever, but this was quite a different cough to the usual dry-ish one.

Try eliminating dairy for a few days to see for sure whether it's related.
Only, dairy sensitivity is very common. My ds used to get night time coughs which stopped after I cut out cows milk. That included anything with dairy in it too so no yogurt, cheese and some biscuits either. He was on oat milk for a while and no night time coughs. Then I tried goats milk and he's been fine with that.

Might be reflux or an unsafe swallow (aspiration).

Ask for a trial reflux meds and referral for swallow assessment.

A few years ago I had a cough that lasted three months and was constantly fobbed off by my GP and a walk in clinic. They kept telling me it was viral and would resolve on its own. I finally insisted on a referral to a respiratory consultant and they did spirometry tests and a chest CT. I had what’s called ground glass opacities in my lungs, which I was told is scarring from untreated bacterial bronchitis or possibly even walking pneumonia.

After a couple weeks of antibiotics and a steroid inhaler the cough finally went. I had to have follow up chest CTs every six months for 18 months after that to ensure it wasn’t anything nastier like cystic fibrosis, and I am now very prone to chest infections and prolonged coughs. At the first sign of any cough or a feeling of a chesty cough brewing, I use my steroid inhaler every day to help lessen the severity.

I’d be asking for a blood test, a chest CT and an allergy test to help pinpoint what is going on. Your poor little DC should not have to suffer like this, sending lots of empathy.

This really does sound so familiar - he is so mucusy!

It sounds more like asthma to me - he sounds exactly as my child was. Inhalers aren't really effective under 2 years old, but it's all you can really do unless he is prescribed a nebuliser. My child had to use one 4 times a day and it made a big difference.

Yes this is worth trying, I think. My mum has constantly been telling me to try goat’s milk as he’s a red head and my red headed cousin needed goats milk when he was a baby. I thought she was mad but there could be something in it.

Thanks all for your help. I need to go and look after DS now as DH is off to work. Will be back later. All help is so very much appreciated.

One of my cousins children has an issue with dust mites, perfume and chemical scents. Hope you are able to finally resolve things 👍