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AIBU?

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Original poster

To be panicking re. call back to a&e?

313 replies

Finsmum86 · 18/04/2018 23:32

So took my 3 year old to a&e two nights ago as she managed to get hold of button batteries from a supposedly (!) secure location in our house and I couldn't be 100% sure she hadn't put one in her mouth and they can be very dangerous. I was almost certain she hadn't but better to be safe than sorry of course.

No battery showed up on the x ray so all fine.

Got a call this evening asking me to bring her back in to a&e tomorrow morning and I have spent the rest of tonight an anxious mess. The person on the phone couldn't offer any information about what it's regarding.

Anyone have any experiences of being called back to a&e after an x-ray? I'm assuming it's not battery related as I think they would have had us back in straight away and the doctor said when we were originally at the hospital that they are pretty easy to spot. But sounds like something semi urgent if they want her in at such short notice?

I don't think I will sleep tonight. No point to this post really and apologies for posting in AIBU but appreciate the traffic in case anyone has had a similar situation or knowledge.

OP posts:
Original poster
Finsmum86 · 03/05/2018 15:53

Hi everyone, I'm not happy with how it went today. She didn't have another chest x ray, and her chest is exactly the same - you can hear it and feel it and crackles can still be heard on the stethoscope. The doctor tried to say how she had bronchitis at Christmas and still has a cough now, so I said I understand that but this is nearly 4 years later since she was in hospital with bronchiolitis and there hasn't been a single day since where she hasn't been chesty. I was also describing her poo telling her about how it ranges from bloody mucus, to large bulky ones, constipation, and really pale in colour. She started to say how it can be normal, diet related etc. Until I pulled the photos out and she was like oh that's not normal. So that got my back up straight away as I felt like she wasn't taking what I was saying seriously. Plus, this is in addition to her informing me that the abdominal x ray she had last week picked up a bowel blockage so we have an appointment for peadiatrician and some medication for in the mean time. For me that's even more of a reason to test for CF. It's been evidenced that there is a chest issue and a bowel issue so why not rule it out? She said it's not likely because no family history so I told her that the NHS website said that people are often surprised at a CF diagnosis as there is no family history as obviously it has to be two carriers meeting and having a baby for it to happen. Then she said about how people with CF are very ill and need oxygen etc so I asked about atypical presentation and how many people are not diagnosed until adolescence and even adulthood. She just skirted round the issue. I then asked about cealiacs and she said it can't be that as she would be pale, losing weight and falling off the charts. Well obviously that's not always the case with that either. Her aunty was diagnosed mid twenties as a result of bowel issues and unexplained weight gain which turned out to be extreme bloating. So basically we are at the same point. X-ray in 5 weeks and if it's still there we will be sent to alder hey. Been given a stool sample kit to get some of the mucus to take to the GP so will do that. Also I know her ex means well but he was saying things like 'I think she is fine' which is obviously not helpful when I'm trying to argue my case. I don't know what it is and im not saying it even might be any of the two conditions that i am worried about but there is 100% something not right with her. Friends family and nursery staff have mentioned it too. It's not normal to have a bad chest continuously from 5 weeks old, bowel issues & just to be fobbed off with a chest infection that causes no temperature, illness etc yet requires two lots of strong antibiotics to clear?! Has she had that chest infection since 5 weeks old then? Amd why is her chest sounding and feeling exactly the same? Doesn't add up, and the things that the symptoms point to are not being tested for?! I'm going to speak to my health visitor and GP in the meantime before the next x ray. Thanks all.

OP posts:
housedoerupper · 03/05/2018 16:05

Not sure if you’re aware but you can be tested privately to see if you / your partner are carriers of the CF gene.

donajimena · 03/05/2018 16:17

My childrens father is a CF carrier but I'm not. We were tested due to echogenic gut picked up on a scan. We were told that sometimes there is a spontaneous mutation. Fortunately he was fine but its clearly a possibility.
I hope this isn't the case and wish you the best outcome.

Pilferedminibar · 03/05/2018 16:24

Oh that’s really disappointing OP

So another chest X-ray in five weeks?

RedOrange21 · 03/05/2018 16:30

Sorry to hear you didn't get any real answers. No experience re the CF but you can request a blood test for colieac via GP which might we worth exploring to rule that out?

Thislife2018 · 03/05/2018 17:05

Sorry your appointment didn’t go well today. My DN is a CF sufferer, picked up on heel prick. No one in the family had any history of it. How long do they expect the wait for paediatric appointment will be?

mrsFruitLoops · 03/05/2018 17:12

Sorry all this is happening.

Just waned to say don't even afraid of being seen as "that mum". My mum knew something was wrong with my sister. The gp fobbed her off with "flat feet" diagnosis and only after lots of bugging and saying it wasn't that and she knew it was some high lose did they send ds for an xray. It showed a shadow at base of her spine so they said she had a hole in her spine.
After more bugging and insisting there was something going on the hospital discharged her to another hospital saying my mum was a hypercondriac (sorry sp) and obviously had no trust in the hospital and doctors so could they deal with her in future.
The first thing the doctors at the new hospital did was order a scan (can't remember if it was ct or mri) but they immediately saw a tumor and my ds was kept in. She had a neuroblastoma tumor inside her spine and abdomen.

So if you feel they aren't diagnosing your dd do not be afraid to push and push...ask for the tests and ask again if hey refuse.

Good luck x x

GreenFingersWouldBeHandy · 03/05/2018 17:16

Sorry to hear your news (or lack of it). That must be so frustrating. Keep pushing, keep asking, do not stop.

Be 'that mum' and be it proudly.

