Three year old repeatedly admitted with breathing difficulties, no clear diagnosis

[JoyousMauveBear]

Hi,
just looking for some advice really. If anyone has been in a similar situation..

my 3 year old DD has suffered from breathing difficulties since she was 18 months old, this all started when she was admitted to hospital with dangerously low oxygen levels/pneumonia.
Ever since, she has been admitted into hospital nearly every month with low oxygen/being unable to breathe. It’s becoming really stressful for me and I know when it’s coming by the way she is in herself. I have spoke to doctors at the GP and hospital who have literally said to me ‘we don’t know what to do’ ‘you’re gunna have this until she’s 5’. With no real support and no one can seem to give me an answer to why this keeps happening. I’ve been told she’s too young for tests but I know some children who are younger that have been diagnosed with asthma. She is under a asthma nurse who has told me it is not normal for children to be admitted this many times with the issues my DD has, so she put her on a brown inhaler which seems to have done nothing.

not really sure what to do or where to go. I’m fed up of chasing and trying to find things out and getting absolutely nowhere.

I'm so sorry to hear this. We had something similar. In the end it was diagnosed privately as severe and uncontrolled asthma. DC was already taking Montelukast and was then put on Seretide and it was hugely effective. I hope you manage to get some help, as I know how hugely worrying it is.

You need to ask for a paeds referral to get to the bottom of it. My DD was a regular attender at A&E but as the steroids worked she was never admitted. This means no one ever addressed the underlying cause.
Once I spoke to the GP about a referral we saw the paediatric consultant and he sorted her inhalers and gave us a clear plan including meds to keep at home which are not routinely allowed. We have just made a whole year without stepping foot in A&E 🥳

I would pay for a private peads appt and then ask to be referred back into the NHS.

I'd look up the NICE guidelines for paediatric asthma and go to the GP to work out a plan. If those steps don't control it, I'd insist on a referral to paediatrics.

DD clearly had asthma from very young. Thankfully our GP was proactive in treating it, even if they couldn't officially label it as asthma as she was so young. One awesome GP printed off the protocol for me of when to call an ambulance, so how many breaths per minute, with abdominal sucking in, and when 10 puffs of an inhaler hadn't helped.

Eventually DD was given montelukast which was an absolute game changer, she then didn't cough all night and could sleep.

Thankyou for your replies. My next step was to go private. So I will have a look about for places in my local area. I was just making sure I’d not missed a service with the NHS that could have possibly helped. I spoke to the asthma nurse about getting a referral to the paediatrician and basically got told the next step was brown inhaler before they do that!, my partner had taken her in tonight and they asked us what the underlying cause was, but we have never been told. We just keep getting given inhalers and steroids. It’s really frustrating.

My son got bronchiolitis at 5 months old and thereafter every cold went to his chest until he was about 4 or 5. Since then the rest of his childhood he was fine (now a young adult). We used steam inhalation a lot back then - does it make any difference to your daughter? We would literally run the shower on boiling hot and close the windows and door in the bathroom, turn off the fan, and just sit in there for an hour.

Have a look and see if she’s eligible for the pneumonia vaccine. I have ( had ) severe asthma and every cold would result in pneumonia until I had this vaccine. Also as others have suggested get a private referral.

I have tried this many times and it doesn’t work with her. I saw this flare up coming so I took her to the GP yesterday, he told me to do this so I did and it made no difference to her breathing

I had a very similar pattern with my own daughter but she is not long turned 2! We were eventually seen by the asthma consultant who started her on an asthma plan and a brown and blue inhaler, we maxed out on that and at her last visit was decided it was time to start montekulast. We initially had a few teething issues with this but now she is thankfully doing amazing and we’ve had our longest run since she was 8 months old of no respiratory issues and we’re all sleeping again hoorah. She has also had aeroallergen testing to rule out environmental allergies!
i really feel you for, it is such a hard process. It is now outdated pratice to be too young for asthma so please continue to push to be seen by your local children’s asthma consultant!

