DS possible heart or lung problems - not happy to wait - WWYD?

[FranTan]

Hi everyone. Hope this is the best place to post. Please let me know if there's somewhere more appropriate.

Ds who is 4 had blue lips so I took him to see his gp. We have not had great experiences with this gp in that she seems to lack confidence. Just thought I'd throw that in. She referred him for a chest xray which showed a lack of pressure in one of his lower lungs. Radiologist suggested anti biotics to treat possible infection. There will be a repeat xray in another couple of weeks. Waiting for this to come through.
He also had an ecg last week which showed an extra beat and was a bit fast. My gp admitted she did not know if this is a problem as it might not be in adults. Its outside her area of expertise.

My ds has always held his breath a little and grunted when he breathes, especially in the winter. This is intermittent and docs have not been too concerned in the past and said it might be a little post nasal drip.
Ds has an appointment with gp on 15 nov where we will decide where to go. Gp said she's not treating as urgent now as it's likely he has had this for some time. He's an otherwise healthy boy but has complained of tiring easily during exercise (I put this down to excuses). Gp wants to keep 2 balls in the air with regards to heart and lung but has suggested we research norwich or cambridge for possible referral as she doesn't know much about the paed cardiologist teams there.
My husband and I were not happy with the speed/uncertainty of this so we began researching how to go about this privately. It would appear most private consultant paediatricians will not look at children without a gp referral. We've also considered talking to another gp at the practice bit don't know if this will achieve anything. Perhaps we need to keep out gp onside?
We're really confused about what to do. Obviously we're concerned for our ds, want what's best for him and feel it's not happening quickly enough. Gp said until we get a diagnosis, should he collapse, we should take him straight to A&E. Surely we shouldn't have to wait for this?
Any advice or experience gratefully received.

I just wanted to add, would really appreciate no horrifying stories as am already anxious. More around practicalities please.

Hi Op. My dd2 has a congenital heart defect, diagnosed as a baby, so I do know a little bit about the awful anxiety. First of all have a .

Now then - your GP sounds crap quite frankly. I would go and see another and say you want them to refer you to the local hospital paed team. They can then take a look at ds and advise about further referrals if needed. The extra beat - dd2 has this sometimes. The advice we've had is not to worry about it. Nothing you describe sounds particularly alarming tbh and the most positive thing is that ds has been happy and healthy up to now. Children his age do sometimes complain of fatigue - you could be right about the excuses. My dd is 12 now and has always had normal exercise tolerance. She has a narrowed heart valve btw and her lips and chin occasionally went blue when she was small in cold weather. Her defect is minor and unlikely to ever cause her problems. It;s just a part of her. It could very well be that your ds has had a chest infection which is resolving. I do think though you need to see somebody who DOESN'T say 'this isn't my area' - so get a general paeds referral and take it from there. The paed cardiology teams will often do outreach clinics at more local hospitals. That's where dd has been seen.

At our GP surgery there is a GP with an interest in paediatric medicine who does all the newborn health checks etc. DS had a problem, unrelated to your post, and our GP advised us to see him instead and it was the other GP that got us referred to hospital. Maybe worth calling the surgery to see if they do anything like that? I was completely unaware of it as an option where we are until DS clearly needed an expert opinion.

I hope you get a referral and some answers soon. It's not nice when you don't feel confident with the people you're dealing with

I might be able to help a little on the Cardiac Team at Norwich-if you PM I will explain.

Oh thank you everyone!
Ihearttc how do I pm you? Sorry

Where my post is at the end towards the right hand side it should say:
Add message Report Message Poster

If you click on the Message Poster bit you should be able to send me a message I think.

Just thought it might be a bit easier as we've had some experience and live in the area x

I will message you if thats ok?

Please do pm me ihearttc as I dont seem to have that option. Am on my phone - dont know if that makes a difference. Many thanks

i would push to get it chrcked out thoroughly.

as an aside the norfolk and norwich is my local hospital, ten mins from me.
my ds3 had kawasakies diesease (v rare) and he had to have his heart checked out, various scans and ecgs. the staff at the cardiology? dep were lovely.

i have had all my kids thete and various a&e visits and have only had good experience, most recelty when ds3 had a serious eye injury they were brilliant. so i wpuld happily recomend the n&n :)

op at the top of the page you should have a little envelope. if you get a pm therr will be a red dot on it.

click on there to go to your inbox :)

Ive messaged you but just in case you can't see it what it basically said was it depends what sort of tests your GP wants him to have done because Norwich hasn't got a peadiatric Cardiology dept. They have a visiting Cardiology Consultant from Great Ormond Street called Dr Graham Derrick who is lovely but he only comes once a month so as you can imagine they get really booked up.