BuntyII · 03/05/2018 17:17

Sorry Op. it's so hard when know one is listening to you and it's your child's health on the line.

sexnotgender · 03/05/2018 17:28

That’s incredibly frustrating!
My DD was tested for CF after repeated bouts of pneumonia, thankfully came back negative. She is also small stature, though that is due to her heart condition.

Original poster
Finsmum86 · 03/05/2018 17:40

I know that us parents can often worry unnecessarily and you can diagnose practically anything online but her symptoms are accompanied by actual evidence of something amiss on x rays so it's really frustrating. It's like today, when we arrived at the hospital, she came over and lay on me for 10 minutes, and I said to ex, she's not well but because she got up to play with the toys after 10 mins, he was like no no look she's fine. I asked the doctor to take her temp as I thought she felt hot but she said it was fine. Well lo and behold, she fell asleep when we got home and has just woken absolutely boiling hot and whimpering. Theres a lot to be said about the intuition of a primary carer. Obviously there's every chance that its an unrelated virus but I'm going to keep an eye anyway.

OP posts:
starfishmummy · 03/05/2018 17:45

My son was tested for c.f. when he was younger. It's a simple non invasive test (sweat test) so why not ask for one to put your mind at rest

Laiste · 03/05/2018 17:46

The doctor tried to say how she had bronchitis at Christmas and still has a cough now, so I said I understand that but this is nearly 4 years later

So what are they saying they think IS the problem OP? It seems the majority of your appointment was taken up with them telling you what it isn't and what it ''can't'' be. Surely they're not suggesting they think she's 'just' had bronchitis all this time?!

Original poster
Finsmum86 · 03/05/2018 18:12

That's the thing - no indications have been given other than chest infection but come on - multiple appointments and chest x rays for a chest infection? We have 4 x ray appointments booked for the next 6 months too. With each doctor last week wanting to discuss it with their superior? And in light of accompanying symptoms too? Bowel blockage, suspicious bowel movements, lung consolidation and chestiness, cough and audible crackles via stethoscope for 4 years? The doctors last week seemes a lot more keen for the need for investigations and nothing has changed so I don't really get it.

OP posts:
Teggun · 03/05/2018 19:55

I don't have relevant knowledge to be able to offer advice Finsmum but just wanted to say I can understand your questions and frustrations. I hope you can get your GP on-board and they can push for more proactive investigations.
Good luck

summerlovingliz · 03/05/2018 20:15

Wishing you all the best and hoping you will get some answers soon x

misdee · 03/05/2018 22:10

Argh how frustrating. Keep pushing. It took months for people to listen to me about dd6. Even now with loads of specialist involved I still have to push. One consultant is really dismissive every time and writes up no concerns. Usually have another appointment a few weeks later with s different doctor who picks up issues.

HeedMove · 03/05/2018 22:48

Isnt it so annoying when you get a concerned doctor the first time. Who listens to you and when you go back the second time, its a different one. Who doesnt care and minimises and brushes off everything!

I would go to your own gp now. Explain all and they might be able to refer to paed quicker.

kingsleysbootlicker · 05/05/2018 21:37

I'm another one saying trust your gut. It might be worthwhile contacting the Patient Care Trust, as far as I know they can arrange for a second opinion

Original poster
Finsmum86 · 05/05/2018 22:26

It's just so annoying when you are told categorically, no no can't be that, despite info on the NHS's own website that contradicts that. And told that a condition presents a certain way when there is family history of it presenting differently. I was also told to stop googling as 'the average person can't tell the difference between genuine websites and amateur websites' which is so patronising especially as I'm a uni student so I'm looking at peer reviewed journals etc, which all of the articles (and the various conditions charity/organisation websites) state that xxx should not be excluded on the basis of xxx.
I guess I'm a bit distrustful of my local trust anyway as I was fobbed off when she was hospitalised at 5 weeks old - told that its just a cold, complete with head tilt and 'is this your first baby?' When i went about my acne, i was told that only a dermatologist can prescribe acne medication which is obviously untrue (medication like roaccutane yes but not your general antibiotic tablets). As well as being told that 'you can't be depressed of you are not suicidal.' Hmm Also the trust is always in the press for consistently being one of the worst in the country.
Although terrified, I was sure last week that we were going to finally get to the bottom of these issues, now just feel deflated. I'm glad that we will be referred elsewhere if x ray shows that the shadow is still there in 5 weeks, but can't understand why they won't test for any possible conditions. Will try my GP in the mean time though. As professionals who work with young children evey day, If nursery mention it, its clearly not normal. I may get them to do a little letter too, worth a shot i suppose. The doctor also kept saying 'we can't be sure how long this has been going on for' - you bloody can! I'm telling you and previous doctors visits are surely on record Angry

OP posts:
HughLauriesStubble · 13/05/2018 23:09

This reply has been deleted

Message withdrawn at poster's request.

SlightlyJaded · 16/05/2018 11:45

Hi OP. Have been thinking about you. I hope you have some answers and that the news is positive.

Original poster
Finsmum86 · 26/06/2018 18:28

Sorry for the delay in updating everyone. She had the follow up x ray on Monday last week and we heard on Friday that it showed that the shadow was still exactly the same. Which I knew it would be. So she has a sweat test for cystic fibrosis next week and we have been referred to a lung specialist at our nearest major city. I'm half relieved that I'm not being completely ridiculous in my fears and something is being done but also at the same time I'm upset and frightened that my fears are now a real possibility in black and white.

The consultant also said other possibilities are congenital lung conditions, tumours and other issues so we are still in the dark at this point so it's a case of riding out the investigation.

OP posts:
Blobby10 · 26/06/2018 18:39

The wisest (and smartest!) doctor will always trust a mothers instinct over a textbook or tickbox

Hope your poor baby gets diagnosed and treated soon x

LuluBellaBlue · 26/06/2018 18:40

Thinking of you and your daughter Flowers