It is really hard! I’m struggling to process how the hospital seem to think she’s okay when I know she’s not. It’s like I’m just going in circles at this point. I am going to ring the GP tomorrow and try and get in with her asthma nurse again (tried on Friday but got told no appointments). We are scheduled to see her on the 24th as we see her every 2/3 weeks. She did mention if the brown inhaler doesn’t seem to be doing its job she’ll refer to hospital but this was a last option to everything else.
I know these are all professional but I really don’t feel like I’m being heard, we know someone who is a nurse who has said under the NICE guidelines if a child is admitted more than 2 times for breathing problems it should be escalated. Which it has not been. They have never tried to find the cause. My other issue is when she was born she drank my waters (I had sepsis) and her infection markers were really high so we had to stay in hospital for nearly 2 weeks for them to monitor and give antibiotics, but this isn’t recorded on any paperwork I was given after she was born. I’m thinking this may be a cause to the problem with her lungs? I have questioned it before at the hospital but they just tell me it’s not on her file which is really weird

It's worth taking your dh in with you or just send him. I find gp tends to just roll eyes when I take dc in but for dh they roll out the referral red carpet.

@Watercooler I find that too tbh. If DH says something they think it must be true, but if I say it they think I'm anxious. Bonkers.

Would it be worth a day or two with no wheat or dairy? My DC had obstructive apnoea as a toddler and it went away with 14 hours off wheat and dairy. I know it's probably unrelated, but it's a really easy test to try.

I think that if the trouble didn't start until 18 months it's unlikely to be to do with exposure to sepsis, but it's very odd that it's not on the notes.

I will try this thankyou!, booked in with asthma nurse tomorrow and I will push for a referral

oh dear that sounds very worrying. DC1 was diagnosed with asthma at age 3 and was admitted to hospital a few times but nothing like that often. In your shoes, I would ask for a referral to a major hospital with with more specialists eg if you are in the SE, ask for a major London hospital such as UCLH or Guy’s. (I saw the neurologist at my local hospital and she put my symptoms down to the menopause (she was wrong). I then asked for a second opinion at Guy’s and the neurologist there sent me to a colleague who specialised in the specific area I had issues with, the second dr then sent me to a third one with an even narrower specialism and that 3rd ultra-specialised one was able to diagnose and treat me.

Has she been admitted under paediatricians or only as far as A&E / out of hours? It sounds like a situation where a follow-up paediatrician appointment would be sensible, you could ask about this if she is admitted again. Or this seems like a reasonable situation for GP referral to paediatrics, has that been done and rejected or not done yet? Often multiple admissions lead to bad continuity or lack of big picture thinking and someone has to be responsible for tying the situation all together.

Some children with "pre school wheeze" do end up on asthma type preventers, although it's fair to say that because there are no reliable objective tests it can be a grey area. Other causes of recurrent breathing problems should be considered too.

Hi!, only as far as a&e and been admitted onto children’s ward but nothing further from there. I have asked GP for a referral yesterday and they told me I have to speak to the asthma nurse first before I can get a referral as they have to assess her. They’ve upped her brown inhaler and told me to wait for an asthma review🥲. Seeing asthma nurse on 24th of this month so going to push for referral again and see where I get

I think this is sometimes the only way forward with the NHS as it is currently. There is no doubt in my mind that a very young family member would not have a diagnosis to this day, without some pushing from the private paediatric consultant after their one-off appt. They were directed straight back to the NHS (he also worked in the NHS and they didn’t have to ask), but with investigations already under way. Nothing but being fobbed off up to that point, despite parents knowing there was more to it.

This is exactly how I feel, I’m just being fobbed off in every direction I go atm. The asthma nurse was the only one willing to help, we only got in with her about 5 month ago and the brown haler was given as a trial, since my daughters been on the doses have gone up twice. I am looking into private atm and if I’m refused a referral from the asthma nurse I will 1000% go private, was supposed to see her Tuesdays but they changed my appointment to be with a doctor instead🙃