We had to go to GOSH for my little boy to have an echo done as they weren't able to do pead echo's at Norwich and he had a CT done at GOSH at the same time.

So if you are closer to Addenbrookes (which is where I presume you mean in Cambridge?) then it might be easier/quicker to go there?

Norwich is amazing though-my little boy was premature and the NICU staff were truly brilliant. We have had so many appointments over the last 3 years in the Jenny Lind (which is the childrens dept) and I can't fault any of the staff. I wasn't very impressed that we had to go to GOSH to get him diagnosed but what he has got is quite rare.

Oh and a GP should send a private referral if you request it-I don't think they are allowed not to.

Before we managed to get an appointment at GOSH I researched Cardiologists and found one I wanted my son to see and asked our GP how we would go about it if we wanted him seen privately and he said he would just call the consultants secretary and send a letter over with all the details.

This is all great stuff - thank you everyone. Its all so new and despite working for the nhs myself, it's confusing to say the least. And political too.
I'm in kings lynn and so probably equidistant to cambridge and norwich. Now I at least know something of the N&N and clinics.
Thank you also for not terrifying me with details of what itcould be. Ive resisted googling symptoms so far and previous experience has sent me into a spin.

And thank you for the pm. Have learned something else!

Just wanted to say - Cambridge have a specialist heart and lung hospital, Papwoth hospital, it is one of the best in the country, I think.

While consultants won't see you without a GP referral, in my experience if you can identify the consultant you want to see and where they practice privately, then you can book an appointment and phone your GP for a referral telling them the fax number of the consultant's secretary and the date of the appointment so that the referral gets there in time. That means that you don't have to wait for a GP's appointment.

If you don't have private cover then consultants seem to be willing to see you on a self funded basis and then refer you back to themselves at their NHS clinic, so you only have to pay for one consultation.

I don't think that Papworth does paediatrics - it looks like the East of England cardiothoracic services are covered by London hospitals www.eoedeanery.nhs.uk/medical/page.php?page_id=830.

spookedmakerel - Papworth is just down the road and was right under my nose, thank you. There is no mention of specialist peads dept. Do you think they would treat children also?

breatheslowly - thank you I didn't know about referral back into the nhs clinic.

My best bet might be to try to identify a consultant at papworth and see if he practices privately in anticipation of long nhs waiting list, in the hope he refers us back to clinic if necessary. Perhaps I can arm myself with this information, call the surgery to enquire if there's a gp witha sspecial interest in paeds and ask them to pass on any info when it's requested. Does this sound like a plan?

breatheslowly think you might have anticipated my question.

You may run into problems if the consultant wants to run tests - in that you will end up waiting the NHS time for those tests if you are referred back to the NHS (and tests can be really expensive privately). But at least you would have an idea about the urgency of it. I am quite surprised that your GP is attempting to deal with this herself, but I am not a doctor.

I also have great experience of the paed cardiology team at the NNUH and the NICU team, dd1 had a concerning heart murmur and we were seen v quickly by a neonatal Paed witha specialism in cardiology and then followed up by a Paed cardiologist.

Everyone v helpful.

bigwellylittlewelly-Im wondering how you managed to see a pead cardiologist at NNUH cause we were told there wasn't one only Dr Derrick who comes up from GOSH. We were seen by our son's neonatal pead anyway and he then refered us to GOSH...we couldn't even have the echo done at NNUH we had to go to London.

I feel really bad if Ive given the OP the wrong information now.

DS2 is nearly 3 and we are still under GOSH so it wasn't like it was ages ago. He has got something very strange wrong with him though (not really serious just a bit bizarre!)unless that was why cause I was obviously trying to avoid going all the way there unless necessary and was told they had no pead cardiology only general peadiatricians who deal with cardiac issues.

Im so so sorry FranTan if Ive given you the wrong information.

We were put under the care of a Dr Roy who is a neonatal Paediatrician with (as I understand it) a particular specialism in cardiology. Our dd had a heart murmur and she had some tests done by another dr as well (a scan?) when she was just a few months old. Sheis now 3.5y.

Someone in NICU at the same time had a dc with a severe heart condition and he was shuttled back and forth between GOSH and NNUH.

Her heart issue was insignificant compared to the other issues she has so I'm afraid I have forgotten the other doctors name.

I think you're right - they don't have a team based there.